a caregiver spouse in a sweet moment with loved one The plan was to grow old together – holding hands, in rocking chairs on the porch and enjoying the grand-kids.  For many couples, this part of the dream has not quite come true.  For those who have found themselves in the all too common position of being a caregiver to their spouse – the story has changed.

Over 56% of the 50 million family caregivers are caregivers for a spouse, according to the National Family Caregivers Association.  This shift in the relationship can be difficult and many spouses find themselves unsure of how to deal with the challenges that come with the new role.

The Challenge of Loneliness While Being a Caregiver to Your Spouse

There is a big difference between being lonely and being alone.  Many spouse caregivers talk about the loneliness of being a caregiver – even, or perhaps especially, when their spouse is right there with them.  When the person you married is no longer able to be as present in the relationship – the loneliness can feel worse than if they were not there at all.  Often there is a sense of resentment and anger that they did not hold up their end of the bargain.

The Impact of Resentment while Being a Caregiver to Your Spouse

How do you prevent this from impacting the care you provide?  How do you maintain the marriage while having to shift your role?  One of the most important things to do is take care of yourself.  Stress and burnout have a significant impact on family caregivers, and that stress can impact the care you provide.  By allowing others to help, having an understanding that you should not do this alone, and taking regular breaks from your role – you allow yourself to be in a better place when you are providing the direct care.

Consider giving up the tasks that are the most taxing or perhaps cause the most stress on your relationship.  Having a paid caregiver do the bathing, incontinence care and feeding for example, can allow you to get back to being in a marriage with your partner – focusing on sharing, visiting or just being together.  Try to allow yourself to time to just “be” with your partner – not always focusing on what you need to “do”.

Are you a caregiver to your spouse? Please share your experience and stories here, as we all learn from each other…


  1. Janet DohertyAnderson

    My husband, Ralph (Andy) Anderson had MS since diagnosis in 2002, walked with a cane for 8 years, then started losing his balance, falling, and also losing his mental faculties through Dementia and Macular Degeneration. He had been exposed to Agent Orange in Vietnam and developed Parkinson’s as well. His son Michael helped a great deal by paying for Care Givers so I was not alone in this task.
    We also had the aid of Hospice, early on!
    I loved this man dearly and was able to share in movies and concerts with him, even in our Senior Club although his participation was quite limited.
    The Care Giving was very difficult for me, but I did acquire some nursing skills after he needed help from April of 2010 until his death in October of 2011. So my Care Giving lasted for about a year and a half. We had no family or relatives nearby and THAT was the hardest of all. Michael, my stepson was a busy lawyer who lived 75 miles away…..but bless his heart, he came to help as often as possible, probably about twice a month.

    You just have to “hang in” there and be a spouse to your spouse through all the trials, but only with the help of our Almighty Father in heaven.
    He gave me the strength and courage to carry on!
    Now Andy is at peace with the Lord, which he certainly earned as he was the most generous, kindest man I have ever known.

    Janet Rock Doherty Anderson

  2. Diane Wilson

    Hi Janet, I have been a caregiver for my husband since 2000, when at the age of 44 he had a surgery that somehow caused him to get very sick and ended up leaving him unable to care for himself. My question is what did you mean when you said you got hospice involved early? I’ve always thought they weren’t an option til its 6 months or less to the end. Am I wrong?
    Thank you and yes I absolutely couldn’t do it without God or my husband’s generally good nature.

  3. judy wyckoff

    hi there my husband was in the vietnam war he got agent orange from there. he was on dialysis for 5.5yrs.got a kidney transpant in 2010 he kept falling down and losing his balance. call the ambulance all the time. i care for him thru thick and thin. i pray alot he has been in several nursing homes.now he is in one 15miles away from his family but i go see him he can’t see no more he is very weak.but i love him with all my heart. i need yours prays so i can preay for your spouse or you.

  4. Joellen Simpson

    I have been in a difficult marriage for 34years and my love for him has disappeared, but I still care for the guy. He is handicapped due to weight issues and our health insurance not willing to pay for bariatric surgery or to have a lump removed off his thigh so he can have knee replacements. Therefore, he cannot walk very far and I am constantly waiting on him to get whatever he needs. I have to do it all, carry in the groceries, put his socks and shoes on, put his power chair in and out of the van, pump gas, plus cleaning, laundry, dishes, clean up after him, etc., and go to work everyday. I have let my health go and I am now experiencing back pain from the bending and lifting. Most days he is very depressed and I try to keep him positive and me too. My husband does still work everyday when he can. But with his walking issues, his working days are just about over. Since he is considered self-employed, when he doesn’t work, he doesn’t get paid. I don’t know what is going to happen to us when that day comes. Please keep my husband and I in your prayers. We need all the help we can get. Thank you!!

  5. Tom B.

    The post here are wonderful. I am also a care giver to my wife. Chronic fatigue, Fibromyalgia,
    Parkinsons and hearing impaired. I do all the shopping and cooking and cleaning. Also have a fairly demanding job. I don’t mind the cleaning and cooking etc and I don’t resent her. She is a kind person who was handed a bad hand of cards in life. What eats at me is the loneliness. There is no romance and I gave up trying. It is so different when you are their caretaker, nurse etc, than when you were their sweetheart. I used to try to talk about deep things, feelings and I would hear her snoring. Life happens. I don’t have the answers. I am afraid for me it is just living one day at a time and finding a moment of joy by myself, like a sunset or a good meal when I am shopping. I wish you all well.

    • Caryl

      Tom, you are so good to reply and acknowledge so many posts. It’s good to feel any support, and I can feel it through your efforts to comfort others.

  6. John Wolferman Rice

    Being the care giver to my spouce age 70 and I age 57 has left us unable to move into a Senior Building age 62 + after being told a care giver cannot be a spouce. I need to know if there is such a law.

  7. Kathleen

    I work fulltime and care for my husband in the mornings, lunchtime and evening. His health keeps going downhill every few weeks. he has had 6 surgeries/procedures in less than 5 years. I am 61 and he is 66. I feel like my “life” is on hold. If not for God in our lives to give us both Hope for the future, it would be really miserable. I go through guilty feelings alot, thinking about how life will be when he passes on to be with Jesus. People have told me that, that is part of the survival mechanism and it’s natural to “plan ahead,” even though we don’t know what lies ahead. I feel lonely, frustrated with the situation and just sad that my needs are not met due to my spouse’s illnesses. There is no one or anything I can argue with, because this is just the way it is. it helps to read other’s posts, who are going through the same things. I wish the best to you all. Kathleen

    • Tom B.

      Dear Kathleen,
      I a sorry for your situation. It does seem like Life delivers the opposite of our plans, the opposite of our desires. I understand the feeling of your life being on hold. When you get in a jam like this in life, there are well wishers who pass out sayings like salesmen at the county fair. No one can really know what you are going through or how you feel. I expect you will make it and I expect you will have done your best. As the the way Life will happen in the next chapter, well, that chapter also belongs to you.

      I wish you well. It is time to get my wife up and make dinner. It was a long and gorgeous day today, working at a radio site on a high mountain on the coast of Washington State.

      With kind regards,


  8. Julie Matthews

    I am a 37yr old wife who is the caregiver of a soon to be 40yr old husband. He has diabetes II, congestive heart failure w/a defibrillator implant & in Oct 2013 we found out he had Stage 4 Chronic Kidney Failure which has professed so fast that he is now in End Stage Renal Failure & started dialysis this week. Now we are both working full time & he’s not disabled but i have to take care of the meds, the supplies, the machine hook up (he’s doing home peritoneal dialysis), change his catheter dressing daily b/c the surgeon I put it too low & he can’t do it himself. I am also pretty much a single parent. My main issues are loneliness, (due to health & depression we haven’t been intimate for 2 1/2 years), his anger at everyone including me and our daughter, the guilt that I have for wishing things were different & his guilting me about everything from getting to take a shower when he can’t to taking any time for myself since there is so much to be done. I struggle with a bad back & anemia so I’m exhausted all the time as well but I’m last to bed & first up. His assurances that “You don’t know how it feels.” I have to fight to get him to do his dialysis. Sometimes, there is a lot of anger over refusal to take blood pressure! It’s a struggle every day & I’m the one who gets the sharp tongue. I am no longer a wife. And the worst part is that he’s mean to our daughter b/c he’s angry & doesn’t feel good so he lashes out. He can’t see how this is hard for her as well & won’t give her any slack. Honestly, unless you have an extremely loving & considerate spouse as your patient, you shouldn’t be their caregiver, it ruins any relationship you have.

    • Tom B.


      I am my wife’s caretaker. I don’t mind the work, in addition to a regular job. Cooking, cleaning, shopping, that’s easy compared to the loneliness and lack of intimacy. I used to love to take her out for a nice dinner, talk and walk along the waterfront. The emotional, romantic tie between a man and a woman is the prime reason to marry for me.

      You will probably hear sermons about what you need to do, what you have to do and they mean well. It doesn’t mean I would ever abandon my wife, but sometimes life hands you a shit sandwich and you are stuck. I think it is more honest to admit your present situation, know that it
      is not forever, take as good of care of him and yourself as you can and watch comedy on tv when possible. It is not “I am duty bound to this” that will get you through. It is laughing and
      hoping for a future. Make yourself a nice meal, take a bubble bath. In a situation like yours and mine, two people are in trauma. The caretakee and the caretaker.
      With kindest regards,

    • Tiff

      I am in the same exact situation as Julie Matthews…I am at the lowest point I have ever been since this all began with my husband in 2009.

  9. Michele Funderburgh

    Just tired…so so tired. My husband needs a liver transplant. I have a 2yr old. Please pray for me and my family.


    • Tom


      I am so sorry. I will say a prayer for me and I wish you well.

  10. dorie lejeune

    Have you ever seen or heard a wife who is caregiver to a husband who is ill for a long time and now the husband is in hospice care , the husband has big families from the first wife but no one care to help or visit him ? I am by myself doing all the job. looks like he got no families and friends in this world. we are married for 17 years, his families wants only money from him, same to his friends, my husband is a very generous man, he do not know to say no to everyone, I can not afford to bring him again to the nursing home because he is not qualified for Medicaid, , he went for a theraphy to a nursing home and got a lot of bills from them, why is it that those peple who needs help from the gov, like my husband situation can not get help from the gov,

    • Tom

      Dear Dorie,
      I am my wife’s caretaker. I can relate to you that it is a lonely job.

      It seems to me that the one who needs the protection and care in this situation is you. A husbands’ job first and foremost is to protect and care for his wife. He has no business giving relatives money when you need it. Talk to the attorney about becoming your husbands’ power of attorney.

      You deserve kindness. The gig of a caretaker is lonely and harsh enough.

  11. Elizabeth

    Hi Everyone,

    I have been a careguver for my husband for about 6 years now. He used to own his own business but, due to his health issues, he had to retire much earlier than we had planned. He is 16 years older than me; yes, I know, but we have been married for 29 years and have raised our two children together. He denies that I am a caregiver; thinks all the things I do for him are “normal” duties for a wife. He is having cognitive issues now that he denies, and he gets very angry if anyone mentions to him that he is having trouble remembering things. He hates that he has so many health issues; chronic leukemia, spinal issues, a deformed leg due to infection, and the inability to walk without a walker. I have been doing all the chores, banking, shopping, cleaning, making appointments, etc. etc., while working full time for several years. He is in denial of the fact that our marriage is not meeting my needs and gets very angry if I try to explain why I am not as enthusiastic about him and that I don’t think of him in an intimate way anymore. We haven’t been intimate for several years now. He calls me at work to tell me what he needs and to stop at the store and get him this and that, and then when I come home he expects me to be attentive to all his needs and his desire for conversation. He is also not a happy camper when it comes to his situation and is grumpy and irritable most of the day. Then he forgets that he said rude things to me and claims he doesn’t remember any of it.

    I am not “In Love” with him anymore, but I love him as my long-time husband. I can understand what others are saying about loneliness and being alone. I gets so tired and depressed sometimes and he doesn’t seem to understand that. When other people come around, he will act all cheerful and happy but the minute they leave, he goes back to his depressed state. He falls asleep when I talk to him and then claims that he is listening.

    Any advice? I have been doing this for a long-time now. I believe that as a good Christian I need to take care of him, as he was a good husband and provider, as well as a loved parent. I am so sad most days due to this situation.

    • Tom

      Yes, I do understand. Care giving can wring a person out like a dish rag and there are loads of well wishers with advice about how we should deal with it. Usually, it is easy for them to say as they have a date night with their spouse once a week and might even have a sex life and sometimes even have romance with the one they married.
      I don’t look down on these enlightened. I just think that most of the time they speak of what they know not.

      The biggest loss for me is the romance. That daily feeling that someone wants you and loves you.
      That has been replaced by putting her down for naps and making her meals.

      Thanks for the good post on here. I get it…also.


  12. Susan

    Hi All,
    It sure helps to read this. After a whirlwind romance, I married my husband just shy of 3 years ago after going through a devastating divorce. We just knew we had found the one!!! We were like teenagers, kissing and crazy romantic. Just shy of my 50th, we were both active and young for our age. We had some difficult months however, with his teenage boys, but our intense connection kept us going. Well, ten months into our marriage, he was diagnosed with cancer and is terminal. It has been devastating. I work full time as a teacher, as well as caring for him. He is unable to work now, in bed 95% of the time, physically a shell of the man he was. I feel so lonely, cheated, and I miss the man he was. I am so sad. Our time was so brief, sometimes I have trouble remembering him before the illness. I don’t have to tell any of you this, you all know it’s hard. I just wish I knew why. Anyways, thanks for letting me vent and share. Bless you all in your journeys.

    • Tom Brosman


      I am sorry for your loss. To lose a soul mate must make the angels weep. I will attach a short story I wrote about such a loss. I wish you well in your life.
      Tom Brosman

      By Tom Brosman
      [email protected]

      The old man was dying and he knew it. He could feel his body shutting down. There was no need to awaken his wife as she slept peacefully beside him. This time, the paramedic from Aberdeen could not bring him back. “I’ve enjoyed my life,” thought Henry Chalmers, as he lay in the stillness between midnight and dawn.

      His senses were keener now as death approached. He felt the bedspread, as if for the first time and noticed that the lace fringe around it had a snowflake pattern that he could make out with his fingertips. The arthritis that he no longer felt in his hands and fingers had robbed much of his sense of touch. “Strange, I can remember back when I was a baby, feeling the blanket my mother covered me with in my crib.” He could smell again, smell each distinct odor in the room. He could smell the orange cleaning fluid that his wife used to clean their bathroom and he could smell his Old Spice, even after his shower, it was in his facial pores, from decades of use. He could see clearly now, without his glasses and with the illumination of the nightlight. He could see every grain in the oak dresser across the room and he could even make out the small “D. C.” where his nephew Danny had carved his initials over three decades ago into the new dresser when the relatives were over for Thanksgiving. There were family pictures across the wall and a fishing picture of him and the boys with a stringer of rainbow trout from the Queets River. The biggest fish weighed four pounds and Janie had baked it, head and all, in a big blue roaster, and served it on a turkey platter. The boys felt like kings of the jungle when they saw the fish they caught, cooked with herbs and ready to eat with the steam rising from the leviathan of the Queets River.

      Henry never regretted marrying Janie, though deep down, he felt she was too good for him. He lived for her touch and the smell of her perfume. Every day, since she was a girl, she had worn the same fragrance, “Sweet Blue Lilacs”. He had never smelled it on a woman before or since he met her and to him, it was just one more thing that made her special. Only Henry Chalmers’ Maker knew of the times when Henry was alone and the tears streamed down his cheeks as he thought about how good Janie was to him and how lucky he was that she was his.

      Henry looked again at the dresser and saw his usher’s badge lying beside his watch, it read “Henry Chalmers, Head Usher”. He was proud of that badge and since he had retired from the railroad, it was the only real job he had. Henry enjoyed helping the people now, as they came and left the church. No job was too menial for the man who once drove trains. “I expect it is because of the ribbons and what I owe her,” thought Henry. He could see both ribbons in a picture frame on the wall. He was lying closest to his ribbon and he could make out “H” written in Janie’s handwriting and the other ribbon, with the capital J, in the distinct way Janie made her J’s.

      Henry’s tears dropped quietly on the linen pillow case as his mind wandered back in time, to when he met Janie. She was sixteen and he was nineteen. She was sitting in the bleacher in front of him with her girlfriends at a baseball game. Hoquiam’s team was pounding the pride of Aberdeen, but Henry lost interest altogether when the blue eyes of Jane Marie Swanson settled on him. She had his attention then, and Janie, in over thirty five years, three sons and a railroad career, never lost it.

      Henry was a young, cocky boy who cared little for anyone else before he met Janie.
      They dated for six months before Janie’s dad gave them his blessing. Henry got a job at the BN Railroad, as an assistant fireman. It was hot filthy work, but he stuck with it and
      before he retired, he had done most of the jobs on the rail line, from shoveling coal, to driving trains, to managing the rail operations in Washington and Oregon. Henry grew
      up as a man in the railroad and found his reason for going to work, in the click of the tracks and the sound of the engines. Janie found her reason in making a home for Henry and the boys and giving of herself to her family, neighbors and even people at the nursing home. Henry thought it was a waste of a good woman to take food to old people and give a kind word to those she met.

      The railroad man felt like the king of the earth the day he was made engineer and he stood in the cab and steered the big engine through the turns in the tracks between Seattle and Portland. He had little use for weak people, but he did allow that if Janie wanted to show kindness to the undeserving, that it was the only weakness he could
      find in his wife and it was her business. The tears were falling quickly now, down the rugged cheeks that were aged with the wind and the sun, from eyes that had looked down a million miles of rail.

      Henry remembered how arrogant he had been, even after their marriage and how he felt that a paycheck was his part of the equation and caring for the family was Janie’s part. And care for him, she did. Janie loved the railroad man more than life itself and she spent every day showing him that he was her darling. Henry Junior was born first, then Mike and Danny. Mike became a railroad man like his dad and was a brakeman between Seattle and San Francisco for the BNSF. Danny was a preacher, which made his mama happy and Henry junior, the spitting image of his daddy, was killed in a firefight in Nam. It was Henry who fell to pieces at the death of their son and it was Janie, as always, who picked the pieces up. But then, Janie had always been the giver in the marriage. Where Henry was stingy with people and life, Janie was loving and kind to them, but that was before the ribbons.

      By the time Henry was fifty-five, he and Janie had their house paid off and Mike and Danny were on their own. The BN had been good to Henry and he was eligible for a good retirement, in fact they offered it early. For most of his life, Henry secretly scoffed at other men. “If they would only have worked hard like I have and married a girl like Janie, they would be as successful as I have been.” But the future and the ribbons had changed how he felt towards his fellow man.

      On his fifty-sixth birthday, his boss from Kansas City called and offered him an early retirement. “Henry, take it, you have earned it. You have your health and you have your wife and home and it’s time you enjoyed life” Henry accepted the offer. He only had two months left at the railroad before he retired. Henry put on his jacket and headed home early, to surprise Janie and take her out for a good dinner. “She could use a nice dinner out, she’s been pale lately.” Henry drove the big Lincoln home and parked in front of the nicest house on Cherry Street in Aberdeen. His motor home was covered for winter and he figured he would “uncover it” and Janie and he could spend the winter in Arizona, like they had planned to do for decades. Henry quietly let himself in to surprise the woman who was the center of his world and his reason for being. There was a noise from the bathroom, a retching sound, as if someone was throwing up. It was a sound that Janie had managed to hide from him for the past month.

      Henry rushed to the bathroom as she flushed the toilet and walked toward him. “Hold me Henry, hold me as you have for thirty five years. I want to lose myself in your strength. I am so sorry, Henry, I have hidden it from you as long as I could, but you would find out soon enough. I have been to the doctor several times in the last few weeks. Henry, I have stomach cancer. It is terminal. It has gone too far to operate. Henry, I am so sorry to leave you alone, it’s the only thing that troubles me. I have enjoyed my life with you and our home and family. This is the first time that I am at a loss as to how to love you and what to do for you when you are lonely and I can’t be there.” The woman sobbed in the big mans arms.

      Henry was losing the one reason he had to live and all of his strength could not change the outcome. He called the doctor himself, feeling that a superintendent from the BN should get better service for his wife. Henry retired the following Monday. He nursed Janie at home until she had to go to the hospital. There were two people in pain on in the
      house on Cherry Street, in Janie’ last weeks of life. Her pain was from cancer and Henry’s was from a broken heart.

      The funeral was held at the cemetery, on a hill above Aberdeen. There were many relatives and lots of people whom Henry had never met, with stories about his wife, who had cared for them, or given a kind word when it was needed the most. Henry looked down the hill to where the railroad tracks snaked through the woods north towards Forks and for the first time since he was a young boy, he felt helpless in life.

      In the weeks that followed, he did allot of soul searching. While he had been investing in himself, Janie had loved others. He learned to watch soap operas and eat TV dinners and for once, he showed kindness to people when he was at the store or on a walk. Henry had no idea of what to do with himself. Janie’s death had changed all the rules that he had made up about life. He remembered her kindness and her kisses and her pot roast and her figure…and he spent his days in loneliness. Finally, when he could grieve no more, he started attending the church he had made fun of, where Janie had gone every Sunday. He volunteered to be an usher.

      Six months after the funeral, on a soft fall day, the postman knocked on his door with a special delivery. He signed for the letter and sat down in his chair. “I already got my railroad check this month and I even sent a hundred to that pastor son of mine. What is it this time?” Henry put on his glasses and the hands that had steered a thousand tons of steel along two narrow ribbons, starting shaking. There was no return address and the letter was addressed to “Mr. Henry Chalmers, 1311 Cherry Street, Aberdeen, Washington” in Janie’s handwriting. With trembling hands, Henry read a letter from beyond the grave.

      “My Dear Henry, as I write this, I am in my last days of life. The cancer has taken its toll. I am counting on you to have learned allot about life these past six months. My sister from Olympia will mail this, six months after my funeral. Henry, life is so much like a church potluck. Each of us brings a plate of food to share. Most people bring at least enough for themselves and hopefully for several others. Henry, you always brought an empty plate in life and I made up for your lack. I didn’t mind it, you were a good husband and I have loved you dearly. You have been alone now for six months and I am hoping that you love people more and try to take care of someone besides yourself. You are my soul mate, Railroad Man, and I will meet you on the other side, but until then, I have one last gift for you. You need a wife and I took allot of care to pick her out for you. In this envelope you will find a blue ribbon with her initial on it. Please dress up in your suit and pin the ribbon on your lapel. You are to meet her at eight in the morning at Duffy’s Restaurant in Hoquiam. Buy her breakfast, date her and marry her. She will have a ribbon with your initials on it, pinned on her dress.” Across town, as Henry read his letter, another postman delivered a similar letter to a woman named Jennifer Layton, who had lost her husband to a heart attack years earlier.

      Two senior citizens, as nervous as school children on their first date, met the next morning. Henry recognized Jennifer from church and Jennifer had seen Henry ushering the past few months. Henry and Jenny dated for several months. Jenny was a loving woman who was full of fun and she found Henry to be as caring and loving as any man she had ever met. The wedding was a simple one, at the Lutheran Church, conducted by Pastor Chalmers, a visiting pastor, who held Henry’s hand and the hand of the bride and conducted the vows, as his mother would have wished them done. The Chalmers honeymooned in California, where the weather was warm.

      Five summers had come and gone. Five winters of soft silver rain had fallen across the Harbor and Henry and Jenny had found comfort in each other. Both of them, every day, thanked Jane Chalmers for her final gift to them that had brought so much happiness.

      There was a wall of white light in the room now and as Henry looked at it, he saw a door opening into it and a lone figure, waiting, beckoning in the light for him to follow…and the distinct smell of Sweet Blue Lilacs Perfume. Henry got up from the bed, as a man would get out of a car whose engine gave out. He looked down on his body and at the woman sleeping beside it and he thanked Jenny, quietly and reverently, he thanked her for five years of happiness and turned and stepped through the open door to Janie.

  13. Chris

    My wife was diagnosed with sever chronic migraines 16 months ago that have left her in bed in a dark room 90% of the time. She just turned 30 and I am 33, we celebrated our 10 year anniversary in March and we have a 9 year old son. The fisrt 12 months I was her caregiver and basically a single parent. I took her to her appointments, picked up and dropped off our son to school, did the shopping, paid the bills, cleaned the house etc etc etc. On top off all the caregiving I have a full time job where I work almost 50 hours a week. Thank god they let me work at home after hours. She has been very supportive and appreciative of that fact that she knows I have been her caregiver for the past 16 months. Well in December we finally found a specialist that started diagnosing the cause of her migraines, versus just giving her different meds, and they have been slowly reducing her daily pain. She has been able to start helping out and is out of bed and getting back to a functioning person. This is great and I should be super happy, but I am not. I resent her and have no interest in being around her like I used to. It makes me sad because she is my wife and I love her tremendously, but this last 16 months has drained me. I love my job but hate to go to work. The things that used to be fun I could care less to do. Its been 4 months now that she is slowly getting better but I don’t feel like I am getting better. Yes I have talked to my doctor about anxiety and depression and have been on anti-depressants since about month 2. I am afraid to talk to her about this because I don’t want her to think I don’t love her anymore and how do you politely say that I resent you without sounding like and a$$hole? One of my biggest fears is that all progress will be lost and she will go back to being bed ridden again, it wouldn’t be the first time. The 16 months has been a rollercoaster ride of emotions and I am just plain tired now.

  14. Cameron

    Hello everyone,

    I know that everyone has been sharing their stories…but I just wanted to comment on how nice it is to know that there are other people out there who have similar feelings of resentment and uninterest in their spouse.

    My husband was diagnosed with brain cancer and we have a 20 month old son.

    Simply put, I feel sad. I feel so lost and lonely without my best friend or husband. I feel mad at him for being sick, for not expressing his love for me anymore, for not acknowledging every second of the day how much I’m doing for him and our family.

    I know deep down that these are unfair feelings, but I know they are valid feelings of a caregiver.

    In a way, it feels as if I have already lost everything and the fight is not over. I know there is a chance that he could survive this illness, and I pray everyday and count my blessings. But I’m so so worried that even if he does get better that there is too much damage…that as awful as it sounds, I will never not feel like I am owed for all that I am doing for him.

    I daydream of taking our son and moving somewhere else, starting fresh. I feel like a horrible person.

    I hear whispers in my ear each time I think of these things that say “be compassionate”, “be supportive”, “shower this life with all of the love inside of you”. And I know it’s true…that’s what my path is. To have this unconditional grace and patience in this lifetime.

    But it is so god damned hard.

    • TomB3

      Great post. I think you need to cut yourself some slack. I am my wife’s caretaker. That relationship is no longer a romantic one. I is totally different. I don’t expect things from her and I am not disappointed. This is not a life for sissies. Being a caregiver carves out your hear and drip dries your emotions. I am sorry you are where you and I think you are doing a good with.
      With kind regards,

  15. MCook

    I am struggling. My wife of 21 years, who is only 42, has suffered a brain hemorrhage. She has been in various stages of a Coma for more than 4 months now. Still not communicating, she has begun what maybe a very long recovery. I still do believe she will recover. I tell myself this all the time. I miss her. I, sorry, WE have kids at home, a job, a supportive family (mine and hers), and all of this continues. between the piles of papers in my folder just for her are everything like doctors notes, prescriptions, approval letters, denial letters, insurance, medicade, disability, and bills. Wow, don’t ever forget about the weight of $800,000 worth and growing, pile of bills coming in. My mind has become hazy and the days are running together. Guilty for not spending every waking moment by her side, and guilty for not letting her be and tending more to the kids. The balance in almost incomprehensible. Feelings like loneliness, sadness, confusion, fear, anger, all grazing around in my mind at one time. I will love my wife, and I will continue to be there every day as I go to the nursing home to visit. I will continue to be her best and most effective advocate for healthcare and personal care. I will continue. And I do believe that I might just feel better at the moment for just sitting down and writing this out. I believe I will keep a copy of this hidden in my underwear drawer even if I don’t have the nerve to hit the “post comment” button. Thank you for your time.

    • For MCOOK Mike P

      I feel your pain. Literally — my wife 52, is working on battling her 3rd brain tumor in 7.5 years.
      They – the doctors told us there wasn’t much hope several years ago, but she has defied the statistics and continues to work and live as normally as possible.
      She also had a brain bleed but recovered, and has had 2 major brain tumor removal surgeries.
      I understand, there is hope. There is also a place called Well Spouse Association that may be a resource for you. I just found it for myself. As men, we sometimes think we can tough it out and power up and “handle it” – but I’ve found that whenever a spouse is ill or injured, there are two people who need help – both spouses need care, support and understanding from otheres who can relate and have experienced similar challenges.
      Take care my fellow traveler.

  16. Caryl

    My husband and I just celebrated our 27th anniversary. For our anniversary, I gave him a piece of cheesecake from the Cheesecake Factory. He loved it, ate part of it, and went to sleep. I’m 45 and he is 50. 3 1/2 years ago he was diagnosed with autoimmune hepatitis and liver cirrhosis. 2 years ago he had to stop working. It has been a roller coaster. Good days, bad days, worse days. I have a great job, thank goodness, but medical costs have just added to the stress. We’re still in the process of being approved for social security disability. If he’s approved, his monthly benefit should almost cover his monthly medical expenses.

    I love my husband more than I can express. It’s so hard to watch who he is is fade away. Like so many others, I don’t mind working and running our home on my own. But work, pharmacy trips, doctor appointments, grocery shopping, and trying to spend quality time with both him and our daughter is exhausting. I read and hear all the advice about taking time for myself, but it’s hard to put into practice.

    The biggest challenge right now are the side effects from the liver damage. He has hepatic encephalopathy, which means memory issues, lethargy, personality changes, anxiety… He says and does the oddest things, and loses track of what day it is. He has fallen a few times. We recently moved from our home into a one-level apartment, which has been a tremendous relief. Partly because he just can’t do stairs, partly because we can’t afford the home anymore, and partly because I just couldn’t keep up with a home and yard.

    For a while I really missed the romance of our relationship. Now, I don’t even feel attracted that way anymore. I still love him deeply, and am committed to him wholly, but it feels like a part of us has died. He can still care for himself on a basic level, like showering and getting snacks for himself, and I’m grateful for that. What I miss the most is just being able to talk about everything. Conversations are difficult. It’s like he’s in another world. I miss him so much, yet he’s right here.

    I rely on my faith in God, and a bigger picture than just this moment. I have a wonderful support system in family and friends. I still feel so alone so often. Reading posts about others in a similar situation both gives me strength, and breaks my heart. God bless all of you and those you care for.

  17. Kim

    I am 52 and he is 56. 21 years together, 19 0f them married. Wonderful life together with big dreams and plans. 2012-mysterious illness docs can’t identify. He starts changing. May 2014 after 13 days in the hospital-stage 4 lung cancer. He thinks he can beat it. Since then-I do everything. I drive him to every appointment and treatment (daily). I clean I cook I do yard work. I am completely alone emotionally speaking. I am depressed and I am lonely as hell. There is no romance at all now. I don’t even get a half assed hug when I need one. He is physically still here but the man I married is completely gone. I hope I get my life back someday so I can start living again. I’m not sick but my life is over anyway. Everything I do is for him now. I don’t have help except my sons and that’s not fair to them. I have no one to talk to-ever, I don’t want to be strong. I tears me apart that he thinks he can beat this. The treatments make him so sick and he loses weight which I can’t put back on so he just gets smaller and smaller and weaker and weaker. I feel so guilty having this resentment and depression and anger. But two years now! I am just so tired of doing this day in and day out and never doing anything fun or going anywhere fun. I’m tired of crying alone and I’m tired of carrying this load alone. Sometimes-I just wish it would be over. then, I could move on. Every night, I grieve the loss of the man I loved and I can’t move past it because he is still physically here-my 56 year old child. Thanks for allowing me this private forum he or his family won’t see, to vent. I feel like exploding trying to keep this all in and be freaking mary sunshine all the time.

    • alissa

      I am 57. My husband of 32 years is in end stage kidney failure and cardiac disease due to diabetes. He takes dialysis 3 times a week now. He has also lost a great deal of vision, so he really does not drive. This had really gotten worse this year. He really needs a transplant. We do not have children, so I am sole caretaker and chauffeur. I am exhausted mentally and physically. I feel guilty all the time for feeling angry. Our lives have come to an empty hole. There really is no conversation that does not revolve around illness. No relationship. I am desperately lonely for real male companionship. Even if I met someone, just to talk to, there is very little freedom. I feel like I am suffacating. Then the guilt sets in. Do not know how to keep living this way. I want to laugh again.

      • Tom B.

        I am in the same boat. I am my wife’s caretaker. No more nice trips, romance was a town we passed through and out of long ago. I miss a woman’s company. I also feel alone and trapped and I also will do my best to take care of my wife, which I do.

        However, I think there should be a web site where lonely caretakers can find lonely care takers to write to and maybe meet for dinner at a fun restaurant. McDonalds would be fun at this point, ha.
        It really boggles my mind that this is not helped along and encouraged. What is the worst that can happen? We would smile at an email or the room would light up as we shared a meal.

        If the caretakers don’t take care of themselves, no one will.


        • alissa

          Hi Tom. I agree with you. I hate the feeling that part of my life is just a memory right now. I feel too young for this. We actually are alone in a way, but cannot live our lives. A friend once told me you must live your life! I just do not know how to do that right now. Alissa

          • Tom B.

            Write me if you like. I don’t know if this is permissted on here, but my email is redswan3
            on yahoo.

            You would be most welcome.

          • alissa

            Ok. I had tried to start a support group on my own, but I could not get people to come. Most are older or dealing with aging parents. Very different. You are right. We need to support each other.

    • Howard

      Let’s go on vacation.

  18. Renee S.

    Hi Everyone…

    I sympathize with all of you. I am the sole caretaker of my spouse since 2002. He has multiple issues and is a disabled Vet (90%) but 100% social security disabled. He was misdiagnosed with panic attacks for ten years but had blocked arteries and ended up with a massive heart attack in 2002 that caused a cascade effect with his health. He is now legally blind, had a quadruple bypass in 2010, has diabetes, diverticulosis, arthritis everywhere, etc. Lots of issues. His health really started to tank around 1999/2000 into the heart attack in 2002. We were married in 1998 and I miss that man that I used to know. He is able to help a little here and there around the house but not much. I work full time. However I feel guilty being tired of having to deal with him especially when he finds fault with me here and there when I am stressed out having to do all the chores, shopping, etc. I then argue back and get defensive. I feel so unheard and yet I sympathize with what it must feel like for him too to not be the go getter he was, having to be dependent on me, not ever being able to get out and do things anymore like in the past. But I have sacrificed a lot in terms of my needs, wants, desires that I get pissy about it all. I don’t have a full partner nor a full physical relationship anymore and I’m not ready to lay down and die so it gets hard when you care about the person and love them but resent the unending yoke around the neck. You can’t ever go on a trip (because they don’t have the strength for it) plus my spouse already was not a friend oriented/social person so that just made it even worse. Sometimes I want to run away but he has no one but me so I don’t plus I care. It’s a catch 22, isn’t it? If we didn’t have a conscience or morals we would leave but because we have a heart and we love them, we stay. Can I say WTF? LOL. Soooo not fair IMHO. Thanks for listening.

    • Tom B.

      I can identify you all of you. Taking care of a spouse is not for the faint hearted. I don’t mind the housework, the shopping, the cleaning. My wife can’t do those things. I don’t mind the labor involved or doing all the cooking. I like to cook. I have a full time job as well.

      What I do mind is the total loss of romance, the out for dinner evenings, the pillow talk. They say men are all about sex. That is not true. I miss all the courtship things, the looks, smelling her perfume. All of that is gone. That is the most bitter loss to me.

      Tom B.

      • holly

        I just read what you wrote and I want to thank you… This is my world everyday about being alone taking care of my Husband.. Thank you for sharing

      • Cindy

        What I miss most is his “farmer”work shoes. My husband has MS. Been in a chair since he fell 5 years ago.I can relate to all. Last year he has become very quiet and it is very lonely. People can tell you to hire someone or ask for help but in our situation I couldn’t afford to “hire” someone. As for his relatives that live very close; they stay away.

  19. Kim

    I just don’t know how long I can do this. The man I loved is gone gone gone. I feel so badly for this man I am taking care of now but I don’t love him. He does nothing for me. He only keeps me locked in the prison of his illness. I can’t move on because legally,I am married to this person I don’t even know or really like very much. All we talk about is him and when we cry together-it’s for him not me. He has a bad day-takes it out on me. Feels bad-glares at me. Tells me he wants me to get out and do things that are fun but if I do-silent treatment for days. No hugs, no smiles, no empathy for the people on this side-the healthy ones who have to watch him change daily. I’m so sick of his father telling me how wonderful I am for being there for his son who deserves the best. What do I deserve? Nothing. That’s what I get from him now. Nothing. I want to dress up and feel pretty again. I want to be a woman again. I want to go to the dentist and have my teeth fixed. He says he is battling this cancer for me but has put me in the position of being nothing but a nursemaid to him. If he manages to be one of the 2% who can actually defeat stage 4 lung cancer with mets to the bone-I willl divorce him. I want out of this prison. I want to be in charge of my own life for once. He is doing a really crappy job of running it from the bed. Soooooo tired of being depresssed all the time. Why does my life have to be over too?

    • alissa

      Hi Kim. It is so hard to live like this. My husband has end stage kidney disease. Dialysis 3 times a week. Also cardiac failure and diabetes. He has also lost a great deal of vision. I am sitting in a Dr. waiting room as I write this. Everything revolves around his health and his needs. As you said he is angry and frustrated most of the time. I never do anything right. Can’t win. I am younger than him and feel very resentful that my life is slipping away as well. I am sole caretaker and chauffeur. I have lost my freedom. Feel like I am suffacating most of the time. Then I feel guilty because he is the one that is sick. Mainly, like everyone on this blog, I am desperately lonely. Everything has changed and will not get better in the near future. At least it is a help to know I am not the only one that feels this way.

    • Tom Brosman

      I am so sorry. You are not on a long train ride. Either way, you will stop at a station and get off and on with your life.

      For now, find one new way to nurture yourself. Something you like at a meal, buy yourself some perfumes that smells how wonderful you will look when this mess is over. You can’t take care of him any less, by taking care of you.

      You need to set up your life, in this case in secret. Take short walks, dream your dreams.
      Write to someone on this site. Everyone here is a caretaker, fumbles in the dark for some kind of light.

      I wish you well,

      • Debbie

        Tom, you seem to be such a supportive person to all the people who have written here. Trying to maintain a positve outlook on life has become very challenging. I’m 62 and my husband is 65. He retired on disability in 2004. For almost the past 11 years I have tried to keep him as active as possible but I feel like it is all for nothing. My husband had exposure to agent orange in Vietnam which led to diabetes and all the complications that result from this disease. Kidney failure, heart disease, neuropathy, high blood pressure and all of this has resulted in 2 kidney transplants and quintuple heart by-pass which led to several strokes. We have been married since 1989 and he has never been in good health since about 1992. My first husband died in 1986 after a one year battle with liver cancer. He was the love of my life and told me to remarry and go one with my life after he died. I remarried and have regretted it ever since. I take my vows seriously and have done everything possible to care for my second husband to make him as comfortable as possible. He is not the man I married and the depression and complications from his stroke make any loving relationship impossible. I feel so abandoned yet I must continue living this way until the end of either his life or mine. Doctors and health professionals have told me that my care of him at home has kept him alive much longer than they ever expected he would live. Everyday he says he doesn’t care if I take care of him or if he takes his medication or if he eats properly. I am swimming upstream every moment and I am exhausted. I retired in 2009 and have been there for him constantly but with all the resistance he gives me regarding his care I can’t help but think why am I doing this? I do have some help with his personal care for a few hours each week but the hours that we spend alone together are very stressful. I am sorry his life has turned out this way but I just don’t know how much longer I can maintain my sanity and the ability to continue to care for him. Thanks for this forum to vent. This is the first time I have ever commented on any blog.

    • Cat

      You took an oath with your wedding vows, for better or worse, sickness & in health. You sound like a narcissistic bitch to me. Get your mind off of yourself…

      • Tom B.


        It is your life. I have known women who throw out the “you took a vow” and usually their husbands saw an end to emotional or physical intimacy long before they got their first gray hair.

        I get where you are. I am sorry.


      • Noah

        That is an unhelpful, ridiculously mean comment. You aren’t doing anything but spreading more seeds of resentment.

      • Maribeth

        What a mean and hateful thing to say Cat. Debbie was speaking her truth, all I read was a paragraph filled with sadness and despair. How dare you judge someone, you are not God and have no right to judge others. Take a look in the mirror, really hard. I’m betting you don’t like what you see, so you’re taking your venom out on people who came on this site for answers and support.

    • Dee

      I never thought I would find myself here at 54. We were both divorced and I waited 5 years to get married again. We were both driven and had a great friendship on so many levels. When I married my husband his health insurance was so expensive and I had insurance through work and the relationship was the best I had ever known. That was 15 years ago. Shortly after getting married his health started deterioting. 3 years after tying the knot he had to give up his business and go on disabiltiy. I picked up the mortgage and living expenses and he paid off the residual bills of his business with his monthly disability check. When I had the chance to advance with my career I took it, even though it meant moving 1300 miles. The promotion brought a bigger paycheck, expendable income and a lot more responsibility with travel nearly every week for 2-3 days. That was 3 years ago. When I am not at work, I am the gofer, housekeeper, cook, server, accountant, chauffer, etc. My career provides the capital to pay the numerous medical bills and 15 prescriptions. I love what I do and the socialization my career provides. Lately, I have been so lonely. My husband expresses how much he needs me and can’t wait to see me everyday. I hurry home after work and he falls asleep in his chair or goes to bed. Today was especially hard. I drove 4.5 hours to get home because I know how hard it is for him to do for himself when I am gone. He has been in bed or asleep for 4 of the 6 hours that I have been home. This is how it goes. Weekends are the same. He has a couple of good hours a day. We do not go out and have no friends here because we do not socialize. I feel guilty when I take time away from home after working all week. The silent nights are becoming unbearable. I love my husband dearly. I know that he would do the same for me if I was the one in his shoes. This fact is how I keep the resentment under control. I do have my moments though. It’s Friday night and I wish I was anywhere but here right now. I don’t how much longer he has to live, it could be two years or five and I hope for the good Lord to give me patience and to fill my heart and mind with love and understanding. I pray for The Lord to comfort my husband and keep me strong through these periods when I feel cheated. Thank you for reading this and I pray that you find the comfort you long for.

    • Howard

      I know the feeling. I was the caregiver for my wife for 10 years. Within 6 months of her disease m.s. She was in a wheelchair her condition got a lot worse to the point of blindness. I could no longer do it any longer. She now resides in a nursing home. My life is much better as far as the care she needed, which was a lot. I visit daily. I am 54. I miss being with someone whole. Someone to go out with a damn vacation anything. I feel for people who take of others because I know……..like you all do. Does anyone live near Williamsburg lol.

    • Lori P

      Kim, I totally feel you. My husband is ESRD, severe scoliosis, artificial heart valve, Hep-C, and a drug addict from all of this. I can relate to everything you say. Although to add to that, when he hides his drugs from himself, he blames his family and has pulled weapons on us. We sleep with one eye open. He took the car on Christmas Day after dismantling the garbage disposal to ‘fix it’. He was missing in action all day. We didn’t see him until after 8 PM that night, and living in a new State where he doesn’t know anyone, I had no clue where to look for him. He has tried to warm himself in the middle of the night with the gas stove, all burners on high, the oven on broil, with the oven door open. He awakens from his drug induced coma and tries to cook. He has burned pots, pans, utensils, and food. We moved, and our new place came with a beautiful electric stove. He cooked on the glass-top without a pan, melting a plastic spatula and causing damage to my new stove. Now we turn the circuit to the stove off at night. Xanax caused him to wreck two vehicles in one day (blackouts), and with my new car he nearly ran through the house in FWD, and backed through the garage door in REV. All of this costing his drivers license to be suspended and $$, BIG $$. He doesn’t remember selling most of our belongings to move 1400 miles away, he doesn’t remember closing on the sale of our family home, he slept through the long (2-day marathon) drive to our new home. I trusted him to drive to dialysis two weeks ago (1/2 mile away), and found another crack in the plastic bumper. Of course he denies it, but that’s a drug-addicts life. We can’t plan for a kidney transplant, because he’s never coherant enough to have that conversation. He’s so busy chasing drug Drs. and I’m busy cleaning up messes, trying to keep things sane, and going behind his back to stop the Drs. from prescribing Xanax and Atavan. I retired at 55 and planned to care for him, get him on track, and attempt a healthy, happy retirement life together. I don’t want to rob him of his masculinity or his role in our family, but it’s like having an out-of-control toddler 24/7/365. My year-old retirement has been one nightmare after another. I am burned out, no pity, no empathy, nothing for him. When he gets fed up with my reminders (nagging) he tells me to go “F” myself. Well, at least I’d get some, wouldn’t I? When he feels like he’s not getting enough attention for his current issues, he creates more, like picking until he bleeds, ending up with a wound that has to be cared for by professionals once a week.He needs mental health assistance, and an intense rehab program where he’s locked up. I’m to the point that if he were to croak tomorrow, I’d step right over him and have the biggest celebration EVER! I’d be FREE!

      • Tom

        I am so sorry Lori. I do understand. I think in my next life, I am going to start a site for caretakers who lack human ties to the outside world because they are at doctors appointments, making meals, cleaning, doing dishes. I have read these posts and I had noticed the people/compnanies who advertise. It is often more about what someone is trying to sell, that a lonely caretaker on his or her last nerve. We need a site where we can get a sitter for the night and several of us meet and go dancing and flat out partying. If a romance sparked…so what? There are so many on here worried that a rule will be broken, when emotionally alot of us care takers are bleeding out.
        To the party!

        • John


        • Cindy

          I would feel guilty to have fun without my husband. He was a sweetheart and I don’t understand why this happens to the people that have always helped others. Now I know why those “dancing lessons” I wanted him to take never happened. One of our daughters was married 2 years ago and She didn’t know how to handle the bride and father dance. She sat on wheelchair ith him and they made the rounds on dance floor. A lot of people were in tears. Our family tries to make the best of it we can; but the tears dont go away. Especially at night.

  20. Judy Popham

    I’m 70 and never expected to be a caregiver. It is like everyone says, “You lose the person you married, but still love them.” No one really understands unless they are also a caregiver. I guess “Do unto others as you would have them do unto you,” really applies here. Yes..it’s very lonely.

    • pat

      I am also 70. I’ m healthy and look 10 years younger. My husband has pulmonary fibrosis and has been on oxygen about a year. He also has lost use of his bladder , has high BP , and is very depressed. We are not the same any more. He loses his temper and is impatient. I often feel so alone and wonder how much longer I can exist with such a unhappy sad spirit in our home. We have been married 40 years. No one knows how I feel and would think I am selfish if I say how I feel . Everyone ask about him and I feel like no one sees what I am going through.

      • alissa

        Hi Pat. You are not selfish. We are mourning for our old life. People do not understand the lonliness we live with. Out spouses are still with us, but in a way they are not. My husband has gone from an independent intelligent guy to a man that just watches TV, and goes grocery shopping with me. I have lost my partner, independence, and life as I knee it. The resentment and lonliness is at times overwhelming. I am still a fairly youthful vital woman who can’t live. I feel guilt like everyone else, but have learned its not selfish to feel you still want to live. I am so tired of feeling sad. Miss laughing. I don’t have any answers. Just look to steal moments to feel like my old self.

  21. heidi

    I am caregiving for my 59 year old husband, his 87 year old mother and his 91 year old father. 2010, his mother had 4 strokes, through that year, her husband started having destructive behavior. I called for a evaluation team they took him into the local hospital and diagnosed him with advanced dementia and alzheimers. My husband fell apart and now suffers with anxiety and depression with panic disorder. He was fired from his job at a major studio because he became addicted to ativan. Popping these pills like tic tacs the night he was terminated he ended up in the hospital because he was suffering from withdrawals. They took him in immediately when he said he could solve this problem all by himself at home. A week later he was detoxed, they sent him as an inpatient to a mental facility where they put him back on ativan and other meds. The meds have FAILED to help him. He is a mess. IN and out of mental facilities now going on 5 years, I am so exhausted he has temper tantrums and bangs on doors. He was arrested in Dec of this year for domestic violence and now has to attend anger management classes for 52 weeks. LIFE SUCKS I cannot stand this and don’t know how to get where I can hit a happy medium.

    • Tom

      I am very sorry to hear about the fix you are in. There are times in life, when you can’t be in control.
      This will not last. You will have a life at the end of this. I am so sorry about how things have gone for you.


    • Elizabeth

      I have been caring for various relatives since 1983 and spent many years being suicidal. I was in and out of mental wards. I am now caring for my husband of 32 years who is a diabetic, extremely obese and has congestive heart failure. I have a difficult time making ends meet and etc., but everyone has there own set of problems. I would strongly suggest you consider putting the two in-laws into assisted living or a nursing home. You must consider your own sanity and take care of yourself. This too shall pass, but when it does you need to be able to go on and look back knowing you did what you could do. You may even need to consider having your husband in a facility or living apart from him. Know God is with you. Study your Bible and find the meaning of the instruction “Peace, Be Still”. I am a very controlling person and went nuts when I lost control. Now I know that God is in control, and I can stop in my tracks and say “Peace, Be Still” and be okay. I will pray for you and your family.

  22. John

    Three years ago, my wife had a total colectomy because her Chron’s Disease had stopped her bowels from working. Everything that could go wrong did. Two comas, four months in the hospital, a big hole in her abdomen with a fistula instead of a stoma, about a foot of bowel left…only source of nutrition is daily IV feeding, constant pain, ostomy bag management is a challenge, virtually no immune system meaning regular hospitalizations to chase infections (she nearly died 2 years ago from a fungal infection), and she spends most of her time in bed.
    Like others who have posted, I’m managing about everything. We have someone staying with her days. I’m home with her the rest of the time except when my schedule requires nights and weekends.
    And like others who have posted here, the grind of it all is wearing. A trip to the store or to go get take out (and have a beer while waiting) is a respite. Trying to avoid the depression is a battle. It is indeed a lonely job taking care of someone you love but who is a shadow of their former self.
    Her mother has been supportive…she was her husband’s caretaker for 30 years. We talk about working through things..grieving….I’m fortunate she likes sports since that’s how I make my living.
    My wife and our 2 kids (both married and out of the house) have been pushing me since she nearly passed twice 3 years ago to start looking ahead a bit. Finally in the past few months have been trying to rekindle my passion for photography (bought myself a new camera for Christmas), and am trying my hand at something I’ve always wanted to do – home brewing.
    We’ll be married 30 years this summer…I’m 59 , she’s 58. I’m constantly stressed over all off this…spending a little time at work each day managing things (some days more than that). Looking for any insights anyone may have to try and manage this the best I can. Frankly, having the opportunity to write and vent a bit here is good therapy.

    • Tom

      I am sorry you are in a jam like that. One thing I have learned to cope is find something totally away from your responsibilities every day or two. A meal out, a drive.

      • John

        Thanks Tom. It’s hard to squirrel away a little time…but when the weather is nice (we’re in Michigan), I’m able to get in a 30 minute walk and it makes a huge difference. This forum is helpful because you sometimes believe you’re the only one who has this happening to them.

        • Cindy

          We are in Michigan, too! I am not looking forward to winter after the last 2 years…. My husband has MS and I have to turn him thru the night so I stay up a lot. Just found this site; people that don’t live our lives cannot understand. I did find comfort in going to the MS muckfest this summer. Our daughter and her husband participated, There were so many up beat people doing this mud obstacle course at a park. It made me feel better to know that all of these strangers were there for people like my husband. My niece has Crohns disease….

    • alissa

      Hi John. Like you I am a caregiver for my husband. He is dealing with endstage kidney failure, heart failure, and limited sight due to diabetes. Like most that write on this blog, I am am nurse, chauffeur, maid and everything else. Everything revolves around dialysis and Dr. appts. Everone seems to deal with the same issues. Lonliness, guilt, exhaustion, and depression. We all mourn for our old life. We live as single people, but we are not really free. It’s a terrible dilemma. Many of us are still young enough to want a full romantic life, but we can’t have it. I feel constant guilt for the anger and resentment I feel. Going to a support group had helped a little. Just to vent. It’s just very hard to look forward. At least your wife is encouraging you to do that. We all must live one day at a time, and do thr best we can.

      • John

        Thank you Alissa…I find your situation as tough as any who have written here. What kind of places have you find that offer support groups? I never thought I would need some outside support where you can talk/vent at length. Don’t have many folks I can turn to where I can open up. Some days are better than others, as I’m sure they are for you. Hang in there.

        • alissa

          Hi John. Yes some days are better than others. What’s tough is you’re not dealing with the person you knew. Most people really don’t understand unless they have been through this. Caretaker to a spouse is very different than caring for aging parents. In this case your every day life and your future has entirely changed. Plans possibly don’t include them. It’s upsetting to think that way, but it is a reality. I had gone to a group, but attendance has been lacking. I am in NY, so the weather takes a toll on everything. I hope you can find someone to talk to. It does help, even momentarily. This does help to know we are not alone.

        • Elizabeth


          I hear your voice. I have been a caregiver for my husband about 9 years . I was only 39 years old. My husband had suffered a massive stroke that tremendously had changed our lives…what can I say. I totally relate to many of you. It is a huge difference between taking care of your spouse and elderly parents. At least that what I think.

          • alissa

            Hi Elizabeth. You really are young to be in this situation. How is your spouse doing? Have you been able to come to terms with your life as a caregiver? I am having a rough time. I still want to live life, just don’t know how. I havelittle freedom. Too many Dr. appts. to commit to a real job. Everday seems to get more stressful. Being so youthful, how do you deal with loneliness? I stll want to be part of a couple, but it’s not like that anymore. Hope everyone is having a peaceful day.

      • Diane

        So glad I stumbled onto this site. Sounds exactly like my life; 59 year old husband; diabetic since age 9; heart disease, strokes, hearing loss, and recently diagnosed with MS. I try to just take one day at a time and always think it could be worse,even though I miss the companionship/partnership we no longer have. It’s turned into more of a parent/child role and that’s tough. I’m so glad to be hearing from others going through the exact same feelings as it makes me feel like I finally have some people that “get-it.” It’s just a very sad, lonely journey.

    • Debbie

      Is this conversation still going? I an a caregiver for only 4 months now to my husband and already feel burned out!

      • Debbie S.

        I should distinguish myself from the other Debbie here. I will be Debbie S. My husband is paralyzed from the waist down since October due to cancer.

        • John


          There is activity here. People drop in from time to time to help support those of us who are writing our first entries. I think just having the opportunity to vent here is huge. Just to be able to share and see that we’re not alone..that we have some common things going on. We’ve all been dealing with our situations for varying times…mine turned 3 years this week…and we all hit peaks and vallies. I’ve found some of the suggestions about getting some time for yourself to be helpful…even just a few minutes in another part of the house can be a bit of a respite. Stay strong!

          • Debbie S.

            Thank you, John. It helps so much just to be heard. I struggle with loneliness more than anything else. Our lives are all about paraplegia, cancer and the worries that come with them. We had plans to enjoy our retirement in 2 years; but now he is retired on disability and I don’t know when I will be able to retire. I feel guilty thinking about how my life has changd when he has lost so much. But holding my unhappiness in is not making me feel better or be a better caregiver. I want to believe that I will be happy again and enjoy life. I want to believe that I have a future. I think that would help me endure this with more grace.

          • alissa

            Hi Debbie. I am struggling with the same guilt and lonliness. My husband is on dialysis, waiting for a kidney transplant. He sleeps a great deal of the time. Due to diabetes he has limited eyesight, so I have to drive him everywhere. My life has become very limited and isolated. From being two independent people, he is so dependant on me. The drugs and dialysis have affected his memory quit a bit. He seems zoned out. Totally self absorbed. My birthday and Valentines day passed with nothing. I feel like I am in mourning. I feel guilty longing for a happier life. Want to feel loved again. We all seem to feel the same. It’s very sad.

          • Debbie S.

            Hi Alissa. When I think ahead it is harder. It seems best to just try to make it one day at a time. My city has a support group for spousal caregivers, but it is too hard to get out in the evenings. And I understand the group is very small–probably for the same reason. I have only been in this for 4 months. I hope it gets easier! Right now I am exhausted and sad. Thank you for responding to my message. It really does help to hear from others who share this experience. We may be lonely, but we’re not alone!

          • alissa

            Hi Debbie. I have tried the support groups. Where I live in New York most of the groups are open to care givers, so theyhave more people taking care of aging parents. That’s very different. In general attendance is minimal. I also find it hard to look forward. Every day is something else to deal with. For me its gotten more difficult as time goes on. At the beginning we were still in shock and trying to get used to the routine of dialysis. There are so many side effects. Friends also have disappeared. They care, but everyone has their own problems. We can’t do what we used to, so it’s become isolating. We’re not really like a couple anymore. Patient and caretaker now.I don’t know how to go on living like this. Take care of yourself. We all have to.

          • Debbie S.

            Hi Alissa,

            Your last message could have been written by me except for the diagnosis. And I have not been in it that long. It just seems long and there is no way to determine if this disease will last months or years. Or if the Cancer will get us in the end or complications of the paralysis. I say “us” because I feel almost as ravaged as my poor husband. He is very patient and strong, but a terminal illness has to make a person self-centered. His world is very small now: pain, confinement, medicine, doctor visits and TV. It is unspeakably lonely at times. Many of my worries I don’t even share with him. He can’t help anyway. One of my major supports in life has been my faith. I also used to get a lot of encouragement from going to church. Now I can’t get there unless I hire someone to come in on Sunday’s to help my husband. I am already paying someone to come in M-F so that would be hard. I pray and believe I am heard, but this is a wilderness time in my life. I hope that I am being shaped for some future that has more purpose…and more promise. I will pray for you too. It sounds like you have a very heavy load. Can’t imagine how tired I will be after this has gone on for years.

          • alissa

            Hi Debbie. Having taken care of both parents with terminal cancer, I know all too well how devastating it is. We all have to stay as strong and healthy as possible. I found this prayers actually given to a military support group. I wanted to share it with all the caregivers.
            Dear God, all I see is darkness…a deep, dark pit of despair. The hopelessness I feel is like being imprisoned in a cage from which I cannot escape. I am trapped in a bondage from which I feel I cannot escape. How I long for hope in my life. Even when all I see is darkness, please help me believe that there are brighter days ahead of me. Help me to see beyond this deep, dark pit of seemingly endless despair. Please grant me the grace to see a ray of sunshine and feel a breeze of uplifting hope in my life. Amen
            I hope this helps everyone that reads this blog. Alissa

          • Debbie S.

            That prayer captures the heart’s cry very well. Thanks for sharing Alissa. I want to share the title of a very good book I just found on our situation titled, Passages in Caregiving. It was written by Gail Sheehy, who is an excellent writer, especially on the subject of passages, and was a spousal caregiver herself for many years. The book is honest and painful but also hopeful. She addresses caregiving for spouses, parents and others and a lot of the information could be used in any caregiving situation. She also uses a term…practical spirituality…that I like a lot.

          • alissa

            Hi Debbie. I read Passages many years ago. I will get the one you recommend. Weekends are always more difficult for some reason. I wish some of us lived closer. I tried getting a group together, but it fell apart. Would love to be with others that understand. However, would love to talk about something not related to disease. I would love to really relax and laugh again. A friend that is living like this as well, told me today that she feels guilty wanting to have a good time again. You don’t know what to hope for. It’s hard to admit what would make life easier. I hope everyone is having a pleasant Sunday.

          • Tom

            Hi Debbie,

            Isolation is a disease in itself. When you are isolated and taking care of a sick mate, you are doubly stressed. Find a friend to write to. Don’t go alone. Yes, you will have a life after this. Yes, this is not a forever thing. Get your hair done, make a good meal. Learn to nurture yourself.
            If you want to write someone, ask for their email address. Everyone on here is lonely. I do all of the cooking, cleaning and shopping and long ago gave up telling my ill wife my thoughts. She goes to sleep. Yikes.
            Write anytime.

            [email protected]

  23. jeanne

    My husband said he’s too young to have a stroke. He’s 58…soon to be 59. He’d not been taking care of himself and ignored my pleas to see a doctor and get out and move…stop smoking and sitting in front of the computer day in and day out. There are many issues that are unresolved and now they are compounded by my having to do everything because he’s had a stroke. He’s taken away my access to funds. I can’t work because I’m taking care of him so I have no income of my own. We have an old house that we’ve been fixing up and it has no heating system so I’ve got to keep it warm by hauling in firewood and keeping the wood stove going in the sub-zero weather we’re having. I take care of our animals (a job in itself since we have 4 dogs, 2 cats and a goat). I do absolutely everything except bathe and eat for my husband. I feel like a caged animal and I’m about to burst! Please…someone give me a ray of sunshine on this cloudy life.

    • Tammy

      Hi everyone. I just came across this site and am so thankful that the feelings I am having does not mean I am a selfish, heartless wife. My husband became wheelchair bound about a year ago and our life has changed drastically! We ended up closing our business, I am 11 years younger than him, but am unable to get a job because he is totally dependent on me. He needs assistance with pretty much everything. His left side is paralyzed so he cannot stand, sit, transfer, etc without my help. We were both married before and have only been married six years. Now, I am bound to the house, missing my children’s weddings, births, etc. I feel total resentment! It seems like everything I do, is for him. I miss the romance, made to feel like I am a woman, miss the little things like the door being held open for me, soft caress, occasionally dinner made for me. Then…..the guilt I have for even feeling these things slams me in the head and I feel so horrible that I don’t dare tell anyone because even as I type it, I feel like total scum. It’s a comfort in a weird way to know that what I am feeling is “normal”

    • Dawn

      You sound like your in my world.My husband has had 5 strokes. He had them between 12/12 to 2/ 13.The first he went blind God restored his vision.The second took a little speech and a little of his left arm.He was nearly recovered from those and in Feb he had a very bad stroke that took out the whole right side and clenched his mouth shut. He can walk now .right arm limited movement. Still clenched shut. This all started when we were 47.We have a son who is now 12. We have 4 dogs ,we had 2 cats one passed. We had 17 goats. Four sheep many chickens. We opted to have friends sell our outdoor animals.It has been over 2 years we are still adjusting to our new life. We have learned to take it day by day. Sometimes moment by moment. Most of the time my husband don’t think I’m his wife. This is one of the hardest things for me. He sleeps on a 30 degree angle due to tube feedings. So we don’t even have a closeness at night. I’m not going to tell you it gets easier because I feel that I’m just adjusting to a new life . I often find myself mourning my old life and husband.I miss working I miss going somewhere by myself or just going to church on Sundays. Because if he don’t want to go we don’t. I really do feel your position.

    • Dawn

      Jeanne, I almost forgot we also heat with wood. We have an outdoor wood stove. That is all we have to heat our home. We live where the winters are very harsh and cold. I also homeschool our 6th grader. You do adjust some days are better than others. I keep focused on God he helps me through the tough spots. God Bless you and your husband. Dawn

    • Irene

      Jeanne, I can offer no encouragement because you sound like I feel. I do pray, a lot.

    • Polly Martinez

      Jeane, I feel like I’m reading my life story. I am from Colorado, where are you from? If you would like to talk reply to me and I will give you my phone number, Polly m

    • Bobbi

      Jeanne, I can relate so much to what you wrote. My husband had a stroke 5 years ago and is now 63 and I’m 60. I recently had to quit my job I had for 20 years in a school district that I loved. The end of August I will have no more medical insurance for myself/ he is on medicare. We had to move 200 miles away to be able to afford renting a home because of the loss of my income. My husband is also an insulin dependent diabetic which gives him major moods swings. He also has a seizure disorder that scares the living daylights out of me! Our 2 daughters are grown and married with their own families and don’t live nearby to help out. He wouldn’t let anyone help him but me anyway. His negative remarks and behavior is what bothers me the most. He dislikes everyone and is not a positive person to live with everyday. We’ve been married 35 years and I know this is my life taking care of him. I wish there was some kind of financial support for people like us who dedicate their lives to helping a loved one instead of putting them away. He can’t drive his reading and writing are poor he lost 50% of his vision and can only make himself a peanut butter/jelly sandwich! I can’t leave him alone for long periods of time because when he has a seizure he falls down. Sometimes his dementia is bad and he leaves the house and walks around but forgets how to get back. Policeman have brought him home a few times! As a woman of faith I do believe there is a reason for everything and pray I can keep myself healthy and strong to continue doing this care-taking job! But sometimes I just wish I didn’t have to…

  24. John

    Does anyone felling like they’re going along as well as they can be and suddenly hit a a fresh wall of grief, guild and depression? The past few weeks, my work schedule has ramped up, lots of late nights, weekends and a couple of weekend of overnights, and suddenly I’m hitting this whole new level of only God knows what. It’s hard to concentrate on work because I’m overridden with guilt being gone just to do my job. Family has been excellent filling in for me, so I should be able to relax, knowing my wife is well taken care of, but I can’t…

    • alissa

      Hi John. Guilt and depression bubble up when least expected. It’s hard to be everything to everyone. Just wanting some space and time to myself makes me feel angry, then guilty. Therapist says is normal, and very hard to control. No one has an answer. Just try to keep your sanity and know you are doing the best you can. Alissa

    • Cynthia

      John, I cant imagine having to hold down an jobAND care for someone you love who is battling cancer or depression or whatever the diagnose..someone other than who we loved from day one. We have a new normal, We love them because its our destiny. Guilt is hard, Im trying to find a way to deal too. I realize its harder for my Honey. Looking for answers too. Sanity is a daily gift, for all concerned. Hang in there. If your a Christian, pray daily, Jesus is always with us. I truly believe this. I need to.

  25. Sheridan George

    I’m really glad I found this site. My husband has Congestive Heart Failure at 54,, he was diagnosed 6 years ago at 49 years old.. He had a golf ball size clot in his left ventricle and a triple bypass.. The surgeon came out and said he would not make it through the night – that was six years ago.. So he went back to work until May of 2014 when he became so short of breath and weak he could not physical go to work ..Looking back I see personality changes but then , being in the middle of it all, I didn’t really notice.. Now that he is home 24/7 with me I can see he is no longer the man I married. He is totally different …I am 45 and we have been married for 10 years,, we were friends for 20 years before that. The man I married never spoke a ill word of me or to me. Now he tells me regally that I am dumb, stupid and don’t speak correctly ( I am a Caucasian – and I only speak English – never learned a second language ) … This is because ( I think) that he may be getting confused and then blames my way of saying whatever I said – to cover his need for more time to process the info or figure out what Im saying or asking… I don’t know – but this is a Hugh part of my issues because most of the day he tells me I’m stupid and that I don’t speak English correctly.. This is only the tip of the ice berg… I will wait and see what feedback I get before going on with my story.. I know this is probably a confusing post , as it is confusing living it, : my husband is 54 and we have Hospice in the home once a week, he is agitated, angry, mean, restless and a big man 230# I am 130 lbs…I love him and Im looking for any input on how to try to open up a line of communication with him.. Its like the last six years his body has gotten older but his mind ( personality, behavior) is growing younger and younger…. Sometimes, I swear , his behavior is that of a 12-13 yr old young man,, and then he has exhibited behaviors over several hours at a time that you see in 6-7 year olds – the constant need for attention and trying to get it by doing negative things,, like spilling drinks, dropping remotes, throwing objects.. intentionally hiding things , then getting super mad , so I will help him look for it.. ( razor brush, key chain, lottery ticket) ……..And nothing , absolutely nothing makes him happy. He complains about how hot coffee is and how cold ice tea is.. I try and try to fix the ,what I call little things for him – like the hot and cold stuff – but then he changes his mind and doesn’t like it the fixed way either.. Is it normal – for – when one spouse is sleeping ( at night) — for the other spouse to stand by the side or foot of the bed and just keep bumping the bed with his leg without saying anything over and over again until I wake up ? I need to help him , I just don’t know how .Hospice provides his med care and monitoring,, and with Hospice we are no longer trying to cure an incurable disease, now we are suppose to be concentrating on quality of life.. I don’t even think he would go see a psych or psychologist,, so that’s more than likely not an option.. Thanks for reading this and hope you don’t think I’m nuts,, cause I really don’t think I am yet…I just want to help him and make our time together good and memorable ….it seems impossible though.

    • cecelia

      seems the bed thing is all part of restless leg syndrome- my husband says he does not

      kick in bed or wear his watch and while he sleeps constantly checks the watch but he does

      its hard to say I can no longer….Sleep in the same bed
      or I can no longer depend on you…. Yet, I have had to say those things to my husband
      the only wisdom that has got me though is the unconditional love of my God and to know that
      it is a one day at a time, sometimes one minute at a time life and to keep my boundaries set

    • Bobbi

      I don’t think you are nuts Sheridan because a lot of what you mentioned goes on in my house too. My husband acts like a juvenile sometimes too! If I don’t respond quick enough he yells like an insane person and says why didn’t you answer me! I just couldn’t hear him but he thinks I’m doing it on purpose. I finally told him if he yells like that again at me I will not respond until he calms down. It’s hard to be the only grownup left. I have to make all decisions big and small because he thinks he can but he can’t. His mind is damaged from the stroke and he is not the man I married 35 years ago anymore. His short term memory is shot so we really can’t have any decent conversations. Even his memories of years ago have been wiped away. Our daughters don’t even like being around him for very long because he is so negative. Lucky they are married and have families of their own now. So remember you are not alone Sheridan!

    • Cannady

      Hello Sheridan. Your post sounds very familiar. My loved one claps his hands and snaps his fingers to wake me up in the middle of the night . He also exhibits childish behavior and has become clingy towards me. He is also forgetful. He was diagnosed with young onset dementia. He is only 45. Ask for a referral to see a neurologist. They can diagnose these behaviors.

      I am praying for you.

  26. Joyce

    Does anyone care for a spouse with dementia/Alzheimers?
    My husband is like a new slate every 10 minutes – it’s like his brain is an Etch-A-Sketch and every few minutes it gets erased and we start all over again. He’s fine in the sense that he doesn’t need help getting dressed or feeding himself, but, our relationship as husband & wife, give & take, etc., is gone. I can’t share my day with him…even though he asks, because when I do so, and pour out the details – a few minutes later he asks… how was your day today? And, repeat that by 10 more times until I switch him to another topic!
    I feel like I’m going out of my mind – like a dripping faucet, only it never shuts off. And, like many of you have expressed…I feel terrible that I’m so angry, fearful and depressed when he’s the sick one not me!
    He’s 73 and I’m 10 years younger…I also have two sons with autism who will forever be with me…and while they are a piece of cake compared to him …I now have 3 guys who can’t drive and need some kind of care. I own a business that takes up a lot of my time because I need to bring income in…so I can’t simplify my life anytime soon, unless I win something. We lost our home a few years ago, as he could no longer work, and the pressure on me to bring in an income plus taking them all to dr’s appts, haircuts, dentists, or coming home and then needing to go back out for milk, etc., is beyond zapping my energy – I’m more mentally exhausted than anything! No, there’s no family left; my husband was an only child and my only brother lives 2000 miles away. Friends are kind, but, they all work full time jobs and some will say “let me know if you need anything” but … we all know they’re hoping I never do, otherwise, they’d say…I’m free on Saturday, what can I help you with? I think people see me as being very strong and I also see them being very awkward with my husband…not knowing how to respond to this person who looks like him but doesn’t remember them. No longer stories to share, etc.
    Thanks for letting me vent…If anyone knows of any little mind tricks I can do for myself to keep my sanity, would greatly appreciate it! I hate feeling so stressed when I’m in his presence – it’s not healthy for me at all …I know ALL this and yet it’s a knee-jerk reaction that I can’t seem to control! This is horrible.

    • Tisha

      Joyce, thank you for sharing your story. I am sorry for all that you are going through. You are so beautiful with a bright smile. I can offer you my prayers, Joyce. I pray for relief and for rest. Even when you are able to get away or lie down- rest does not come. Fear of someone else taking care of your loved one is almost impossible to comprehend. They don’t know what he needs like I do… We have to be here for a reason and we must know it will get better. My teacher in Caregiver training told us she works with spouses of their husbands and slowly through life coaching opens their world to possibilities of others helping and us finally getting the rest we need. It will happen- I have to believe that.

      • Joyce

        Trisha, Thank you for your reply and prayers – that means the world to me!

    • Maryann Burrows

      I feel for you so much. I dont know why life has to be so extraordinarily hard for some of us. My first husband died at age 34, when I was just 30. I had been with him since my late teens. unexpectedly remarried one of our friends several years later and we had 2 girls. He has had addiction issues, mental health issues, and severe health issues. I am a registeted nurse so I act like his nurse, and not his wife. I get paid to be nurse, I never asked for my husband to be my patient too. I feel guilty I wanr a divorce or an affair sometimes. my wedding vows haunt me. I have been faithful but dont know how much longer I can be/feel so alone.

    • Pam

      Hello Joyce –

      If you have not done so yet, please get help! I have my husband in a Day Care now..and it is amazing, how much better I feel. He too had ALZ/Dementia – advanced..and can do very little by himself. I believe in God, and I believe he has worked some miracles this summer – for sure! I almost hit rock bottom myself, as I was so overwhelmed..and I do not have two sons that I am caring for as well. there is a high statistic of those who die before the person(s) they are caring for. You need to put your Oxygen on…and put your “back-bone” where your “wish-bone is”. I know it is tough..but do it. Get some help! A great book…if you have not heard of it, is The 36-Hour Day, by Mace and Rabins. Bessings to you..and I pray that you have realized that for your health and self-worth, and survival – you need assistance..NOW!


  27. Dickson stella

    My ex which we have a son together broke up with me for another guy who is extremely wealthy. whenever i communicating with her. She always indirectly speaks that it was a regrets she met me and she had a son with me, she deprived one year from my newborn son of seeing him which we end up at court but the court case stopped because my both parents got killed in car accident 20/ 7/2014 , then she left with the other guy with no treas and never came back to me until i was able to come in contact with [email protected] after his spell was casted my ex she broke up with the other guy we had a reunion. we are together now living happily

  28. Being a Caregiver to your Husband | SeniorAdvisor.com Blog

    […] years. One major change many couples experience but few are prepared for is the transition to a caregiver-care recipient relationship. Either partner can need care, but women make up the overwhelming majority of informal caregivers, […]

  29. Maribeth

    I’ve been my husband’s only caregiver for the past two years. He was diagnosed with AML acute leukemia in August, 2013. I love the man that I married and shared a life with, the person that I am caregiving is not the man I married. I love him, I do, but his anger and rage have sapped my strength and continues trying to destroy the natural joy I find in life. I am also the sole-support of my husband and myself, we lost our home to cancer, trying to find a way, any way to keep him alive and have succeeded to that end so far. If he had one once of gratitude, not just for me and the sacrifices I’ve made for his recovery, but for anything, I wouldn’t be writing this. The only emotion he has now is rage. Of course he never shows this side of himself to anyone else but me, to the outside world he is stoic and brave, to me he is hateful and vulgar, its a difficult situation. There was a time, for a very long time that this man was the love of my life, my entire world. That man is gone and I know because of the cancer that the man I adored is already dead. This is such a difficult piece to write but I need to purge it our of my system. I don’t sleep, I have horrible nightmares and I’m frightened for my future and I’m not allowed to express that because cancer trumps everything else as far as my husband is concerned. He is in remission, yet he contracted a bacterial infection (c-diff) that kept him in the hospital for 7 weeks. He woke me up at 5am this morning and took himself to the hospital because he’s having trouble swallowing, although he took a shower before going and I caught him taking a pill. I decided to let him go to the ER himself. I believe this is in retaliation for the fact that for the first time in two years, I’m going to a family reunion next week (on my own, I asked him to attend, he opted not to) Recently, I have been trying to take care of myself a little better and I believe that he’s angry by this. I’m so weary and have no support from my step-sons. My family lives out-of-state. Cancer is the most isolating disease, people are afraid to even say the word out loud. It’s a horrible situation. My first husband died from heart disease and while it was awful and terribly sad, it was nothing like cancer.

    • Maryann

      Oh Maribeth, I could have written your post myself. I know EXACTLY where you are coming from. I am bone weary right now. I want to run away from home most if the time now. I feel guilty but honestly I dont know who could do what I do and still appear happy and pleasant, as I am dying a slow, sad death of my own. I am a young 52, I want love and romance and laughter. Just good old laughter and rolling around on the bed and being silly and hanging out. Living with a sick spouse makes me really realize whats important, and he just doesn’t get it. I know im depressed, but I still want him, desire him, and love him. he says he loves me but he just is so negative and ignores me. I am so happy to find this site, not to just bitch, but offer and get support and if anyone is in Massachusetts, maybe form a support group. who knows….:)

    • Kim

      wow – my husband behaves this way too. I know deep down that their anger is really their fear but the other side of the coin is that it’s easy to get self absorbed when you are suffering a debilitating illness that is why we as their caregivers have to take care of ourselves. I could read self-help books all day and get myself into a great frame of mind but it’s all a mute point when you are taking care of a sick partner. It is the most selfless act on the planet and I am not that perfect. So bitching about this is good because like any other problem when you talk it out the solution eventually shines thru. I have some ideas of things to do to take care of myself and I do them when I can. I’m a recovering alcholoic 4 yrs sober so I have my AA community but he has nothing. No friends come here to help him, no family comes to keep him company.. it’s very sad but I can’t fix that part. He can reach out he’s not that out of it. I think partly I enable him so I also am working on stepping back and letting him hit a lonely bottom (so to speak) so he has to start reaching out to his friends and family and let me have a little life of my own. Thanks for your post

  30. Diane

    So glad I stumbled onto this site. Sounds exactly like my life; 59 year old husband; diabetic since age 9; heart disease, strokes, hearing loss, and recently diagnosed with MS. I try to just take one day at a time and always think it could be worse,even though I miss the companionship/partnership we no longer have. It’s turned into more of a parent/child role and that’s tough. I’m so glad to be hearing from others going through the exact same feelings as it makes me feel like I finally have some people that “get-it.” It’s just a very sad, lonely journey. Would really like to connect with people here just so I don’t feel so alone. Thanks for listening.

    • Kim

      Hi Diane I too take care of my husband and feel alone, resentful, anger and he is struggling so then I feel guilty. It’s hard to ask for help because right now I can do most everything needed. He has a severe back injury and neurological damage. He walks with a walker but is so scared of falling which he does regularly that he doesn’t leave the house without me. He once just a few years ago was a strong vibrant active man. This is such a shift that we just didn’t ever think would happen. I too often think this could be worse just to get me thru the day or the moment. We are 53 and I am so sick of the pitying looks I get from people and them saying “oh you are both too young to go thru this” or “you do too much you should have help”.. While this might be true it is not comforting or helpful at all. I thought about putting a support group together in my small town for caregivers of family members. I’ve cared for my dad, my mom-in-law and I also caregive for a living but caring for a husband has it’s own unique set of issues. Thanks for posting your comment.

      • Diane

        Hi Kim:
        I so know what you are going through and feeling. It’s such a helpless, desolate place to be. This is not at all how I envisioned our lives to be. I was hoping to have some great years together after all the kids were out on their own and instead, we’re in this situation. I too would love to have a support group around my area, but most of them here are for widows/widowers which is not the same as a caregiver for a spouse. I’m looking for some sort of group that I could join so just once in awhile I can get around a fun atmosphere and “laugh”!! Don’t do much of that anymore which is sad. Right now I’m just trying to get along with my husband without him getting angry at everything I do and say. I know he feels like he’s a burden and absolutely hates it, but, if he would just “try” and get along a little better so everything doesn’t become extra work for me. Sounds like you are in the same situation as I am so maybe we can gain strength from each other. Where are you located?

        • alissa

          Hi Diane. It’s amazing how everyone says the same thing. We may be dealing with different deseases, but the caretaker job for a spouse is the same. I have tried to put together a support group. I live in New York. People that are caring for elderly parents or Alzheimer’s patients were the only ones that came. The groups are not as popular any more. I also did not want it just to be a pity party. I wanted people to feel comfortable venting, but also relax and laugh. Like you mentioned, we don’t laugh much these days. I really think that spouses are not comfortable venting about there relationship in a strange group. I don’t think they would be really truthful. My best to all. Alissa

        • Kim

          Hi Diane, I am located in northwest Connecticut.

  31. Max Flyer

    My wife has end stage renal disease and it has gotten worse over the years. It is very frustrating, she is older than me but we are both still young we a child. It gets hard because she gets angry and irriated very quickly she feels as if no one cares we have no family support at all, she is always tired, she gets a lot of cramps and is not very intimate because of the disease, and it is hard I feel like I’m a married maqn that’s single. Life gets very boring I use to have outlets but those are gone, I don’t really get excited about things anymore because of fear of disappointment that we won’t be bale to do them because she might get sick. its hard going on trips because of dialysis and then its not guaranteed that she is going to feel good after so that kinda ruins the trip or if we are having a good time we can’t end it right because you can’t have sex, sometimes she wants me to be more romantic but im like whats the point it feels like a waste if I pre-plan all of this stuff as a surprise and then we can’t do it because she gets sick. Her sickness puts a damper on everything, it has put me in a bad mental space to where sometimes and don’t get me wrong I do love her very much but sometimes I want to leave and then sometime I don’t because of guilt of leaving IT’S SO FRUSTRATING!!!!!! it makes me angry at times because family and friends call me to hang out and I always have to say no because of her illness so now they don’t even call anymore because they know I can’t go, I can’t even hide my facials expressions anymore because she knows that im upset that I can’t do anything and its because of the illness, I have been to support groups, I have talked to counslers I have vented to everybody and nothing helps and the temptation from other women makes it even rougher but I turn it down but it is hard to turn down sometimes because I don’t get it at home. I don’t even feel like a husband anymore I can’t even get it off my mind no matter how hard I try, I’m very miserable if you have any advice at all please help! I don’t know how much more of this I can take

    • alissa

      Hi Max. My husband is in dialysis as well. He is listed for transplant, but that could take years. Just like everyone else on this blog, I feel lonely and hopeless. Like you said, its like living single but you can’t go on with your life. I think about an affair all the time. I don’t even feel guilty. I just don’t have the freedom. My husband also is vision impaired now, so he can’t drive. I am nurse, maid, and chauffeur. I long to feel like a person again, but then I feel bad because I am feeling sorry for myself. He has become totally dependant on me, and very angry about that. There really is no relationship beyond that. I have also tried the support group and therapy route. It really doesn’t help. I try to be positive, but I see myself disappearing down this dark hole. After a while you don’t know what to pray for. He keeps threatening that he will stop dialysis because he is miserable. He is also older than I am. It’s very difficult to give up your own life to do this.Only those who have been a ccaretaker can understand the emotional roller coaster. Hope everyone reading this has a better day. Alissa

      • Diane

        Sending hope to you both and just saying “hang in there.” I know some days are worse than others, but then some bright spot will come along to give us the momentum we need to keep climbing these hills. When I feel lost and hopeless, I try to find something to do just for me. Shopping, a long walk, exercise anything just to try and get myself out of the dispair because no matter what–we’re all in this for the duration. Some days my husband is just so angry with his situation and it all comes rolling down the hill to me because I’m the easiest target. Those are the toughest days. I want to lash back at him, but I just get out of his way and let him be alone with his anger. I feel bad because I know he doesn’t feel well and he hates that his life has turned into this and I also know he doesn’t mean to upset me, but it still happens. We are the targets along with everything else. This site always helps me because now I know there are others out there going through the same thing and in some cases worse situations than I am, so we just have to lift each other up and encourage each other through the dark days. With God’s help we will make it.

      • Scott

        Hello Alissa. Your situation sounds similar to mine. My wife has end stage Liver disease and is on Transplant list but we are told it could be years before she could be transplanted or may not get the opportunity at all. Slowly she is getting more I’ll and consequently I have to provide 24hr a day care. Only recently I have arranged for someone to give me respite for 3 days a week but doesn’t really help as I work those days to pay for the caregiver. But I had to do something to get me removed if only temporary or I would have gone nuts. The caregiving has turned to resentment and I find myself longing to separate myself from this situation. I apologize to all the other loving and we’ll meaning caretakers I read about out there but because of past wrongs in our marriage I find it very difficult to forgive and makes it even harder to be in the spouse caregiver position.

        • Jo

          Hi Scott, my name is Jo. I completely understand your feelings of resentment. I feel that way often. For the problems we did have in our marriage, for the most part it was good. But, I think that the resentment I feel is more at the disease(s) than at my husband. This is not what I envisioned our retirement to be. We had some good/fun times that offset most of the bad. Now, I am miserable but the feeling of obligation is great. I resent the obligation I feel, the guilt I feel when I am resentful, and the expectations of me on a daily basis. It is like a seesaw all day every day. I get through it by embracing the good moments in the day. On another note, that I hope will help you. Foregiveness…I am 68, had a lot of difficult people in my life. I found that foregiveness did not exist for me. What did exist was the feeling that the people who wronged me were not worth the mental and physical effects resentment and hatred had on me. Soooooo, I learned to let it go. I learned not to hate them, for me, not for them. In doing that I was able to achieve a peacefullness hatred and resent do not allow you to have. what is foregiveness, really? Do we really foregive, or do we just find a place where the hurt is put on a back shelf so we can get on with our lives without being miserable? I hope you can find that place of peace, for you only you.

          • Scott

            LllI know what you are saying. but I just can’t let it go. I had been hurt so bad years ago. My only solace was planning to go my own way upon retirement. Now with her illness I am trapped and feel obligated to stay and help but I resent it more and more every day. It’s not fair that I have to be her 24 hr caregiver when she did not manage her health during her life. I am healthy and able to do most anything. But now as I am retiring I have nothing to look forward to in retirement other than being in a long assignment of being a caregiver to some one I really don’t care about

        • alissa

          Hi Scott. The transplant thing is torture for everyone. There are no guarantees when or if it will happen. Just a waiting game. It’s very difficult to keep all of this going when there was animosity in the marriage to begin with. People get more selfish and self absorbed as time goes on. A lot of it is fear and anger on both sides. We are just existing. Trying to find a joyful moment is hard sometimes. I miss being a real couple. My husband along with his anger and resentment, sometimes seems almost jealous that I am well. I know this is very common, I am worn out feeling guilty. He knows I am miserable. I don’t know how to manage the isolation and lonliness. I try to stay positive and keep it together, but it’s a losing battle.

          • Jen

            Hi Alisa,
            As sorry as I am to read your story, it makes me feel less weird. My husband has been on dialysis for the past 2 years and on a transplant list (as I am not a match). I feel as if I as a person have completely disappeared. I am only 29 and feel like everyone around us only sees me as his wife but no longer as me as an individual person. What really started annoying me was the “how is he doing” from people instead of the normal “hi, how are you?” to start a conversation. It makes me feel very depressed at times and the loneliness is very tough to handle. I almost feel as if my husband is too busy feeling sorry for himself than to accept the fact that this is what it is and to try to make the best out of it. He blames anything on the dialysis, when he lies to me, when he’s mean to me, and I’m getting frustrated. I also understand max frustration with trying to plan anything. We were planning on having our first baby when my husband got sick and had to push it off. This is a very big disappointment that I’m really struggling with. What also bothers me is that he is always in a good mood and nice and pretending to be fine when he’s with friends but exhausted from the faking it when with me. I have read that this is very common, but it doesn’t make it less hurtful. I hope that this is helping others feel less alone as reading these stories made me realize that there are others going through the exact same situations and emotions as I am. Thank you all for sharing.

          • Scott

            I know how you feel. I get more depressed as time goes by. I feel as though my life has ended. It is a depressing and lonely life to be mostly sequestered in your home, your only duties to provide constant care for a very ill spouse who is increasingly getting worse. I really hope your husband does get his transplant and you can return to a normal life. I too dream of some intimacy with some one else, but I laugh at that thought as I realize I have no spare time for myself, let alone share it with someone else. The bad thing about caring for someone with end stage liver disease is the doctors continue to hold the transplant like a carrot in front of you and continue to treat you in the interim regardless of your quality of life. Such is the case for Livers, I hope it is not your case.

    • Still young & in love, but so sad, lonely & resentful

      Just read Max Flyers comment & empathise. I just turned 37, have been 28th my Husband since High School, almost 22 yrs. We’ve got 2 young teenage Sons, both in High School. We just found out my Husband is stage 3 Renal Disease. I get frustrated over his health & the impact it has in our life. I often feel reasentful that he “never feels good enough to spend time doing things as a couple, there is no fun & enjoyment for just the two of is”. We still have sex, it’s not the same as before he was sick, but I still enjoy it very much, it’s just harder on him & less frequent, but I guess it happens as you age anyhow. He’s not old, (5yrs older), but his health has impacted everything. It’s hard when you want to enjoy life, but the sick spouse holds it against you, like U should spend your every waking moment experiencing their misery & or catering 2 their every want & need “because they’re sick”. I mean realy, you’re not f-ing dead, if your hungry or thirsty & I need 2 sleep So I can continue being a Mother to our kids, take care of bills, groceries, and not want 2 just selfishly end it with you, please get off your sick – “death” bed & handle it your f-ing self 4 once! I LOVE U but I deserve 2 be happy & normal sometimes too, I’m here 4 you, but Im not dead & dying, nor or U dropping dead right this moment so instead of moping around, try 2 enjoy life at least some of the time! As I’m stirring this, tonight marks the second pre areanged & paid for couple activity sans children in a month span f-ed up by him “not feeling good”. Kids not home 4 night due to our plans & here we are angry, frustrated, sad & hurt once again. I know we LOVE each other but neither of us is happy. We just are…

  32. richard

    Hello my name is rick I worked my whole life but I only have a 3thd education so when I was 18 I got a good job making like 24,000 a year and that was over 30 years ago yes I was rich lol.. but then at my job my friends burnt to death then my life changed I did not know what was going on with me thought I was dying but after years going to the hospitals and trying to get help then like 10 years later I was told I have panic attics I just thought I had a bad heart they never left me but I was doing ok then my friend hooked me up with a quiet girl then I thought she was nice so I had some money and cars I opened a nightclub then she asked to marry her me so I said ok in one year I bought her a new car had a baby opened a bar bought a new car with some anxiety but the panic was not hear after 3 years my back went out l4l5 lower back then I could not walk or stand for 3mo got better but the back would only let me stand or sit for like 15min so I would have to lay down but I ran the night club from my bed well I dealt with all the problems on the phone and my wife collected all the money and banking as I stood home and have not left my house for 15 years but we saved up 420,000 in a safe as then my stomach all a sudden I got pain real bad pain so then I was bed bound for 2 years and my wife would leave me home a loan for like 8 hours a day and no she did not have a job to keep her away from home but she was always with my daughter her step daughter I will come to the end now my wife was my caretaker she took care of everything out of the house my meds are food so one day she went to get are 19 years old son some paints and never came back home and she also stole the safe with 420,000 and my collectibles gold and silver and my social security for 11 years so now I cant get disability she took all that stuff as I thought I was dying with stomach cancer member I don’t leave my house or did I ever pay a bill my wife did all that and now shes trying to make me homeless because now she wants the house sold even that she has the 420,000 cash and I cant even get half back because when your married in Californian there is no crime to steal or rob a sick husband..i found a helper to get the food and help me because I cant bend over or leave my house

  33. elena

    The hardest, the toughest time in my life. When I met my husband he was the world to me, he is the world to me now. But I am struggling. So afraid. so don’t know what to. So don’t know how to deal with everything. SO LOST.

    • Cynthia

      Elena. I’m with you. This is a very tough time for both my Honey & I. Some days and some nights seem to escalate. But when i think of what He’s going through, I feel guilty for how I feel. I want to cry and scream and want to wait till he falls asleep before I do so he cannot see my pain. I want to stay strong to encourage him to stay strong but lately feel as though Im walking on a tightrope. If Jesus wasn’t in our life I know it would be harder. My confession, if I keep up this routine, I might drink too much to deaden the pain, but each day I know thats not the answer. I know I need to find something, an outlet, he need me.

  34. Penny

    My name is Penny and I am over being stuck in this house with a man that is so self absorbed that he sees nothing but what he wants to see. He has told me numerous times that if it wasn’t for him I wouldn’t have anything. I was doing fine before I found him. I have limited help because I can’t trust him to not tell “stories”. I am his caregiver, that is all. When he betrayed me by going behind my back and giving everything to his daughter, except the house-she didn’t want it, that was it. He has pushed away or ran off any kind of real help that I can get without having to pay for it. Hospice walked out of our home because he was a danger to their workers. He likes guns, shot himself in the foot to see what it felt like. I have been told, by him and his daughter, that it is my job and my responsibility to take care of him because we are married. F*** that….The only reason I am still here is because my conscience won’t let me leave. He is always so wonderful when other people are around so I just look like a bitch. I die inside a little bit everday….I am 45 and have been enduring this for 2 years.

    • Maribeth

      Wow Penny, You have a lot of anger, at times so do I although most of the time all I feel is love & compassion for my husband who has been battling AML acute leukemia for two years. Your husband sounds off balanced, I mean really? He shot himself in the foot to know what it felt like? That’s pretty out there. If you truly feel this overwhelming hostility & hatred for him you should leave. As I said before, I too have anger at times, but through therapy I realized I’m angry with the disease, I’m angry at the impact it’s made on our day to day life’s, I’m angry that I’m going to loose him sooner than later. I do love my husband with my whole heart. Maybe you too could benefit from counseling, it’s made a world of difference in how I view things. Good luck to you.

      • Lisa

        Hi Maribeth. I see that you siad that your husband has had AML for 2 years now. My husband was just diagnosed in May and he just had a bone marrow transplant. I am curious about what I have ahead of me. It is somewhat difficult as we are learning about all the challenges he is going to have to face. This is his 3rd Hospital stay since he was diagnosed. The first was for about 4 1/2 weeks which I stayed with him a the Hospital the whole time since we both were truly scared and not sure what to expect. The second Hospitalization was for 9 days and although I did not stay overnight as I had in the past I was still with him quite a bit as we as this 3rd stay which has so far been about 3 weeks.

        Both fortunetly and unfortunetly I work full time at the Hospital he is currently at. When I say unfotunetly I just mean I get no break. I come in early to see him then I start my work day and then all my breaks are spent visiting him throughout the day and then when I end my day I go visit him so I never feel like I leave here but I also say fortunetly because of all the same reasons. The first hospital he was in was not very up to date and unwelcoming so we really felt uncomfortable leaving him alone there but the current hospital he has several Cancer wards and the units have only been open for a couple of years so they are fresh and clean which makes a big difference as you know when you have to stay for weeks on end just in the same area.

        Anyway, he is hoping to be able to come home soon once his counts come up. I am more worried about that as I of course have to work part-time and do not have any phsyical support other then a VNA comes in for a 1/2 hour 3 xs week to check his port and vitals. I want to know how your spouse handled the isolation (if he had to) and how you manage to make the time for yourself that everyone says you need, Do you have much outside support? I know I am going to feel guilty when I have to leave him for hours on end so I can work and then how do I justify leaving him to “make time for myself”.

        Any insight you can give would be great.

        • Maribeth

          Hi Lisa, The bad news for my husband is that they were not able to find a bone marrow match for him. The good news is that my husband was willing to take place in clinical trials, because of that, he is now in remission. That remission has come with baggage. Because his immune system was compromised because of the clinical trial study that he is on, he contracted c-diff, a nasty bacterial infection that is difficult to treat. He was in the hospital for seven weeks battling that. On the heals of c-diff, he also had a bout of pneumonia, that was caught and treated early. It’s been a rollercoaster for certain, in and out of emergency rooms and hospitals, my husband has been very stoic about the whole thing, I have been experiencing emotional issues, terrified of loosing him. I started to see a therapist and highly recommend it. No one really wants to hear about your loved ones ill health two years in, everyone has problems of their own. Seek out a good therapist who’s job it is to listen to your fears and concerns. Don’t say you cannot afford it, you can’t afford NOT to seek help. At first I went thru our local hospice and didn’t have to pay out-of-pocket, you write that you work for a hospital, find out what they have to offer. My husband cannot travel and I have (just recently) started to take a couple of small weekend trips to see friends and relatives who live out-of-state. I’ve also made a few lunch/early dinner dates with girlfriends. After two years of living with cancer, I need to do these things on occasion for my own sanity. My husband supports this decision and I don’t abuse it, but I do it. I make sure that my son (who lives in the area) checks in on my husband and our neighbors too. They are supportive and outstanding. The one thing I have learned is that you need to ASK for help, people are busy in their own life’s and they are not mind readers, but when asked, want to help. I hope I helped you with my point of view. Keep in touch and the best of luck to you and to your husband. MB

    • Pam

      I understand your frustration….and you are very young….but let me share a bit of our journey. We have not been married long….it will be 13 years this December. Roger, my husband, was diagnosed in 2009…and becomes of this and that…and because I did not know I should have gone to an attorney when he was turned down for Social Security Disability…well, we did not get disability for him. I recommend to you 36 Hours….and I have other books I would share with you…but if I may…I will share my faith. God continues to give me peace and peace of mind through this journey. It took me pretty much all summer to get him successfully going to a day care. I could have given up, but..just like going on a plane…you have to put your oxygen on first..before putting it on the person..child..etc. with you. I know we just can’t be happy…but all of life makes us bitter or better…and we are on this journey to teach and to learn. I always ask myself what am I learning from Roger? I calm myself..and just let him be him. He is sometimes the ALZ – him….and sometimes my sweet Roger him. I am learning – through God’s love flowing through me..to love both of him! prayers for you…and peace of mind for you and for your loved one!

      someone asked me how can I believe in God – and see someone go through these difficulties. I say I think it would be impossible to not believe in God, and in God’s love, and to go through these things…

    • Katrab

      Dear Penny:

      I am sorry for what you are going through. I am married to a man for 25 yrs. and he has had MS for 30 years. He recently went down to the point where he can’t even stand up anymore. His upper body is good. I had him in rehab for several weeks but my insurance stopped paying. Well, he’s here, at home with me and my sister (who lives on the other side of the house). We care for his every need. I have a lift and basically all of the stuff I need to do the job. I go NOWHERE. I have no friends. My mother is in a nursing home. I didn’t mind caring for my husband up until recently. I swear he is acting like he is possessed by Satan himself. He rants and carries on all day long about complete nonsense. The stuff he says makes my hair stand up on end. What is going on? I feel like I died in this house and this is my new reality. OMG, this can’t be how it’s going to be. He is now probably the most evil person I have ever known. I make sure the home health people that used to help me out know exactly what he’s doing. They say it’s normal for people with MS. Oh, hell no. Something had better change really quick. I am so, so good to him. Never raise my voice, never argue. Tend to him by his side for at least 12 hrs. a day. I’m tired and I’m sick and tired. So Penny dear. I would like to think that I understand what you are going through. Thank you to anyone who reads this and get’s what I’m going through.


    My hubby has End Stage C.O.P.D. He has less than 5% of his lungs left. He was told about 15 years ago. 6 years ago they found a spot on his lung. In the good part. Radiation fixed that and he is cancer free. But it took a huge toll on him. Our respirolgist reccommded that he go to Pulmoniary Rehab. To learn how to deal with all the coming issues. 5 weeks in house rehab—includes the help/services of occupational therapy, breathing experts–teach you how to breath with hardly any lung left—social workers–for family support—and a Physcologist. The most amazing part of this whole rehab was the physcologist —-hubby had so many worries and fears–for himself and for me as well. This person absolutely turned my husbands mind around—a full 360 ! He came out of rehab and immeadiatly started to get all his affairs in order—and mine as well. He had project after project to complete so he could die feeling that there were no loose ends for me to handle. This past couple of months he has given the kids all the stuff he wanted them to have and has finished (as an after thought) arranging for a Dash Cam to be installed in my car—cause its safer. So once he came to terms with dying, the change was amazing. We have had years of talking about stuff that matters to us and to the kids. He has become extremely vocal on his feelings (could be the morphine helps) and his feeling are not always good. But he got thru depression and anger and other things and came out the man I have always loved.
    So for all of you struggling please please talk with someone. Ask your Doctor about these kinds of programs—-cause as you know the patient will not consider this kind of thing just on your say so!
    Anything to make life easier for the both of you. And my hubby, well he has one foot in Paliative Care as I write this—the time is fast running down.

    • Jo

      Reading the posts you have all shared has been enlightening. It seems we all share feelings of anger, resentment, frustration, hopelessness and abandonment. My husband is 84, I am 68. He is diabetic, had a stroke in 2007 which affected his right side but therapy helped with recovery to most of his functions. He was already retired at the time. I was able to continue working until 3 years ago when his deterioration required constant supervision. He now has dementia too. Not really bad yet but some things he does are extremely difficult to deal with, like not following requests to do things that you need in order to care for him. Like roll over one way, then the other to change him. He broke one hip last year, then the other this past January. He spent 3 months in physical rehab and could walk about 20 feet or so with a walker when he came home in May. It only took two weeks for him to become unable to transition from chair to bed (2 steps). I could not lift or support his 220 lbs and was in a panic re how to safely care for him. He will not work on his exercises very well for me, thus the rapid loss of strength. I actually had him scheduled to enter a Dementia/Alzheimer’s facility on June 1, but the day before found I just couldn’t do that to him. The guilt was HUGE. I found a Hoyer Journey sit to stand lift at SpinLife and it took the burden of transferring off my shoulders in so many ways. It was worth the cost within the first week. The thing that I am having the most difficulty dealing with in regard to him is that he is not a frail wasting away ill person. His various doctors say there is no reason he could not walk well with a walker for balance. It seems he just wants everything done for him and he has even said that it is his right to have the care/service. Our life does not need to be like this. He never is grateful for the things I do for him. He doesn’t care what the impact of his behavior has on me or anyone else. Of his four children, only his daughter is in contact with him. She stops by couple times a year and brings him potato salad. Never offers to come spend the day with him so I can get away for the day. I am afraid to ask her because she is a fairly angry woman and I don’t want to damage any relationship she does have with her father. When we married, he couldn’t stand any of my friends so we all drifted apart. His friends are either dead or really old. He was extremely nasty about any of my co workers, so my friendships with them, while strong, did not include socializing outside of work much. I do manage to get to lunch with them every few months, thank God. My family all lives too far away to be much help other than emotional help. I feel so alone. No one to turn to when there is a crisis. I worry constantly about getting sick and who will take care of my husband and dog. The day to day is taxing with limited sleep. Then there are days like yesterday and today that are like a living hell. Those days are the ones that are destroying me. I get so angry and frustrated I become a person I don’t know and don’t like. The more frustrated I get trying to get him to perform a small task the louder I talk to him, just trying to get through to him. Of course, that causes tension and he gets even more difficult and angry. I do not abuse him, but am afraid that this person I do not recognize will verbally cross that line one of these days. I pen up the anger until I break. A good cry can release quite a bit of tension. But I still hate the strange persona that is lurking in my head. You know, caregivers are giving up their lives to care for their loved ones. It is a thankless job and the only redeeming thing is that we are doing the right thing for our loved one, no matter the cost to ourselves. Some days I feel like I would rather die than face another day like today. But, I thank God every day for the gift of our little dog. Just holding her brings a sense of peace and sanity. I don’t know where we are headed but am sure it will be rough.

  36. Crystal

    Hello, I am new to this site. My husband has MS and Narcolepsy and we have 5 children. My husband is only 33 years old and I am 35yrs old. The problem that I am having and wondering how others handle this situation. I have to work to support our family. Yes he gets disability but I still have to work. I am a CNA at a nursing home and I have FMLA. The problem I am having is my employer hates my FMLA and that I have to be late to work a lot and miss work from time to time. They are making my job miserable. I don’t want to have to start all over at another job because I will have to wait a year until I can get FMLA. How do you handle work and caring for your spouse and raising children?

  37. Sue

    My husband had a ismatic stroke I don’t no what to do either he isn’t the same. Everything I do is wrong he hates me he would rather see me gone I was the only one that stood by him threw it all and he hates me we don’t kiss ,or hold each other we don’t talk much ,we don’t sleep with each other any more I can’t keep going like this Iam lonely , my husband owns a business that has a house on it. Before the stroke he would never aloud any one that done drugs live on that property well he has a meth maker living there. And has the run of our auto. Scrap yard he has found a lab and meth in the house there is also. Stole property there. He yells at me wn I tell him to turn him in or kick him out he tells me Iam a thief and I don’t own anything. What should I do what rights do I have please I need help

    • Jo

      Sue, you should see an attorney to find our what your rights are within the state you live. And if you have proof about the meth lab, you need to visit the police at the station and show them what you have. You never know, by doing so, you could save someones life. My husband has had several strokes. Their personality can change dramatically depending on the area of the brain that was damaged. The anger is not unusual. If the stroke was fairly recent it could be temporary and simply a step on the road to acceptance. If it was awhile ago, it may not get tremendously better. But it can be worked on. Talk to his doctor to see if he has any suggestions for therapy. If you can get him to go, I highly recommend you both attend a stroke support group. If he won’t go, go by yourself. They are extremely informative, keep you up to date on the latest news on stroke and you will meet others going through the same things. These support groups are usually offered through your local hospital or by the county health services. We have been going for several years. I wish you the best and great strength in dealing with this.

  38. cajun ways

    We believe that we are the only ones living like this. I believe I was, I had no net. My husband in 1999, diagnosed with AML. He went through chemo. Went into remission. .over came that. 2010 came diabetes. Osteomyelitis entered his spine in 2012. Six months later, diagnosed with cirrhosis of the liver. Upon reading your text, I feel like I wrote them all. you may feel like my message could be yours. My husband became paralyzed (over nite). One day he is walking, and the next he is not.
    He stayed in the hospital about a week, and they sent him home. At that time we don’t know what has happened. Too weak, we believe. You’ll get better, that never happened. A fever brings him to the hospital, about 2 weeks later. That’s when we get the diagnosis of Osteomyelitis.
    Back home I am a wreck, and I find myself going to the back room to cry. When you get divorced you cry because you realize that there is no more love making , no more movies, parks..
    But to loose all these things and your husband has never left, because he is right there in front of you is a different kind of pain. I cried every night, not sleeping, not eating.. The hospital sends a bill for one amount then sends another, and another. I say that they don’t know what in the hell they’re doing they can’t decide what I owe. My grandmother in Louisiana took care of ill family members for decades, but she passed away years ago. I know there is a 2nd cousin that lived not too far from them. So I called her, I tell her everything. “What in the hell am I going to do ?” “Where do I start? She told me “Yea, I can tell you what you are going to do, you’re going to be a caregiver, and your life is going to change now”. This is where your going to start. You gonna have to stop crying. It’s not doing you any good or your husband, and it’s taking all your energy out. You have too much work to do, you’ll see. That was my first lesson, and the rest I would learn myself. I hear all the work that these caregivers do . It sounds like my list: bathing, cooking, washing, Doctor visits, Hospital visits, meds, go get the meds, do the bills, do the bathroom, do the nails, cut hair, empty the foley, get the wheelchair, wake up at 5:00 a.m. to dress them.. to the doctor, do therapy, and then start over. I went to bed at !:00 a.m. and up at 6:00 a. m. sound familiar ? It is all spiritually, mentally, financially, physically TAXING! I got myself together alright. I turned our home into a hospital (that’s what it is) . Good thing I can do that. Turns out here (where Tx and Louisiana meet at the gulf ), that long term care runs $91,000.00 a year. Medicare will relieve us of 80%. That leaves us with $18,200.00. That’s only for the bed, food, & T.V. Nothing else. Supplemental waits
    for the age of 65. How do you poop out $18,200.00 a year? I decided I needed an assistant at home. Then I realized that’s not going to happen. 2nd best get organized. I did. Remember those bills-the hospital doesn’t know what they want. Wrong- I (we) had 20 different accounts!! all those bills are different bills. Check your account numbers on your bills. I found the same account numbers on both the hospital and radiology. They were double billing us, and others were billing us for periods my husband was not even in the hospital- total amount of over charges $2397.00. I got it straightened out real fast. So many of you starve for human (sexual ) contact. Your going through a slow burn. I crashed from the beginning. I no longer suffer there. Every now and then I would remember to kiss him, (or his hand) . It would bring tears to his eyes. It is a different kind of love.
    He gave me the happiest days of my life. I’ve been married 3 times, but I only had one husband. We spoke to each other like man and wife, but physically it was like mother and child. Oh yea least I forget to mention this- I accidentally found out how to get rid of bill collectors. I know you get them. It doesn’t matter how much you pay some will not stop ragging you out. I found myself having to stop what I was doing, go to the other end of the house, answer the phone. It was always this … woman raising hell about the bill at the hospital. I told her I knew it was a large bill, but you’re getting the largest payment of $375.00 a month. We are doing all we can. She said “no good, you pay bill” . I was so busy I decided that I would decide what to do about this at a later time. You know your busy when you think like that. The next time she called again she said “Pay no good, pay bill” I asked her if she wanted a change. “Yes” “Yes” ” pay bill” I asked her “You don’t like the payment amount”. Her answer was no. I told her ” I don’t like it either. From now on you will get $95.00 a month, and you can call anytime and I will bring it down some more”. I never got a call from them again. The differential went to the Doctors and Hospitals that never gave us a moment of trouble. What does it matter, you have XXX to pay XXX. I gained control over our little world, what was left of it. All I knew is that I loved him. I didn’t want any regrets. I remained positive and upbeat (but inside I felt despair). Only once I can remember the situation really got to me. My husband was asking for a list of damn items, like 8 or 9 things.. I told him I wasn’t a damn insect that can fly around and just drop shit off. I said to him just be patient, I’m human…. I looked at him hoping to find that understanding face that has always been there for me over the years. He then adds 4-5 more things instead! I said ok, I’ll be right back. I went out to the backyard. I took a deep breath and said “I wished a … meteorite would just hit me upside the head and get me out of my misery” . I turn to look at the house, and I realize I can walk out. My husband can’t . he will never walk again. That’s the way of it. Go back to work . My husband was a very, big ,big man. He was the one that protected me. The gun would be next to him at night. But now the gun is by my bedside. I am the one who will protect us if the need occurs. Don’t want any harm coming to us. I lock all the doors check the windows, every night. I look outside before going to bed. But it did me no good last March 12. God came in took him and left. I read on the net that only one state is giving any type of allowance to caregivers. They said 7 out 10 people are facing caregiving responsibilities now . There is someone bringing this issue up to congress. With an aging population it will soon be 10 out of 10. The only qualification needed in my opinion to receiving benefits, is to have been a caregiver. We could use anything as we start off …alone.

  39. Christina

    Reading this thread has given me peace that I am not alone. I am 67..in very good health and shape.. my husband is also 67. We met just shy of our 20th birthdays married 5 months after we met, our first child born 3 years later..that wasn’t the reason for getting married..we just knew this was it, we found the one..August 11th 1968..47 years later still married and still in love..8 years ago he was diagnosed with Multiple Myeloma, blood plasma\cell cancer. Omg he has been through everything..kidney failure, dialysis, blood infection coming from his port antibiotics had to be given twice a day through a pic line in his arm, I had to hook him up, clean the line, oh well, I’m sure you all know about giving meds at home…so many hospital admissions I have lost count..Took a bad fall missing a step going up to our daughters front door..landed on his face, 911 had to come and take him to ER for head x-rays..stem cell transplant was done at UCSF, we had to harvest his cells, that was a painful and grueling procedure, we had to stay in a hotel in SF for a week..which would have been ok except we are raising our grandson who was 10 at the time it meant being away from him for a week..I take care of my husband 100% on my own..Dr appt’s, Lab work, chemo appt’s, helping him wash, shave, when he had Cellulitis he had open wounds on his legs, which meant trips to the wound center..all while raising a boy trying to keep home as normal as I can..he’s scared and worried about his grampa, I’m scared and worried about him and about me as well..He isn’t the tall handsome sweet man I married and have spent nearly 60 years with..it’s been hard getting used to that, and letting our intimacy go..he has to use a walker or he will fall, very unsteady on his legs which are filled with fluid due to his kidney damage..he is hyper sensitive, if I breath the wrong way he drills me with what’s wrong?? you hate me now don’t you?? why should I go on?? you don’t love me anymore..he reduces me to tears he is in tears…OMG it is so draining..so I have to breathe right, to smile right, he watches my face, I can’t sigh, I try not to argue, I stay as calm as I can…I do everything in the home, absolutely everything…I have had so many of the same thoughts that I read in the comments here and then feel so so guilty..I feel so sad for him.. I was glad to find these comments. My State pays me a small salary for being his caretaker..it’s a delicate balance being his caretaker and his wife at the same time. thank you for letting me vent.

  40. Jessica Brown

    Hi everyone. My name is Jessica I am 32 years old, I have three great children Stephen 13, Issiah 7, and Simone 5. I have been married for 3 years know. My husband Ernest, has been on dialysis for three years. We have a daughter together Simone, and my husband adopted my son Issish. My oldest son Stephen stay with his father. Dealing with a husband with dialysis is not easy at all. I have no time to myself and all of my time and energy is toward my children and my husband. My husband has been dealing with his kidney condition since he was 18 months old. He got an transplant at the age of 23, the kidney failed 9 years later. And it failed when we got together. I may sound selfish but I know its not his fault, but its not fair that his kidney failed on me. We don’t go out anymore, we don’t do the things that we use to, and our sex life is out the window. O yeah, my husband is only 35 years old. Very young! What should I do? I only can support a person to an extent. I should be enjoying my 30’s but I’m not. We have been through so much I just don’t know how much I can take. Could anyone give me any advice or help on this situation? Thanks to anyone who reads my post

  41. Katie

    Hello, I am becoming a caregiver to my sweet wonderful husband he is 59 I am 52. He was recently diagnosed with ALS. We are both on our second marriage and never knew it could be as wonderful as it has been only 9 years. Now, I am working full time as well as the full time cook, parent, house keeper and all. I lay in bed wondering how to pay the bills, meet the needs of my husband and those of our teenager and still remember myself. We have talked that things are not the same as they were. It is sad but as I live each day to touch him, look into his beautiful eyes and know our days are literally numbered I treasure those little smiles and touches. wishing you all the best, and sending you all strength.

  42. Marlene

    My wife has been ill for over 5 years. She has not yet been diagnosed. She has been to numerous doctors and no diagnosis has been found. She is in constant pain and has had to take off days from work. I, too, feel resentment, anger and guilt over having these feelings. I “should” be a loving partner and give willingly because she is my wife. I am making a life for myself but that means we do not spend much time with each other. I find it difficult to be with her and watch her suffering. I also feel angry because I blame her as well. If she ate better, if she took care of herself, then she would not be this sick. I am angry because I feel she reneged on our bargain to lead an active life. I try to be loving and take care of her but she gets angry when I offer suggestions. I go between wanting to help to wanting to not be in this situation. I resent that this may be my life for a long time. I know we married for sickness and health and want to feel loving, but we have a minimal relationship because of her debilitating situation and I am feeling less and less in love.

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>