Learn About a Day in the Life of a Caregiver

By guest blogger: Kay E. Engle

Ms. Engle is a retiree whose offer to care for her aging mother began a difficult but unforgettable journey of caregiving, love and understanding. “A Day in the Life of a Caregiver brings to life both the rewarding and challenging aspects of caregiving and the relationship between mother and daughter. Engle powerfully describes the daily frustrations as well as the daily victories of the role, and reflects on what it all means.


Learn About a Day in the Life of a CaregiverI squint at the clock by my bed, barely opening an eye, putting off the inevitable – morning.  It’s early – 7:15 am – not as early as I used to get up when I was working, but now I am retired.  I have “earned” the right to sleep late.  It is early by my new caregiving standards, so I stubbornly wait till 7:30 to get out of bed.

I am a person who needs a routine to accomplish daily tasks.  So the transition from a 40-hour work week to (literally) 24/7 assistance for my mother required some structure for me to survive.  For example, preparing meals at regular times during the day – lunch and dinner (and eventually, breakfast).  This may seem trivial, but my goal was to keep her eating, and keep my sanity at the same time.  Let me explain.…

She had been living with my sister, but had suddenly lost weight – 20 pounds in six weeks.  She “forgot” to eat the lunch so carefully prepared by my sister – or thought she had eaten it when she had not.  So it became obvious: I was retiring and she needed more help.  I retired on Friday; she moved in on Sunday and our ‘dance’ of relationship and care began.

7:30 – OK, I leap out of bed, grab my robe, call the dogs from my bed and stagger to the living room.   Dogs outside, TV on, coffee started, I plop in my chair and wait for signs of life from her room.  Sometimes she rises before me and I find her already in the kitchen making her breakfast.  I say, “Good morning,” and leave her to eat her oatmeal (rolled oats, she calls it) and toast.  Meanwhile, I let the dogs in, watch some TV, shower, make my usual egg, and drink my coffee.

That was easy, right?  Sure – the first 30 minutes of the day.  Now what?  Is there food for lunch, dinner?  Morning and evening meds?  Incontinence supplies?   Money to pay for all this stuff?  I check the cupboards – let’s see – we’re out of juice and running low on disposable underwear – a trip to the grocery and drug store is now on my to-do list for the day.

Breakfast over, Mother settles into her chair facing the patio where she can see the bird feeders.  I bring her morning meds and a large glass of ice water with a straw and watch her take them, two at a time (she sometimes stashes them in the chair cushions).  Two small, furry faces watch me as I follow this daily routine, eager to go for a short walk down the street – only a few minutes – but usually productive in a “poopy” sense.

So, I have had my breakfast, walked the dogs; Mother is comfortable, reading her book – I can leave the house.  I don’t like these almost daily trips for meds or food or underwear, but they are part of my new “job.”  Why daily trips to the store, you may ask?  Some days she goes through an entire package of disposable underwear although sometimes she refuses to change them for hours.  She senses they are expensive and she is right, but I don’t tell her the cost.  To me, the cost is not the issue – fresh, dry “pants” are a necessity.  And certain grocery items are a must if she is to eat sufficiently to maintain her weight, or even gain some of what she has lost.  She won’t eat what she doesn’t like.


It’s now lunchtime – 11:30.  Let’s see – what to serve?  (Her tastes are limited.)  I have made a batch of mashed potatoes (her favorite), bought a rotisserie chicken, cooked some green beans (or peas).  I put some of each on a plate, microwave it, add some butter and serve her as she waits in her room or the living room.  She reaches for her “Krazy Salt” and happily digs in.  When she is finished, I whisk her plate away so the dogs don’t get to it first and serve her favorite dessert: fresh raspberries with cream and honey.  She always had a sweet tooth.

Fresh raspberries?  Even in winter?  Aren’t they expensive?  Yes – she’s 96 – next question?

And then there are the changes that often leave me scratching my head: for example, for years she wanted hot drinks – coffee, tea or just plain hot water – sipped delicately from an old china teacup.  Now, suddenly, she wants cold drinks: water with lots of ice and cold juices.  I struggle to understand this change, grateful for an ice maker which provides a steady supply of the frozen chunks.  I refill her large glass many times during the day.  Automatic ice makers are not familiar to her so she leaves this task to me.

I confess that the inability to fill a glass with ready-made ice cubes is difficult for me to comprehend.  How hard can this be, I wonder as I refill her glass every couple of hours?  Meanwhile, my siblings question my reluctance to leave the house for more than an hour or two.  They don’t ‘get’ our mother’s increasing decline and dependence.

Afternoon – we have small amounts of chit chat. (She is very hard of hearing, making conversation difficult.) I ask her to go out on the patio or for a drive but she usually turns me down.  I offer snacks (chocolate is never declined).  Sometimes I make quick trips to the store only to hurry back to fill a glass with ice water and start dinner.

4:30 – I serve dinner early for my convenience, not necessarily her hunger, but she is always ready to eat, perhaps due to forgetfulness or maybe a little dementia.  Whatever the reason, she waits in her chair, salt shaker at the ready, for her meal.  I hover nearby to retrieve her plate when she’s finished and serve her dessert which she eagerly accepts.


After dinner we watch TV or a movie.  I turn on the subtitles so she can follow along more easily.  Some of her favorites are Driving Miss Daisy, On Golden Pond, and The Whales of August.  I love to hear her laugh at some of my – now our – favorite lines: her laughter is music to my ears.

I work hard to respect her privacy, now diminished by our small living space, offering assistance when I sense or see that she needs it.  As she declines further, I help her undress, get into bed – arranging her shawl over her – just so – the way she likes it.  She thanks me for remembering her ”ways.”


Caregiving means paying close attention to small details – noticing small changes in behavior – struggling to make sense of often irrational thoughts and requests.  Caregiving means knowing that “care” includes the preferences as well as the safety, hygiene and health of a vulnerable adult.

Does all this special attention make a difference in the quality of her life?  Hopefully.  Does it prolong her life as well?  Possibly.  Is this important?  I think so.  To ignore the constantly changing health – mental and physical – of an elderly person, parent or not, is not a choice I would want to make.  We all want to be independent; none of us want to have to depend on anyone – especially our grown children.  Unfortunately, the aging process doesn’t always respect our wishes.  So I do what I can, help where I can.  And love as much as I am able, protecting her from fear and pain with the help of family and agencies such as Hospice.

But it’s probably never enough – there are inevitable regrets.  I am not perfect; I make mistakes.  I can’t always understand the changing behaviors and attitudes that occur with age and I admit to some not very pretty reactions to a few of them.  In the end, I pray my mistakes will be forgiven – expunged from my conscience by a compassionate God.  And maybe, just maybe, I may finally understand the complexities of the aging process and share them with other caregivers.

Can you relate with Kay? What are some of the challenges you face as a caregiver and what gets you through your day? Feel free to share in the comments section below.


  1. Ann Napoletan

    What an absolutely beautiful story, Kay. I have a feeling there will be a seat waiting for you in Heaven. Your mother is so blessed to have such a wonderful daughter. Sending prayers to both of you …

    • Kay

      Thank you, Ann. I appreciate your kind words. I had no idea what I was getting into when my mother moved in. I foolishly thought it would be like having a house guest. Boy, was I ever wrong!! 🙂 Thanks again!!

  2. Annie LeRoy

    I believe those of us at the Alzheimer’s Reading Room could benefit from your story

    • Kay

      Thanks, Annie. There is so much to learn about the aging process and all that comes with it. Everyone’s story is quite different yet still the same. I know I learned a lot.

  3. Diana O'Daniel

    I am the eldest of 5 daughters, disabled and now my Mom’s caretaker. She is 83 and since January is living with me and my family. We are now a three generation home. And yes, I can relate to Kay’s story.

    The routine is quite similar really. For me the hardest part is Mom’s increasing dementia and lose of hearing. I find myself repeating conversations over and over again and wondering if I’m the one who is losing a mind!

    The other piece is Mom’s desire to share her often negative opinion to the youngest member of the family. I end up having to be the mediator and negotiator, making our family life difficult at times.

    In the end, doing this for her helps me feel better about her situation and models a loving approach for the younger generation. Looks like I’ll need plenty of help myself and maybe, just maybe, I can avoid some of the negative aspects of this arrangement with my sons.

    • Kay

      Boy can I relate to the hearing loss issue. That really frustrated me and wore me out over time. My sisters suggested I write notes to my mother, but how can you possibly do that all day long and stay sane!? You comment about your mom telling tales to siblings really rings true to me, also. I made a point of calling one of my sisters to give them details of not-so-nice encounters with my mother so they wouldn’t hear it from her first. The best of luck with your mom. She is very fortunate to be in your care.

  4. Diane Catalano

    I have been caring for my husband for the last 8 years. At the age of 61, one year post retirement, he had a hemorrhagic stoke. The stroke left him with left sided weakness and neglect, short term memory loss, and visual changes that make it difficult if not impossible to read. He needs assistance with personal care, walking, dressing, and eating. He cannot shower or bathe alone, cannot use the toilet by himself and cannot be left to walk by himself, even with a tripod cane.

    At the time of the stroke, my focus was only one minute at a time and today…one day at a time. On difficult and frustrating days, I relapse to one hour at a time. Disrupted sleep, anxiety, loneliness, increased responsibilities all contribute to feelings of sadness, anger, and depression.

    I care for my husband because of the love we have shared over the years. We had health insurance, but that covers for just so long. I spent thousands of our savings on extended therapies, braces, prism glasses, and computer generated therapy. I now know that unless you have unlimited resources where you can hire therapists to do ongoing therapy, your loved one will eventually have to forego long term help.

    The family caregiver gets no financial help even though they are saving thousands if not millions of dollars by caring for the person at home. How very sad for us all.

    • DanaLarsen

      Being a caregiver for an aging loved one is one of the most difficult things in life, I think. Your husband is certainly lucky to have you. I have watched my mom go through all the frustrations you mention as she has had to care for my grandma who is in the latter stages of dementia. I, too, feel like watching my grandma’s physical and mental decline has not only been heart wrenching, but tragic. After all, there’s only so much one can do for long-term help. It’s all about making their time left as pleasant as possible (which, of course, requires extensive sacrifice on your part). So hard…

      • Kay

        This may sound funny, Dana, but I think you are fortunate to learn first hand what caregiving is like. I agree completely that caring for someone near the end of life is quite a challenge as well as sad. I didn’t think about it very often except when my mother slept longer than usual or wasn’t hungry. I did think about it in terms of watching for signs of decline, however. And yes, caregiving can be very frustrating. Thanks again for your comments.

    • Kay

      Diane, wow! You have a very big job to do. Caring for your husband has got to be extremely tiring not to mention emotionally draining. You have good reason to feel depressed. You are right about caregiving being an awful lot of unpaid services. No one plans for illness in a family. Eight years is a very long time to have caried on such a demanding job. May God bless you for all you do for your husband.

  5. Lucy Freeman


    Your words so eloquent, your heart so open, your tasks so many; you are an angel taking such meticulous care of your mother who once took care of you. Nobody loves us like our mothers. This is why we do what we do. My own mother has Alzheimers and I can so relate to what you have written. God bless us all.

    • Kay

      Thank you, Lucy. I wrote a lot while caring for my mother – about the good stuff as well as the not so good times. I wanted a “record” for my sisters who probably wouldn’t have believed me if I simply just told them my experiences. I am so sorry about your mother. That is a dreadful disease and my heart goes out to you and everyone who cares for a loved one in that condition. My mother had dementia so often I didn’t know if it was her speaking or a stranger. It’s difficult to make your brain tune out those things that don’t line up with your heart. All I can say is I wish I had known then what I know now. On-the-job training is not the best way to approach caregiving, is it? God bless you and your mom, Lucy.

  6. Jan Bridges

    For 37 years I took my Mom through mental illness,various physical illnesses including a brain tumor and frontal temporal dementia and ending with Alzheimer’s.
    She passed away two years ago and my husband had a stroke 5 days later caused by food poisoning sepsis resulting in severe cognitive damage can no longer work and cannot be left alone for long periods of time.
    I am very fortunate he did not have any long term physical limitations of any major consequence.But I have to say I am tired, very tired and frustrated there is so little support for caregivers both financially and emotionally.
    I have learned so many lessons the “long way around” and would love to not only listen to others of their pitfalls along the way but to be able to brainstorm on ways to help others avoid some of those same negative experiences from health care to gov’t agencies to assisted living facilities.
    Many of us are are the doorstep of entering into this often times unsettling world of elder care and I believe we can make it better for ourselves and our adult children but how …where do you start to really make a difference.

    • Kay

      Wow, Jan! What you have been through is amazing! I, too, learned caregiving the hard way. Every time my mother’s health (mental or physical) changed, I spent a lot of time trying to figure out how to handle it. I understand how tired you must be. My sisters kept telling me to get out more, but they did not understand that it took more time “briefing” them on Mother’s needs and preferences than actually going somewhere. In fact, I left quite a long note explaining her schedule when I did go out for a day trip and my sister didn’t read it until I got back. :-/ I was fortunate to have one sister who knew all about health insurance and another is a nurse so I had some help, but they did not “get” the process of decline. I think websites like this one are a great source of help. Best of luck!! I hope things get better for you and soon!

    • Pattie Sarni

      i thought anyone who was old enough to collect ss can get into a assisted living place. if you dont have money, they take your ss check.. that’s what im doing, and im going into a beautiful new center.

  7. Sue Blackwell

    Kay. your story is my life right now.Almost to the tee. It helps to know where others have walked. Sue

    • Kay

      Hi, Sue. Thanks for your comments. Caregiving is such a remarkable journey with both ups and downs. The biggest “down” is finding someone who understands what you do every day. I have 3 sisters and only one of them really understood it because she had witnessed her mother-in-law’s decline. I got lots of advice from others, but most of did not apply to a caregiving situation. Hang in there and God bless you for being there for your loved one.

  8. Brenda O'Neill

    I have been Kay’s friend and ‘adopted’ sister for over 15 years. Though we live in different states we stay in close touch with occasional visits and frequent phone calls. I know of her many long day and nights caring for her mother and her frustrations and concern to be doing it ‘right’. Though not always easy Kay has continued to serve others with love and kindness both individually and in groups.

    I’m so glad she is sharing her journey.

    • Kay

      Thanks, Brenda. Boy, as you said there was plenty to be frustrated about caring for my mother. Fortunately, there was humor, too. When I overheard her referring to my house as a “shack,” I sarcastically repeated it to her when asking her to come to the living room to watch TV in my little “shack!” She gave me a quizical look (like how did I know that?) and laughed with me. I sure loved to hear her laugh. Take care, friend, and thanks again!

  9. Ellen Myers

    I too, care for my mother 24/7. However, my mother had a stroke and is totally dependent 24/7. I have not had REM sleep in 5 years. She wakes early, somewhere between 4:00 and 5:30am and I have to clean her up and make her breakfast and feed it to her. She has diabetes, so I have to make sure she has the right carbs at the right time so she doesn’t crash, and it has happened. I have to make the right call every time or it could cost her her life. She cries because at 82 before this happened she was running a business and going to work every day and travelling the world with her friend, she never wanted this for her children. I am one of 5 but an only child at the same time, no one has even called in 5 years to see if I need help or am ok. I have had 2 back surgeries, now both thumbs have severe arthritis, I have carpal tunnel in both wrists, I have an ACL separation in my left shoulder and my right knee has a tear in the miniscus. My left leg is in pain 24/7 due to 2 car accidents and I am exhausted and not able to get to doctors because I don’t have help except a few hours a week from a person who I pay to help me. Now I feel for the person above but at least her mother is mobil and can fend for herself for the most part, my mother can’t speak, walk, and has lost the use of her right arm……. Oh what I wouldn’t give to have a chat with my mother, but I have the most precious inheritence, this time I am spending with my mother…….. and I wouldn’t trade it for anything material.

    • Kay

      Dear Ellen, my heart goes out to you for all you do for your mother. My job was a walk in the park compared to most caregivers and especially those like you who have no help. I can’t even imagine how hard that must be for you. You have an amazing spirit, however, and attitude. What a blessing for your mother to have a loving daughter at her side and at a time in her life when she needs you the most. You are absolutely right…my mother could do just about everything but prepare her own meals. She mainly needed someone to be close by mainly because of dementia, but I didn’t know what to expect as she declined further so I stayed home a lot. I am so sorry your siblings have deserted you and neglected their mother at this time in her life. May God bless you for the wonderful work you are doing and may He heal you, also, so that your life will be easier.

  10. Ella

    I was a caregiver to my dear parents, resting in peace, and am now taking care of my elder brother a young 66. His illness has been a challenge, a life change for him, all of us. Watching his illness progress is depressing, I sometimes feel I’m in a deep hole. I realize his emotions are in abundance and do my best to be understanding daily. I strive to educate myself. Attending support groups can be helpful, but, listening to others share their stories and what’s ahead, can bring the day into a sad one, I sometimes neglect to go. Respite is a necessity and not without the initial guilt feeling of leaving for a short time, even though I am secure knowing he is in a safe place. Reading all of your stories have helped me and I thank you for sharing. I/we care for our loved ones because it’s who we are, what we do. I believe family, home make a difference. I share this mantra which I reflect on quite often, “Life is not about what happens to you, but what you do with what happens to you.” Believe in prayer and faith. God Bless us All.

    • Kay

      Thanks for your comments, Ella. You are so right about depression. I think that is one of the downfalls of caregiving. There seems to be no end to it, you know? And I also agree that caring for loved ones IS because it’s who we are and what we do. That doesn’t make it any easier or less stressful. Caregiving is a big responsibility – a responsibility that never ends. May God bless you for providing care for your brother. You are a wonderful sister!

    • Annette

      What a blessing to have stumbled upon these testimonies. I thought I was the only person feeling what I feel as I care for my 86 year old mother after I work with elementary school students by day. This helps to normalize things for me and encourage me to continue to do the best I can. I get very tired and frustrated as I don’t have time to do what I need to do for myself.
      If I didn’t have the Lord Jesus in my life I truly would not be able to make it. Please pray for my physical strength and mental health wellness.

  11. Anne Perry

    I am caring for my 97 year old father who lives with me, for a year now, since my twin sister in Virginia was taking money from his checking account. We no longer “share” him, 6 months here, 6 months there. He is with me permanently, with no other siblings to help, except my brother who lives in Idaho, and doesn’t get along with my father……so, he is with me, in a smaller home, colder weather, smaller bedroom……He seems unappreciative, and lives to watch T.V., it seems, so looks forward to evening when my husband and him sit mesmorized….such is life as I know it; no longer the “empty nest”, but seem to be cleaning, doing laundry, and cooking more than ever……I side with all caregivers who are themselves aging, and looking after a loved one. We never know what our life will be tomorrow, so the best philosophy is to take one day at a time, and remember to take time for your spouse & self…….it’s like having a child in the home all over again.

    • Suzanne Bazina

      I had been an expat living in the Middle East for the last 22 years. 2 years ago my mother was in a Independent Living home. My one sister lived around the corner from her apartment. She never came by to see her, igonored her and then our mom got depressed being alone so she began to fall down and have accidents (I think on purpose). Then they take her to the hospital and start to charge her money for doing errands for her laundry, etc.. I was abroad and my other sister did not fly up to even see her and check on her either. Both of them charged her money for doing things a giving daughter should do. OUCH! My husband and I flew over and picked her up and took her back to live with us in Qatar. As the Middle East has gotton worse I bought her back here to the US. I am her caregiver now, seperated from my husband and my daughter is happy I am taking care of her (she is in college) but barely speaks to me now. I have given up a lot for the care of my mom. WE live near my 2 sisters who only come by once a month to see her and we are in the same neigbourhood. They don’t even call either. OUCH again. I refuse to put her back in the situation where they my sisters, take advatage of her and only do things as long as there is money involved. So I now keep her and they still talk about putting her in a home and still they resent me taking care of her too. I could not do that to her nor could I. I also was the caregiver for my father when he got cancer and kept him with my mom till he died. Caring for her is MY choice and I would not change this blessing for anything in the world. I do take time for myself and make time to shop and just “breathe”. Yes, it would be easier to put her in a home and just “go back” to my family and salvage what I could but what good is it if I am leaving her like that to die that way. What dignety is there to have that happen to her? So, I keep on… I am the lucky one!

    • Kay

      Hi, Anne. I can certainly relate to feeling unappreciated. I felt that way all the time. My mother seemed to “expect” me to wait on her. Now don’t get me wrong, I love waiting on people, but without the expectation part. I think the jealous sibling thing is pretty normal – at least it was with my sisters to some degree. Either jealousy or guilt. Yes, you truly ARE the lucky one. Not everyone can take on the 24/7 responsibililty of caring for a loved one. I am sorry you cannot be with your husband. That is a huge sacrifice on both your parts. May God bless you and your family for being there for your mother.

      • Debbie

        my name is Debbie I can clearly relate with being a caretaker. I care for my mom who is 86 and has mild/moderate dementia. Currently I retired working only 2 days a week so I can be there with my mother. At first I would leave her alone those 2 day but now I have a cousin who is unemployed to watch her on those day I work paying her a little something. Sometime you need a break. It is very hard to understand the change in my mother the last couple of years. She used to be my road partner you see me you see her. Now she don’t really don’t want to go no where I was really surprise when see stop going with me to church. She is currently sleep half of the day but I make sure she does eat, most of the time in her room for breakfast and lunch, then she might come down for dinner. Sometime this make her confused with the time of day. So just resently I said I would stop feeding her in her room to make her get up take a bath, shower or wash up and put her clothes and eat in the kitchen. We battle with this because she don’t want to get up. And I feel this would make her feel better if she just get up and move because she always say she in pain my leg she has arthur too. A person with dementia is very hard to deal with because my mother use to do a lot now she don’t remember. I do a lot of crying, praying and talking to people; most of my conversation is about my mother we bump heads lot. My kids and family members say how can you do it I told them I just do. Beside caring for mom I am truly a Grandma also and they are part of my life and sometimes it is stressful with mom and the kids but with God help I get through. I always say God give each on of us a gift.

    • Kay

      Oops…I got Anne and Suzanne’s stories mixed up. Sorry about that.
      My response to Anne was correct about the expectations we feel. And you are certainly right about your work load increasing all the time. I am happy that you take time for yourself. Caregiving is awfully stressful. May God bless you for all your efforts.
      Suzzane, the sibling comments were intended for you along with the comments about your husband. I commend you on the sacrifice you and your family are willing to make to care for your mother. God bless you!

  12. Les Leveston

    I commend true caregivers every human being deserves unconditional support, understanding, respect and patience. There are many resources available to caregivers, thank God. Bless you all.

    • Kay

      Thank you for your comments, Les. I confess my attitude got in the way of giving care at times, but, thanfully, I always managed to recover without creating too many fireworks. :-/ I can be patient most of the time, but my mother was very stubborn which at 96 she had a right to be. I think we all give as much as we are able and, yes, God bless every caregiver.

  13. Dorothy

    My mother is 82 this month and suffers from dementia. In our family everyone wants to be the chief and that left me as the only “indian”. I feed Mother breakfast, lunch and an afternoon snack as she never seems to want to eat an evening meal unless we “go out” and I just can’t afford it. Besides that, I also have a teenage son and a husband at my house to cook for. Definitely, the sandwich generation. The routine gets to me sometimes; but I try to break it up by picnic lunches in the park and shopping trip to 2nd hand stores where she will look at things for hours and never buy a thing.
    I do get so tired by the contant routine; but someone has to do it.

    • Kay

      I can certainly relate to the Indian role, Dorothy. Everyone wants to give you orders, only they never stick around to do it themselves. 🙁 I understand the constant routine. My mother depended on meals at certain times, for example, and got upset when they were late (as when my sisters took over occasionally!). Dementia is very difficult to deal with day after day. I had never been exposed to it before my mother moved in with me and it was often difficult to tell what was real and what was the dementia talking. You have your hands full, Dorothy. I hope you get breaks sometimes. Your mother is blessed to be in your care.

  14. Mele

    My husband & I took in my 83 y-o sis two years ago when it became very evident that she could no longer take care of herself: she blew out 2 microwave ovens; neglected an infected eye until she lost it; gave out her chking acct no. & allowed a co. to take auto payments for useless merchandise which arrived by mail over many months, enough to fill up an entire spare bedroom; she ate rotting food. There was even more but this illustrates how severe her dementia was by the time she let me take her to her doctor. State social workers failed her by giving up on helping her because she would not cooperate with them. Now she gets the best of care yet is unaware how she has turned our lives upside down & inside out — with no help from any other relatives. No, there is not much help out there & I am totally frustrated and in danger of failing health. I survived aortic valve replacement 4 mos. ago (open heart urgery) and placed her in a care home for 2 mos, resuming caregiving of my sister after that, with much difficulty. (I’m in fairly good shape now, thanks to prayers from around the world for my recovery!) She is steadily declining, has been incontinent since the time we took her in; she’s unable to change her own clothes or bathe by herself; she has a throat disorder which requires all food to be pureed; her leg muscles are wasting, causing extremely slow gait. Her dr. says she has Alzheimers as well as vascular dementia so of course, I have to deal with all of the short-memory issues and am beginning to believe her ears are affected too, since I have to repeat everything three or four times in order to elicit a response of any kind! I’m sure a lot of you have encountered the frustration of having to repeat so many things so many times! Just so you don’t think I’m despondent or on the verge of giving up, let me say that since she’s my sister & the “big sister – little sister” dynamic is still at play, regardless of her state of mind, we tease each other & laugh often as I try to stimulate her memory by “talking story” about our childhood days & people we once knew or grew up with. I discuss world or local news, even if her only response is that silly laugh she has. It makes her feel more like a part of my own family…we had been estranged from each other for a number of years & had never resolved our issues with each other. Having her here makes up for whatever part I played in bringing about the estrangement, although I have grave concerns about my ability to continue such mind-numbing demands. I’d like to tell others in my situation about one way to deal with it all & survive the emotional & mental stress that we experience: follow your own interests, whether it’s sewing or reading, studying the bible or learning a new language – or in my case – writing fiction. It’s most important for your well being; it helps you to recover from the many bad occurrences every day and refreshes you. Hold onto your heart’s desire and devote time to it as if your life depended on it. Believe me, it does!

    • Kay

      Wow, Mele! What a story you have to tell. I honestly don’t know how you manage to do all the things you do for your sister, but I love your attitude. It shows great strength of character and overwhelming love. Your sister is beyond blessed to be in your care for as long as you are able. I am thankful that you have the chance to “make up” with her in this very special way. May God bless both of you.

  15. Lourdes Gonzalez

    I took care of my father who had cancer and now that he passed away in 2010, I have been taking care of my mother who has Alzheimer’s. I love my mom very much but I have become bitter and resentful because I do not have any help from my two sisters and one brother. When I call them to let them know about something that is happening to my mom they seem uninterested. I do not know what I would do without the help of my husband who I feel has really no responsibility in the care of my mom and still he does. I look at myself in the mirror and I do not recognize myself. I see someone who is always tired and wrinkled. I wonder if I will ever have my life back again. I also feel for my daughter because she is a senior and she will leave to college next year. These are the last months I will have with her at home and yet I do not have the time to spend with her as much as I would like to. Our family has turned upside down. This is the first time I have the guts to say this out loud because I feel terrible, but I find myself saying so many times “I hate my life” from the time I wake up until the time I go to sleep.

    • Kay

      Dear Lourdes, you have every right to feel the way you do in your situation. I believe every caregiver feels that way either sometimes or all of the time. All I can say is God bless for hanging in there and some day, things have simply got to be better. As I have said before, I cannot even imagine how difficult it must be to care for someone with Alzheimer’s. I do think there is a blessing in disguise in that situation and that is that hopefully one with that dreadful disease does not even know the difficulty you experience daily. My only advice is to forgive yourself for feelings that are so normal. There is no blame for trying to do the very best you can in such difficult circumstances.

  16. Samantha

    As a caregiver, I do absolutely everything that I am supposed to do. Nothing happens in this house that I don’t do. I am beyond bored, beyond depressed. The first thing I do when I return home from my only outing, the grocery store, is go straight to the bathroom to vomit from the stench of illness.

    I am frequently commended for my marvelous sense of humor, my great love for my husband, my admirable sense of duty, my smile. Oh, what a devoted, cheerful caregiver am I! “I couldn’t do what you do,” they say, like I had a choice. “You’re so strong!”

    It’s all an act. Thank God for the acting lessons I took when I was young. I use them all day, every day.

    • Kay

      Dear Jose, I cannot imagine caring for a loved one with Alzheimer’s. That has to be so hard on you. I wish I had some answers to your questions, but I think all we can do is take one day at a time until we have to let someone else take over. I also believe God has mansions waiting for every caregiver who has to deal with such a dreadful disease as this. May God bless you for the loving care you give your wife. You will never regret it.

    • Kay

      Samantha, I am so sorry you are having such a hard time dealing with your situation. I understand completely your boredom and especially your depression. It is such hard work and, essentially a thankless job and it IS a job. I think one of the hardest things about caregiving is you can’t escape it. It’s always there waiting for you. I think “acting” may save your sanity. I sincerely hope things get better for you. God bless you for having the strength to do what you do.
      P.S Sorry, somehow my reply to Jose got on your message.

    • Priscilla

      Amen Sister

  17. Jose

    I do not know what to add to Kay’s story. I am in a similiar situation. My

    wife suffers from ALZ. Six yrs. ago our world changed very quickly. I began
    to notice things missing,out of place, broken, etc. What to do next is my question
    and probably everyone else’s, where do we go from here? I better stop and not
    go to places that are not happy. I am so proud of Kay! I agree with Ann, there
    will be a seat waiting for here in the world of hea ven.

  18. Julia

    I get you all the way. Everyday is a new one. My Dad is almost 98 and he can do somethings very well. Takes him some time but he does it. I think some times he does it better than I do. He just gets lost with other things. He is a blessing to me. Scary sometimes. I take care of him the best I can, sometimes I don’t think it is enough but I am human to and I have learned some patience.

    • Kay

      Yes, Julia. Your can only do what you can for your dad and try not to worry about mistakes or things you may have missed. Patience is indeed a virtue and is actually a blessing we caregivers get for our daily work. You are very lucky (I hate that word, but what other word is there?) to care for your father at his age. I agree that it is scary, too. Unfortunately, we can’t help remembering that our loved ones will not be around forever. Frankly, I refused to think about that because I think I would not have been able to care for my mother if I had.

      God bless you, Julia. Give your dad a big hug today! 🙂

  19. Don Parsonsss

    Can relate, Kay. Wife is 81, and has been on the dementia/Alzheimer’s road for about 7 years, now. And one very much needs to retain some bit of self. Mine is the yard, the internet, and I do karaoke once a week or so. Otherwise, it is the old “women’s work is never done” routine. 🙂 But she took care of all of us for many years, and now it is my turn. May God give us the strength, both mental and physical, to do what is needed. (and financial, too!) 🙂 Good luck. And thanks for your thoughtful, informative posting.

    • Kay

      I am glad you liked my writing, Don. I must say I am in awe of all of you who care for parents or spouses with Alzheimer’s. My journey was a cake walk compared to what you must go through on a daily basis including the heartbreak of watching your loved one decline. Frankly, I was bless to not have to go through that kind of intense caregiving.

      God bless you in your efforts, Don.

  20. Karen

    I totally understand the part where your siblings question why you dont leave the house. I live with my mom now, she is 84 and not in terrible health but has poor mobility. I know I make mistakes too, God forgive me I get frustrated. My older sister is finally getting a sense of all I do since I work full-time (some from home) and them pretty much do everything else. Mom does like to cook, but has little strength, so one of our pleasures is cooking together. Especially things that will last a few days. I feel bad when I snap at her – today she asked why I haven’t been playing the piano lately. Well, after working for 10 hours a day last week and being a little under the weather, I just didn’t feel like it! One thing that really surprised me is how much she loves my cats. She was hesitant at first, even though we grew up with pets, but now she loves them, and they her. Its the small and often unexpected things that help me get through the days.

    • Kay

      Thank you, Karen, for your response to my essay. You know, I lost my temper more times than I care to remember so I know how you must feel. But we are not perfect, are we? You are fortunate that your mother shares some experiences with you. My mother had far more dementia than I realized and so wouldn’t engage with me very much except for bird watching. Take care and the very best of luck with your mom.

  21. jenny peiffer

    I know how hard it is! My mother is 100 yrs old and living with me. My sister was taking care of her at her home but she is 75 yrs. old and just had back surgery. So i told her to get over the surgery which she is doing fine. She has been here for 3 yrs. taking care of mom and i just retired to take over. She needs to go back home and get on with her life. We thought about a nursing home and i told her i just can’t do that yet. We promised her that we would take care of her. There are ten of us and i’m the only one left that can.
    Just found out my sister’s that are twin have cancer. It is ironic that they both got it at the same time and both have lung cancer. Its funny that i think of my mother taking care of me, changing my diapers. Looking out for me when i was sick. Praying for me to get better. And here i’m doing the same for her. She has dementia but still knows us. And believe me when she is in her awake mode as we call it she remembers everything. Lol! So funny is she, i get such a kick out of her. But she has her stubborn side don’t get me wrong. That is the fun of it.
    To make her happy and comfortable for as long as we have her here on earth is my main goal. I’m not saying it will be easy, but i’m going to do the best that i can for her. I know things will be alright for us, we have god on or side.

    • Kay

      Jenny, what a lot you have on your plate! And your mother is 100! Wow! I completely understand your wanting to care for your mother. I felt exactly about my mother although I admit there were days when I thought about other options. :-/
      How nice that she can still make you laugh. That’s fabulous. My sisters would visit and I’d hear her laughing with them and I loved it. No, it is not easy, but you will never regret the special gifts of love and time not to mention effort of caring for her. You are right, too, about God being on your side. May He continue to bless you and your mother and your sisters as well.

  22. Ronald Huff

    I am the caregiver only in the sense of living along with others like myself in assisted living. As long as we are able, we help each other as the abilities decline of all of us. An early nurse of mine, as she taught me how to shower and groom myself, breathed into my ear, “You ‘will’ take care of yourself. You will not be a burden to others.” When we are lucky that process can take 20-30 years or longer. Part of the adjustment we all face, caregivers and recipients alike, is that inevitably this decline in us comes eventually.

    • Kay

      Yes, Ronald, your words are so true. How wonderful that you are not only able but willing to help others. After caring for my mother, I could not believe how little I knew about the aging process. My mother’s generation grew up believing in the “Golden Years” only to find out they don’t turn out that way. Having to depend on anyone for any thing has to be difficult. May God bless you, Ronald.

  23. Maria

    I certainly agree that care giving is the most difficult job in the world. I can relate with Samantha. My mom is 90 years old and has dementia now for the past 15 years. It’s been coming on so slowly but for the past couple of years it’s been progressing. I never had any children so this is all pretty new to me. I stay up as long as I can because I know that morning comes in the blink of an eye. I never knew how many people are involved in this caregiving business. But God bless them all.

  24. Priscilla

    Dear Kay and ladies,

    There is reality beyond all the sweet mumurings of the women folk.

    I was pregnant when my Mother took ill. New home with engineer hubby to be. Takes men till the age of 40 to handle wife and children. Life was hard enough with the younger men of my generation. Just ripped we women apart that generation. That said……… This was 7 years ago. The day of Mother’s stroke, my two much older sister’s said they wanted nothing to do with it. They had money to help. Hubby kicked me out at first sign of my stress. I miscarried moving Mother’s furniture to storage as the Doctor told me she needed a rest home. I had just spent a year cleaning up HIS Dead Mother’s stuff. My Mother had little savings. I spent all of mine immediately to make miracles happen. I don’t pay myself. I can’t paya myself back. With what?

    Anyway, a year after that, both sisters ordered me to save some money and take care of her. I took her out of rest home per their orders. I’m the baby in everyone’s mind. So I rent now. I’ve moved so much furniture my back is shot.We pay 5x the amount of her mortgage. I can’t afford to leave the house but I can’t leave any way. Now I’m practically scared to leave. The worlds changed drastically in 6 years since I was out in it.

    I give her all my love. I give her all my frustration. She in turn does the same. It is about the hardest time ever in my life. It’s still the safest place on earth with her and I taking care of each other in a crazy world.

    I don’t see it getting better. The incontinence, the constant need to help her do something, the showers, oh lord the weight changes and health changes.

    I’ve lost my family and my family to be. I feel like I’m 65 yet I’m 48. Mother is worth it. However I see now what a tragedy this is. I don’t know how I feel about people living this long. Indians used to pack up and leave the elders behind. I won’t make it to her age and there’s no reason with no children. No healthcare system in place to handle this aging populace.

    Indians moved on without the elders. For survival of the tribe. Now since it’s my Mother, I wouldn’t leave her. Yet my sisters could. No questions. Well, they want to know if there is any money left and call APS to check the books constantly. I’ve been red alert stress for 7 years. No let up.

    So I got cancer this 7th year. Landlord wants us to move to sell his house. I began menapause which is really making me miserable. I’m exhausted and depressed and nothing like the happy woman I was 7 years ago. With a future. I’ve learned my own sisters are not nice people. Neither was the man who wanted me to have his children. APS seems to be happy with my progress so they don’t bother me anymore. I know I’ve done more for Mom than most. Yup. She is spoiled beyond any person I’ve known. I’m a codependent. I wasted my whole life on men and Mom and pleasing my sisters who care not for us. GREAT. Wanted to place it all into my children.

    Took her to dentist today. Gave her a shower. Made sure she got up from her chair and went to bed twice because her legs are swollen again. Have PT nurses come over 5x a week for 8 months out of the year to keep her toileting. She probably has another UTI because I can’t clean her thrice a day. I’m tired of it honestly. When she becomes very mean, then I do my own urine test and start the antibiotics and wiping the butt so that she’s nice to me for two months before another one crops up.

    But no one is monitoring my health. How sick I am. I’m overweight from a slim 120lbs when this began. My heart flutters and tightens. I smoke all the time now. I cry. I panic. It’s been 2 years since I could fake it even to others I was fine. Now I need others more but I’ve driven all people away in the last 2 years. I stopped wearing make up or nice cloths. I don’t fit into them anyway.I don’t recognize myself or my behavior.

    I smell like urine. I keep the house clean. It takes all my strength to keep house and Mother together. And the house is rented and Mother is dying. It’s all for naught. I curse now. Something I rarely did before this. I hate people who slight me. I’m over sensitive to critism yet I am critisized often. In the beginning, they were all on my side. What a sacrifice and how great is the care. They all warned me this would ruin my life. They would never do it anyway. Now they don’t want any part of it like my sisters and they aren’t family anyway.

    The books say we caregivers lose our immune system and become depressed in the 3rd year. That in an upwardly mobile society, we are downwardly mobile. That families are torn by the lack of inheritance left by those living well past 70. Mother got by without inheritance but she had a husband till she was 45 so she had a home. I don’t and won’t.

    How disheartened and lonely I am. Now my whole life is Mother and what do I do when she’s gone? This is not a healthy pack we made. This goes beyond the call of duty. I don’t know how to go back to work 9 -5 after all these years trying to greive daily and worry constantly IS THIS THE DAY SHE STOPS BREATHING. IS THIS THE DAY I MUST PACK AND have no where to go to and probably no money to go there with. No one to bury her with at my side. I should have stayed the course of my own life and let the court system take her money and home? I’d have a child and be fighting for custody and home ownership with the ex who I’m sure would have treated me and child badly given how he treated pregnant me and my kind Mother.

    I have lost faith in God. God got me through the first years. I was such a pollyana. I believed all was good longer than most people. Despite the obvious ills of society. But Caregiving is the hardest job in the world. It is. Hands down.

    Now I know, there is no God. Not for this long endurance of dementia and rhematoid arthritis. Oh yeah, my cancer. Why is that important? Because Mom needs me! I’m not allowed to have cancer. I don’t think about it. It’s just another issue blocking my way to getting all the chored done in time for her demise and my old age which seems to have happened in a second. But if there is a God, he wants to test me to my very limits and see if Satan can have me. But I don’t believe that stuff. So there is no God. There is only recession and baby boomers living far past the normal age.

    100 years ago we all would have been dead by 50. This is not normal. This is not healthy for society. Women doing it ALL. Supporting the men, the illegitimate children, and the aging parents. God’s way of killing off the next generation early. Drugs, alcohol, obesity, cigarettes, sex. So the elders get the victory stretch? What about we the young ones who didn’t indulge and followed the rules? The weak don’t inherit for sure. I’ve reached a point where I don’t need any answers. Life is hard and short and miserable for women.

    I’m sure no one has any thoughts but what a horrible rant. This is reality. 7 years of it and still going on. I’m sorry for being angry but all the love stories for thier Mothers are on my short list these days. I love her more than ever but also I have remorse for the life I gave up. The future I had. My Mother didn’t take care of her Mother!!!!!!!!!!! My Mother had a good life all the way to the end. Where I wipe her $%^^! And she yells at me for it.

    Signed Disheartened Catholic

    • Kay

      Wow, Priscilla! I emphasize with you over all you suffer with. I truly believe your love and care (no matter how hard it is)for your Mother is something you will never regret. You have truly sacrificed yourself for your mother. Caregiving is truly a thankless job and I am so sorry for your situation. I strongly agree with you that somehow there needs to be resources for care for our aging parents. There are very few people who can afford the care you are giving much less the huge emotional toll it takes on you. I hear your feelings about God, but I truly believe that He will bless you for the tremendous hardship you are enduring to help someone who cannot help herself.

    • Pat

      Boundaries. We need boundaries. There has to be time for yourself. Breaks when someone else can take over for you for a while. Even a certain time of day that you always exercise for 5-10 min. can remind you that you are an important part of this equation. Prayer helps! Getting to an outside activity with other women at a church group. If you always answer advice with “that won’t work in this situation, no one will continue to try to help! You seem to not be giving yourself a chance, although I must admit your situation sounds more dire than most. God does want to help…let god help. Once you realize this there will be more help available.

  25. Linda

    I read the words of everyone and know that I am not alone in what I am doing. But as the day goes on you do feel very much alone. I am not as lucky as some of you my Mom is in a wheelchair and totaly depends on me for everything. Getting out of the house is a struggle because most times she does not like it and cries or people give me such dirty looks because she has fallen asleep. I have one wonderful sister that gives me two weeks a year vacation and one that does not bother to call. We are going into the third year and boy has my life changed. I relate so much to the comments of others. They are sad but true reflections of our days. I made a promise to our younger brother three years ago a month before he died that I would care for her in my home and that is what I will do.

  26. Ginny

    My husband & I had 54 yrs. of a wonderful marriage before he died. He developed dementia and was unable to care for himself for about 7 yrs. He could communicate, recognized everyone, feed himself and walk, all of which I am grateful for. And we have a loving family. The children helped when they could. Don,s dementia was the type of mental impairment that prevented him from performing tasks and follow directions. He could not dress himself, bathe etc. I more than often lost patience and spoke harshly to him even though I knew he couldn’t help himself. But I was exhausted and stessed out. When he died suddenly and I couldn’t say I love you, I’m sorry I was left with tremendous guilt and sorrow. Has anyone else experienced this behavior and these feelings?

  27. Rebecca

    I can really relate to Lourdes. Oh, the ugliness of the feelings you feel are almost unbearable!!! My mother started getting sick probably in 2005 and was diagnosed with normal pressure hydrocephalus and advanced micro vascular disease(dementia) in 2007. It took me about nine months to get her diagnosed. She had surgery for the hydrocephalus but as the dementia worsened we worried about her safety and I moved her in with me, my husband and my son. In the beginning it was ok, a big adjustment, but ok. But over the years as her dementia worsened her dependency on me to do all things for her grew. I work full time and I am an only child. I work full time so my mother is in adult daycare while I work. There are times I have felt so alone and I would think I wish I had a brother or a sister or someone to help just for a few hours. But after thinking that so many times I realized that I was wasting my time with wishful thinking and making myself feel even worse and more alone. This disease has taken my mother’s mind and life as she knew it and it has changed me forever. I found myself many times thinking the most selfish thoughts, the “what about me?” thoughts that I had never known myself to think before and the thought that I was short changing my husband and my son and my family and my marriage because all of my time and attention was and still is spent on my mother. I felt like I had had all my freedom of choice taken away and I was having an inner struggle with giving up my life to take care of my mother. It seems shameful to feel these feelings when someone, especially a parent, needs you. I felt anger, resentment, selfish & bitter and worst of all, the guilt for feeling them. I hated myself for feeling these things but they were there whether I wanted them to be or not. What could I do? Slowly I had to let go of the guilt of these feelings and forgive myself because I am only a human. I had to quit fighting against what could not be changed. I had to accept what was. I cannot take away my mother’s disease. I cannot have help from brothers and sisters that I don’t have. I cannot be all things to all people all the time. I can accept the fact that this is my journey with my mother, no one elses. I can accept that it doesn’t matter what anyone else does it only matters what I do. I can accept that is what I have to do and that it is the right thing to do. I can accept that no matter what this disease has taken from me that it doesn’t even compare to what it has and will take from my mother. I can accept that of all the feelings that are stirred in me because of our situation, that the feeling of LOVE always comes to the top and prevails and pushes me to step up to the challenge that life has thrown at me and to do the best that I can do, not perfectly, just the best that I can do and the faith that the best that I can do really will be enough. Bless all the caregivers in the world!

  28. karen

    as i read Priscillas story of her caregiving to her mom, it brought some serious tears to my eyes. i had a tearful breakdown. on march 6th 2010 i brought mom from nj down here to live with me so i can take care of her ive had several calls telling me that my brother ron was abusing mom and his wife had hit mom. i called APS TO CHECK on mom and they found marks and bruising thats when i got a ride with my bf son in his big truck and away i went, to go get mom and bring her with me. thats when i started caregiving for mom. nobody told me how hard it will be but i did the best i could im disabled but havent started receiving my disability check yet and im still fighting that now to this day. well i cared for mom from march 7th 2010 to april 2011. thats 13 months. we would sitdown and plan all the meals and 3 snacks a day then prepare them and serve them.every single day.sometimes like on certain days or on moms 82nd birthday a lady friend of ours invited mom and i over so her family could have a surprise party for mom. she even made a strawberry birthday cake which i thought was the best day mom ever had. well after all that, mom n i went dr shopping we found one local and that she liked so we scheduled all her appts like routine and i asked to have her tested for dementia, and after a few tests the dr diagnosed mom with mild dementia. so everything seemed ok for awhile but mom started getting mean and would scream at me and id go to bed at night crying. mom would just hurt my feelings for no apparent reason that i was ever aware of. i called the dr and he said its all part of the dementia,omg.i called to have APS come out to check mom and her dr had a nurse and a physical therapist come out they were great with mom. mom had problems with balance and bcuz she didnt like me giving her insulin shot the nurse would always check her. whenever mom would say she will do it herself,guaranteed with in 2 days moms sugar would drop and she didnt eat her bedtime snack , so id have to take her to the er. she would stay in the hosp for 6-7 days and mom would ask if id stay with her overnite so she wouldnt be lonely, and i stayed. i loved mom unconditionally no matter what. that was mom she was a divorced mom raising 2 kids me and my brother.
    well the summer of 2010 we made a huge garden and mom loved going out to pick our veggies for the meals. id go out with her so she wouldnt stumble or fall.but to see her eyes just light up and shine as bright as they did. she LOVED GARDENING for MANY years since i was a baby.well after taking care of mom all this time we did have funtimes at the movies, the mall, food shopping and moms necessity shopping. mom would seem to get mean a lot again and so hateful. she wanted to go stay with ron but ron would have to come down here to get her to take her with him to chicago,illinois. so on april 2011 he and the wife came to get mom after he asked to have mom removed from my care bcuz he had power of attorney over mom. so when mom was removed the new nurse and police took mom to some nursing home i wouldnt have ever imagined mom ever being in and she stayed there til easter 2011 that was the last i ever seen mom alive . mom was ok for a few months but her APS caseworker called me and said Ron threw mom out in july of 2011 in the heat of summer and mom walked around til she found a policeman and he took mom back to my brothers apt but didnt help mom get away. thats when the abuse started. they would feed her just anything whether if it was good for mom or not. so mom stayed quiet not trying to let me find out about the abuse. in nov 2011 just after thanksgiving, it happened again but this time mom didnt have any warm clothes on at all. and ended up in a hospital, sick from being cold .she was in and out of the hospitals after that. on feb 24th 2012. moms caseworker from catholic charities contacted me thru facebook and a friend gave me this message . i called this ph# at 4am trying to see what this message was all about but i didnt find out til 3 days later. mom was in a nursing facility in chicago bcuz of my brother he didnt want to take care of mom bcuz her money was getting gone. who cares about money thats our mom he wanted to care for her bcuz he was better than i was so why wasnt he doing it. i didnt want mom to leave me i was ok taking care of her we had the usual ups and downs but we still family and that was mom, my mom . but if she wanted to be with brother i couldnt demand her to stay with me. i was only able to talk with mom for a week b4 i was called again and told that mom had suffered a cerebral hemorrhage and there was lots of blood. omg i heard that and broke down. i didnt know what that was when they said she had a stroke i thought oh no not mommy.so i called my sister and we stuck together like family and sisters should. my brother and i never got along.he didnt like my sister either.but her and i stayed family ( and did what we could with neither of us having any much of an income. im disabled and she worked at a low paying job.) so we talked to mom the week b4 her stroke and thats when my sis reminded mom it took her 60 years to tell my sis that she loved her. they both cried and kept saying i love you. well after the 1st stroke, mom couldn’t no longer talk so sis and i would call mom either a 3way or seperately and see how moms progress was doing. i found some paperwork mom had in a bad she left here for me to look at and i found a set of power of atty papers with my name as the P.O.A. so i sent them to the facility mom was at and started making changes. i was going to get mom back here with me, either have nurses come in to take care of her or find a nice place close by me and have mom placed there so i can see her everyday. but i had to keep ron and the wife either away from mom or have security escort them and stay while they would visit mom, bring no food or drink to mom in case they laced it. i tried to exercise my lawful right as power of atty to mom to keep her as safe as i could til i got her back with me but that day never came. as soon as i sent the papers to the facility, they contacted brother and he told them i was crazy, i abused mom etc,etc.on march 19th brother and wife went to visit mom and later that day i got a curtesy call from moms caseworker again. mom had another stroke this time she cant no longer walk or talk or move at all. the nurses have to roll mom so she didnt get bedsores. how sad and disgraceful. everytime ron and arlene visited mom something always happened. why was it always me and my sis would notice this? my friends and other people from church and moms friends would all notice this but not the hospitals or facilities or police. her caseworker even asked me if i noticed that. well after being told from the facility that im not allowed to call mom anymore that was like a bullet in the heart. my sister was able to get her calls thru as long as ron and arlene werent there and she would pass the progress on to me but it wasnt the same as me calling.after several months went by, id ask sis if she called and hows mom doing i told her i was going to try to call. so on sept 10th 2012. i called but was told no info at all but i kept calling 2times a day. on sept 12th i called and they kept passing the call around to different septs. when i called back, the nurse said she was moms nurse told me mom had passed away on the 10th. all i could do was cry. it took me 2 days to find out mom was gone forever and brother already had her funeral it was him and his wife thats all who attended. the funeral director mark said hes not allowed to talk to me or give me any info or else so i asked him what do u mean or else and he said my brother was very intimidating. what a bunch of mess….. so i hurry up and try to send him the same POA papers mom had in her bag and faxed it to mark. it took them a week b4 he called me back and said my papers were false and altered. these were papers mom had, i didnt know anything about these papers i only found them bcuz mom asked me if id take a look at all her papers as if she wanted me to find them. well here it is march 28th 2013 ,moms been gone over 6 months now and ron hasnt paid any of moms bills or debts with the insurance money he got. i called to report her death to social security,her insurance co, all her friends and other family members and her auntie whose 86 in may. from what the caseworker has told me after moms passing, ron hasnt been a care giver to mom at all she was left alone and had burned her arm and leg and stomach from trying to cook some canned soup and coffee. so he had mom put in some catholic facility and mom wasnt even catholic, she was baptised apostolic in feb 2011. and if thats not bad enuf he put a $5.00 dollar bill in moms hand and a rosary . whats all that for?? why??
    so what do i do about this? moms gone and not coming back and im still grieving and brother will someday get his day. i have all moms clothes,furniture,papers, everything she had in a 3bedroom house and everything she ever had in her 1 bedroom apartment and ron will not get anything from this. he didnt pay the storage bill or none of moms bills she had at the time of her death, and again everytime he and arlene ever visited mom, something bad always happened. but the last time it killed mom. well i ope if someone has any ideas or suggestions on what to do and how to get the authorities to see the pattern please email me or inbox me. thank you all for your time reading this, may god bless you all. all the caretakers . its sad when we lose our loved one we care for for such a long time. thank you Priscilla and may God bless you many times over and im so sorry about what happened to you and your life. please email me we can talk bcus my bf has thrown me out bcuz of my being caregiver to mom and when she passed, he didnt get anything. what a bum he really is. theres more to all this and ill finish tomorrow

  29. Carol

    I have read many of these replies to the difficulties of caring for a mother or father….I too had the task left to me to care for my father. Now….as I am facing medical , life issues, I recall my frustrations with my father and the never ending issues that I had to address on a daily basis as I raised two small children. But….as I look back …I now realize that I had issues concerning my father and what decisions he had made that dramatically affected and effected my mother, my half sister and myself. I now look back and wished that I had addressed these things before he became ill and I , no longer had that luxury. I was angry, angry over things that had been said or done by him. Angry because my mother had suffered for those decisions and so did we kids. I made things a “task” , a chore , instead of giving my love, forgiveness and understanding to a man who had a loveless childhood and a hard life. At the time, I tried to rationalize and forgive , but it really wasn’t in my heart. I had promised mom that should anything happen to her, that I would take care of my father and by gosh I was deteremined that I would. I am sorry to say that I resented having to do anything for him and I am sure there were times when he knew of my irritations and smoldering anger. I became the “martyr” to myself and complained to my husband , who wasn’t really in my life and didn’t wish to deal with life and death decisions. There were many times that I tried to feel love for him . There were times that the things that happened were sad but funny. Now that I am older, I am seeing the flip side of what indignations will arise and the heartbreaking fact that my child will bear the burden that befalls an adult child as they have to become the parent to their parent…me. But …..the bottom line is….this is part of the life process and this could be the opportunity of a lifetime to bond in a new relationship with that parent, to become best friends. I often think of how patient God has been with me….even when I do or say things that are short sighted or irritating. I guess the bottom line is that when we are put in this position of caring for our loved ones….God has given us an exceptional gift ….an opportunity to “make memories” for we are not here on earth for long and although I was angry at my father, I loved him too. Now….if I had another chance to do it over again….I would do it differently…with patience, love and not wear myself down with feeling put upon. As time has passed and dad has been gone for many years now, I miss the opportunities that were given to me to listen to him, to talk with him….but most of all to tell him that I love him. We need to talk to God when we feel weary for He is taking care of us. We can do no less for our loved ones….

  30. Anonymous

    As an aging parent, I cried from beginning to end. I hate that I am dependent on my daughter more and more as I age. I would not ever want to be a burden to her. I hope that she always and forever realizes how very much I love and appreciate her, especially for the simple things: brushing my hair, moisturizing my hands, caring for the feet I can no longer reach, laying beside me to watch a movie and falling asleep by my side. She takes time to snuggle with me and warm me when I am cold and a blanket just doesn’t work well enough. She gives me warmth, and strength, and encouragement to be independent as long as she can, and as long as I am able. She blesses me with her laughter, and apologizes when she thinks she is too hard on me, when my confusion leaves her frustrated. I love that she includes me in her work day, and checks in with me if she travels somewhere to assure me she is safe. She blesses me with her every breath. I do not and will not ever feel that I have done near enough to deserve the love she shows me every day. Your parents feel the same. Your spouses/siblings that need you feel the same. Even if they cannot communicate it, either because they lack the words or the ability. There are abundant blessings for those of you who tire endlessly for those of us who struggle. Please do not give up on us.

  31. Betty

    I’m so happy to have found this website. We moved from the W. Coast about 5 yrs. ago, to be near our youngest grandchildren. That was worth the move & we’re both very happy to see them and babysitting is our joy, even for my husband, who has beginning Alzheimers. I feel it is just beginning, but sometimes wonder if it’s more than that. He is able to take care of dressing, hygiene, can drive locally without me, though not without our GPS. He is with me constantly, follows me around, even if i’m out of his sight for a few minutes. I can’t go to the hairdresser or have a mani- cure without him. Perhaps this is normal, but I find it stressful & don’t feel I can relax, & perhaps this is one of the most difficult aspects of Alzheimer’s, but I’m certain the difficulties will increase.

    • Ann Napoletan

      Betty, so glad you’ve found Caregivers. We are also launching an Alzheimer’s blog later this coming week and you might find that helpful. I can say from experience, there is a great deal of comfort in knowing you’re not alone and in hearing about the experiences and feelings of others walking a similar path. The ALZ/dementia journey is one you just can’t fully understand unless you’ve been there. Best wishes to you and to your family. ~Ann

  32. Ginger

    Hi Kay! Your day sounds similar to mine. My husband and I are caring for my 86 year old mother. She came to live with us five years ago. She has some dementia – forgetfulness and some hallucinations both visual and auditory. But, she’s doing very well with medication. My husband was retired and stayed with her throughout the day while I worked. (I love him dearly!) Fortunately I was able to retire in November to be home with her. She needed more one-on-one – to be engaged in something during the day to keep her from sleeping all day and roaming all night. Fortunately – she was always very creative – so it’s usually easy to keep her active. She works on a quilt (cutting triangles and pinning them together. She probably has enough to make 10 quilts – but I don’t care – it makes her happy. She does some beaded jewelry work. Lately – she’s making rosaries. Though – she sometimes forgets she’s made them. She uses another rosary as a guide to remind her of the numbers of beads to use. And we added a porch/balcony on the back of her suite – so she has her “garden room” and her plants/flowers to care for. She has an amazing sense of humor and we laugh all the time. She also has a wonderful attitude about her condition, “You know me…I wake up in a new world every day”. She is also very hard of hearing. I use the subtitles or closed captioning on the TV to help her follow the story. We also purchased TV Ears for her use. Those are great for watching TV. She can adjust the volume in her headset to her liking – and we can have the volume low or even muted for us. One bit of advice my cousin gave me – and I’ve never forgotten it…. I told her I wanted Mom to feel safe and secure. My cousin said “and loved…You are her only daily human touch”. Wow! Hadn’t thought of that. I always hugged/kissed Mom hello or goodbye when visiting her – but didn’t think about it when she was here in our home. So, I began rubbing her back in the evenings and giving her a hug and a kiss. She smiles so big when I do. I also remembered someone saying once – your eyes should always light up when your child enters the room. So, I made a point to greet Mom warmly in the morning. Usually by saying “There’s my Mommy”. The dementia isn’t nearly as troubling as the lower back pain from arthritis. We’re seeing a pain management specialist about it. One of the best things we ever did – was get her to a geriatric specialist. That really turned things around for us. I feel so very blessed to have her in our lives. I pray every day to have things continue as they are. I know things can change down the road… but I’ll live in the moment for now. My six siblings are supportive and will help us cross those bridges when we need to. (As we did with Dad recently.) Anyway – your story touched me and now I’m rambling. God bless you.

  33. barbara

    Hello, Kay…my first time to a blog of any type. I care for my husband who is quite a way into
    dementia…but not so deep that he doesn’t get into everything. Which is really a problem because he doesn’t remember how to extricate himself from the problems he creates. I am 80 and he is
    70. And here I thought I’d be the one cared for!
    If he is out of my sight, I have to worry. He is also annoyed with me a lot because I have to say
    ‘no’ to him so often…(or words to that effect). I haven’t figured out yet how to get a couple of days
    off since I don’t have family near by but I’m working on it. I long for adult conversations again. and money is always an issue.
    I guess you could say I am tired all the time and wish I had my guy back.
    Good luck to everyone who is struggling to maintain a life in the midst of this.

    • Ann Napoletan

      You are in my prayers, Barbara… thank you for sharing your story…

  34. M M

    Thanks I feel a little more understood after reading this….. Thanks so much

  35. Denise

    I can so relate. As a 13 year veteran to Mom, a paralyzed stroke victim with dementia, I giggle at the story with food and incontinence concerns. I often feel I am not doing enough, I am loosing my patience, I cannot help her enough, and that I miss the woman who was once so powerful and determined. I watch her diminish, day by day. But in the midst of the mental chaos and confusion, she realizes she is disabled and demanding, yet barely speaking, and somehow she manages to get to me to smile, as I am the only one of the four honored children to care for her as she had done for me some fifty years ago, when I was a baby, and she tells me she loves me.

    One bit of advice, regarding the Depends, I discovered a way to save money with this expense. I purchase bladder pads and use them in conjunction with the pullups. Just do not remove the strip to the adhesive backing so they are easily removed, and place inside the pullups. Mom can remove that part herself, if she feels a drop. From one caregiver to another, it is a very long day!

  36. Donna

    Nobody knows what it takes to be a caregiver…..until the time comes when you’re the one doing it! I just spent 2 1/2 months taking care of my 97 year old father-in-law who suffers from Alzheimer’s. Mom, who has taken care of him for about ten years with no outside help, had a stroke and was hospitalized. Did I mention she’s just one year younger than he is? They live on the East Coast and I live in the Mid-West, so I got there as quickly as I physically could! I’ve spent long periods of time with them while visiting for usually a month or so, and I was (and still am) amazed at how Mom was able to care for Dad the way she does. Yes, she’s a very strong woman….all 99 pounds of her! In taking over the “duties” 24/7 really made me aware of her sainthood! She really deserves a lot of credit! I can only say that I was totally exhausted filling in
    for her! Yes, I always knew it wasn’t a cake walk taking care of Dad, but believe me, i had NO idea how difficult it really was until I was doing the care taking. I take my hat off to Mom, as well as each and every person out there who walks in her shoes! You are all amazing!

  37. Doris

    This story literally brought tears to my eyes. The last paragraph, especially, hit home. I feel like the most horrible person in the world sometimes. How can I be so impatient with this poor man? I HATE myself when I think some of the things that I do, or say some of the things I do out of his hearing range (he is legally deaf). Reading the stories on here, at least let’s me know that I am, if anything, human. I actually wake up, praying to God to give me more patience and to help me walk more in love with him and to show me how to help my father. By the end of the day though, it seems like there is always something that just pushes me over the edge and I end up hating myself for it. Thank you for sharing your experiences on here. Truly – you really have touched me and helped me tonight.

    • Doris

      I really appreciate your kind words, Doris. Believe me, none of us are saints and we all do the best we can. There were many times I was not nice to my mother and, yes, I also prayed a lot. But, like you said, there is always some new issue to deal with. It never ends or at least it seems that way and full-time caregiving is truly a very stressful “job.” My mother was very hard of hearing and also had much more dementia than I realized. I attributed most of her behaviors to being stubborn and bull-headed. I know now I was usually wrong. I should have figured this out earlier because much of the time she didn’t know I was her daughter, but in a daily contest of wills, it’s often hard to see what is really going on. I will say that the best way (next to praying for forgiveness!) is a gentle touch, a smile and “I’m sorry I was so mad at you. It’s been a long day” followed by “I love you, Dad.” Then offer a special treat like a piece of chocolate or dish of ice cream. (I recommend bringing the treat into his room along with the apology.) Then, if he kicks you out (hopefully not!), you know you at least tried. And if he accepts your apology with a smile and a “Thank you!” for the treat, accept it gratefully and know that tomorrow is another day. God bless you and your dad!!

  38. Jen

    I took care both of my grandparents when they were still alive and it was a difficult task. But I always find reasons to continue taking care of them. I also know a lot of caregivers and other people don’t appreciate what they’re doing.

    • Kay Engle

      Jen, you are so right about folks not appreciating the act of caregiving. You were blessed to care for your grandparents. I am sure they would thank you, if they could. I think it is a privilege to be able to care for a loved one even if it is diffiult much of the time Bless you for your sarifice.

  39. Judy Thompson

    Caregiving has ups and downs. When my husband was diagnosed with Alzheimer’s when began our journey. During this time I took notes after asking him how he felt and for his to describe his feelings, emotional as well as physical. The physical was far more than I had expected and the mental was an enormous learning curve. Alzheimer’s is a devastating disease that affects everyone differently. I wrote a book of my experiences and it is called “A LIFE FORGOTTEN from the eyes of the caregiver”. It can be purchased from Amazon.com.

    • Kay Engle

      Congratulation, Judy, on the publication of your book. I, too, wrote many pieces of poetry/prose about the astonishing and often perplexing situations that happened between my mother and me. I am grateful she did not have Alzheimers disease – the dementia was tough enough to deal with every day. Thank you for your comments and God bless you for your loving care of your father.

  40. Patty

    I along with my dad are a caregiver for my mom. She is currently in a long term care facility, but we are there with her on a daily basis, I take the weekend off, she has severe anxiety and if we aren’t there she does not function well. I know you may read this and think well at least you have help from the facility, but it is very hard due to her emotional problems, I stay with her from 11-7, Monday-Friday, but she never wants me to leave. My mom has a neuro muscular disease called Myasthenia Gravis, it affects the lungs among other things. When I go to leave she becomes very sad and tries to make me stay, which I usually do. My dad took care of her on his own at their home, she is on a ventilator, he took care of her medically and physically on his own, he asked me to come help him, which I would have done before that, but I had to work, so I cut my hours and was to help take care of her at home, but I was only there one day and she was hospitalized two days later and hasn’t been home since, now she isn’t walking, is tube fed and on the vent 24-7 now. I love her with all my heart but I get so frustrated and sometimes my frustration comes out through words with her and I feel extremely guilty, we all have a deep faith in God and we always pray with her and we ask God to help with the anxiety that plagues her, we talk to her and tell her to pray and give God her worries, but it never seems to help her for long, she clings to the fear like a life raft. I just want to leave there without feeling guilty and sad, my heart hurts as I type this. Anyway I’m glad I’m not the only one who gets frustrated, feel a little less like the monster I felt earlier. Again, I know my situation is different because she is in a facility and they of course handle the medical care and etc, but we take care of her emotional needs and often I finish the job of the aides when they leave things half done. Thank you to anyone who took the time to read this!

    • Kay Engle

      Dear Patty, I can relate to the agony you are going through although my mother’s anxiety was not as severe as your mother’s. Emotional needs are probably the most difficult for anyone to face because they are so difficult to understand. My mother was very anxious and nervous which upset me because I, too, worried about her mental state and her fear. Her doctor finally put her on a medication which lessened her anxiety greatly, however, these drugs may have serious medical side effects. Frankly, I don’t know which is worse: watching a loved one suffer or taking a chance on the side effects to bring them relief and some comfort. I pray you will find the right answer for you and your mom and hopefully she will find some peace. May God bless you in this difficult journey.

  41. Marcus

    I totally understand my friend!! My mom was 49 when I was born so I’m the baby (44) & my brothe is passed away so I have to take care of a mother that was unnurturing & mean when it came to my problems & feelings when I was growing up!! I have just recently healed from a lot of bullying in school, & as soon as I healed my mom fell into
    dimensia!! Now I have to take care of someone who had no regard or understanding for my problems as a teen!! That wreaks havoc on my self esteem, & many things of the past I hate my mother for the things she did not understand & criticized me for!!
    When this lady goes, it will be a sigh of relief!! I’m doing for her what she would have never done for me!!! I’m telling you my mother was EVILENE when I was growing up!!! So don’t feel like it’s so
    bad!! If you do, I’d be glad to let you get
    away & I will take care of yours & you can come here & babysit EVILENE!! & I really mean that!!! I will always honor my duty as a son but it doesn’t mean I have to enjoy it, or LIKE the person I’m taking care of!! & I can’t stand Cruella DeVille!!! Sound bad what I’m saying!!! Tell you what come stay here for a week & I know you will see what mean!!! Anyone wanna trade places??????

    • Kay Engle

      Marcus, I am so sorry you are burdened with the care of a mother who showed little respect for you. I have not experienced the kind of evil with my parents, but I feel your pain in your writing. My hope for you is that you will experience some peace sooner or later for caring for her whether or not you dislike it. Maybe some mental issues have played a part in her attitude toward you. Regardless of this, may God bless you for all your efforts. You certainly deserve it.

    • Beverly

      Dear Marcus, I share all of your sentiments, although it’s a demented husband for whom I’m caring. He literally drank himself into this condition. Plus, he has: spinal stenosis, COPD, prostate problems, vascular problems, and more. He comes down, periodically, with either pneumonia or C-Diff. I have MAJOR hard feelings towards him, yet I soldier on. If forgot to mention that he’s verbally abusive too….I think that, if he weren’t, I’d have better feelings and less stress overall. He’s elderly, older than I am. When he’s nice, he can be very pleasant, but, like Jekyll and Hyde, he’ll soon revert to form. I’m trying to do the right thing for another human being (not to mention less expensive), but I’m having emotional and even health problems lately. These people who didn’t earn or love and respect now receive more than their share. Just venting….it helps!

  42. Anonymous


    I understand where you are coming from. I was born late in my parents life and while Mom wasn’t mean to me, she said or did nothing when my father was nasty to me. She loved me but it was obvious her grown children were more of a priority than me. I grew up and got over it, no sense making my adult life miserable worrying about a rotten childhood. Well, after two years of caring for her in my home, those old feelings have resurfaced. I have repeatedly pleaded that she give me a break and stay with one of her other children, but she refuses to go and often gets “sick” when the topic comes up. She thinks nothing of me giving up my life to care for her as if my life is not important, it is making me very resentful and reinforces those long forgot feelings that I am not as important to her as her other children. We all love our parents and want to do right by them, but the truth is caring for a parent in your home or their’s should only be a temporary solution. It is impossible or anyone to do this long term and maintain good mental health. Even the best parents who once were unselfish become selfish and have unreasonable demands and expectations of those who care for them. My limit is two and a half years and I have told her so, it is up to her to chose another child or a care facility. I am depressed most of the time and constantly feel fatigued because of the feeling controlled by the situation. She acknowledges that Ioom exhausted and that I’m not myself and suggest I see a doctor, but refuses to see that being her caregiver is my problem, even though I have repeatedly begged for a break.
    We as children, have got to quit feeling guilty and parents have got to quit thinking there kids can put there life on perpetual hold to care for them. I have told my child she is never to take me into her home under any circumstances. I have purchased long term care insurance to ensure I can cover the cost of a facility. I will never do this to my child!!

  43. Daniel Subbotin BSc, BA, DD

    Thank you for sharing your experiences coping with the challenges of looking after your elderly mother. In my experience with mobile house calls for seniors, when patients lose a considerable amount of weight in a short period of time, there may be issues with their ability to wear dentures. During weight loss, bone tissues shrink and the denture does not adapt to the mouth tissues tightly. This can cause discomfort, pain and possible infection. Routine dental visits are critically important for the elderly. A mobile dental hygienist, house call denturist, or mobile dentist who makes visits to nursing homes, retirement homes, or private residences are a great asset for maintaining the oral health of seniors in our community.

    • Kay Engle

      Thank you for your insight, Daniel. I agree there are many ways to help our elders with dental, vision and other necessary care. I was fortunate to have my mother living with me even though for a very short time so I was able to notice changes physically as well as other behaviors. This meant I was able to provide that help very quickly which helped both my mother and me. There is so much we have to learn about caring for our elderly. Thank you again! Kay

  44. betty

    In all these posts, I only found one that had to do with a sister caring for a 66 y.o. brother.
    That’s what I have been doing since our mother died seven years ago. Thankfully, he is in an “assisted living” situation about 3 years now. He has early onset Alzheimer’s, bipolar, and seizure disorder – but thinks all he has is seizure dis. Is getting harder and harder for me to handle. He has one daughter a long ways from here who sees him about once a year, calls him once a week. She has no concept of what I put up with. I vent to my younger sister, who doesn’t live in our town, either. I am beginning to think that a lot of my problems come from him being a sibling. When I read all these other posts of people caring for someone at home, I realize I don’t have nearly the problems others do! Yet it is still very stressful for me. I agree with another poster who said it is depressing to listen to support group people. I am having health problems now.

    • Kay Engle

      Hi, Betty. I understand your stress as well as the workload from caring for your brother. I think caring for a family member is naturally more stressful because many times other family members do not offer help or support. Even having your brother in Assisted Living does not lessen the stress. Just visiting and shopping for him not only takes your time, but also energy from coping with memory loss, etc. I also understand that support groups can be depressing. I personally find that I benefit more from positive feedback far more than others commiserating over their stresses. I think a heart-felt “thank you!” is worth its weight in gold. Thank YOU for caring for your brother and may God bless you for all your efforts.

      • betty

        Kay: I have done caregiving for about nine years now – I mean, as a regular part-time job.
        Something I heard a long time ago has a great deal of truth in it: someone ELSE can take care of a family much easier than you, because they don’t have the emotional attachment. Do you agree?
        Also, thanks for your “THANK YOU” . It helps.

        • Kay Engle

          Yes, Betty, it is somewhat easier to care for someone other than a family member, in my limited experience and opinion. However, in some respects, it is more difficult since you then have family members and all the opinions and baggage they may still bring into play. Let’s face it…caregiving is not an easy job for anyone and the longer the journey, the tougher it may become. Stress and fatigue can take a toll on anyone. But God bless those caring folks who continue to bear the burden and that includes you!

    • Diana

      Kay, I have been my mothers caregiver full time for a year now. I moved her into my house when it became evident that she could no longer care for herself. I retired early (at 58) to care for her. My husband had passed away 8 years earlier and my children are grown and it seemed easier to move her into my home than trying to live in her home. I didn’t know what I was in store for. I immediately had her evaluated and she was diagnosed moderate to severe with Alzheimer’s. She doesn’t enjoy anything. She doesn’t like watching TV. She doesn’t like music. She attends an adult day care twice a week and complains about being there and that’s when she decide to talk to me. I feel I am at my wits end. Unfortunately my siblings all live out of state and I am not getting much help. I have tried to find information on funding for Respite care but I continue to run into stone walls. I don’t know where else to turn.

      • Kay Engle

        Hello, Diana. I appreciate your comments on caring for your mom. I confess to knowing little about Alzheimer’s, but in many respects, I believe there are similarities to dementia. I have read both conditions are related and my experiences in caregiving apply to dementia sufferers. Having said that, I found that simply going with the flow and accepting your mom’s silence and lack of interest as having nothing to do with your care for her. Dementia shows up in so many ways. Many times my mom would simply retreat to her own world. She would often refuse help – even if it was to cheer her up or help her. It took me at least a year to realize I needed to ignore these times and just walk away. There was no point in trying to argue with her in this state of mind. It would have gone no where and caused me more frustration. The daily grind of caring for her, really took a toll on me, too. In fact, after caring her for only 19 months, I was on the verge of sending her to a nursing home when she suddenly went into decline and passed away.

        It is so unfortunate that our elderly are not offered more care through insurance including Medicare. I did find the following on the internet re respite care. Perhaps it can offer you some help. You can even contact this website for more information and perhaps advice on caring for your mom. I wish you the very best outcome, Diane. May God bless you in all you do for her.

        ” Respite care is not typically covered by Medicare or health insurance. Most of the options above would be paid for privately, although some funding may be available through caregiver support programs or disease-specific organizations. For example, chapters of the Alzheimer’s Association and organizations like the National MS Society sometimes have funding available to help offset the costs. Additionally, programs may be available through your local Area Agency on Aging.

        Subscribe to our blog feed to receive our additional tips on the topic of respite care and other Florida eldercare advice. Or, CONTACT US today for consultations, assistance and advice for families caring for elderly loved ones.

        Read more: http://www.agingwisely.com/caregiver-breaks-do-you-know-your-options-for-respite-care/

  45. Gail

    Found this enjoyable reading as I am now living with my elderly mother-in-law. It is much harder than I thought it would be or perhaps it is the sameness each day that is hard. She does make me laugh each day which is good and fortunately we get along well. I wish there was something I could find for her to do as I think that some days she is bored. It is winter and we can’t get out easily and she cannot concentrate enough to read and she does not really enjoy tv. She has always been very independent and so I know this is hard for her. Thanks for your story.

    • Kay Engle

      Thank you, Gail, for the kind words. I can relate to your frustration wishing there was more you can do for your mother-in-law. Sharing the same space can provide many opportunities to share simple things such as watching the birds at feeders and bathing in a bird bath. My mother loved a few movies which we would watch together occasionally. I would turn the subtitles on to make it easier for her to follow along. She loved the Lawrence Welk show which is still on the public TV stations. Just sharing simple daily tasks with her gave her enjoyment – like showing her the needlework I was doing and explaining how it was done or showing her a recipe I was preparing for dinner. There are simple activities she could do by herself such as working jigsaw puzzles or circling words in word-finder puzzle books. I buy large piece puzzles anywhere from 100 to 300 pieces in the best quality puzzles I can find (Ravensburger are great) and the word puzzle books come in large print. I found some pencils at a hobby store that had darker “lead” – also some colored ones which make it easier to see on the puzzle and still be easy to erase. A few hints on the jigsaw puzzles: I try to find ones with the clearest pictures, not too dark and images she will like. Even some cute ones aimed at younger children can bring smiles to her face. I also help her pick out the border pieces and put them together to get her started. The Ravensburger puzzle pieces are sturdy and easy to pick up and, best of all, they stick together. (The puzzles and word books are activities I now share with a 98 year old friend.) Another tip if you decide to choose jigsaw puzzles: WalMart and Amazon have the best prices on these puzzles which can be quite pricey. Fresh flowers are another idea to share with your mom-in-law. Also a potted plant like a cyclamen will bloom indoors year-round and can be found in most grocery stores in shades of pink and white. (I put mine outside in the summer and keep it in a sunny window the rest of the year. It is now 6 years old and still going strong.) My friend loves to see new buds appear and open up. One last tip: I gave my mother her own special chair in my living room. It gave her the best view of the birds and flowers on the patio and also made her part of the every day activities in the house. She had her own chair in her room, but this gave her two choices and two changes of scenery. She even ate her meals in them.
      I hope I haven’t worn you out reading my suggestions, Gail. Every one is different and I learned so much just by watching and listening to my mother (and now my friend) – their complaints and their wishes often expressed only to themselves. I even learned to laugh instead of taking their comments personally which made things much more pleasant for both of us.
      I wish you the very best, Gail. Your mother-in-law is blessed to be cared for by you. God bless both of you on your journey.

  46. Jewel

    Thank you, for this. My hubby and I (we’re rather young I’m 39) moved in with his mother–I had to quit my job–& my sister and I are co-caregivers for “Momma.” I would’ve been committed to a loony bin if not for my sister’s help! This is a new season that I didn’t think I’d reach until I was older:-)

    • Kay Engle

      Thank you, Jewel, for your comments. I agree, 39 is really young to be a caregiver to an elderly parent. But, I learned one thing and that is, all you can do is all you can do. Thankfully you have a sister to share the journey. The thing I found most important while caring for my mother is to pay attention to her needs and also her mental status. Dementia and Alzheimer’s can make things very difficult in an instant. Understanding these things will help make your “job” a lot easier. Please feel free to look up my other posts on this site. They may give you some insight in other everyday happenings in the world of caregiving a parent. My very best to you and your sister for caring your loved one. It is indeed a great sacrifice, but one you will never regret. God bless you both!

      • Jewel

        Thank you, Kay:-) I found a great website that, for me at least, also offers great resources: it’s either standwithhope.com or standingwithhope.com. Peter Rosenberger authored a book, Hope for the Caregiver that I devoured in 2 days:-) I’ll continue to check out resources here as well. God bless:-)

        • Kay Engle

          That’s great, Jewel! I believe faith and hope are essential in all aspects of life and especially in stressful situations like caregiving. I know you will do well with the research and outreach you are doing. May God continue to bless your efforts.

  47. Maureen

    I am caregiver to my deaf uncle for over one year, also I am deaf plus my husband.. Uncle don’t have his own children, he married to his deaf and blind wife 59 years and she died three years ago so and in two weeks he will be 90 yrs old and he has dementia for two years.. it’s no fun.. we has been a lots of patient with him because his sisters and brothers, nephews and nieces don’t know how to communication with him as they want to put him in nursing home.. Uncle was begged us to care of him.. he been up and down.. he only can watch his favorite show is Classic movies as black and white movies and he love to watch his Detroit Tiger baseball games… My husband and I did go out once awhile and our best friends was sitter with him while we were away as break time.. it’s not easy for us to be care of him.. so all are good… I been read all your comments, and you all are Blessing!

    • Kay Engle

      Hi, Maureen. What a testimony to the challenges facing caregivers! Your situation is amazingly complex. How fortunate your uncle is to have you care for him. I can only say don’t give up and I promise you, God will bless you and him for all the struggles you endure. And You are amazing! May God bless you throughout your journey. Kay

    • RJD

      Dear Maureen…u are doing a great job… I have lot of respect for u.. Don’t worry God is wth u.

  48. Khem Hamnauth

    Great story Kay,

    My story is a bit unique as I am a first time blogger, just seeking to connect with people in familiar circumstances. I am 30 years old, and have been the primary caregiver for my mentally disabled (mild mental retardation), schizophrenic mother since I was 15 years old. She is currently 54 years old, and has been living with her mental disability all her life. She suffered bouts of PTSD, depression, and schizophrenia in her early twenties and has been living with it ever since. I am her only child. My father is not in the picture, nor never was. That’s a blessing in itself. He was a deadbeat, drunk, and abusive, part of the reason she suffered depression and PTSD. We are living in Tampa, Florida, originally from Bronx, New York. Been here for four years. Closer to family and better environment for her and myself.

    There are times where I truly struggle. I have never had a close relationship with someone. Caregiving has been my life. I do it for all the reasons everyone on this post has listed, love of the person, you know it’s the right thing to do, you get by, it becomes second nature. Caring for her sometimes gets to me, as I am struggling to find my path in life while also providing the best for her with the little I can do. Through some great influences in my life (family and friends), I was able to graduate college, a BA in Criminology in 2007, and a MPA in 2009 but fulfilling work has been hard to find as I am deeply unsatisfied with my profession as well as my current state of mind. I bought a townhouse in 2014, scraping together funds from a 40K a year job and some nifty investing to secure a place to call my own. Seemed like a smart move. Why rent when I can own for $200 cheaper a month. Now I’m a homeowner with an income from SSI disability and my job. What gets me through the days, the doctor’s appointments, the pill monitoring, meal preparations, and overall breadwinning duties, is my drive to find “me” time. I arrange travel and self-vacations as often as possible, keeps me sane, and connected to life. Never for too long as my caregiver duties can only handle at most a five day hiatus. A strong network of close friends also helps too. They provide the guidance when needed and partner with me to the gym, local events, and weekend activities in order to have some type of social life.

    The challenge is this, how do I balance living for myself while living for her? I know her condition will only get worse, as she also is living with diabetes and high cholesterol, and the older she gets, the worse she will become. Already changed her diet, eating wholesome, healthy foods, drinking lots of water. I think I’ve given her at least another five years of life from dieting alone. But I’ve made so many sacrifices already, most notably in relationships, feeling like I have so much responsibility that I cannot make a bad choice as to who I bring into my world. How do I convince a prospective candidate to consider both me and my mom? I want children someday, I would like to raise a family and see it as a life goal. But I don’t even have a girlfriend and find it hard to find women out there. There are also days where I wish I lived a diferent life. Had a “normal” family, a mom and dad that were self sustaining, didn’t need my help, and that allowed me to branch out to pursue my life’s interests. I feel “closed in” at times, knowing that every move I make I must consider my mom first. How do I get through it? Any suggestions. Thanks for reading and continue all your wonderful, fantastic work.

    • Kay Engle

      Hi, Khem. Wow, what a story of courage and perseverance! I commend you for taking care of your mother all these years. I struggled caring for my mother for 19 months. It’s easy to see how much sacrifice you have made over the years, but, I must say, you have much to offer the right person in any circumstance. It’s impossible to forsee the future, but a man of your compassion and strength has much to offer another. I have no advice for you other than how awesome I think it is that you care so much for your mother. It is my hope that you will have opportunities to connect with another as compassionate as you. May God bless on your journey forward. Do not give up!!

  49. Donna

    I work for a independent living home. I have 3 residents in my home. 2 mentally ill and I physically. People dont relize just how difficult caretaking can be. . It takes a very unique person to do this work. Not many can. Thank you for your story. You have inspired some with it. I love my job. I love my residents. I couldnt imagine doing anything else. Caring for family hits u straight in the heart. It something that just has to be done. U sacrifice alot sometimes. For me. I chose this as my career.Been doing it almost 18 yrs. God bless you for caring for your mom. . ?

    • kay engle

      Hi, Donna. Thank you for your gracious comments. You are so right. Caregiving is not for the faint of heart. May God bless you as you continue to care for others. You surely deserve it.

  50. Jennifer Bryant

    Dana – I’m a bit late to this post. We are a month away from my mother in law moving in with us and me taking care of her full time. She is still ambulatory and can do things like sort laundry and dry dishes. She has some dementia and is completely blind in one eye and has about half her sight in the other so she needs someone with her. Plus she craves social interaction. I’m doing a ton of research and have lots of ideas of what we can do so she doesn’t get bored – trips to the senior center, taking the dogs for walks, letting her sister take her shopping and to get her hair done, games and activities she can do, how she can help me so she has that sense of purpose. Of course there will also be doctor appointments. I’m working on a daily and weekly schedule, knowing there are times when those will completely go by the wayside. In those schedules, I’m building in “me” time and time for my husband and I. I realize I’m thinking ideally right now and as someone said, the honeymoon will end. 😉

    What was so encouraging about reading your story is I saw the love and the struggles peppered throughout it all. I saw a good balance. I am working on my patience and not taking it all personally. It helps I made this choice, but I’m sure there will be days.

    I’m going to call our area agency on aging for more “education”. They need a “What To Expect With Dementia / Alzheimer’s” type book! 😉 Maybe I’ll write it! What do I need to add? What else do I need to think about?

    • kay engle

      Jennifer, thank you for your comments. Before I forget, there is a good article on “A Place for Mom” website about the do’s and don’ts of dealing with dementia. I think it will help you immensely. I wish I had had that advice when I cared for my mom. Unfortunately, I did not realize she had as much dementia as she actually had. The one thing that caused me the most difficulty was the push-back I got from my sisters. They could not grasp the fact that our mother needed a daily schedule – especially for meals. Fortunately, we made it through and mother, I believe, got the best care we could offer. May God bless you as you begin your new journey. And remember that dementia is something you cannot change or fix. Do the best you can and you and your mom will be as happy as is humanly possible.

  51. Laurie

    I’m happy to of stumbled across this as well. I take care of my husband’s ex wife, we moved her in a little over a year ago. From what I can gather her symptoms started in her 40s. We thought it would be a very short time while we helped her sell her home that she was no longer able to maintain. Her daughter was going crazy trying to help her and kept showing up at our house in tears not knowing what to do, so I said just move her in here, we will get the house sold and get her into an apartment. She drove and worked at the time and I had never met her so that would be easy right, wrong! After moving in with us we were able to determine that she was much worse off than we thought and could not possibly live on her own. So here I am still talking care of her and it’s not easy. She cannot prepare any meals, do laundry, she cannot help with housework in any way. Shortly after moving in I was trying to keep her occupied by asking for small help like lining a pan with a pre torn piece of foil and she could not accomplish that task. Needless to say a year later she has gotten worse. I think the thing that hurts me the most is her constantly telling anyone who will listen very bad things about me that are not even remotely true. According to her, I spit on her, throw things at her, cuss her out, call her names, deprive her of extra coffee in the morning, and so much more to include my husband asking her for sex. My problem is that I’m not cut out for this. She now cannot dress herself or shower. I don’t mind doing her laundry or preparing her meals or helping her at all, it’s the things she says about me behind my back that gets to me. We live out in the boonies so we are very limited on care facilities. My grandma was in the one in our town and they treated her badly so that place is not an option. I’ve grown to love her over the year and won’t place her there or the other option 99 miles away. So I’m feeling stuck. She is the nicest person you could ever meet otherwise. But I struggle with what to do so I just keep doing it. This is not what I thought I would be doing in my retirement age. No fun trips alone, no private time with my husband. This consumes every minute of my day. I pray a lot for help. I pray for patience. I only want her to be happy and content and the same for myself. I dont know what our future holds but I only want what’s good for her, I put myself on the back burner for now but not sure I’m cut out for this.

    • kay engle

      Hi, Laurie. Wow! You certainly have your hands full! And your commitment and love for your husband’s former spouse is amazing. You are doing something few would take on. The one thing I learned from caring for my mother is that you can’t argue or defend the behavior of one with dementia. It takes many different forms and none of them make sensed. There is a wonderful piece on “A Place for Mom” website that describes the do’s and don’ts of dementia. I think you might gain some measure of comfort from reading it, if you haven’t already done so. As for the continuous daily care, perhaps you could hire someone to come in to help with some of the work load. I admit that did not work for me because every day is a bit different in one way or another. The only advice I can offer is to keep your routine with her as simple as possible and hopefully find some time for you and your husband when you can. I guarantee you that you will be forever blessed for the loving care you are providing to this fortunate woman. Prayer can only help make things better, that I am sure of. Pray that God will give you peaceful times throughout your day and they will happen. God bless you as well as your husband for taking on this huge responsibility. You surely deserve it.

  52. Jay Snyder

    God do I know that feeling.
    As a senior on SSI I have no choice but to work. I can not wait to go home everyday and get out from the job.
    Then i Dread going home to my wife who has dementia I never know what she will say or do to upset me.
    I have gone through 3 and half years of this.
    I am ready to have myself placed in a mental health hospital. I know its not her fault and it is the disease. I could never leave her after 27 years of marriage but i am at my wits end on what and how to handle this problem.

  53. Janice Farley

    My problems with my mother are way worse than this story. Plus my family is fighting against me. I got my mom a lawyer because my youngest brother who sold my mom’s condo and said he wrote to my mom and me staring he gave away $90k to kids in need. He was the POA at the time. Now my mom has no money for her funeral or burial expenses and he isn’t responding to the attorney so we will have to sue him. We have no money to do that. So now my mom will have to be buried by the state. I have 7 other siblings who call about once every 3 months to talk for 5 minutes. I was never close to any of them and an older brother either. Most of them live out west very far away. One of my sons asked me if I wanted him to go shoot his uncle’s car up for giving the money to charity. And on top of all this my mom is a very impulsive, mean and abusive person. We live in my home. She has Lewy body dementia.

  54. Janet Kirch

    I cared for my mom for 4 1/2 yrs, while she was in a living assisted facility and then the last 6 months of a nursing home. Although she lived in a home, all it was, was a location, I was still the go to person, the it person to handle and address everything imaginable. I also cared for her in ways after my dad passed away and I had to leave my family and fly to another state to provide care, and then out of no choice I had to move her to my state. Please facebook friend me to read many posted describing my challenges, pleasures, moments, and the many faces and complexities of being a care-giver. I also wrote a post proclaiming we have a Nationwide Care – Giver Clara Day, named for my mom. Unless someone has walked in our shoes they just don’t get it.

  55. Rachael K

    This story was very refreshing. I am 31 years old and I work 70 hours a week. My mother is 66 and I have been her caretaker full time for a month now. It is overwhelming and I am trying to struggle in between quitting my job to take care of her but ALSO finding a way to pay the bills as well. I have no help. Hospice is involved but they stop by once a week for check ups. Everyone tells me to put her into an in patient facility but there is NO way that I can do that. She is a very independent woman and I know already she is not happy with her disabilities. She took care of me so now it is my time to take care of her. I googled caretaker and this is the first story that popped up. Nice to hear about your routine also, I believe that would help a lot. But enough of that I just wanted to say thank you for your story!

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