alz-patient-sleeping

Another day has brought with it more unrest and a definite need for some serious soul searching.

Running on Empty

In the past two days, I’ve had essentially no sleep. I’ve locked myself in my mom’s room to write this post and settle my nerves a bit. She’s been up and restless all day, and absolutely refuses to lie down. In fact, she really doesn’t even want to sit. She’s terribly weak and unsteady, yet she wants to stand. So we’ve stood. We’ve walked. And we’ve stood some more. We’ve sat in the chair, the recliner, the sofa, the loveseat – it’s been like an extremely long game of musical chairs, but not nearly as fun.

First thing yesterday morning, I made an appointment for hospice to come out at 9am today. By 4pm, I’d talked to the neurologist and decided to cancel the appointment. Now, I find myself wondering if I did the right thing.

We’re dealing with severe orthostasis on top of late stage Alzheimer’s. We’ve taken her off of her hypertension meds and beta blocker and the issue persists. Our doctor believes that much of the difficulty she is having right now is a direct result of the blood pressure issues, and that if we can resolve those, she might return to baseline. He prescribed a new drug, which she started this morning. Blood pressure is up a bit, but no change in symptoms.

Weighing Options

I realize it’s just day one; too early to make a determination. Every time we try something new, it requires a “wait and see” approach – and patience. I’m the first to admit patience is not my forte, especially when we’re on what feels like the 254th change and “wait and see” cycle in the past 6 months. There a couple of lessons I am certain I’m supposed to be taking from all of this. One is patience. The other is the realization that I can’t control everything. In fact, there is very little in life that I am truly able to control.

I suppose the neurologist was as compassionate as possible for a brilliant scholar, but he was also very realistic. He thinks trying the new med is the best approach, but he doesn’t know. Hospice is an option, but they will come in and administer narcotics until her body shuts down. She will be gone for all intents and purposes. Sounds cruel in a sense, but is it really?

It’s funny, I’ve always said I’m in favor of euthanasia if the proper protocol is followed – patient specifies their desire well in advance of any illness, while of sound body and mind. For me personally, it’s a “no-brainer.” I never want to lose every last shred of my dignity while my loved ones helplessly witness it. But, then, neither did my mom.

Reality Check

So the soul searching continues. How long do we wait? What exactly are we trying to accomplish? After all, the disease has no cure. Are we just prolonging the inevitable? She is so thin and frail at this point that it’s staggering. Let’s face facts; mom is miserable the majority of the day and night. The smiles are fewer and fewer. This is what the late stages of Alzheimer’s look like. I’ve had moments in the past 48 hours where I didn’t think I could bear to see her suffer for another minute. But then, this isn’t about me and what I can bear.

This is about what’s best for my mom. And she is tormented for hours on end. If we get the orthostasis under control, and if the severity of her distress returns to baseline, so what? We wait a few weeks until the next thing crops up? Another UTI? Pneumonia perhaps? This is a no win proposition. Even the neurologist said there is no right or wrong answer. “You are in a very difficult situation.”

The Ultimate Question

On paper, it seems fairly clear. And then we have a couple of good hours, where she smiles, laughs, and makes her best silly faces. Those are the points at which it feels like we should continue to fight. Because that’s what you do, you FIGHT. The question is, how long do you fight a battle you’re destined to lose? And how much suffering is enough for the innocent woman who didn’t ask for any of this? What would SHE want?

20 Comments

  1. Courtney

    Love you. Although you may not like your answer, you already know your answer by the sounds of it. I pray that you, Jess and your mother will find peace in the decision when you make it. My mother, and her sisters had to make a similiar decision just last year. My grandmother was 91, frail, but still living by herself. Memory was rough, but she was there 95% of the time. Over a few days, her body started failing her, but her mind was still there. They had only hours to make a decision, to ease her into passing away or watch her be tormented with physical pain, embarrassment (she was well aware of what was happening and didn’t like “people to fuss about her” nor to see her in the hospital.). They opted for the ease of passing since the doctors said, she would not be returning home and that passing away was coming quickly. My mother made peace with the decision, my one Aunt as well, but my other Aunt has struggled with it daily since then. Second guessing herself and the situation. She felt God was testing her and she failed. For every situation, every person, the decision is their own and they must make amends with it before making it. I pray that the peace and confidence will be with the both of you when the time comes. <3 you.

    • Ann Napoletan

      Ah, Courtney, I understand how your aunt must feel. While part of me knows I’ve done everything in my power, I wish I had been more patient at the beginning, spent more time with her then when she was “here” – but it was so painful then in that interim period between her being my mother and me becoming hers. I’ll always have some regrets there. On the other hand, as odd as it sounds, I feel like this experience has brought us closer together and the bond between us feels stronger than ever. When she looks at me, smiles, and says ‘I love you,’ I know she is aware… that she’s present for a second or two. And I know that she feels my love. At the end of the day, we all just have to do the best we can each step of the way. Thank you so much for sharing your story and for your support. xo

      • Ayberk

        I was disabled to 100%, hovweer, it is only temporary even though it was well known that my condition would not improve. In fact, it was known that it would, in fact, be permanent and would get worse over time. It won’t be revisited until 2014. I cannot walk without a great deal of effort. I cannot go upstairs to the bathroom without assistance nor bathe without assistance. I am hoping, through our travails, that future spouses will be, at the very least, given healthcare. My husband and I now have no recourse but for him to go back into the workforce. He is a truck driver and we lose between $2500 $3000 a month in income. I am well aware that we will have to pay, out of pocket, for general housecleaning, an aide to come in and bathe me and feed me since I am unable to do those myself anymore. That will cost between $1800 $2000 which will result from a total net income from him working of between $500 $1200. Not very fair, in my opinion. My husband deserves so much more for everything he’s given me, a veteran of a foreign war.

        • Ann Napoletan

          (Ayberk)
          I am so sorry… you’re right. This just isn’t fair. The health care system in the U.S. is so broken. May God Bless you and your husband. You are in my prayers tonight.

          ~Ann

  2. Gail

    Each day brings both joy and sadness or pain, doesn’t it? From my own experience, I can tell you that hospice does so much more than just administer narcotics and wait for the body to shut down. In fact, my experience has been quite the opposite. Since calling in hospice, my mother and I both have so much support. While the focus is on comfort care, they are also quite concerned with ensuring that quality of life is the focus. I was recently surprised to read of several studies that indicate those on hospice actually live longer than those not involved with hospice care. Something to consider and ponder.

    • Ann Napoletan

      Hi Gail, thanks for your comment. You’re right – each day is such a dichotomy of joy and sadness… sometimes I don’t know if I’m coming or going. I can be laughing one minute, and literally crying the next.

      I’m glad to hear that your hospice experience has been positive. That gives me hope, and I do truly feel we’ve made the right decision and chosen the right hospice for us. It’s only been a couple of days, but I do feel like a tiny bit of weight has been lifted from my shoulders. The people I’ve talked to thus far have seemed very compassionate and understanding, and as you said, they are concerned with the well being of everyone, including Mom’s caregivers.

      Sending prayers and positive thoughts to you and your mother… and thanks again for your comment. It helps so much to know that we aren’t alone.

      -Ann

  3. Diane L. Myers

    Friend, I have supported my father (who left my Mom and me when I was about 5) for the last 11 years. He moved into my mother’s house,(purchased when I was 14, WITHOUT any financial help from my Dad, no alimony, no child suppoert, NO money requested at all, just custody of me).. When my beloved Mother died, in 2001, he was homeless, and I invited him here, to come and live in our House (where Mom and I lived), rent free. He accepted, and then over the last decade, proceeded to trash the house. ” Hoarding: Buried Alive” can’t even BEGIN to describe the state of the house! He became very ill (From NOT minding his blood sugars, he is diabetic), and I had to PHYSICALLY finally drag him to my house, where I live with my husband of 30 years. After 2 years, with my Dad living with us, my beloved hubby gave me an ultimatum.. “Find somewhere where he can be looked after and be safe, or I;m going to go… ” I can’t say I blame him., but it required A LOT of hard work…And then, after we moved him, I ended up with progressive back pain, now have 21 rods and 4 screws, PLUS a bone graft spacer in my L5-S1 spine, then 8 days in ICU because I was in poor condition (due to waiting on my Dad for 2 years as other factors. My husband who REALLY tried to welcome him, got fed up with my Dad sitting on the couch, holding out a plate or a glass whenever I went into the kitchen, wordlessly COMMANDING me to get him food or a soda or tea.

    So this is what I say, my Femme de Guere, I tried, I REALLY tried, but I’m now 55. I think it is better for BOTH of you to place her. Place her where she can be safe and looked after, and spare yourself the misery of your Mom dropping away from you bit by tiny bit! It’s shere torture, and both you and she will be better off.

    If this sounds hard, please forgive me, but ig yo uwould like to talk more, my email is [email protected]. Please feel free to contact me. Or berate me,

    whichever is your wish. Anyway, I wil look for a response.. In the mentime, GOOD LUCK, and may God be with you!

    Yours in Sympathy, Diane Myers

    • Ann Napoletan

      Thanks for sharing your story, Diane. All things considered, you are a saint for doing everything that you did. At the end of the day, each of us knows our limits. My mom is in an adult group home with four other ladies in varying stages of Alzheimer’s. I know myself well enough to realize that I did not have what it would take to care for her at home, and since I have to work, that really wasn’t a viable option anyway. After a bad traditional assisted living experience, she has had the best care I could ask for over the past two years. We’re blessed that her pension and social security provide for her to be in this type of environment. It’s a far cry from how she planned to spend her “golden years,” though… that’s for sure.

      Take care and thanks again for commenting.

      -Ann

  4. Polly Harris

    OMG. My mom passed on June 3rd. No alzheimers. Just circling the drain for over a year. I soooo identified with your story. The week BEFORE she fell and broke her leg at the top of her hip replacement I spent the night in the car crying on the phone to a employer paid counselor. I was a wreck. Her life had gone on way too long and my well was dry. Your words are echoed all over the country. I recently saw an episode of Frontline called the Suicide Plan. As we caregivers age it is my ferverent hope that we work towards changing the laws in this country to allow us this choice.
    I for one do not want to linger as my mother did or your mother has. I wish you strength and energy to face the next battle, but remember you are doing the BEST you can do. No one else has a right to judge you. Thank you for your eloquent testimony to the trials you are facing.

    Polly

    • Ann Napoletan

      Polly, I’m so sorry for your loss.

      I think we who have been through this sort of thing can all agree that we hope and pray for a quick end when our own time comes. I will see if I can find that Frontline episode online. I would be interested in watching it. I believe at some point, this will be a viable option, but it won’t be any time soon. I think this is something we should all have the right to decide – with regard to our own lives. I’ve said several times this week that if I could have five minutes with my mom – just five minutes with her as she used to be so that I could ask her what she wants, I absolutely know without question what her answer would be. When I think of it in those terms, I know that bringing hospice on is the right thing to do.

      Thank you for your kind words… sending you strength and blessings as well as you adjust to life without your mom…. (((hugs)))

      -Ann

      • Gayathri

        Why is it that the VA said that they have the right to take the same rights that we have fhogut to get everyone else. I was wounded on 4-24-04, My wife is my Caregiver an she does all the bills. Which they pay her so much for doing the bills. I have TBI, a new jaw an a bad arm that will never work as most of you.But the VA sees fit to not only take my second am rights but hers as well.Our Representatives an Congressman are trying to get bills past to wright the wroung that has been done to countless number of our Vets. We are not some kind of crackpots or madmen running around trying to kill everyone that comes close to us. Any help would be nice so that Vets can take or grandkids hunting an fishing just like befor we gave our time to help those in need. Thankyou

  5. Marian Cramer

    Thank you for sharing your struggle as you deal with the Alzheimer issues for your mother and more important right now, yourself. I am in the same struggle. Two months or so ago, we had to take my beloved husband to an Alzheimer facility. I am not yet able to talk about it without crying. We were married for 60 years come February of 2013. It was not uncommon for brides to be 18 in those days, and I was one of those gals. My husband was 25, so we had at least one adult in the mix. During our first 6 years of marriage we had no children, and husband had both the love for and patience with his young bride. Only after I turned 40 and was mother of three children did we go through the stage of letting me grow up. Everyone survived, and thrived, but the marriage pattern was already set, and I had no argument with the rather ordinary routine of our household.

    Now I am 78, and trying to deal with all the things I never learned to do. I always knew how capable Ken had always been, but I was content knowing I, too, handled my end of things making him proud of me. Old age sneaked up on me silently, and it was easy to notice a change in his behavior but it was easier to put my head in the sand rather than be proactive. But in a few short years I had to accept the reality that he was not getting over it. He had been retired for 23 years and we enjoyed those first 20 years of travel around the US and cruising in other parts of the world we wanted to see. My wake up call was the first time I tossed an inviting travel brochure in the wastebasket without looking at it. The alarm bell rang and I had to recognize that I knew we would not go on those adventures again because “Ken can’t do all these things anymore, and I don’t want to go so far away if “I’m in charge.” Our children seemed relieved when I talked to them with a reality they had hoped to hear. Our doctor sent us to a neurologist who did all the tests, MRI’s which confirmed my fears although even though he put Ken on the proper medicine, and told him he couldn’t drive anymore, no one ever said “Alzheimer” to me. Doctor had assumed since I could discuss the situation with clarity and understanding that he didn’t think I needed to hear the word. Oh, I knew it, but since no one confirmed it, I clung silently to hoping we were going to get better. Our grown children put in unvarnished words that it was time for us to go back to Seattle to be near our two sons. We moved into an assisted living facility that had cottages on the grounds. Not fully “assisted” but perfect for minimal help. I was sure I could focus on and care for Ken for two or three more years. After one year, I reached the state you were in when you retreated to write your anguish, I had the same sense of overwhelmed loss. Your words hit every wound my heart felt. I expect being care giver for a spouse has a different feel to it, but love is love and heartache is heartache. Thank you for writing so beautifully and sharing it with others trying to chart a route on this unwelcome path. Ken has adjusted very well in his new environment, and continues the downward spiral. I do love the atmosphere where he is and it helps me leave him with fewer tears as time goes on. I don’t let the tears out until I’m back in my car alone. We had a family Thanksgiving Dinner at the home of one son and the other picked Dad up to bring him for dinner. Ken walked in the door and looked into my face and gave the biggest speech we had heard from him in several months. He said, “I know who YOU are! You are my wife and I know that I love you a whole lot.” That scene will be treasured forever by the family as we continue this rocky path together.

    • Ann Napoletan

      Marian, thank you so much for sharing your beautiful story. The Thanksgiving “gift” he gave you in his words brought tears to my eyes. I am sure that will be a memory you’ll cherish forever. It sounds as though he’s in a good place and I know from experience that does help ease the pain – just knowing that when you walk out the door, they are loved and well cared for provides some peace of mind. There are so many people who don’t even have that; it breaks my heart.

      Take care of yourself in the midst of everything. I’ll have you and your family in my prayers.

      -Ann

      • Mazhar

        Agreed Roy! It’s not just the men and women who chose to serve but also their families who spopurt them in their decision. They’re the ones who keep the fort when they go away and make sure that everything is still going. My heart goes out to the young children who don’t understand why Mommy or Daddy is always leaving. It’s a sacrifice and thank goodness we have men and women who choose to dedicate their time to fight for our freedom.

  6. Ken Christiansen

    My wife is in a similar condition: frail, demanding, unable to recall or do the most basic things and in total denial. She has compulsions: emptying ashtrays with one butt in them… getting out the dustpan and brush for small items like a fallen plant leaf, cat hair, etc.

    She is constantly talking to the cats, interrupting whatever I am doing to ask me to change the TV channel, or answer a question I’ve already answered many times, etc.

    I am sequestered in my office as I write this. A vodka bottle and a pack of cigarettes are my companions. At 82 years of age and cursed with Atrial Fibrillation and COPD, I am under constant nursing care.

    I have hired a professional caregiver to help out, but she is only here 3 hrs on weekdays.

    I know there’s nothing much I can do about it. Just wanted to share some of the misery we all feel with our loved ones slipping away, and taking us with them/

    • Ann Napoletan

      Ken, I’m so sorry. I hope you can find some time each week to get away and focus on yourself. You and your wife will be in my prayers…

      -Ann

  7. Ella

    Dear Ann, Reading your story, just want to let you know I am feeling sorry for you, what you are going thru at this time. Remember that a caregiving role is never an easy one, it’s not something we sign up for, but one we take on and just do to the best of our ability, because we love and care. It is evident by your writings that you love your mother tremendously and you have been on this journey (so not fair) together, in her corner for her at all times. God Bless You.

    I can relate to your wish list and I know it is easier said than done, but remember to not be so hard on yourself. I lost my Dear Mom, RIP, 7 years ago, and I still reflect on my performance. Given a second chance I would do a better job. My life was a train wreck at the time and I always tell myself she was taking care of me, so like her, loving and devoted to me. I love her, miss her and us.

    So, just keep doing what you’re doing for her, being there, loving her. Remember you are your mother’s daughter always, something to be so proud of forever. Thank you for sharing your story, so, I can cherish my memories. Prayers for you.

    • Ann Napoletan

      Thank you so much for your kind words, encouragement, and prayers, Ella. Coming from “someone who has been there,” they truly mean more than you can imagine. I’m so glad my story touched your heart and brought back some of your beloved memories of your own dear mother.

      -Ann

  8. Leon

    i watched this and it gives me hope to keep doing what i am doing , my wife and i took care of moethr-in-law for two and a half years till she passed and then just a year and a half later my wife came down with lung and brain cancer and now it starts all over again .It is a tough job and i have to raise my 11yr old. It is not what i wanted in life but i am glad to do it and would not want it any other way. As a caregiver we live so others can live to.

    • Ann Napoletan

      Leon – Sending you and your family many prayers. Your attitude is incredible, and that positive outlook can get you through anything. ~Ann

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