Sparked by Words

I Suffer from Alzheimer’s

Ростислав Иванович Фелицин (не позднее 1820-х годов-1882) – Печальное известие (Чтение письма) (1856)

I drive home sobbing from the residence where my mother lives. Sometimes instead I rant about the injustice of a disease that kills a person before their body is dead, and kills their supporting family in fragments that leave us bleeding. Every once in a while I catch the glance of the driver next to me, shaking their head at my inattentive driving skills. I’m going to cause an accident if I don’t pay better attention. I know but still I cry or scream.

The stricken want to go home. To the house in Santa Monica or Chicago or Trenton where mommy and daddy live. They wait for their husband to pick them up except he died fifteen years ago. They must meet the school bus and walk the children from the stop even if their children have grandchildren. It’s time to make dinner though they haven’t cooked in over ten years because the last time they poured a bottle of soda into the spaghetti sauce and left the gas burner on overnight. They want to drive their car home. It’s parked outside though it isn’t, they have not driven or had a license for more than a dozen years, and no one will let them leave the locked residence where they now live. Still, they demand to go home because this place is not where they live, and you are a criminal for keeping them locked up. You no good terrible husband – wife – son – daughter. If you loved them, you would obey their demands to go home. You must not love them.

They can’t remember anything that is not a memory less than thirty or fifty years old. Certainly nothing that happened ten minutes ago. Many have no memories at all, which is why they don’t eat when they’re hungry (they don’t recognize hunger) or overeat when they aren’t (they can’t recall having eaten five minutes ago) or devour packets of sugar, pour tablespoons of salt on their food, chew on napkins, use a knife in place of a fork, fingers for their soup, or shove an entire slice of cake in their mouths as if it’s one bite. Loss of memory and confusion over engaging in appropriate daily activities are two sides of this damaging illness.

Daytime activities include playing Bingo and Wheel of Fortune, ping pong, chair exercise, singing, dancing, putting together jig saw puzzles, making collages, spreading paint, glitter, and glue in art class, watching the birds in the garden, dozing, and just relaxing. Occasionally they laugh. Some activities earn pretend money. They shop at the residence store where a few “dollars” will buy magazines, jewelry, sports hats, note cards, scarves, crossword puzzle books, gloves, wallets, socks, handkerchiefs, photo frames, pens, sunglasses, playing cards, and snacks like granola bars, cookies, crackers, or miniature candy bars. The most expensive items are the snacks because it prevents them from over eating junk “food.” Some of the residents walk. Walk and walk and walk and walk and walk. Yes, it is like that for some. They cannot sit or stay put for more than a few minutes because they have important things to do, places to go, people waiting for them. They are busy with activities.

They converse though it’s difficult for me to follow muttered conversations, rambling words, or disconnected thoughts. They smile at compliments and say they love you. They pause when you talk to them, nod at your suggestions to get out of the hot sun, or to watch the day’s entertainer. Then they ignore your words. You don’t speak their language either.

We will not discuss bathroom behaviors except to say you must imagine a two-year-old in the body of an eighty-year-old. We will not describe the stubborn and angry refusal to “freshen up.” We will attempt to forget the humiliation of what is disgusting. They have forgotten soap. Being fastidious. And being clean. But I promised: we will not discuss.

You thought you knew Alzheimer’s disease from the commercials, you who do not suffer. I’m not making fun of you or casting aspersions on your vision or curses on your lives. They are not like those people in the pharmaceutical ads, smiling and agreeable, ready to go for a ride to the park for a picnic or to the doctor’s for a check-up. That’s a ten second view of this disease, and you are forgiven for believing it’s the whole story. How would you know? May you never know otherwise.

When it’s time for me to leave where my mother lives to go to work, to go home, to meet appointments or obligations, I’m overwhelmed with guilt. The guilt weighs me down so I can’t lift my feet without stumbling. The guilt in my gut demands to be fed with sugar and carbs, the garbage that savages my diet and my health. For friends, the guilt in their gut leaves them unable to eat anything at all, and their self imposed fasts savage their diet and their health. We all endure bouts of anxiety, so leaving means we really do not leave – we take our ill loved ones with us. They accompany us throughout our day. They sleep at the assisted care residences but they sleep also in our dreams, our nightmares, and when we cannot sleep for worrying. Hours and hours of sleepless nights, and days of exhaustion to follow.

I do not have Alzheimer’s disease but my mother does. Therefore I also suffer. Now you know why I drive home sobbing.

 

*Painting Sad News, 1856, by Rostislav Felitsin

*The official position taken by the Wikimedia Foundation is that “faithful reproductions of two-dimensional public domain works of art are public domain“.

This work is in the public domain in its country of origin and other countries and areas where the copyright term is the author’s life plus 100 years or less.

This photographic reproduction is therefore also considered to be in the public domain in the United States.

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Comments on: "I Suffer from Alzheimer’s" (50)

  1. Sharon, I have never read such a clear and impassioned account of life with Alzheimer’s and its effect on the people who love the suffering one.
    Every word you’ve written has touched me deeply and I understand your tears. It is terrible when the brain goes before the body. The suffering is so manifold.

    Bless you and hug
    Miriam

    Liked by 3 people

  2. When dealing with mental illness I think the worst part is the guilt (and sometimes for me the lack of energy to feel guilt) for the frustration and anger that builds up when dealing with a person being irrational. I can understand the diagnosis and realize the sick person isn’t doing things on purpose–but in moments of weakness it’s hard to cope.

    I can’t imagine how hard it is to be in your spot with someone you’ve known and loved your whole life. Sending prayers. Such powerful writing.

    Love,
    A

    Liked by 1 person

    • Very true, Adrienne – I fall through the floor when my own hurts get triggered by some nasty thing she says to me – all the old insecurities flare. Thank you for the prayers. I know they’re for me and for my mom.

      Liked by 1 person

  3. Is she happy though? Does she think her life is OK, just doesn’t know it isn’t?

    Liked by 1 person

    • It’s hard to tell what anyone with this disease thinks. I don’t mean that lightly, but true thinking requires reflection and that requires memory. I don’t believe they’re capable. So we all guess. Sometimes she appears content, other times she is very agitated. I try to make sure my mom is comfortable, but her comments are often disconnected to what’s going on around her. She’s not unusual in her behavior among other Alzheimer’s sufferers. And we who stand by and watch are not unusual in our inability to guess. It’s why I call this the most heartless disease. Yet, I know there are worse things that make people suffer.

      Liked by 3 people

  4. Yes. I know and walk the same path. What truly gets me through this life challenge are “The Four Agreements” … four sentences by R. M. Ruiz from one of his books. If you can’t find this, just tell me. I think you already follow them. Smiles …

    Liked by 1 person

    • Bonnie, from the conscientious poetry you write, I’m not surprised you follow this humane philosophy. I’m aware of the book and the general concepts Ruiz promotes – being in the world with a small footprint for demand and a large one for compassion. At least that’s how I grasp what I’ve read on line. However, I’ve never read the book. Now I realize I should. Thanks for the suggestion. And my heart goes out to you for your struggles.

      Like

  5. I am piggybacking Jacqui’s comment. Praying your mother finds contentment in her day. My heart goes out to you and the daily mourning you have traveling through your soul. I believe you miss your bond and who, my friend, wouldn’t. Sending so many hugs today. You are loved, Shari.

    Liked by 1 person

  6. Oh, Sharon, – this could’ve been written by me two years ago. You’ve described the horror of it precisely. Those who haven’t been around a loved one with Alzheimer’s from the beginning to the end can’t possibly know what it’s like. And as you say, it’s not just a loss of memory. My mom suffered from hallucinations, anxiety, frustrated anger at not being able to “go home”, trying to break a window trying to “escape” her “prison”…. She was in a constant state of being in a nightmare that she couldn’t wake up from. And there’s nothing we can say or do to help them. Meanwhile, family members become paranoid fearing they too will end up with the disease someday…. Yes, it affects us all. Thank you for writing and posting this.

    Liked by 2 people

    • Betty, you’ve identified some of the most persistent characteristics of a person who suffers from Alzheimer’s. I witness the same behaviors every day and sometimes try to distract them by saying something kind or trying to get them to participate in an activity. But whatever comfort I’m able to bring, it doesn’t last, and they’re plunged again into despair. The worst is worrying that I will get this illness and that my family will be forced to care for me.

      Liked by 1 person

      • You’re right, Sharon. Any comfort we give them doesn’t last long, and eventually they might reach a point where they lash out at any attempts to help them. My mom was such a wonderful woman with a great sense of humor. Very intelligent, social, with many friends. Everyone loved her. But she became a different person… I can’t even describe it but I know that you know what I mean.
        And yes, my worst fear too is the thought of ending up like that and burdening my family.
        Thank you again for writing about the subject. Hopefully research will one day have a cure. Or at least a vaccine.

        Like

      • I’m so sorry about how Alzheimer’s affected your mom. It’s the different emergent personality that bludgeons us, as though a vestigial monster lives in their marrow. It makes me wonder what creature lurks inside me, though I don’t want to find out. You are so right about the need for effective drugs and though I know about some of the research, it isn’t coming fast enough. Thanks for your insight, Betty.

        Like

      • Each case does seem to be different. In my mom’s case it seemed to eventually deteriorate her brain to the point where the primordial section in the brain stem is predominant – and “fight or flight” was about all that’s left. (25 years ago when I was under anaesthetic for an endoscopy I kicked the doctor and pushed away the nurses – they had to call for help to hold me down! Of course I had no memory of it and was totally embarrassed when my husband told me. With Alzheimer’s, it might be a similar experience. Only the brain isn’t just temporarily asleep, it’s permanently damaged.
        Anyway, it does seem that “vestigial monster” is buried in all of us. That primitive part of ourselves from which we evolved…. In Alzheimer’s the victim sometimes becomes like an injured pet who bites his master. (Or like someone under anaesthetic who kicks their doctor! There’s an eerie parallel there….)
        Take care of yourself. I admire you for the volunteer work you do, and your love and compassion. And patience. ❤️

        Like

      • You’re right, Betty, the last human evidence. The fight or flight reaction is one of the last behaviors that seems to remain. I see this all the time from so many residents. Thank you for your understanding – it means a lot to get this kind of support.

        Like

  7. Such an accurate account of life with Alzheimer’s. I understand and feel your anxiety and anguish. Hubby’s Aunt Esther lived with us for eight years. Alzheimer’s attacked her about four years into that. At age 97 and after nearly burning down the house, she moved into demented aged care.

    Liked by 2 people

    • You and John are fortunate to have survived your aunt’s dangerous actions, even though she didn’t mean to cause such stress. It must have been devastating for you and her, but you should be at peace with yourselves in knowing how compassionately you cared for her.

      Liked by 1 person

  8. Sharon, this is the most heartfelt post I’ve read and it touches me to the core. The bewildering array of emotions, confusion is captured as you swing back and forth…from what they think is and what truly is now…your sadness is overwhelming and I just want to say, stop the car, for a while at least. Be safe, yourself. I never pretend I even know a little of having someone close suffering from such a debilitating life and soul destroying disease…my heart aches for you, goes out to you. hugs xx

    Liked by 2 people

    • Thank you, Annika. One of my earliest situations was feeling I was so alone in this awful journey. Over the years, I’ve learned that many other family members have gone through similar, even identical experiences. I’m hoping my articles will touch those who feel alone as they try to help their stricken loved ones.

      In more recent years, I’ve learned how to calm myself before I start driving.

      Liked by 2 people

  9. I did not have to witness my father going through. He was three states away. However, when I lived on the Upper Penisula of Michigan, I was volunteering at a nursing home two days a week. I was one of those who sat with the clients during Bingo helping them find where their chips should be placed. I was the one holding the elderly man’s hand as he weeped for his bride who passed on several years ago, yet, he was crying because he thought his wife had forgotten him.

    I should get back into the volunteer work here in Tennessee. I use the excuse of no transportation but that will be changing in the middle of November.

    Liked by 1 person

    • Some of the most rewarding things I’ve done in the last ten years have been to volunteer. I started doing small things because I felt I was helping those in need. I’ve discovered that I get so much out of these opportunities – it feels like I’m the one being assisted.

      Like

  10. I pressed like, not because I like what this post represents, but for your courage to share your heart along with a gritty look at Alzheimers. Both my 76 yr old mom and my 85 yr old mom in law have severe dementia associated with aging. My mom is in a nursing home because she can’t walk any more , more physical issues than mental and needs constant supervision. Systemic lupus caused all of this. Strokes caused my mil to be in the state she’s in, living at home with my brother in law and wife. I worked in a convalescent home for a year and saw first hand and on a daily basis, the Alzheimers-afflicted patients and much of what you describe. My heart aches for you and the families of the afflicted.

    Liked by 2 people

    • Terri, thank you for sharing your family’s story. The need for creating programs to serve the elderly in substantial and compassionate ways – not to warehouse them – is huge and growing. The more who know and share, the more likely people will step up. Thanks for your support.

      I do know what you mean by the “like” button – I don’t use it much anymore.

      Like

  11. Sharon my heart goes out to you and your Mum. I cannot offer any solace apart from a cyber hug and an ear that will listen. Lots of love.

    Liked by 1 person

  12. Denzil - Life Sentences said:

    O how my heart aches

    Liked by 1 person

  13. Shari,
    What can I say? What can anyone say who has not personally experienced the journey you have been on. Alzheimer’s is indeed your disease too as I believe you are the one who suffers not your Mom.
    You are a devoted, loving and compassionate daughter and friend – your words describe and your behavior speaks.

    Liked by 2 people

    • My mom also suffers, though perhaps not the way that you and I would. She is often unhappy even if confused, and that’s an awful way to feel in your last years. Judy, thanks for seeing some good in me.

      Like

      • The good in you is obvious and not hard to see.

        The only good for your Mom is if she is suffering her mind is rarely holding the memory. You, on the other hand, remember. I guess I think that pain is in the present moment and suffering is not bound by time . . . or is it the other way around? Not sure.

        What I am sure of is that you are a blessing for your Mom.

        Like

      • I think you’re right about pain and suffering, but I know my mom is sometimes in enduring pain but can’t explain where she hurts. It’s a language and communication problem but what she feels may be excruciating. If her pain is fleeting and rare, she can recover quickly. It’s the enduring pain that I worry about. While she may not remember what she felt an hour ago, if she still hurts, then she is miserable. The proof shows in lots of ways that we try to understand and mitigate. Think about your fibro pain. It isn’t because you hurt yesterday that your misery is so great – it’s because the pain is ongoing today. My mom is just as present in her pain as you are in yours.

        Thanks for your loving support, Judy.

        Like

  14. Oh dear Sharon, I feel deeply touched by your words. My heart goes out to you and your mother. Warm greetings from the North. x

    Liked by 1 person

  15. Dear Sharon, I’m so sorry. My rosary today will be for you and your mother. I don’t know what else to do. I feel an echo of your pain because I take communion to those in convalescent homes, and even that is overwhelming at times. Please don’t hesitate to contact me (sidebar on my blog) if there’s anything else I can do. Even if you just need someone to talk to.

    Liked by 1 person

    • That is so very compassionate, Cathleen. I have a support system and have come to terms with this illness and how much it’s affected my mother. But another prayer goes a long way. Thank you for your offer of solace.

      Liked by 1 person

  16. We are all the family of humanity. Your post draws us all the closer. Thanks for sharing. I wish I could take away all your feelings of guilt. It is the most caring

    Like

  17. Once again my finger tapped reply too soon. Was just trying to say that when we care, we’re most likely to suffer guilt pangs. Your mom and the rest of your family are fortunate to have you ❤️

    Like

  18. Sharon, Your visits. your face, your voice really are a comfort to her. And you’re someone to hold her hand as she weathers this terrible disease. I hope someone is holding your hand and telling you that you are a good daughter. Clare

    Like

    • Clare, you are kind to say this. My mom passed away on March 30. Her last year was grueling and I’m so grateful she is no longer in pain. If you’d like to know more, I talked about her final moments in this post:
      https://sharonboninpratt.wordpress.com/2018/05/08/coming-back/

      Liked by 1 person

      • Sharon, I’ve not been very faithful to blogging this past year and wasn’t aware of your mother’s passing. I am so sorry. This is a cruel disease and I have other bloggers who write of their struggles as they go through this with loved ones. I can only hope a cure will be found soon. I am going to your post now. Clare

        Like

      • Please make no apologies, Clare. I understand.

        Sadly, I think they’re a very long way from a cure, from truly effective medication to impede the progress of the disease, and from what we most want: a vaccine to prevent it. Research project and clinical trials are simply failing as the human brain is extraordinarily complex and the disease nearly impossible to predict.

        Liked by 1 person

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