Sparked by Words

Rage and Reason

Candace asks for another cookie and when denied because it’s so close to dinner time, she wails the annoying cry recognized the world over as brat syndrome. She’s two and a half years old, and her self-centered demands come with the territory of preschoolers.

James also asks for another cookie and when denied because it’s so close to dinner time, he lets off with a string of foul language demands. He’s eighty-seven years old and his unfiltered anger comes with the territory of one who suffers from Alzheimer’s disease.

Candace will grow up to become an engineer or a software developer or an astronaut. James* was a Major General in the United States military, and worked at NASA developing critical rocket defense systems. I sobbed at his memorial because I’d never gotten to know the brilliant man in his prime and only met him when the disease that eventually killed him had reduced him to behaving like a toddler.

You may think that Alzheimer’s only affects those with a low IQ, or who eat like sumo wrestlers, or who lie around on the sofa all day clicking the remote and guzzling diet sodas. It doesn’t. It’s an equal opportunity monster that drags victims from every demographic and forces them into the pit of loss of executive function. Loss of every human function. When we discuss the disease, we’re talking about traumatic brain dysfunction moving people backwards. We forget their achievements and focus on the bathroom problems, the odd clothing choice problems, the inability to communicate effectively problems. We focus on the problems because they are always front and center.

Pearl walks out of the dining room, her purse stuffed with essentials like socks, a scarf, comb and brush, and bedroom slippers. She has only taken a bite of her lunch but now stands at the reception desk of the community residence where she lives insisting that her daughter is coming to take her home. The receptionist reminds Pearl, for the fourth time (the seventh, the fourteenth) that her daughter went home after visiting in the morning. Pearl curses the receptionist, declares her daughter doesn’t love her, and wants to phone the police to complain about the service at this awful place. I ask if she’s had dessert yet. When her eyes open wide at that word, I lead her back to her seat and encourage her to take a bite of her meal, promising that she’ll have ice cream soon. She’ll be up in another minute or so, back at the front desk demanding to phone her daughter and insisting she doesn’t live at this place. I know she does – she’s my mom’s roommate.

Gladys’ hair is coiffed in a silver cap of curls, her jacket and slacks are highlighted with a string of glass art beads, her pedicured toes peak out from open front silver flats. She was a model when younger and walks with grace. A few days ago she mumbled unintelligible speech to me and I answered with pleasantries suited for any occasion. I wasn’t prepared when she quickly got up from her chair, cast me a look of fury, grabbed my coffee mug, and tried to throw it at me. I managed to hold on to the mug so only a tiny bit of the hot brew splashed on another resident. Her husband has told me she owned her own business for more than two decades and made decisions that her employees complied with.

Melvin wants to go to the bank. He’s concerned about his taxes and shows me his briefcase. Inside are a blank yellow legal pad and two pens. He asks if I know the bus schedule so he can be on time. I take his arm and lead him to the table where a jigsaw puzzle is half put together. We sit down and find a corner piece and two other pieces that fit together. When I leave five minutes later, he’s peering intently at the puzzle and holding pieces in each hand, trying to figure out where they fit. His briefcase sits on the chair next to him, his taxes forgotten. He used to be a high school math teacher much beloved by his students.

This is the everyday world of Alzheimer’s sufferers. It’s a realm of behavioral inconsistencies – from intelligence to gibberish, from reason to meltdown, from joy to confusion, anger, and rage. Those of us who love them, family members and caregivers, struggle to engage and care for them. We try not to raise hackles, to antagonize, to remind them that they should “know better.” It’s we who must know better. We sons and daughters, husbands and wives, have become their parents and bosses. We hate the job.

I will always remember James, the man who was involved in our space program at NASA. The man who had become a child by the time I met him but who always greeted me with a smile. I remember all of the men and women who once were someone else.

 

*James, like all the residents whose lives I’ve presented here, is based on a real person whose true identity I will not reveal.

 

Note: I’ve written a novel, Where Did Mama Go? about the devastation Alzheimer’s inflicts on families. It’s in the process of being edited, and then I’ll start querying for an agent to represent my work. My credentials for writing this story are sixteen years of assisting my mom through the labyrinth of this illness.

 

 

Photo of pier and ocean courtesy CCO Creative Commons, not requiring attribution

 

 

 

Comments on: "Rage and Reason" (50)

  1. Sharon, a heartbreaking post describing the cruelty of this disease. Your stamina and compassion are extraordinary and I feel for you, your mother and the other residents. Through the trauma, you remember the person lost – not an easy task as the weight of repetition, of dealing with basic every day ​takes its toll on you and the staff. Your book will shine a light for others in similar situations, giving strength, courage​ and understanding when one’s world is in humungous upheaval. Best of luck with finding an agent for ‘Where Did Mama Go?’ – it needs to be published. hugs xxxx

    Liked by 2 people

  2. Sharon, your post is so wonderfully clear and direct and taking an angle I do sympathise with. You often hear about the sacrifice of the careers ( I do realise they are there ) , often forgotten is the respect for the people the sufferer were. Intelligent and vibrant.

    I will look out for your book Sharon and wish you strength in your loving care.
    Miriam

    Liked by 1 person

    • Miriam, you’re right about the people who give up their careers to care for someone whose Alzheimer’s claim has advanced so much that they need full time care. Two lives upended. It’s one of the hardest things to grasp when you realize that a capable, brilliant adult can no longer do every day tasks without assistance.

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  3. A beautiful, yet heartbreaking, post. You’ve really captured the cruelty of this ‘equal opportunity monster’.

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  4. It takes a special person to work in these residential living facilities. I met many of them through you and your book. Your characters are my image of who I’d want around twere I in those circumstances.

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  5. This read broke my heart. I know it is a sensitive subject for you. As Annika said, it is a cruel disease. Good look with the manuscript. I wish you all the success in the world.

    As for James, he should have barked for the cookie as if it were an order. Maybe he would have had more success.

    Liked by 2 people

  6. Jenna Barwin said:

    Very touching, Shari. Your words not only remind us to be patient with our older friends and relatives, but to talk with the younger ones about how we want to be treated if this terrible disease strikes us.

    And you are a saint for the patience you have when visiting them. I wish you all the best with your book!

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    • Thank you so much, Jenna. I really appreciate the support. You’re right about teaching younger generations, including children, how to be tolerant and compassionate to older people. (The other way around too!)

      Liked by 1 person

  7. I imagine your novel is going to be amazing, because this post is so achingly real and well-written that we can all feel the pain of those who are afflicted and the pain of those–like you–who care for these people. What a horrible, cruel disease.

    Liked by 1 person

  8. I need to come back and read this again when I have more time, but just wanted to say quickly that you really nailed it. Pearl sounds exactly like my mom in her last two years. So very sad.
    Thank you for writing about this difficult subject, Sharon.

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    • Thank you, Betty, for confirmation of this condition. It’s hard to convince people who don’t have personal contact with an Alzheimer’s victim that it’s really this way. The stories are based on real people, real incidents, though two folks are composites of more than one person.

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      • I saw it all at the home where my mom lived and you’ve accurately described all the many manifestations of Alzheimer’s. Thank you again, Sharon, for giving voice to this awful disease. I pray for the day they’ll have better treatment, and possibly a vaccine to prevent it. Probably won’t happen for our generation but hopefully for future ones.

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      • The research looks promising but it is still years away from resulting in reduction of symptoms, cure, or prevention. It won’t come in time to help my mom and probably not me, but sincerely hoping they make the progress to protect my kids and grandkids.

        Liked by 1 person

  9. You often times leave me without the words. I can use your post to better equip myself for others. Sending hugs.

    Liked by 1 person

  10. Mental illness is so heartbreaking and you write about it with such sensitivity.

    As you know, we are dealing with a young girl whose chances for great intellectual success are quite slim. The mourning on our side comes from knowing that this girl’s shattered mind most likely will never be fully healed. A normal life is not in the picture for her.

    At either end of life, shattered minds seem so tragic …

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    • Adrienne, your comment is so very heartbreaking. Your girl’s chances are eclipsed not because of something she was born with but because of the horrendous abuse she suffered even before she was born. My mom had a full and rich life for many years. Your girl’s future is still unknown. Your love for her will make a huge difference. She’s already showing amazing progress because of living with you (by the posts I’ve read so far) and I wish her much more progress and healing. Love to all of you. (I’m sobbing here, thinking of her.)

      Liked by 1 person

  11. Ah, this is so sad to read but your words tell their stories with elegance. I can’t imagine having one thought in my head that feels coherent but comes out verbally as disjointed and irrelevant. I heard that a lot when I worked in a convalescent home in my 20s. I likened it to waking up from a dream, talking out loud as if in the dream, then once awake, you realize how ridiculous it sounds. (yes, I have awakened talking in my sleep on occasion).

    Liked by 1 person

    • I think you’re right about the disorientation, Terri. Sometimes the best I can do is to just smile at these folks, nod my head, and gently pat their hands to let them know I’m listening. But I’m not sure they feel their thoughts are irrelevant as much as they’re frustrated that we lack the ability to understand them. I suspect they believe the fault is ours, not theirs. Folks in early stages of Alzheimer’s are aware that their memories are unreliable, even more tragic because they do sense the advance of the disease.

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  12. You are a beacon of light!

    Liked by 1 person

  13. I know it’s difficult to engage with people who have Alzheimer’s. I did it twice each week when I lived in Michigan and volunteered at the local nursing home. Yet, somehow, I felt fulfilled by the help I gave during those years. Many of the residents there were taking an antidepressive, which made my efforts with them easier. They would be coherent enough that sometimes they would remember me from my last visit and ask me for help in some task they wanted to complete.

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    • What a wonderful thing you did, Glynis. You made a difference to them, even if they couldn’t always express what they felt. One of the biggest emotions very elderly people feel is loneliness. They long for someone to stay with them, just that one on one that’s so necessary for all of us to thrive. Maybe you’ll consider writing about your experience on your blog. (I know you’re taking off a month.)

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  14. Shari,
    You are such a wonderful word smith and this post leaves me speechless. You capture the heartbreak, humanity and wonder of it all. I love you my friend.

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  15. The line that stands out for me is “I remember all of the men and women who once were someone else.” It makes me want to cry for their lost identity. Sharon you are a beautiful person caring as you do for your Mum but also all the other residents. I would hazard a guess that there a quite a number of children who simply don’t (or can’t because they can’t deal with the new reality) visit their parent very often. Your book is going to offer great insights into the illness and ways of caring. I’m sad you had cause to write it but I feel it will help many people and wish you all the best with publishing.

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    • I long for the moment when there’s a cure or prevention for this awful disease. In the meantime, we need to learn how to help the victims live with their illness. And that means helping their families.

      Liked by 1 person

      • We listened to something the other day on the radio and there is hope that they have found a very early indicator of dementia – losing your sense of smell and taste. That is worrying Roger a bit as he has recently been complaining that food no longer tastes the same. They are hopeful with further tests that if this is so they will be able to start some form of treatment very early and halt the progression of the disease. Who knows – it used to be cooking in aluminum saucepans.
        You’re caring is compassionate and respectful and I have no doubt that it makes those you come across have moments of happiness.

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      • I’ve read the same about taste and smell but I wouldn’t begin to panic. The link has not been proven, it’s an avenue to explore. We learn more and more about what to do and what not to do to protect our health but it’s always advice given decades too late. Eating well and exercising regularly are the most healthy lifestyles to follow, no matter your age.

        Liked by 1 person

  16. Beautifully written, Sharon, there´s so much heart in your words, it really takes my breath away… I wish you so much luck with your book and to find a great editor!
    When my mum was in hospital last November, she shared a room with patients who were over 90 and suffering from post-surgery pneumonia – their disorientation and confusion was heart-breaking to see, even on my short visits there. Of course, this isn´t comparable to Alzheimer´s but I imagine it to be just like this. Which is why I look forward to your planned post about what things they´re still capable of doing.

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    • It’s very difficult to be in a community of any size when people are suffering as you describe from disorientation. The range of behaviors is stressful to witness, and it must have been tough for your mum while she recuperated as well as for you. She was lucky you visited. It’s lovely to read on your blog about how close you are with your mum. I hope she’s home and healthy now.

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      • My mum´s back home and on her way to healing, thank you, Sharon! She´s still in a lot of pain but can at least use her arm to some extent which is a huge plus.

        What troubled me most when I witnessed the people suffering in the hospital, was how terrible they were treated by the staff. They were shouted at and belittled – it was awful, I felt so ashamed for my fellow human beings to behave like that. 😦 I know, their primary job was simply to take care of their physical well-being (which truth be told they didn´t do very well, either!) but even if they were not trained to handle these kinds of patients, it´s just not justifiable to treat any human being like they did.

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      • What a horrible experience, I’m so sorry to read this. Have you thought of filing a complaint?
        My mom has been treated like a princess at every hospital visit. I expect this but I don’t have to say anything – it’s standard procedure.

        Liked by 1 person

      • Back then I didn’t because I was too preoccupied with my mum and getting her out there as fast as possible, but now I am thinking I should – thanks to you!
        So glad to hear that your mum has been treated like a princess at every hospital visit, gives me hope that there are still some decent folks. Take care!

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      • The key is that people shouldn’t even be in this kind of career unless they have a passion for it. Of course, it’s very hard for families to determine whether someone is following a calling or just doing a job.

        Liked by 1 person

  17. Sharon, that was a beautiful tribute to the human cost of Alzheimers. Thank you for being on the front lines–grabbing hold of your coffee cup and keeping a grip on your feelings at the same time. Any claims humans might have to nobility come from how we treat those who are unable to care for themselves.

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  18. […] people I know.  On her Ink Flare blog she often posts about her journey with her mother who has Alzheimer’s disease.  Shari’s poignant and  personal account has made me all the more aware of research and […]

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