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Home›Stories›“Memory Loss” is a Different Animal than Alzheimer’s Disease

“Memory Loss” is a Different Animal than Alzheimer’s Disease

By Sissy Bowen
May 8, 2017
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Caregiving for someone with a debilitating illness is extremely difficult.  Caregiving for someone with an irreversible form of dementia, like Alzheimer’s disease, is devastating. Alzheimer’s is a progressive, degenerative disease that attacks the brain and destroys its memory, resulting in impaired thinking and behavior and, eventually, total dependence until death. 

“Memory” is the ability to keep things in one’s mind or to recall them at will. It is an ability that most of us take for granted. Like swallowing or breathing, memory is an innate characteristic of life, a given, something we don’t have to think about.

“Memory Loss” is a benign concept for most of us. We forget a phone number, a birthday, or where we put the car keys. How many times have we walked into a room and had to retrace our steps because we couldn’t remember what we went into the room for in the first place? It happens to all of us. We laugh about it and go on. Alzheimer’s disease has made the phrase “Memory Loss” a malignant reality for many.

Over a five-year span, I watched the woman who kept me from becoming a ward of the State of Illinois go from, driving her car, playing bridge two or three times a week and attending church functions, to lying in a fetal position, trying to pick the flowers off her gown and, for two years, dying from malnutrition due to her inability to remember how to chew and swallow. This is a very painful thing to witness. And it wasn’t just that she had forgotten how to eat. The disease even makes nutrients “forget” how to store in the body. Research tells me that, even if an Alzheimer’s victim eats steak and potatoes three times a day, eventually the body will shut down anyway. 

Two weeks before GaSara passed, she quit eating entirely. Her kidneys were beginning to fail, and the doctor told me tube or forced feeding was the only alternative. It was not a very difficult decision. She weighed 57 pounds, had suffered more than anyone I had ever known, and she still knew me.

Albeit it somewhat selfish, my worst fear was for the day to come — and I had tried so hard to prepare myself for what might be inevitable — when she would not know me. After speaking with her doctor, I went to see GaSara. I walked into the room, the nurses stepped back, and as GaSara saw me, her eyes widened, she got this huge smile on her face and said, “Hey!”

A nurse said, “There she is!”grandmother granddaughter fading memory Alzheimer's isolation

And GaSara said, “Yay!” and she laughed with what seemed like relief.

When the nurses told me she had just asked where Sissy was, I knew (and it meant the world to me)! She still knew me!

When the nurses left, I took GaSara’s hand and began to explain to her that she was dying and I was not going to let anyone stop her. She and I had years-before agreed that I would not let them put any tubes in her.

Over the next, countless minutes, she would look into my eyes and then look away. Sometimes I could tell she was listening. Off and on, I sensed she understood. The rest of the time, when she would look away, I felt as if she was taking it all in. I started crying. I didn’t mean to, but I couldn’t help it. 

“I love you.”  There it came. From, GaSara. Then she reached up with her decrepit, bony, tiny little hand, to wipe away my tears, forgot what she was doing, and started slapping my face as if I was a prize fighter who was getting knocked out in the third round! 

I’m laughing. I’m crying. I’m coping with the fact that I just took it upon myself to let her die. All I could do was hug her.

She was so pitiful lying there. Most of her hair had fallen out and what was left was chalky white, much like her skin, but it had this eerie grayish tone to it. Her eyes were sunken in her head. I had been with her for about an hour and, although they were priceless, she had only been able to say those, now priceless, few words.

After a few more minutes of quiet time, I said, “You know I love you don’t you?”

Without any hesitation, she exclaimed, “Yea, I know you love me, but what the hell good does it do me?”

We both burst out laughing and, for a familiar second, I thought, “There’s nothing wrong with this lady at all!” 

The thought was as brief as it was familiar.  That’s what’s so insane about coping with this disease.

I will always cherish my time with GaSara, but I will remember particularly the day I told her she could die. 

TagsbenignbreathingcrydeathdifficulteatingforgetGaSarainevitablelaughlifelossLovemalignantmalnutritionmemoryrecognitionresearchSissy
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2 comments

  1. Harriett 9 August, 2017 at 18:13 Reply

    Wow……just wow.

    Such a powerful story, and the same story of so many people.

    • Sissy Bowen 9 August, 2017 at 20:59 Reply

      Yes. Too many people have this experience! Thanks for your comment, Harriett!

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Latest Comments

  • Sissy Bowen
    on
    August 9, 2017
    Yes. Too many people have this experience! Thanks for your comment, Harriett!

    “Memory Loss” is a Different Animal than Alzheimer’s Disease

  • Harriett
    on
    August 9, 2017
    Wow......just wow. Such a powerful story, and the same story of so many people.

    “Memory Loss” is a Different Animal than Alzheimer’s Disease

  • Sissy Bowen
    on
    July 22, 2017
    As you well know Carol, we Caregivers all have our gifts and a need to give ...

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  • Carol Bradley Bursack
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    July 22, 2017
    You are such a remarkable writer, Sissy. Your stories affect dementia caregivers to the core because ...

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  • Sissy Bowen
    on
    July 20, 2017
    You're very kind, Alan! Thank you for being such a loving Caregiver, yourself! It's a journey ...

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  • Alan Brown
    on
    July 15, 2017
    Wow. You really are an excellent writer, Sissy. Thank you for sharing stories from your journey. ...

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  • Sissy Bowen
    on
    July 15, 2017
    Thanks, Susan! That means a lot!

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  • Susan Macaulay
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    July 12, 2017
    Nice piece Sissy.

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    Thank you so much, Carol for your response here and all you do to help other ...

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    Thank you, Beth, for your love and support and kindness! You're a rare friend to have. ...

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    June 5, 2017
    Thank you for sharing this. It's very helpful and insightful. You have a real gift!

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    on
    June 3, 2017
    Thank you so much, Marta! You are very sweet to say so. And thanks for your ...

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  • Marta
    on
    June 3, 2017
    What a touching, moving account of your experience, Sissy. You are a great writer!

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  • Sissy Bowen
    on
    June 1, 2017
    Wow! It's wonderful to hear from you, Angel! Thanks for all the memories! You and Bob ...

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  • Angel Logue
    on
    June 1, 2017
    Sissy.....Was thinking of you today and did a search to see if you might still be ...

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  • Sissy Bowen
    on
    May 22, 2017
    Well suster, your support and love means more to me than any other, of course. Thank ...

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  • Sissy Bowen
    on
    May 22, 2017
    Hey Bill! Thanks so much for reading my stories and sharing my website with other folks. ...

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    on
    May 22, 2017
    Hi Lisa! I had no idea you were working as a private sitter. I might have a ...

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    on
    May 18, 2017
    A favorite picture of my favorite sister and our grandmother. Sissy, the site is excellent ...

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  • Bill Boys
    on
    May 17, 2017
    Excellent article, Sissy.

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  • Lisa
    on
    May 11, 2017
    Sissy I love this webpage. I had no idea you were a caregiver also. I have ...

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    May 7, 2017
    Thank you so much, Pam! I know it's not an easy read, but I do believe ...

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  • Pam Davis
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    May 7, 2017
    Sissy, I've found the paradox of caregiving to be: every caregiver's story is different. Every caregiver's ...

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  • Sissy Bowen
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    April 30, 2017
    Thank you Jack, for coming to caregiverscompanion.org. That means a lot to me. ? I hope ...

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  • Jack Fussell
    on
    April 30, 2017
    Thank you Sissy.

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  • Sissy Bowen
    on
    April 28, 2017
    Hi Mary Ellen! Thanks so much for reading my first stories on caregiverscompanion.org and leaving such a ...

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    April 26, 2017
    Oh my god. This was me! My experience can't compare to yours in degree of difficulty, ...

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