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!”
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.