Do Not Go Gentle: Alzheimer’s Disease

I still getElizabeth Reid 1998 angry when I recall my gran’s battle with Alzheimer’s. It is a humiliating disease, gradually stripping away the dignity of our loved ones.

My gran was diagnosed when she was 78 after the family doctor suggested a dementia assessment. She’s fine, I thought, sometimes she just forgets to turn off the stove.

Two health care workers came to our home for the assessment and proceeded to treat my gran like a child. “Now Elizabeth, can you move the hands on this clock face to show a time of 4 o’clock?” “I’d like you to stand up now, Elizabeth, and hold your arms out to the side.”

I wanted to stand up for her, to tell them to stop being so patronizing, but by the end of the assessment it was clear that my gran wasn’t doing well. When did she forget how to tell time? Why couldn’t she differentiate her right hand from her left?

We made the very difficult decision to care for my gran at home. Each day I watched her lose another piece of herself and gradually revert to her childhood. She forgot who I was early on. I was just a young woman who helped her to dress or eat or bathe.

It shames me to admit that some days I hated her. She would put her clothes on inside out after we already spent an hour dressing properly in the morning or she would complain that her clothes were too tight and try to cut them up if she managed to find the scissors. It felt like she was being difficult on purpose.

Sometimes I hurt so deeply for her and what she was suffering. She couldn’t always control her bowels and would cry if she didn’t make it to the bathroom in time. She lived in a daze of dressing, eating, watching television, and sleeping. She had no quality of life.

After six years at home, the level of care my gran required had increased and she was placed in an Alzheimer’s care facility. I broke down the day we moved her in, although she seemed to settle in well, making friends with a woman from Wales and having an opportunity to engage in far more activities than she had at home. It still felt like a prison when we left her there.

Time passed and the disease continued to advance. As part of a university study, we reviewed scans of her brain gradually dying—each scan would show another dark spot, another piece of my gran blinking out like a star.

Eventually her physical health had declined to the point that she had to be transferred to a nursing care facility. The doctors and nurses warn you early on about the final stages of the disease, when the patient can no longer eat and a decision has to be made about a feeding tube, but I still wasn’t prepared. Hadn’t she suffered enough? Now her body was giving out?

The nursing facility was a riot of smells: sickness, disinfectant, death. I remember a woman in a wheelchair and slippers who would shuffle herself up and down the hallways as if to say, “Ha, as long as I’m moving you can’t take me.” She was lucky in a way. My gran was confined to her bed by then, crying out a hoarse and repetitive refrain, “What am I to do now?”

I dreaded that question. The nurses kept her door shut because she was so loud and I hated them for it, but I also understood. I couldn’t wait to get away either.

In 2008, I wrote a non-fiction piece for The Voice Magazine about this phase of the disease. At the time I was inexplicably embarrassed by my gran’s behaviour, but I later realized I was just afraid:

“Quietly and unassumingly, [my gran] fought her way through a life of hardship and pain. Now she is fighting death with a loudness that is startling, as if she has finally found her voice after all these years. She shouts and questions. She makes her presence known…

Perhaps that is why the nurses shut the door and why we all want my grandmother to stay quiet. When confronted with her refrain, we realize there are no conclusive answers. Instead of encouraging her rage against the coming night, we try to hide or soothe it away.”

I want to believe she was fighting until the end and not that she was simply in extreme mental and physical distress. I want to believe that she took back part of the dignity that was stolen from her by the disease.

My gran died not long after I wrote the article. I miss her every day.

© Jennifer Bertrand, 2014. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given with appropriate and specific direction to the original content.

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