I’m not a professional Alzheimer’s caregiver. I’m a grandson. I’ve been recognized for my work in taking care for my grandmother at a home health conference, but I’ve never formally studied the disease. I’ve just studied my grandmother. Through this blog, I’ll be sharing some of what I’ve learned, and what others have learned, about how to face and fight Alzheimer’s disease. My grandmother died in 2006 in her early nineties. We could have done much better for her. You can read more about this blog on our About page.
During the two years that I lived with my 90-year-old grandmother and helped her with her Alzheimer’s, I had to explain her condition to many healthcare workers, respite workers, and well-meaning relatives. I wrote pages and pages of instructions. And what were in those instructions? Of course, I explained her routines and habits, suggesting how to make her feel more comfortable. Like many elderly Alzheimer’s patients, she also suffered from blindness, deafness and arthritis, so she was challenged, as they say.
But what was the most important instruction I longed to give? Just look at her. Don’t look through her. Don’t look past her. Don’t pigeonhole her and walk away. She isn’t just a body in a hospital bed. The accomplishments of her life haven’t vanished just because part of her mind has. She hasn’t stopped being a person worthy of respect.
But usually, even professionals would assume that because she wasn’t saying much, she couldn’t say much. (She wasn’t a morning person anymore.) It didn’t occur to them that maybe the reason she wasn’t answering their questions was because she couldn’t hear them. (She hated wearing her hearing aid.) So they treated her as if she were a comatose invalid instead of a Southern lady who liked to talk about her family and walk around the block.
In other words, they were wrong about her. They weren’t paying enough attention.
The day of her first stroke, which she spent in bed, we noticed that the hospital staff had given her a special wristband, listing all of the life-saving measures that the staff were prohibited from giving her. It included fluids. My uncle politely requested that she not be dehydrated to death, and after a few hours, they brought in an IV. I think she was partly too embarrassed and angry with us for bringing her to the hospital in the first place, so she was holding her tongue. The next day, she was saying, “I’m willing to do anything that’s necessary so I can go home.” They were never sure they could find the brain damage, though she had trouble perceiving things on her left side, so after some rehab, she was back home and doing pretty much what she was doing before. They hadn’t given her enough exercise in the hospital (after all, how much exercise do you expect a 90-year-old lady to need?), so it took a while before she could walk around the block again.
True, if I had walked by her hospital bed on the first day, not knowing her, I might have assumed that she was in a coma or about to die. But I would have been wrong. If my uncle hadn’t intervened, she would have died, sure enough. Most people die when fluids are withheld from them. But who she really was, and what she was capable of doing – that wasn’t visible to the casual observer. Even brain scans couldn’t show that.
One of my favorite lines from C.S. Lewis’ novel That Hideous Strength quotes a university professor, “I happen to think you can’t study people. You can only get to know them.” Since Alzheimer’s is a disease, doctors think they know something about it. But it centers on the human mind, and nobody really knows much about that.