Resistance To Care

“Resistance to care.” What a wonderfully beige turn of phrase, devoid of any of the emotional turmoil that it immediately brought to my mind. If you haven’t cared for a person with dementia, you probably can’t grok how a simple, clinical description evokes so much feeling.

I came across the phrase in this article, Polishing the Gems Who Are Alzheimer’s Patients, by Serena Gordon in HealthDay Reporter. It’s about how difficult it can be for caregivers to be able to understand, and hence deal with, the mental state of their patients.

Resistance to care.” I’m very familiar with it, and I’m one of the lucky ones: my Mom has the means to afford the care she needs. “Resistance to care” is woefully inadequate to describe the fight my Mom and I had when she needed to see a dentist. One of the worst fights I ever had with her. She was seeing a new dentist for the first time, and the dentist’s office needed some basic medical background information that neither Mom nor I knew off-hand. When I tried to contact her internist’s office for the information, Mom threw what would politely be described as a Category 10 hissy fit. She utterly refused to allow me to call the doctor’s office. Apparently the doctor’s ‘nice’ receptionist had retired, and been replaced with a ‘mean’ and ‘incapable’ one. My Mom thought that because the new secretary wasn’t as good as the old one, the doctor would have to get involved (I don’t understand by what logic my Mom came to that conclusion), and she simply would not allow me to disturb the doctor.

Oy vey. So we got into a huge shouting match. I begged, I pleaded, I got on my knees. (Really, I did.) To no avail. This was before I fully realized my Mom had Alzheimer’s. I’m pretty sure I was in denial; though to be fair I can’t really tell the difference between denial and hope in a situation like this. I’m pretty ashamed of my behavior, of being so angry with her.

Yet even after it was clear that my Mom had a serious case of Alzheimer’s, we’d get into fights. In the early days after her diagnosis, she was still pretty self-sufficient, as far as getting dressed, going to the toilet, basic stuff like that. But she would get lost in the neighborhood, dangerously fail to respect ‘don’t walk’ signs when crossing streets, and so on. Most importantly, she couldn’t competently walk her dog, who as a headstrong dog with some bad habits, required a firm hand on the leash that Mom couldn’t provide. So my siblings and I arranged for some additional dog walking services. That did not go over well!

It’s actually hard for me to remember those episodes when we fought about the dog-walking. They were so ugly and shameful I’ve done my best to forget them. Even though I had learned very quickly that anger never worked, and had switched to pleading, coaxing and begging, Mom was so excruciatingly intransigent. Ms Gordon’s article hits the bulls-eye: what was hard for me to realize that my Mom’s disease not only diminished her ability to handle walking the dog, but it also prevented her from being aware of that. A heart-attack victim knows they need to be careful exerting themselves, but an Alzheimer’s patient doesn’t know their abilities are diminishing.

In an ironic twist, my siblings and I never actually dared tell Mom she had Alzheimer’s. Practically all my life – almost as early as I can remember – Mom has been convinced she had the disease. She was pathologically afraid of it; perhaps because her father had suffered dementia, probably Alzheimer’s, and perhaps as a scientist, her sense of self was utterly intertwined with her intellect. So we dreaded even breathing the word ‘Alzheimer’s’ anywhere near her. That fear may not have been unreasonable. Many times she’d talked about committing suicide if she started to show symptoms of it. But I wonder now if it would have made any difference had we. Would she have killed herself? Unlikely, but she had an iron will; if she really wanted to, she would. Would it have made her more cooperative? I doubt it – for the same reason.

Eventually, Mom stopped being so uncooperative. My sister figured out why. As the disease progressed, Mom would have periods of relative lucidity, when she’d have a pretty good idea of why we were trying to intervene in her life. In those periods, she’d fight to reassert her control over her life. And I do mean fight. All the sharp kitchen utensils – forks, knives, scissors, and so on, had to be hidden, since Mom had been known to brandish them at the caregivers. She’d also broken a table to use the leg as a club, and tried to hit my sister with a chair! But at other times, when she was less lucid, she wouldn’t feel threatened by that loss of control, and wasn’t so combative.

Perhaps the most horrible thing about that period was catching myself feeling grateful that her disease was getting worse, since she was so much easier to deal with. I feel like I die a little inside every time I remember that.

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