Mom had gone through two caregiver agencies and was on the third one. She discontinued the first agency because they changed policy to a minimum 4-hour shift rather than 2. She didn’t want to pay for extra time that was not needed. She was already paying for almost 36 hours a week of caregiving at $20+ an hour. The new agency, however, had a turnover issue. They also had a no-show ratio that was painful at best. In the 18 initial days of using the agency, we had 20 or more caregivers. At least 3 did not even show for their first shift at the house. I am not exaggerating. I had a spiral notebook so I could help mom keep track of who was coming each night. My mother was furious. After all, she had to TRAIN these new caregivers what to do each time. Her pet peeve was that they did not know how to do what was needed and when it needed to be done. What’s worse, she said they weren’t cleaning dad properly. Most wouldn’t even try to shave him. There were many who did not put things away in the places they belonged. It could be the wrong drawer for a kitchen utensil, or the wrong area of the closet. These mistakes were not well tolerated. Mom continued to tell them to leave the items they knew nothing about out on the counter or bed so she could put them away herself.
I couldn’t help but ask myself what the heck was the real issue here? The only issue that seemed relevant to me was the part about not cleaning dad. Not even neglecting to shave him with the assorted handheld electric and disposable razor arsenal we assembled (and despite his protests and cursing, which seemed to be an underlying issue), bothered me. Bottom line is, she did not want him to appear unkempt, like she wasn’t taking good care of him. After all, his behavior was a reflection on her.
There we are. His behavior was a reflection on her. And if his behavior wasn’t appropriate, someone MUST be doing something wrong. But it didn’t seem to me to be human error or neglect. The caregivers were trying, they just weren’t always successful in convincing a retired colonel with bone on bone back pain and Vascular Dementia that he needed to be clean-shaven or else. And then there was the issue at night. He was visibly agitated when it came to getting him changed for bed. He told mom he had always hated it. He started complaining saying ‘I’m tired of all these women” and asking mom “Why can’t we just get rid of them?” Mom replied with “Who is going to get you changed up?” And dad said, “We will” and mom replied she needed help. Dad even went so far as to say he wanted to go to bed with his clothes on. Why did he need to wear pajamas anyway?
I saw a pattern. The only time he became combative (and I mean trying to hit, squeezing an arm, and a bit later, trying to bite!) was when changing at night. I had lots suggestions. He hates to be cold. Why not put the space heater in there and warm up the room so he’s not so cold? I hate changing up too after the thermostat has been turned down to 64 degrees at my husband’s insistence for an arctic sleeping environment. Or what about warming his pajamas in the microwave for a minute prior to putting them on him? Maybe there was another element of the changing that bothered him. It was after mom took her shower—at 8:30 or so. Could we try an earlier time? Maybe he was too tired, and his patience and concentration were wearing thin. Could we try that?
No. The answer was no, although this was not said directly. None of the suggestions were implemented. There was just an avoidance of trying any of them even once. No. Not even if it might make it better in the evening, more pleasant all around, and perhaps make for a more relaxed time before bed watching TV. No. I just couldn’t get my head around my mother’s refusal to try to improve the situation.
It turns out this is very common. The elderly, as a general pattern, expect limited change and they do not want disruption in routine or time or place. My parents are no exception. Try a new restaurant? We probably won’t like the food. Or crowd. Or prices. A new recipe? Your father won’t like it. A new caregiver? Only if the old one quits or the current one does not follow my instructions. The elderly do not like change. After all, why should things have to change? They’ve always worked in the past. There must be something that can be done to keep the status quo. It certainly isn’t anything I’m doing that has caused this.
That’s just the point. It’s not anything you’re doing. It’s what you’re NOT doing. Dementia has changed the playing field. Dementia has changed what works and what doesn’t. The result is the environment has to adapt to dementia. And with it, so do our responses. We can try something new (like the heater or the time dad goes to bed, or what clothing is worn). It wasn’t a voluntary decision on dad’s part to require a change to their routine; it was dementia’s parameters that had shifted.
And so here we are. Perhaps the focus needs to be on the setting, the steps, and relaxing the rigidity of the routine. Structure can become so limiting and restrictive that the individuals trying to live within its parameters have their hands tied about what will work and what won’t. This is when they show resistance in any way they can.
Elderly expectations will try to limit change in most cases. If you’re a caregiver, you’ve got your work cut out for you. Listen for the underlying message. It is I don’t want things to change. I don’t want him/her to change. I don’t want to change. I want things the way they were. I want him to be like he was. I want him to be better. I want us to be able to do the things we used to do. I want our lives back. Such is the on-going grieving process when a loved one has dementia.
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