Caregivers of persons with Alzheimer’s disease or another dementia know their loved one has a disease through no fault of their own. Of course! Yet, sometimes it feels as if the loved one is deliberately trying to sabotage our best efforts to have the household run smoothly. Chores that need to be done can take much longer when our loved one constantly interrupts. Worse, they might undo the work we had already accomplished.
Besides providing direct care to a loved one with Alzheimer’s disease, caregivers still need to cook, clean, pay the bills, and do all the little things necessary to run their homes. In fact, we shoulder an increasing amount of that burden as the disease progresses.
Sometimes it feels like the loved one is deliberately setting out to make our lives harder than they already are. In the heat of the moment, when you see your efforts destroyed, it’s easy to lash out. I’ve done that. We’ve all done that. Even when we know, rationally, that they can’t help that they have their disease, controlling our emotional response takes hard work and practice.
How much better to step back, pause, and consider what a particular incident feels like from your loved one’s point of view. Their brains cannot process their surroundings, your instructions, or a situation like ours can. They are doing the best they can with the limited cognitive resources they possess.
On my better days as Harvey’s caregiver, I would try to rewrite the script from his point of view. What did a particular situation look like and feel like for him? More often than not, he could not understand why I was upset about something he had done (or undone), and my anger just compounded his confusion.
Our family dog, Nash, was a beautiful collie, a Lassie look-alike. Though Nash was our family dog, Harvey was his favorite, and his care was one of the tasks Harvey took responsibility for. However, as Alzheimer’s disease progressed, I gradually had to assume all of Nash’s care.
It was our longstanding family rule that our dogs were to be strictly outdoor dogs. (Please don’t pass judgement–he had a large fenced back yard, a cool basement in the summer, and daily walks.) Harvey and I had agreed long ago on this rule, mainly to control the smell and hair inside the house.
One day, I came home from work, entered the house, and immediately smelled Nash’s presence. I discovered Harvey and Nash, both very content, on the sofa, watching TV. Harvey was stricken when I began to shout, “What is Nash doing inside the house? You know he can’t be in here! He stinks!” His contentment melted into confusion as I grabbed Nash by the collar, dog hair floating everywhere, and dragged him into the back yard.
Sigh. Not a shining caregiving moment.
On reflection, I was able to look at this story from Harvey’s point of view: Renée leaves me here everyday when she goes. I watch TV most of the day. I’m lonely. Nash came to the glass door and looked in, so I let him in. It’s so nice to watch TV with someone.
I wish that I could say that I relented and let Nash stay with Harvey in the house after that, but I just couldn’t do it. It would have meant much more work for me. It was one of the wake-up calls I needed, though, to decide to hire caregivers for my lonely husband.
2 Responses
Hiring caregivers would be the answer to a lot a problems for some. But, not in our situation and probably many others. To whom I am caregiving has trust issues. This is an area I am trying to be creative outside help. The struggle is real! But thank you for sharing your experiences. As I read them i usually can relate and helps me to focus on the realness at hand!
Yes, Loretta. You are right, not all can hire caregivers (I realize how privileged I was to be able to afford that.) I have known some caregivers who hired outside help, but told their loved one it was someone to clean and/or cook, gradually winning the trust of the loved one. And it’s not always the best option for everyone, like yourself. Adult Day Care and Respite Care are options for some. In this time with COVID-19, though, options are very limited. Maybe friends and family can help out if you ask. I wish you the best!