Critical Nitwits in Dementialand

I was speaking at a support group when an older woman told me that her husband, who had Alzheimer’s, needed 24/7 care. She said she was able to be home most of the time, but she was continuing to work about ten hours a week at a liquor store. She explained that her job paid little more than minimum wage. She paid more for her husband’s care than she made at the liquor store. A lot more.

Then she listed off the reasons that she kept the job. First, she enjoyed it. She liked the social aspect of talking to people about booze. Second, she wasn’t sure if she could get the job back if she quit, and she didn’t know what the future held. Third, she needed to get out of the house sometimes or she would lose her mind. Fourth…I stopped her before the got to the fourth reason. I don’t know how many reasons were on the list.

“You can stop justifying this to me,” I told her.

“So you understand?” she asked.

I did understand, but that didn’t really matter. What did matter was that she understood. She understood her reasons for continuing to work, and they made sense to her. That’s what mattered. She may have been looking for some support for her decision to keep working, and I get that. However, the way she justified her decision to me indicated that she felt the need to justify it to others in her life as well. It bothered me that she felt the need to defend her choice to continue working.

Caregivers have to make a lot of rough decisions. Sometimes those decisions are supported by others. Sometimes they are not.

I don’t understand how you can put Dad in a nursing home.

I don’t get why you are touring assisted livings. Grandma is fine at home.

It doesn’t make sense that you took her off that drug.

Mom is a safe driver. You broke her heart when you took her keys away.

Most people with dementia have one or two primary care partners. I often work with these primary care partners, who feel that their decisions are criticized by those a bit more removed from the situation. And these care partners spend a lot of time explaining and justifying their decisions.

I used to try to help these care partners come up with ways to effectively communicate their reasoning. To some extent, I still do this. However, I’ve shifted my focus to helping care partners cope with those in their life who might be judgmental of their decision-making.

If you are a care partner who is questioned about your decisions, explain concisely why you did what you chose to do. And then…stop explaining it. Just stop. If they don’t get it after one explanation, they won’t get it after 27 explanations. Just move on with the knowledge that you are doing the best that you can. And that’s all you can do.

We make the best decisions we can with the knowledge we have at the time. Sometimes we make bad decisions in caregiving, as we are prone to doing in other areas of life as well. Maybe your family and friends are eager to point out when you’ve made a bad decision. Some people are like that. You can’t change them.

Often it’s a relative who shows up in town for a weekend and has “all the answers.” (Yeah, that’s sarcasm. In fact, I speak fluent sarcasm.) Sometimes it’s a friend whose well-intentioned advice isn’t that helpful. I see caregivers who spend a lot of time and energy explaining their decisions to these people, and caregivers don’t have excess time and energy. So you know what? Stop explaining yourself. Stop justifying your decisions. Just stop.

There are two types of people. The first type of person understands you and supports you. There is no reason you need to explain or defend yourself to them. They understand that maybe your decision is different than the one they would have made, but they are a different person than you are. They understand that you have to do what works in your situation. They get it. If you are lucky, you have many people like this in your life. If you don’t, you need to find more…immediately.

Then there’s the second type of person. Perhaps you have a few of these people in your life. (Well, if you are lucky, it’s only a few.) They look for fault in the people around them. They forget that different things work for different people. They expect that everyone is like them and should make the same decisions they would make in similar circumstances. They listen with the goal of finding fault in what they hear rather than finding understanding or common ground. If you have many people like this in your life, you may need to reassess your social circle…immediately.

There’s no reason to justify your decisions to the first type of person, and it’s futile to explain them to the second type of person. Save your breath.

We can’t always eliminate the second type of person from our lives–although when it’s reasonable, it’s worth considering. What we can do is stop trying to win their approval…because we never will. You set yourself up for failure when your confidence about your caregiving decisions is dependent on critical nitwits. You have to find a way to care less about they think. You’ve got to tune them out.

The best way to do this is to fill your life with as many supportive people as possible. You need to find people whose supportive voices drown out the unsupportive voices. Maybe you find these people at a support group. Maybe you find them online. Maybe they’re at your church. But you find them.

If my husband had Alzheimer’s and needed 24/7 care, would I work ten hours a week at a liquor store even if the job actually cost me more money than it paid?

Maybe. I’m honestly not sure. But it doesn’t matter.

It doesn’t matter because the woman at the support group is not me. We are different people. What works for one caregiver may not work for someone else.

She didn’t have to explain to me why she kept her job. It doesn’t matter if I get it. It matters that she gets it.

8 thoughts on “Critical Nitwits in Dementialand

  1. I really enjoyed this post! Thanks so much for sharing!

    I have never been a direct caregiver for someone with Alzheimer’s and Dementia, but I have had to help a grandparent after an injury and I have also had to help an older member of my family by supporting them in making better health choices…

    I did receive a lot of criticism. For instance, a lot of people wondered why I wouldn’t let my grandmother drive even though she said she was okay to do so after she had a pretty severe car accident. Her physician had told me to make sure she didn’t so this was the reason why! For her health! However, no matter how many times I tried to explain this to people, and yes, even family, everyone insisted that I was being mean and controlling. The same sort of thing happened when I was helping an aunt after she had a stroke.

    Mostly, I really enjoyed the support you give to caregivers through this post! It really helps!

    Like

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