Caregiving and COVID-19

There’s been a lot of discussion about residents living in nursing homes and how they are impacted by COVID-19. Today I want to go in a different direction…

Let’s talk about in-home care partners with loved ones who have dementia.

Maybe your mom has dementia and was living alone…but you invited her to stay with you during the COVID-19 crisis.

Perhaps your mom has lived with you for a while now. She went to an adult day center when you went to work. The adult day center closed. And you are (somehow) expected to now put in your 40 hours a week from home.

Maybe it’s your partner who has dementia. They are in the early stages…they don’t need a lot of assistance, but this crisis is causing them a lot of confusion and anxiety. You answer the same questions about the virus 100 times a day.

Let me start by saying I don’t have the answers. I never took a class in grad school titled “Coping with Dementia During a Once in a Lifetime Deadly Virus Pandemic.”

We are all just doing the best we can. And I think it’s important that we aren’t too hard on ourselves (or each other).

There is no wrong or right here. It’s about what works.

For most of us…whether we have dementia or not…a routine works.

You know how great it feels to wake up on a Saturday morning and realize you have nothing on your calendar all day? It’s a good feeling. You know how it feels to wake up on the 45th day of having no routine? Not such a good feeling.

Most people do better with a little bit of structure. Without that structure, we may begin to feel like we don’t have a purpose.

A few weeks ago, I told someone to make sure to try to keep her dad’s daily schedule similar to what it had been before COVID-19 and social isolation. It seemed like reasonable advice at the time…but for many people that’s just not realistic at this point.

We may need to create new schedules. Write them on whiteboards. Have tasks and a to-do list everyday. Structure each day in a similar way. Our best bet–in some cases–is to give up on that previous routine and settle into a new one.

Maybe your loved on with dementia is asking a lot of questions. Why can’t we go out to eat? What’s the illness they are always talking about on TV? Are a lot of people dying? Can’t we go to the grocery store?

I don’t have perfect advice for answering these questions. I would reassure you that it’s okay to provide a response that minimizes your loved one’s fear and anxiety. Maybe you downplay a situation. Maybe you do some therapeutic fibbing (that’s the term we use because “lying” makes people uncomfortable).

We should give people information that they are able to digest. If they can’t digest it, consider withholding that information. Of course….there are MANY people with dementia who are fully capable of digesting the COVID-19 crisis (well, as capable as the rest of us are of digesting it, anyway).

Most of all, be patient. Obviously, be patient with your loved one. It’s hard to have dementia. It’s even harder right now.

But, also, be patient with yourself. Caregiving is hard under under the best of circumstances. It’s harder now.

Maybe you are going to respond in a not-so-nice tone. Perhaps you are going to forget to do something that’s important to your loved one with dementia. Maybe you will realize you haven’t showered in 3 days, and you’re not sure when you last brushed your teeth. And you know your loved one should’ve had a bath last night but it just didn’t happen. You’ve forgotten about healthy meals for the time being; you and your loved one are surviving on frozen pizza.

It’s okay.

I’d tell you to call a support person to come over so you can get out for a while. But you can’t call a support person when you’re social distancing. And you really can’t go anywhere anyway.

Acknowledge that things are going to be different for a while. You’re going to do your best, but some days your best isn’t going to be that good. You’re going to go to bed at night and think you’re a pretty awful caregivers.

But stop. You’re doing okay at this. It’s not about perfection.

This is a pandemic. Nothing is perfect in a pandemic.

I hope you are well physically and mentally.

 

1 Comment

  1. Thanks so much for your blog. 8ts obvious how much you care for your patients and their families. My husband has FTD. His dementia has progressed slowly so I’ve noticed changes for over six years, but he just got diagnosed last January. I decided, recently, to start a blog myself. I’m not sure how much time I’ll be able to give it, especially now that our elementary aged kids are home and I’m homeschooling again, but I want to try. The more people know and understand about FTD, the better. Thanks again for your work. I really enjoy reading your blog.
    – Jen Silverman https://thisisftd.wordpress.com

    Like

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