Dementia Caregiving and COVID

I haven’t given COVID as much attention in my blog as it deserves. I’ve started many posts and abandoned them because they felt inadequate.

To be fair, I have gotten a bit of hate the few times I’ve written posts about COVID.

Examples:

I thought you were smarter than this. COVID isn’t any worse than the flu.

You are brainwashed just like everyone else. I expected more.

I think you are being overly negative about this. I read your blog for positivity.

I need to develop a thicker skin, I know. And if people don’t want to read my blog, they should move along.

I expect to get some negative comments about this post as well. Unfortunately, COVID has become a political issue in the United States.

But I need to say something…

COVID is impacting all of us, but older adults and those with other health conditions are at higher risk. (Obviously it is not just these populations that are at risk.)

Yet, I am sick of people saying, “I’ll be fine if I get it. COVID really only affects old people.”

It’s the only that bothers me. Only old people.

Because old people are disposable? Because they don’t matter? Because they aren’t productive and valuable members of our communities?

I can’t help but feel like we don’t care about old people unless they’re our old people.

I know someone whose grandma died of COVID in a nursing home. I can’t say she was alone, or even that she was surrounded by strangers. Her family takes comfort in knowing that the nursing home employees who took care of her for a few years were with her.

The family would have come to the window but she was on the 2nd floor. They were grateful the nurses were able to Facetime so they could say goodbye. After she passed, they waited in the parking lot for the funeral director to come. They were grateful they were able to touch her body before they put her in the car.

But is that the way you want to leave this world?

When I worked with hospice, we used the term “good death” a lot. It sounds like a contradiction, right? But it’s the goal. A death that is as pain-free as possible. For most people, a good death means being surrounded by those you love. It means getting to say goodbye to those closest to you.

It’s not only that death occurs…it’s how it occurs that haunts me.

It’s not just that older people are dying from COVID. It’s that COVID is preventing them from having a good death.

And that matters.

As most of you probably know, I’m a college professor. I coordinate the Gerontology program at my university. The students in my major and minor often work in home care or at nursing homes, assisted livings, or memory care communities. Many of these same students live in the residence halls.

While many college students may not be worried about COVID (because they will be “fine”), my gerontology students are terrified of inadvertently bringing the virus into a facility and infecting residents. They take all the precautions they should be taking…but they can’t control what their roommates and peers are doing.

Many people tuned in to closely follow our President’s battle with COVID. I don’t care what news channel you prefer…all of them are talking about COVID (although with somewhat different perspectives).

It’s not that we’re not talking about COVID, but we aren’t talking about the tremendous and life-changing impact this virus has had on caregivers, those who live in nursing homes, those who receive care at home, and those living with dementia. But we seem to care a lot about the politicians and celebrities who test positive….

I haven’t written a lot about this (although I think about it a lot). I haven’t written much because I can’t write much that’s solution-based.

I get questions like:

Should I continue to do window visits when they seem to agitate my mom?

Should I take my mom out of the nursing home for a while so she doesn’t get COVID?

What can I do to encourage the nursing home my loved one is at to expand visiting options?

How can I have better visits with my mom on Facetime when she can’t seem to focus on the conversation?

Here’s the thing….I DON’T KNOW.

They don’t teach this stuff in grad school. I am at a loss when I try to give advice. All I can tell people is to control the things that are controllable, and stop guilting yourself over stuff that you can’t fix.

Despite having little useful advice, I want to acknowledge how this has changed many of your lives.

To those of you struggling through this pandemic, I see you.

I see that it’s brutal to not being able to see your mom and dad for months.

I see that “window visits” can be bittersweet, especially if your loved one can’t understand why you can’t come inside.

I see that Facetime and Zoom are great for some nursing home residents, but others are confused by seeing people they can’t reach out and touch.

I see that phone calls are fine for some but just don’t work as people progress toward the end stage of dementia.

I see that it’s hard when you are home 24/7 as a caregiver with no options for respite.

I see that it’s hard when you caregive for your loved one at home but can’t take them to the grocery store or out to eat like you used to.

I see how difficult it must be when you live at home with a loved one with dementia–who has no idea why the grandkids can’t visit anymore.

I see how challenging life must be if you have a loved one with dementia who has anxiety about COVID and asks the same questions over and over again.

I see that it’s stressful for those of you who have children who are now homeschooled…and a loved one to care for.

I see that you might be depressed. I see that you might have increased anxiety. I see that you might have trouble sleeping. I encourage you to seek help during this time.

I also encourage you to credit yourself for getting through the day. Stop beating yourself up over what’s not going well because it’s likely a result of something you have no control over. As a caregiver, you might not get a lot of positivity thrown your way. It’s okay to pat yourself on the back.

Don’t be afraid to give yourself some kudos for surviving–even when survival is messy.

17 Comments

  1. Thank you, Elaine. I just had a conversation with my dad about the nursing home in our state where every one of the 62 residents tested positive and 10 have died. While we agreed that probably many of them are/were probably at peace with their own passing, my heart is absolutely broken for any of them having to leave this earth without their loved ones surrounding them. 😥

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    1. I read an article about that nursing home the other day. You’re right—it’s not just that people are dying, it’s that they are dying without loved ones. I can’t believe we aren’t talking about this more.

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  2. Thanks for this. I’m sorry you were the recipient of those negative comments–some people just don’t understand/believe how very deadly COVID-19 truly is. Caring for someone with dementia is hard enough on its own. Until COVID-19 is a distant memory, we must continue to believe that it exists, is contagious, and can kill.

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  3. Once again, Elaine, your post was spot on. Every time I think how lonely my husband must be, how lonely I am, I remember that at least I’m able to FaceTime with him or talk on the phone, or occasionally visit through the fence. But there are others whose loved ones are gone, who have only their memories. Covid is real, it’s a killer, and you’ve summed up the thoughts of many of us so very well. Thank you.

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  4. Thank you Elaine. This was very insightful. So many opinions often very little thinking before people make judgements. Thank you again for the encouragement. Some weeks it is hard not to look back over the 55 years with my hubby and wish for the good old days. I am thankful for the times we can still have. He does not remember what that was that we did but he enjoyed it at the time. That is our new normal and I am trying to embrace every day knowing I did my best even though some days I think I am going to lose my mind. Connie Sent from my iPad

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  5. Thanks for seeing me. It’s kind words of support and “getting it” that make me feel not quite so alone in my struggles as I care for my husband at home.

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  6. I’m going to try this again! Thank you so much, Elaine. I don’t understand how a virus became political, but here we are. I appreciate your support of people with dementia and their caregivers, and especially admitting you don’t have the answers, but that you’re listening and supporting and comforting and affirming.

    Liked by 1 person

  7. I appreciate it when someone who’s opinion and perspective I value highly, says they don’t know. Thank you!Linda SSM OntarioSent from my cell

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  8. Elaine, as the saying goes, “You can’t please all the people all of the the time!”
    Just keep doing what you do for you do it so well. I look forward to your posts and yes, I learn a thing or two.
    Keep on keepin’ on.
    PS COVID-19 may not seem important to others … until it affects them or someone close to them. Just sayin’. 😀
    ~B

    Liked by 1 person

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