Being Needed in Dementialand

People need a sense of purpose. They need to be needed. It’s important that we all have a sense that what we do is meaningful and important.

You might anticipate that this post is about individuals living with dementia. You might think I’m going to write about how important it is to support them in leading lives that provide a sense of meaning. You are probably thinking I’m going to talk about how to allow those living with dementia to keep doing what they love—whether that be baking pies or going biking.

But I’m full of surprises.

This post is about care partners.

But I’m going to start by talking about myself…because that’s just how self-centered I am.

I feel needed.

Sometimes I feel much too needed.

Last week I wrote from O’Hare Airport, and today I write from an adorable coffee shop adjacent to the Wisconsin-Stout campus. (I’m a guest lecturer here today.)

I’ve got a couple of voicemails that I need attention. And 22 emails have rolled in since I last checked my email a couple hours ago.

A couple people at the university need information from me to finish up reports they are writing. A few students need to schedule an appointment with me. Three people need me to follow up with them regarding references for current or former students. My secretary needs me to let her know when my teaching assessments should be done.

Even my Roomba needs me. I just got an alert on my phone that his right wheel is stuck. (You have to name your Roomba on the app, so my alert says “DJ JAZZY Roomba’s right wheel in stuck.” I actually have guilt because I’m four hours away and can’t help him out. And yeah, it’s definitely a “him.”)

Right now, I wish no one needed me. I want to sit here and write a blog post and eat my delicious Rice Krispie treat and drink this latte.

But I know that I should be careful what I wish for… I’m overwhelmingly needed right now, but I know that I’d feel lost if no one needed me. If I get to a point in my life where I don’t feel needed, I’ll struggle.

That’s the thing with life. Many of us going from being overwhelmingly needed during young and middle adulthood. We are needed by our spouse. We are needed by our kids….and even our pets. As they get older, parents may need us. We are needed by work—our clients, our colleagues, our bosses, our students. We are needed by the PTO, the local Democrat/Republican group, the neighborhood association, and whatever other organizations we have attempted to blow off when our plate is full. They keep calling.

We are needed.

And sometimes spread too thin.

Yet many of us will face a time in life where we feel like we aren’t needed.

I could mention that people with dementia often lose their sense of purpose and don’t feel needed. I must admit that their families, care partners, communities, and society are thefts of that sense of purpose as much as dementia itself. And that’s where I could take this post…but I’ll leave that for another day.

Today is about care partners. Many of you feel awfully needed. Some of you can’t leave the house because you don’t feel comfortable leaving your loved one alone. You are needed to physically be in the space of your loved one. You are needed mentally to make decisions—which your spouse or parent or sibling seem less able to help with lately. You are needed to console your loved one with dementia when they are mad or upset or frustrated by the challenges presented by dementia.

I hope you have support in all of this, but I know that many of you don’t.

And some days you might just want to take a “sick day.” Walk out the door. Go for a drive. Turn your cell phone off.

But you don’t really have that option.

You are needed.

When I said that thing about how people need to be needed…maybe you are a care partner who laughed because you are needed at about 14 on a scale of 1 to 10.

(I talk to few people who feel needed the exact right amount all the time. Most people feel too needed or not needed enough. Unfortunately, being needed can be feast or famine.)

A woman I spoke with recently is a care partner for her husband. He has Lewy Body dementia and lives with her in a condo that overlooks a golf course. In years past, he spent a lot of time on that golf course. He didn’t pay much attention to what his wife did. Life was golf and work, and that was about it. He didn’t have a lot of room left over for his wife.

But…now he needs her.

He really, really needs her.

He can’t drive, so he depends on her when he wants to go somewhere. He no longer feels comfortable going through a check-out line because he struggles with counting money, so she must accompany him to the store. He even wants her around when he spends time with his buddies. He feels better if she’s around in case he struggles, and (for the first time in their marriage) he tells her she’s important to him.

For the first few years, she appreciated how dementia had made them closer. Sure, it was difficult knowing he had dementia, but his increased reliance on her and his appreciation for her are what she sought her entire marriage. It was dementia that finally made them—in her mind—a team. And she was necessarily the leader of the team.

But now—his dementia is progressing. She doesn’t want him to put the trash to the curb or get the mail because sometimes he just doesn’t come back. She has to find a golf cart and go searching for him on the course. In the past few months, he’s started needing help to get ready for bed. She tells him to go put on his pajamas, but he usually comes back down wearing the same clothes he’s worn all day. When he takes a shower, he steps out into the bathroom with dry hair. He doesn’t remember to wash his hair—or maybe he doesn’t remember how to wash his hair.

She liked being relied upon, but now she feels too needed. She can only be in a different room for about 30 seconds before he yells for her, confused about where she’s gone. She’s tired of being needed. She’s talked with his doctor and family about memory care, but she struggles to give up her role as his “person.” As much as she’s frustrated with his reliance on her, she can’t fathom him relying on others. She tells me that over the last several years she has grown to identify herself by her role to him. As tired as she is, she knows it’ll be a struggle to let that go.

She’s gone from unneeded, to needed, to overneeded. And she fears going back to unneeded. She knows it’ll happen in time. She understands he will only be around a few more years…and then what?

I know quite a few care partners who have struggled with the “Then what?”

Being a care partner can be rewarding, time-consuming, demanding, joyful, exhausting, and life-limiting (feel free to insert your own adjectives here). But when it’s over…

Then what?

How do you go from being a care partner…to not being a care partner?

How do you go from being overwhelmingly needed to significantly less needed?

For some people, it’s a relief to some extent. You don’t have to apologize if your loved one dies and you feel relief. It’s okay. It’s normal.

But for many people a sense of purposelessness comes along with that relief.

What is next? How do I move on? What am I even doing here?

I could tell you to find a new sense of purpose. Volunteer at the Alzheimer’s Association. Get a part-time job. Start babysitting the grandkids. Set a goal to walk a 5k. But I know it’s not that easy.

When your journey as a care partner ends, you may look around and realize you have a lot of time. Maybe you notice you have more energy—both mental and physical.

I want you to find a way to spend that time and energy. I know that you have a lot to give, and that this world needs you.

But you have to find your next journey. I believe you will.

And I need to answer some emails and voicemails.

6 thoughts on “Being Needed in Dementialand

  1. Elaine, I found your blog a few weeks ago and I just wanted to say that it’s fantastic! I love the way you write and share stories about your interactions with people with dementia. I am a PhD student in Edinburgh and my research is with people with dementia and their carers so a lot of what you share resonated with me. I’ve shared your blog with a few friends and colleagues so I wanted to let you know that there’s a few of us across the pond who follow your updates and I hope our paths cross one day 🙂

    Liked by 1 person

    1. Great to hear from you! I studied abroad in Hull about 18 years ago and really enjoyed the UK–but unfortunately haven’t made it back since. We did venture to Edinburgh, and I wish we would’ve been able to spend more time up that way. Thanks so much for reaching out to me! And best of luck with your studies!

      Liked by 1 person

  2. Elaine, you have a way of ‘nailing’ it. ‘Being needed…’ is just what I needed to read this morning. Another great post. Thank you.

    Liked by 2 people

  3. My husband passed recently, after finally succumbing to the ravages of fronto-temporal dementia. I was responsible for everything for almost 10 years (over-needed), even when he was in facilities for his care. I almost have a panic attack when I think I might ever have to do this again. So I am not bringing casseroles anytime soon to any man. I am gonna be needed in other ways.

    On Mon, Oct 15, 2018 at 3:56 AM Welcome to Dementialand wrote:

    > Elaine M. Eshbaugh, PhD posted: “People need a sense of purpose. They need > to be needed. It’s important that we all have a sense that what we do is > meaningful and important. You might anticipate that this post is about > individuals living with dementia. You might think I’m going to write” >

    Liked by 1 person

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