I have gotten to spend time with quite a few family dementia caregivers recently. And I had a revelation today.

When they describe caregiving, they use words like anger, sadness, confusion, anxiety, and stress. Sometimes they also use words like joy, love, and connection.

However, the word that I hear most frequently is alone.

It’s ironic that my revelation is that a lot of people feel alone. I feel like I should have a giant social gathering and buy them all beer and pizza so they don’t feel so alone. (This isn’t really a joke…we are talking about doing something like this. The beer is on me.)

Why do caregivers feel alone?

You don’t go as many places. If you do go somewhere, you rush to get back home to your loved one. Maybe your loved one is with you and people avoid you when you’re in public.

Your friends might stop calling. Maybe they don’t know that you still want to hang out. Maybe they don’t know what to say when you’re around. Perhaps your spouse was the social butterfly, and they haven’t been able to plan anything since they’ve starting showing symptoms.

Perhaps you feel like the people in your life are sick of hearing you vent about your loved one with dementia. They can’t deal with the details, like how your husband is no longer continent or how he cries at night. You finally just stopped sharing. When you’re around people, you find it hard to focus on their conversations about their lives. And you feel like there’s a wall between you and other people.

Maybe you used to work but had to quit to be a caregiver. You’re used to eight hours a day of social interaction, but now you are lucky to have one good conversation a day with your spouse who has dementia.

I don’t know if this is a comfort to you, but I get why you feel alone. Given the circumstances, it is normal to feel alone.

But you’re not alone. I could give you some astronomical number and tell you that’s how many Americans have dementia, but I don’t think we have a clue how many people have dementia. You don’t register and get a dementia card, and so many individuals are never diagnosed. People living with dementia have caregivers who might be spouses, children, parents, siblings, friends, and neighbors. You are not alone.

And, yet, we don’t talk about this a lot. There’s still a stigma. We feel embarrassment. We feel shame. Maybe we even feel like it’s somehow our fault.

I understand that caregivers feel sadness, anger, confusion, frustration, and a whole host of negative emotions. I just wish they didn’t have to feel them alone.

4 thoughts on “Alone

  1. By coincidence, the thought ran through my mind during one of my middle of the night bathroom breaks that “I don’t know how to be alone.” I’ve been married so long that I know I’ll have to re-learn how to just be myself, all by myself. I called a widow friend whose husband had Parkinson’s dementia and who I had met (when her husband was still alive) at a support group meeting. I knew she would know what I was talking about–and she did. She said not to go there before the time came because it would depress me. And, things would be different than anything I could imagine. It helped to have someone to talk to about this. Thank you for writing about it. It helps so much.

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  2. So much yes to all of this. My mom was so young when we started her journey with dementia, which meant that I was way younger than most caregivers too. No one I knew was on the same roller coaster as us. I had so many friendships that were damaged because I was unable to be present in my friends’ lives. Now that my mom is gone and I have SIX close friends who have a parent with dementia, my goal is to make sure none of them feel as alone as I did 12 years ago.

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