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.