Help isn’t on the way

If you’re used to solving problems yourself, caregiving is going to be a huge shift. Your loved one’s disease is incurable. Friends and relatives disappear. And there’s no cavalry to call for help.

The temptation is to go it alone. But surveys show that caregivers who go it alone suffer physical declines greater than those who ask for help from others. I have heard more than once the advice to put on the oxygen mask first before masking your loved one. It’s solid advice.

If you don’t cook, you can set up a MealTrain. If you need to run errands, you can ask friends to sit with your loved one. Long-term, though, you will need to enlist partners who will come reliably on schedule and give you a break. Many cities offer adult day care programs; ours picked up Diane in a bus with SHALOM in big letters on the front.

But why figure this all out yourself? Support groups are everywhere. I joined one three weeks after her diagnosis. I was the only guy on the Zoom call. Listening to these ladies tell their stories was immensely helpful. I could ask questions that only another caregiver could answer. This is help that no doctor or Internet source can offer. Programs like Lewy Buddy will even match you with someone who’s been through what you’re going through.

The cavalry isn’t coming, but there’s a whole invisible army of care out there, and they look out for each other.