My mom insisted on end-of-life care at home. At the same time she worried about being a burden to her family. A few weeks before she died, when she once more lamented being a burden, I said, Mom you are a burden, get over it. We did. Thankfully, she laughed and accept it.
Her husband wanted to die at home, but she couldn’t handle being a caregiver and put him in a nursing home. Fortunately, we could afford nursing home care for my step-dad and we could afford 24/7 care for my mom at home for her last month with family rotating in from the other coast. It was still exhausting for everyone. When my wife and I discuss end-of-life and I filled out paperwork about my wishes, I emphasize care at home. Now I realize that is selfish. I don’t want to burn my family out. The same burden my mother worried about. If they need to put me in a nursing home, I’ll deal with that.
My friend @SterlingHIT forwarded this Huffington Post article with cringe-making facts about caregiving. The article highlights that spousal caregivers and those who provide care in their home have it the worst. These 34 million caregivers save the country $500 billion annually in caregiving cost.
How do we care for our caregivers? I meet many caregivers. After I hear their often very long stories, I ask how they take care of themselves. The answers are markedly shorter. They seem much more invested in caregiving others than themselves. Tremendous stress results.
My friend Chris Gordon, a psychiatrist extraordinaire, talks about pocket therapy. Something in your pocket you can take when your self-help strategies fail you. He says that most times, people don’t need it. It’s enough to know it’s there. My pocket therapy, living with a progressive chronic illness is Ativan. I take it rarely. What can we do for caregivers so they don’t need their pocket therapy? If we treated our veterans better, I’d say treat caregivers like veterans. We owe it to them. But we don’t treat our veterans very well, so that’s no model. Where are our priorities and values? Pay now or pay later.