What do I want from this brand new blog? I want to share what I have learned in this new life, now that I’ve started rebuilding it. I spent several years being the primary caregiver of my husband who has dementia. We retired together in 2004 expecting to do lots of fun things together. But that wasn’t what actually happened.
My husband got sick. He had dementia. Dementia begins slowly and lasts for years. As the years passed we got more and more isolated by that disease. He needed less and less stimulation. As for me there were days, in the last year before I had to place him in a nursing home when I didn’t speak to another human being, and weeks when the only contact I had with the outside world was through TV and the Internet.
In PASSAGES IN CAREGIVING, Gail Sheehy talks about finding oneself in the center of a labyrinth and then working oneself out of it again. The center is the point when you realize that you are no longer fighting the disease that you have been caregiving. That instead, you need to find a way to live with the disease, and then accept that the patient is going to die. Working your way out, for most people, comes after the death of the patient, but in my case it came after my husband was placed in a nursing home because it was no longer safe for me to keep him at home. Not safe for him. Not safe for me either. Suddenly, I wasn’t providing 24/7 care mostly alone. Suddenly I was more or less a widow. Living alone. And figuring out what comes next.
For the last 20 months I’ve been working my way out of the center of the labyrinth. And I’ve been rebuilding my life. Rebuilding your life means finding things to do with all of the empty time that suddenly existed. It meant relearning how to have friends and a social life. In my case it meant making decisions about religion and what I believe and then finding a church I liked and joining it. It meant rediscovering the creativity I had put down, and interests I thought I’d lost forever.
More next time. Take Care all.