When I married Jim I knew there was a risk he would someday be affected by Dementia. Even with the risks, it was worth it to be with him.
I began to write about our journey as a coping mechanism and also to document events so I've have a record of his decline to help the doctors gauge his mental health. At the time, Jim was entering Stage 4 on the Global Deterioration Scale. He could still be left alone for the day and was was still driving but there were little things that indicated something was wrong.
Three years later, Jim has declined to where he is far more dependent on me for his day-to-day functioning. I've stopped working to look after him and have the time to blog about what we've learned along the way.
In the 80s and 90s, I watched my mother cope with each of her parents as they succumbed to different forms of Dementia. These days, I am more fortunate than she was because I have access to so much information at my fingertips. Technology has been a huge boost to help Jim retain his independence and provide support for me as I look after him.
It became clear that Jim was heading toward Dementia in 2017, I’ve had time to prepare for his decline, at least intellectually (I don’t think anyone can prepare emotionally).
While I consider myself well versed in the disease and the possibilities of what is to come, I found that there is very little devoted to how to cope with the stresses of care-giving. There are a lot of checklists of physical things to do but there is a lack of resources offering comfort, commiseration and hey-you’ll-get-through-this cheer-leading - especially for spouses.
Spouses have so many more layers of adjustment to make as their partners get sick. There are intimacy issues that aren’t addressed in most of the books I've read. For example: How do you deal with libido and performance changes during the decline of motor function? How do you adjust your relationship from being an equal partner to parenting your partner. How do you do it without making them feel frustrated or useless. This is the void I’m hoping to fill.
Join me on our journey, hopefully I can ease your path and if you have helpful information, please share it in the comments.