I am a member of a few online dementia and Alzheimer’s caregiver groups and have been for years. I cannot express how helpful they are. As a general rule. Sometimes I don’t agree with the things people say or post in these private groups, but my philosophy on the internet has always been that I am in control of what I choose to react to, and if I don’t agree, I just keep scrolling. Anyway, I highly recommend that people find some sort of support group when they are going through something like this. I cannot begin to list all of the ways a group can be helpful. But there are plenty of people in these groups who are angry. And sad. And completely at a loss. My heart breaks for them. I get it on one level. And I wish I could reach through my device and hug them because there is so much hurt and collateral damage caused by Alzheimer’s. I wish I was somehow able to let them know that this is hard, but it doesn’t last forever. And there are bits and pieces of things to be grateful for along the way.
I ran across this journal at a store not long ago; actually just days after Mitzi died. I wish I had found it longer ago and adopted its message. Mitzi had this down pat, though. Especially prior to this year before the disease had erased so much of her personality. She had the greatest outlook and acceptance about her diagnosis and prognosis in the 3 years I was her sidekick. There is a song she liked that repeated the lyrics throughout: “There ain’t nothin’ gonna steal my joy.” She loved that.
I went to a good friend’s surprise 40th birthday tonight. Another friend asked what I was going to do now that my assignment with Mitzi was over. I explained that I really don’t know. I am on the countdown to 40 myself. I don’t have a job. We sold our house because we had a great opportunity to sell it and move into a condo temporarily that was only 10 minutes from Mitzi, which allowed me to be more available in the last 2 months. (Previously, I lived 45-90 minutes from her depending on traffic…one way!). So I don’t have a house. It’s a very weird time. I sort of always thought I’d have a lot more of my life “together” by almost 40.
But then I keep coming across the title of this journal that jumped out at me on the bookshelf 3 days after she died. And I keep reminding myself of the example Mitzi set: that it is a CHOICE to find joy in the journey. It was almost like she left it there at that store, with its purple edge peeking out from behind another book, like a post-it note message for me to find when my heart needed to hear that truth…????
