When I started writing “Mondays with Mom,” my hope was that it would reach people who were struggling with their caregiving. I had no illusions of being able to lighten their load, but sometimes it helps to know that someone else is in the same boat. I wanted enough transparency and enough honesty to illuminate the struggles of caregiving without compromising Mom and Dad’s privacy in any way.
Dementia as a disease manifests itself in different ways, but there are certainly enough basic points where caregivers struggle for us to connect. Since I’m powerless to stop this terrible disease, my hope for these articles was to make caregiving more visible, more understood.
Roselynn Carter said it best: “There are only four kinds of people in the world; those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.” In 2015, a report released by the National Alliance for Caregiving and AARP put the estimated number of unpaid caregivers in America at 43.5 million. That is a lot of us caring for a grandparent, a parent, a spouse, or a child, and it’s just the tip of the “silver tsunami.” (For more information, see here.)
When I was first introduced to Alzheimer’s care in the early 1990’s, I was part of a day care center for senior adults. My job was entertaining – singing, dancing, Bingo, and the like – so I really had it easy. Yes, occasionally my job included trying to keep someone from undressing or trying to escape out the front door (we did have locks, of course,) but primarily my job was to divert and encourage. I rarely saw the truly ugly part of the disease.
Part of my training was to read a book called, “The Living Death: Alzheimer’s in America.” It was a small paperback, maybe 60 pages or so, but as I read it, I wept. There was no way to know back then how much Alzheimer’s and other forms of dementia were going to impact my life. I have no doubt that God was preparing me for all of the dear people I have served as a caregiver, including my mom.
Writing has been cathartic for me. Although I’d like to think the writing was merely altruistic, it’s been a huge help, too. I’ve heard from so many who have been caregivers. My words have resonated with them in some way and they encourage me as only those ahead on the journey can do. They see the end so clearly and remind me often that I will never regret caring for Mom. I know that’s true.
Sometimes in the day to day, however, I wonder what I’m missing. Although I attempt to keep friendships connected and family ties strong, I feel lost and left behind when activities happen without me. I’m selfish about wanting more time at home and wish for blocks of hours filled with nothing. I’d love to be lazy so I could sit about with a book and my puppy’s head on my lap for hours.
Perhaps that’s too much transparency for this article. My heart is torn in two directions. I don’t want anyone to do anything for Mom – I’d love to be super caregiver and attend to her every need. I know that’s not possible and I am so very grateful that we have such an amazing caregiving team. (See here to read about them.) There are days, however, that I want to run away. Since I cannot make Mom well, I can’t stand to see her in the fog that is enveloping her more and more.
Dementia stinks.
