I was twenty-four years old when I became a caregiver for my grandpa. I left my old life and moved in with my grandparents to care for my Grandpa in his journey through Alzheimer’s. There at the very start of my journey, fresh in that new place of life, I sat down and began with the following email to my family:
“Obviously I can’t send daily updates, but I thought to I’d let you know how things have started out. Last night I slept in the same room as Grandpa. I don’t know how much Grandma told him, or how much he remembered. He didn’t appear bothered or surprised that I was sleeping in the room . . . but it feels a little odd because I don’t know what he was told, what he thinks at any given moment, or even what he understands. He keeps forgetting what room he sleeps in, and this may be part of why he doesn’t seem to be troubled by me sleeping in the same room. Grandma is trying to really pound in his head that I am the one putting him to bed. I guess one of the really big problems for Grandma was Grandpa’s habit of wanting her to put him to bed. Grandma is exhausted by 10:00 p.m. and playing nursemaid to Grandpa (telling him how to take off every piece of clothing, how to climb into bed, tucking him in, kissing him goodnight) is too much for Grandma. I thank God that Grandpa was doing so well last night, because I was pretty much thrown in the water and told to learn how to swim. […]”
The first blog post came a few weeks later and opened with the reflection: “Life can change suddenly. Sometimes, it does. On September 24th mine did.”
From the very start I wrote. It was private emails at first, and then a semi-private blog as I chronicled my caregiving journey through Alzheimer’s. Eventually, it became public blogging. But through the entire journey I wrote. It was therapy for me. It was a form of remembering in the midst of a disease which was full of forgetting. Three years of marking the path through laughter and tears, learning and letting go until Alzheimer’s finally took Grandpa away. Afterwards, in the final blog post I wrote, “For me the writing is so packed full of emotions, so packed full of living, that it is kind of like drinking from a fire hose.” I had a book’s worth of material, and I wasn’t certain what to do with it.
I wanted to help and encourage other people in their caregiving journey, but it was not an easy decision. A part of me didn’t want to revisit my writing and dig up all the painful memories of what had happened. Added to this was implicit resistance to sharing the story with the public from certain parts in the family. Grandma only wanted me to write flattering things–a rosy false picture I was not willing to paint. And there was no guarantee other people in the extended family would understand the purpose of sharing such a messy story with the public. The easiest path would have been to put the writing away and move on.
Instead, after three years I came back. I became convinced it was a story I needed to share, to be an encouragement for other caregivers, regardless of whether certain people in the family might not approve. I counted the cost and decided I would deal with whatever came–but I would share the story.
It turned out not as badly as I feared. Grandma passed away before the book became public so she never saw how she wasn’t painted as the perfect person she wanted. Most of the family was supportive. There was the one relative who–without reading the book–cursed me out for my vile intentions in publishing it. But when you have a lot of relatives only being reviled by one out of the lot is about as good as one can hope. And the response from other caregivers has been overwhelmingly positive.
It was scary to become a caregiver. The future was so unknown and yet I had to make a choice about what I would do. I may have found something equally scary in publishing the story of that journey. Sharing a hard experience with the public opens a door to another uncertain future. It doesn’t feel comfortable, but both journeys share something in common: the risks are worth it. As soon as my book was released I went on the road to share my message of encouragement in person, and as I spoke people were moved to tears. After one talk a woman said that my story had finally allowed her to grieve the loss of her own mother.
The long nights, the hours on the road, the stress of strange situations and new places–I don’t have any regrets. My book opens with the words, “It is strange how life travels in full circles” and in a way writing my story has also done that. It hasn’t been easy, but it has been good. And I look forward to touching many more hearts on this journey. Perhaps I will see you there.
Rundy continues to write and speak on caregiving and caregiver support. You can find him online at www.caregivingreality.com and in social media you can follow him on Twitter at: https://twitter.com/CaregivingR and find him on Facebook at: https://www.facebook.com/CaregivingReality/