Conversations with Mom are very difficult now. She cannot follow the thread of successive sentences. She has even more difficulty when trying to talk on the phone. This not unusual for dementia at this stage, but I really miss hearing her clear voice.
Our conversations are most often one-sided. Most of the time I simply check in with her to make sure she’s warm and comfortable. She has great difficulty understanding what I have to say so I often repeat myself five or six times. Throughout the day, ninety percent of our talking is me asking her, “Will you eat one more bite, Mom?” or comforting her as I help her walk, “I’ve got you, Mom. Keep leaning on me. Mom, I love you.”
She speaks most coherently into her dreams. As she dozes, she’ll speak clearly to comment on what she sees or in response to a voice I cannot hear. I want to be a part of those conversations, too, but I can only smile at her and hold her hand.
I try to read as much as I can about dementia. I belong to several caregiving forums and often have ads pop up on Facebook pointing me to other articles or blogs. This weekend, I “met” Wendy for the first time and was glad to find her blog. It’s called whichmeamitoday.wordpress.com and you can link to it here.
Wendy was diagnosed with early onset dementia in July 2014 and has been writing a blog since then. She says that her intent is “to write all my thoughts before they’re lost. Luckily the part of my brain that allows me to type hasn’t broken yet and I find that easier than talking.” It is serving as her memory now and she also hopes it serves as a way of raising awareness.
Although I haven’t read all the entries, I have a sense that Wendy and I would be good friends. Unfortunately, she lives too far away for us to have a visit over coffee (or tea.) She has articulated many of the same things Mom went through and her descriptions in the first person resonate with me. Dementia affects so many people and I am certain there are those who are close by who are going through it and I don’t realize it. Maybe they don’t realize it.
As I read through Wendy’s blogs, I wish so much that I had started writing earlier. I wish I had interviewed Mom and written down her memories. Today those conversations are mute. I remember some things she told me – people and places, family, childhood memories – but I can’t recall many of them.
Mom often journaled her prayers and thoughts. In the new year, I plan to transcribe more of her handwritten thoughts from years past into these Mondays with Mom articles. It’s not quite the same as having a conversation, but it’s as close as I can come now.
I write Mondays with Mom to encourage caregivers, but today I’m modifying my goals to include encouraging those with dementia and all its various forms. I encourage us all to journal or blog or scrapbook – whatever appeals most to each individual. Not only will it bring sanity to the daily trials now, but it will serve as our memories in the future. Let’s have all those conversations now while we still can.
