Hello everybody who follows or may have found this blog. As you probably know, I’m quite active on YouTube and I probably post more updates there than anywhere else. The format appeals to me with videos and freedom to just chat, but I really should share those videos here as well because not everybody does the YouTube thing.
A couple of weeks ago I made a presentation at the annual Nova Scotia Alzheimer’s Society conference, where I talked about how Heather and I have arrived where we are today with the rapid progression of this disease, and I talked about some of the coping strategies and adaptations I have set up here in the house to make it manageable. What I really focussed on, though, is the Yana principle and how that has sustained me and made this all doable. I talked about the various resources and services available to us here in Nova Scotia as healthcare consumers, and at that conference, it struck me that I probably interacted with quite a few of the people in the audience over the past three years as support services. I think it’s important that people get this kind of feedback in a real and meaningful way from somebody with lived experience versus information being relayed by professionals and academics, which is also very important of course. I hope to be able to share a video of my presentation here and on my YouTube channel, stay tuned!
In the household, things have stabilized lately… I think this is a very good sign. I think it means that the tools, techniques, and strategies are all working exactly as hoped. The biggest change is that I have this wonderful caregiver for mornings a week, who arrives early enough to get Heather out of bed, changed, and ready for the day. She then does some light housekeeping and will even make a meal if I ask her to. It’s been a real game changer for me and allows me time to recharge on a regular scheduled basis. I can keep doing it with this kind of help. I also still have the help of Hetty, and of Kate, and Heather’s friend and former coworker, Seely. I also have another sister who visits once in a while for a little break. That’s five people who take the time to stay here with Heather and give me a complete break. It sure makes a difference, and I can’t imagine doing this without that help. In fact, it would be impossible… I know this. I would not be able to survive it.
Cognitively, Heather doesn’t seem to be declining at any great rate… And in fact, we have connected on a special level with music! The other day I started singing, “Those Were the Days My Friends.” I was just absentmindedly singing it, and the next thing I knew, Heather started singing along! So then I switched to, “If I Were a Rich Man” from the Fiddler on the Roof,” which we both listen to with our parents when we were children, I suppose. Same thing happened! I found a couple of other tunes that we were able to sort of sing together. Besides the amazement that she has these lyrics still accessible in her brain, just hearing her voice stringing together words made me catch my breath. It made my heart flutter in a bittersweet way. I know it’s all going to be over before too long, but for now, I’ll enjoy these precious moments.
Physically, she’s really stiffened up and has a very slow shuffling gait when we go for our walk around the block. It can take 45 minutes to do one single block here, and these are small blocks.
She surprised me by coming upstairs in the house the other day, though, so that’s great to see. I think I will start incorporating a little walk up and down our inside stairs into our daily routine just to try to keep some muscle tone and joint mobility. She has a doctor’s appointment this week, and I’ll be discussing that with the doctor, although I can’t imagine there’s anything that could be done other than to say take a Tylenol every day, which she already does. I also got a call this week that the geriatrics clinic wants to do a follow-up with her, so that was a big and welcome surprise. If nothing else, maybe I can gain some insights or knowledge about how the future will unfold. And of course, it’s good to have her current condition on the record, for example if I engage with long-term care.
That’s my update for this week…
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