I actually thought I had written this blog, but apparently I wrote it in my mind but not on paper. I didn’t realize that until this morning settling with my first coffee of the day I thought I would check it before hitting the post button. Except it wasn’t there, it was all formulated in my brain, but the action to actually write it didn’t connect, this is Dementia at work. Thankfully for some strange reason, my brain has decided to hang onto it so it ends up here.
It’s a quiet time, it’s Christmas Eve, tonight I will make my little turkey dinner for my little dog and I, I grew where Christmas tradition saw us have our dinner, open gifts, and then off to church, we never had Christmas Stockings we had Christmas plates, by our beds that were filled with candies, oranges and little baked treats. Christmas Day was for sleeping in, relaxing, tobogganing, playing in the snow. So I will have my Christmas tonight.
I have been blessed with people dropping off baked goods, vegetables, and gift bags and baskets, I’m grateful to all those who thought to remember that I’m alone at Christmas ( not because of the pandemic ),just because I am alone, its nice to be thought of, and although its just drive by drop offs just seeing your faces for a few minutes lifts the spirit, you have all touched my heart with your thoughtfulness. If it was possible I would have you all here for coffee to help me eat all these beautiful baked goods.
Healthwise, as most know I’ve really had challenges since March, and not with my Dementia, although my last testing was not great, It showed my recall has gotten significantly worse, short term memory is worse, but I’m still managing quite well, you become good at adapting and learning new ways to manage the shortcomings.
My other health challenges that began in March, have brought us to now., a call from My Doctor on Tuesday afternoon, all my inflammation markers are high, they know I don’t have an infection or any kind of virus, something triggered my immune system to start fighting in March, it’s like it’s supercharged, they know this is an autoimmune issue, they believe my vocal abilities and my decreased lung capacity are all connected to this, my fatigue, and the list goes on. So the specialist will help unravel it all to see if and what we can do, the problem is much of the medications to help with autoimmune don’t play nice with my dementia meds, so some very carefully weighed out decisions may have to be made. I wrestle with it, I really hope to get some of my physical abilities back, at least somewhat, but if it means losing more of my cognitive abilities quicker I’m not sure.
So Tuesday afternoon I took an “ I feel defeated“ day, I cried, I felt sadness I wondered if this is worth the continued fight. I and we people living with dementia are super-warriors, yes, but we are at the same time, not superheroes, we are still humans with all the normal reactions to abnormal events, we still feel sadness, loss, fear, along with happiness and joy. We have the same ups and downs like everyone else. Sometimes we have to quit fighting and say ” today I just want to feel bad, and sad and mourn for all that is happening,” this does not make us weak, this makes us human, yup we have not lost that. So I took a half-day to feel it, to wonder and question myself as to why I keep fighting, too which I don’t have the answer to except that there are still things I want to do and accomplish despite my complex health challenges.
So I slept for 14 hours, after which I got busy figuring out what in all of it I could do to try to help myself while the doctors try to do their thing. I can’t control the illness or illnesses at this point, but I can do all the things I know how to do to help my body fight. My body is carrying a lot of inflammation caused by this autoimmune piece, I have had no appetite for a long time, it’s been hard, I should be a tiny size but I’m not because of what’s going on in my body, and no appetite means it’s hard to give your body what it needs to fight. So Yesterday I set a plan in place to help my body, I have to eat one balanced meal a day, seems simple but when you zero appetite it’s harder than you think. I will have to prepare and make that meal, which on bad days is difficult because of my fatigue, and my dementia so I have set reminders on my Alexa so that at five pm every day it will remind me to sit down and eat. It will be a self-prescribed force feed, but it has to happen.
I will be continuing to work with my physiotherapist Kathy to help keep me mobile, Kathy has been a godsend to me and has become an integral part of my health team, as well I will continue to work with Lise Halverson, Lise owns Noodle Legs.ca, the company is new to Vernon, I started going to her osteo fit class this fall, she has regular classes as well as classes specifically for people with dementia. She has been a tremendous support and helps me, currently because the doctors don’t want me pushing but want me to do small amounts we are working outdoors social distancing of course. We use activator walking poles which were designed by Occupational Therapists at the women’s hospital in Vancouver, they are different than regular walking poles as they give you a whole-body workout. So if I can do 15 minutes that’s what we do, it’s slow steady at this point, a hard pill for me to swallow to go from walking 8/10 miles a day to a block or two, but hopefully, by spring, I will be well on my way again.
We are lucky to have this company here, their program is designed by the women’s health hospital, and I think many can benefit, especially as we age and balance and coordination, etc become something we need to pay attention to.
It’s a fine balance to try to keep moving without depleting my body and ending up in bed for days, but I continue to try with the support systems I am fortunate to have. It is also possible that this is just part and parcel of my dementia, vascular dementia has a huge component that affects the immune system, they are and can be quite intertwined so it becomes quite complex. People tend to think dementia is just about memory loss but it is about so so much more and affects so many of our body systems. I’m grateful to those who help me in the fight to maintain as best I can, and to those who understand my need to have normal reactions at times to abnormal events.
The New Year will hopefully have more answers than questions, but I have learned that the complexity of my dementia, means that it challenges even the doctors, but I am grateful that they continue to try to help me have the best quality of life I can, and if at the end of the day this becomes another new normal I too will learn to manage that.
In the meantime, I will be grateful that I am here for another Christmas Eve, life is fleeting it’s best to always be mindful of that and be grateful for what we are given.
Wishing everyone a pleasant and peaceful Christmas Eve.