Dementia – Chrissy's Journey

Its Thanksgiving weekend in Canada, so I thought it’s time for another blog. As always raw, honest and real is what I always promised and always opinions are always my own and not directed at anyone , or anything unless I clearly state that is. Otherwise it’s all me.

So I am sitting ar the top of a mountain this morning, with my husband,enjoying the sound of birds. Morning coffee in the cool crisp fall morning. I am so grateful to be here, yes to be sitting here with my husband, but also to be literally sitting here. I am seeing another Thanksgiving and boy to I have a lot to be thankful for. But in all honesty I am also angry at my body at the moment, for the first time in 3 years, and we all know what happened then, if not a quick refresher, and knowing it was and continues to be controversial, it is andxwas my realty, I was not doing well, much time in the hospitals, those closest to me fearful I wasn’t going to make it, all aspects of my system where struggling, I got a large dose of Moderna vaccine and it was it did a reset of my system. Fast forward to now, not one hospital stay in 3 years, I have been stable, but in the last week, my body again all systems are struggling, I have not felt this week or exhausted, mind and body for a good long time.

I am hoping that because I pushed hard this past 10 months, that my body is signaling me to spend some time refocusing on my well being. Some days it is easy to push aside that I have an illness that is quietly progressing, even when I look and feel like I am doing fine.

I had a bad fall 3 weeks ago, that started it, since then really and especially in this last week doing more resting than anything. And even though I get angry with myself or angry at my body/ 🧠, I know how much I have to be grateful fir and that this may be that little step down and that is expected and then I will bounce along again for a good long spell, heck if I’m lucky I can sweep through another three good years. Every day even if it’s a slower version is a good day. I am deeply grateful for all my husband does to support through all, and as I powered through to support him through his injury and surgery the last ten months, he’s almost ready to resume full activities, and he definitely understands that now it is his time to do some of the powering through, within his limitations of course. We see his specialist next week and hope that will set in motion his final piece of rehabilitation. I am proud of how he has managed it all, and it gives him a little understanding of how I feel when I am frustrated within myself.

Thanksgiving will be quiet this year and we are happy with that, perfect for us this year.

My advocacy work of course kicks up this time of year so am busy with that. Below you will see my next stop, and in the new year I will be heading to Toronto, other things will start booking soon. It is frustrating that so many have worked so hard and yet the movement for things to be improved for those living with dementia are slow. Although I do see good things happening within some communities, and we ate involved with the faculties of nursing and various other educational elements which shows a great willingness to learn and to change the scope of teaching and practice, so we are not without hope and however jaded we sometimes become with some of the organizations and their unwillingness to help move the bar, ( understandable, where keeping elements of fear and stigma keep money rolling in.) Howe er the bar is moving things are changing so hope prevails and I will never quit trying as long as I am able to make a difference. I didn’t like the term ( dementia friendly communities) , it can create its own stigma, but if we make communities dementia friendly we are also making them age friendly and if they are age friendly they are then good for families as well so the whole community. Everybody wins, and after taking part and speaking in several smaller communities I have seen the amazing things that can result from people coming together. So Dementia Friendly means we all win so let’s embrace it and if you can get involved in your community.

I hope wherever you you are remembering that you matter, that your voice matters. I hope you look for the joy in each and everyday. Get out enjoy the season and the wonders of nature that surround us.

Over Due Update

I am only writing occasionally know as things have or I should say had levelled off for me. I have been stable for a longer than expected stretch but as with all things dementia it all of a sudden changes and new challenges emerge. This time it is with my left side, particularly my left leg, and of course for the first bit I thought well that’s my bad knee I must of twisted it a little or something. I enrolled in physiotherapy, thinking this would be the fix. But after a couple weeks and no relief it was apparent something more was happening. Monitoring it closely, only in severe pain when lying in a rest position ie: bedtime. Pain worsens to the extreme level at night. I can walk, hope everything else at night. And suddenly it hits you…vascular dementia…vascular issue, blood flow issues. So calls in for Doctor to figure out a plan, massage and heat to try to minimize pain at night. Fighting the pain makes all other challenges more difficult, brings them more into focus. Small vessels disease a Vascular disease. Dementia effects are far greater than the brain 🧠. That’s the missing piece so often every one thinks it’s memory issues, it’s not ,there are so many other facets as to how one is impacted. Shit this is not what I wanted or needed at this point, but we can only do everything in our power to swart things but sometimes they happen anyways.

This has come at a time when I am already teetering a bit as my 65 birthday is in a couple days, and I think about my sister who never got to be 66. And as much as you try not too think about it I do. I have always said death doesn’t scare me and it doesn’t but I am not ready for that walk yet. I am finally living life as I always wanted with the man I always wanted too, and I am having a quality of life I never thought possible a few years ago. However I also am so acutely aware that my vascular dementia and it’s related complications can change things very quickly for me, that being said I plan on fighting to have at least till I am 85 with my beloved husband. So on with the good fight I go. Not sure what the next steps will be but I will update.

My life has been busy, Wayne was injured while working at the end of Jan so trying my best to take care of him and he finally had his surgery on April 11, so know it’s many appointments and treatment for the coming months. He has been a trooper through it all, I know he really misses is work, and know he will be excited when he can return. I have missed all of our trips as well, being his ” swamper and being able to support him in doing what he loves brings me a lot of joy. My advocacy work has been very busy, although not on the global stage very busy here in Canada and doing lots of work in smaller communities in BC. Which May will be a busy time, April has been full throttle. Getting ready to move on May 4th to Chilliwack, we bought a lovely place that gives us all we need and allows us to “age in place”, we are very excited for our move. but it has been admittedly a lot of work for me with Wayne being injured, but marriage is about each carrying the other at times and this is one of those times. It has actually been going smooth, it’s something I am good at. The only rough spot is that my vascular issues decided to play havoc at the same time. But still overall pretty smooth so far. Once we get moved, between Wayne’s physio and my physio, I have a speaking engagement in Oliver. Then at the end of May the Vast Conference in Calgary and Banff. So busy enough and hoping its total wind down after that. Better to be busy than stewing and Wayne helps keeps me on track. So taking care of one another, each doing what we can.

So do all you can, when and however you can, take the opportunities, the chances and find the joy and the love and drink it in.

On another note, at the CCNA conference, I had the pleasure of meeting a young man who is doing research ( nuero), at the university in Winnipeg. His ams is Turac, he originates from Turkey, his partner is Tia, they were here in Abbotsford to visit her family this last weekend and twice we had the pleasure of meeting with them. A delightful young couple. See pictures below. I am so blessed my advocacy has provided me so many opportunities to meet so many amazing people. This is the blessings in it all.

Some pictures as well from my trip to Montreal to the CCNA conference.