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Advocates Advocating Christine Thelker © 2020 Dementia For This I Am Grateful Living well with Dementia Silver Linings Stress

Shaping the Un – Shapeable

I’m sitting on my deck enjoying a beautiful Sunday Morning. It’s a long weekend here in Canada, the one that usually has everyone off and away camping, holidays and kick starting the upcoming summer season. Of course for the second year of lockdowns and restrictions due to covid it has changed that for many, although because people are allowed to camp and explore in their own area many are taking advantage of having access to many of the campsites, and venues usually filled with tourists. I love the tourists because they are good for the economy and because I love to wander and see new places as much as I can. It’s been part of my makeup since I was very young. But it would be nice if a certain percentage of things like camping spots were kept for people who want to be out and enjoy but closer to home. I don’t normally go anywhere on long weekends to busy, even the back country is and can be busy so I normally stay low key. It’s actually kind of nice as my home area is quieter on long weekends. I was planning a nice bike ride this morning but it will be more of a mid morning ride, maybe a longer ride that way.

It’s funny yet not surprising that sometimes making a few changes in how and what we are doing can have bigger than expected outcomes and just how fast some of those outcomes can be seen. The last 1.5 years has been difficult health wise, a lot of hospital stays, a lot of tests, treatments and the likes, I am still having some testing doing for various things but overall, I think I am starting to feel an upswing. I am more energetic, up until 10 or 11 instead of being so fatigued that bed at 5 or 6 pm was the norm, but when your body is struggling it is necessary at those times, but I sure am enjoying the reprieve. I truly believe I have been pushing my brain to hard, depleting it, not giving it enough time off to rest and recharge. It’s something I’ve talked about many times, but I don’t think that sometimes when you’re in the throws of the “busyness” that we actually recognize how badly we are depleted. Sometimes our bodies do what’s necessary to make us pay attention to what it is trying to tell us. I’m glad I paid attention before the cost became tragic and maybe irreversible.

My cozy morning coffee spot

So this morning as I’m sitting waking up refreshed, revived, enjoying all my plants and seeing all my seedlings start to take shape to become the beautiful array of colours that they will be, I have been giving lots of thought about the shaping and reshaping that I am in the throws of. I was chatting yesterday with a friend who is making the move into independent living, giving up what has been home for many years, he has had to scale back a lot of commitments, his dementia has let him know it’s time to do things differently. It’s what I’ve been thinking a lot about in recent months, how to I reshape my literally unshapeable life. Normally as we go through life we create a new one, three, five year plan’s etc and adapt as we need to. But when living with Dementia making any plan beyond today or at best this week, is futile, things change day by day, what I can manage today will challenge me tomorrow then in three days it may be easier than ever. The doctors give you the best information out there about how long your life expectancy is after diagnosis, for me it was 3 to 8 years, well this is year seven, if I look at that … holy crap should I just throw all caution to the wind, yet I know many people can do and are living 25 or more years, others don’t even manage a year, dementia is cruel that way, it is and will take whatever trajectory it decides for each person. I have often wondered which is better. I’ve chosen to be grateful for each day and although the last year and a half have been challenged by health and the pandemic, I am now trying to figure out what to do for my living arrangements there isn’t a lot of options , when I’m feeling good, when my brain fatigue isn’t crippling me, when all the complicating factors are sitting quiet, I feel like I can maintain on my own for a very long time. But what is being on my own really? Is there a better alternative that would allow me my independence and a better quality of life? It’s a lot to think about. I’m trying to just let it sort itself out, put it in Gods hands, let the universe show me what the next step should be, I don’t want to make or force any decisions, as the world restarts, hopefully here in Canada sometime this summer/fall, hopefully the solutions will present themselves.

My advocating and writing will always be with me, working with the organizations I do and the research groups is an important piece of my life, reshaping how much and when and what pieces I do will also be important. Living with dementia is about continually adapting, and once again I am in the throws of it but grateful that I have the ability still.

By Chrissy's Journey

I am an advocate for people with dementia in Canada and globally, having been diagnosed with younger onset dementia myself a few years ago.

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