family – 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.

A Year in Review and A Look Ahead

Surprised I get to to enter another crack at making it another trip around the sun. Somedays it’s hard to believe, especially during periods when I struggle, and although I don’t have to do it alone anymore, very often it still feels like a battle that you are on your for, not because of anything else anyone is or isn’t doing but because it’s the sheer nature of the disease it’s self. In fact often writing is the one place that I can or actually my brain still can get things out. It is so often frustrating trying to get others to understand what your brain is doing, everything looks good on the outside but the from inside here it’s very different. So much time is spent trying to put the brave face forward, but let me tell you the fear that grips so much of day to day life, it likely would be too much for many. Some days you feel like giving in to it, other days you want to yell it’s ok, I’ve got this. It’s difficult for those who care for us, sometimes one wonders if it’s fair to even ask, sometimes we try to hide our fears, it’s a way to try to protect ourselves and it’s also a way to try to protect them. What we most want is to have a soft place to be with it all, even if we can’t explain it, and we want to have the joy and treasure everyday.
For me I am trying to navigate through the whole process of a complete and beautiful change of life, Marrying the love of my life for the 2nd time, is more than I ever felt possible. Trying to be the best partner I can be despite all the challenges of my dementia. I know at times I am not great at it, I am fortunate that his loves runs so deep that he’s stands beside me through the challenges. I hope and Pray that it won’t become too much for him. So this last year a move at the beginning of the year, remarriage before the end and starting 2024 looking forward to create a lot of happy memories and not taking a day for granted. Continuing to advocate here in Canada., it takes a lot now to do it, it uses so much brain power it exhausts me for a long (sometimes weeks) after), but it also inspires me to keep fighting and going. So 2024 please be gentle on me, the last number of years have taken a toll.
I want to talk about ambiguous loss, lots of talk about it, I want to talk about how it feels from this side of the diagnosis. It’s difficult to be very aware of all the losses from careers to physical, mental and emotional changes. Every time I have to navigate another challenge, from facing things like my vocal abilities disappearing and at sometime it becoming a permanent non verbal status, too extreme lightening bolts roaring through my brain, to night terrors that are beyond anything imaginable, Balance, coordination, vision issues, every one of them make you aware of the losses it has created, it also slams back into the reality that we have a clock that’s running at a faster pace. I am acutely aware that the 3 to 8 year time I was given to be on planet has expired by two years, being told a time frame, no matter if you want to our not you can’t erase it, it haunts you at times. So yes, Dementia is a lot, from the complications with stroke, heart issues, major organs being effected, it’s a load too many have to carry. I say I live well with my Dementia, and I do my very best to do that, but it is not without a draining amount of work, it’s just most often, everyday, although some easier than others, what the world sees is a woman trying to be brave and courageous.m

I am going to share some highlights of 2023, the hardest of 2023, was losing my little Pheobe, I will miss her always. the biggest and best of course, reconnecting with my husband, and gaining my lovely family, hopes and wishes and dreams do come true. Enjoying, fishing, camping ,rock hounding, and prospecting for petrified wood, all incredible and beautiful moments. Spending time with family and friends, so many wonderful moments. Being involved in my advocacy, and all the incredible friendships that it has brought. Having the opportunity to meet so many amazing people, 2023 brought more blessings than I ever thought possible,

So as I move through this new year, the first thing is my health, dementia creates challenges that are so complex and I have things going on right now that scare me, worry me, funny that never used to happen, but because my life is filled with so much love and joy, it’s terrifying to know that my illness can take it away, and I want years of this, so the fear is real, but I am trying to navigate it, and not let it overtake me. Next week more scans, more Drs appointments, blessed to have the doctor I do.
So I will be writing more blogs along the way, but my focus of the moment is to make the most of everyday I am given. Please stay connected, I am always here.