Life changed so much when I was diagnosed with Dementia, but I allowed myself and pushed myself to find new purpose, to find hope, to forge a new life, a different life, but it has become a good life. So very different for what was my life to what is my life, but I have settled into it, finding many reasons to be happy, to enjoy the simplest things in life.
Bring in Covid 19, everything I had set in place had to change again, lock downs meant further isolations, finding ways to manage and cope through those ( and continuing lockdowns, over a year and still the lockdowns continue). Finding ways to stay connected, engaged, hopeful and joyful, during a pandemic, brings the fight that is faced by those with dementia just in terms of living with their illness to a whole new level.
A compromised system, we all know and hear about how those living with Dementia are likely to have worse outcomes than others if they get covid 19, so keeping my house stocked so I can manage with the least amount of trips needed of going out in public for necessities. Yet still going for walks, going for solo drives, ( ok not totally solo, my little dog Pheobe by my side), she loves drives. She always walked a lot with me, but as she is approaching 17 in May, remarkable, she now mostly sleeps, especially this last little bit, in fact its 9 am she is still in bed. I watch and hover over her, she has been my world for so many years. After my husband died, I was a drift, losing him, I lost my whole family unit as it was, so when Pheobe came into my life, she filled me with love again, so know as I watch her slowly decline, sometimes I think she is trying to keep going for me.
I know she sees and feels my decline and I see and feel hers, animals are so smart, so in tune and understand so much more than we often give them credit for. She has been such a blessing for so many years and through this Covid 19 Pandemic she for sure has been my saving grace.
Time is moving so fast or maybe it’s not, maybe it’s just that I am losing my ability to mange it. I feel like I have just lost a whole ten days, it was just March ending and somehow here we are at the 10th of April. Today I was looking at my new week of medications dropped of by the pharmacy yesterday, and I kept thinking this doesn’t seem right, he was just here delivering how can he be here again, another week gone, just gone, it made me go check to see in fact if I have been remembering to take the said medications, truthfully only missed a couple doses, so overall not bad.
The fact that time is disappearing or if it’s not then that means that I am disappearing more and more, not even sure which it is at this point. I think about all the things I still want to see completed my follow up book, completing my work with DAI, seeing changes take hold through advocating. So much I want to still accomplish, regardless of my dementia and regardless of Covid 19, but with the disappearing time, not sure if it’s possible. I can no longer manage without the help of my volunteer Angie, who without her help I would not be able to continue to do the advocating and things that bring so much joy and purpose to my otherwise stalemated life. I am so grateful to have her, and I encourage all who are living with dementia, yes do all you can for yourself but be brave enough to admit and get the help with the things you need help with, so that you can continue to live your best life.
But there is also the personal things, the people I would like to see, the trips I haven’t been able to take, the documentary I wanted to do, the backroads and small towns I have yet to visit, getting back to the ocean.
Somehow as Dementia robs us of so much, being hit with the added piece of Covid 19, seems to make it all more urgent, yet being stuck unable to get those things done, wondering if I will have the ability to hold steady until I can, or will I end up with a life incomplete?
Its been 11 days since my world was turned upside down, and it should and is for the most part turned up side down in a good way. I feel better than I have felt in years, I literally feel 10 years younger. No pain, no fatigue, inflammation almost completely gone. Lung function improved, energy abounds walking hours each day. It’s a miracle, it’s a gift.
It came in the form of the much controversial vaccine, a high dose of Moderna. I have been tagged as one of the rare cases that they are seeing where it is actually changing how the immune system is working, helping various people, perhaps this will allow for more help for people with inflammatory illnesses, maybe something good to come form all of this covid. So I should be elated, jumping for joy, over the moon with happiness and excitement. On many levels I am, very grateful for sure, but I am also struggling to settle with this new found sense of wellness.
Trying to process it and what it means going forward is more difficult and troubling than I normally would encounter. In the past when having to deal with a change, like when given my dementia diagnosis, although, devastating, I was able to process and move into it and once I found support through DAI it became something that living with was doable. This however feels so foreign, almost like I’m living in someone else’s body suddenly, its so unfamiliar, there was no being somewhat prepared, as I was with my Dementia diagnosis, I new I was not ok, I new something was wrong, it was a matter of working through to get the diagnosis.
This is so opposite, going to bed, plagued by pain and fatigue, so much body inflammation it was visible to all, to wake up feeling vibrant, energized, full of life, able to breathe, walk with ease, no pain. It’s like questioning if this can be real, if this can be happening to me, for the first couple days I wondered if this was the up we see in people before the final decline to death.
More questions than answers, yet knowing the doctors have some answers but this is all new for them too. Will it last? Will it peak and then the decline back to or worse than before? Will this require a dose of this vaccine once a year of 6 months or ever?
I know I should just embrace it and be thrilled but after feeling so sick for so long, its hard to process the sudden change and by sudden I mean within 24 hours, if you are sick and slowly get better that is expected, this was totally not expected by anyone let alone myself. How is this going to impact my dementia? Another unknown, reduced inflammation should mean clearer days, should mean a slower process of the disease. But will that happen?
It has somehow changed me, I can’t explain it, I feel so very different than 2 weeks ago, it’s making decisions impossible. Never one to procrastinate, just make a decision and go with it, right or wrong, you can always change things later, that was me. know I can’t seem to make a decision over the simplest things, let alone the big ones. i’m way more emotional than I normally am.
I have decided the best course of action is to talk to the doctors some more and then just try to be kind to myself and give myself time to settle into this new found gift of life, and truly thats what it feels like, a gift of life, one day you’re facing the do I need to look at assisted living, knowing you are in the 8th year of a 3 to 8 year prognosis, to being handed new life. It’s a lot to process, it also comes with some feelings of quilt because you know so many who are struggling with their own illnesses. It’s just a lot, I sort of feel like I am stuck between these two very different worlds or places, and who and what I am know and how do I proceed? A confusing time.
I woke up this morning still feeling somewhat overwhelmed, and Im not even sure overwhelmed is the right word. Maybe in a bit of shock, somehow wondering is this real, is this really happening. I’m still processing how out of something that has been so devastating to and for so many, and for the rest of us has created havoc and uncertainty, has created a miracle, a blessing beyond anything I could have imagined or hoped for.
2020 was challenging for me not only because of covid 19 but complications with my health as 2021 started my complications with my health just seemed to ramp up to a point that around the Christmas holidays I was thinking that if things continued I would have to look at supportive housing, but trying to figure out how to help myself so I could try to get one more year being independent. My body was doing its own thing, the amount of inflammation in my system was creating all kinds of issues. I’m not going to go into all of them again I have written about them in the past.
Instead and admittedly not being able to fully understand all that transpired in this last week, something seemingly so simple, turned into a greater gift than I could imagine, the words from my specialist yesterday ringing out, playing over and over in my head … “Get out there go live, do all the things you want to do.”
Those words came after he called and wanted me to meet him at the hospital yesterday, knowing that my last ultrasounds were a mess, an MRI had been ordered, blocks were scheduled to be done to deal with pain. So I was expecting almost anything I had also had a conversation with my GP earlier in the week over strange changes since my third booster shot in which I received a higher dose of Moderna, because of my immune system, 24 hours later I was noticing the fatigue disappearing, then over the coming days, inflammation disappearing, body functions working better, kidneys, bowels, brain fog lifting, energy increased, appetite returning. Every day over a week marked unexplainable improvement, the only thing that was different was the vaccine I received. There was a part of me that was thinking is this up period before the end, knowing that most people have a big up swing before they die. I couldn’t understand what was happening, wanting to be happy about it, yet holding my breath fearful that if it crashed I would end up worse.
When my specialist called me in I was trying to be prepared for anything and everything. But I couldn’t have prepared for what transpired. Lung capacity is improved, with the decrease in inflammation blood flow improved which results in less pain in the rib area ( thoracic), then, the explanation of whats happened. They know now that there are (rare cases ), and I am one of those cases, that the Moderna vaccine is helping some people with various health issues, he explained how it changes how my immune system is working, he said when we have an area that is in trouble our immune system focuses there, the vaccine allows the immune system to shift its focus and for your immune system to start working fully, on all areas. He said they have the data know to show that for some and one person in particular, who they gave 22 does of the vaccine his crippling arthritis is resolved. So he was pretty excited to see how and what it’s doing for me. He told me it’s a gift and now I need to get out there and live, go do all the things I have wanted to do, just go, don’t wait just go do them, go live. He recommends that I get the fourth dose as soon as its available. I was expressing my concerns about it reaching a peak and then crashing and that I would end up worse than before the shot. He has assured me that that should not happen that my system should continue on this new path. Again saying get out there and get living. It is going to take time for me to process all of this.
This will not change my dementia, but what it does do is allow me to do all the things to help myself, the decrease in inflammation in my body allows all things to function better, I can hopefully by doing all the exercise, nutrition, sleep, keep the dementia component, and symptoms at bay for longer period of time.
I have to admit I sat looking at him, likely in the most dumbfounded way, he dictated an update to Dr. Cunningham while I was sitting there stupefied, I listened to his words, and his rattling off the new information coming in, it was like his words were echoing through my head, in his closing he said this is the kind of news we all like to hear and see, a miracle for Christine, for sure.
A rethink for myself for sure, its a good thing dementia helps us be adaptable because this is causing a great need for adaptation for the coming period of time. I am nervous of it all, I am excited, I am beyond grateful. I feel the need to go sit in nature and let it all sink in. I need to breathe. its so overwhelming that its almost more than I can manage, but in a good way. I left the hospital drove home with tears streaming down my face, the sheer magnitude hitting me, the immense stress of the last year, fighting so hard through so many health issues melting away in the tears. I’m still overcome with emotions today, tears flowing.
Life is and has been strange in the last couple years, but this was something I never thought could be an outcome. A tremendous start to 2022, is an understatement. Silver linings, miracles, blessings, call it what you will but I feel like this one thing, this vaccine has provided me with all those and more.
I’ve spent the last few days going through a box of photos, some from my very early years, some brought about scatterings of memories, others complete blanks, but some of the things were fun to see, like pictures of my mom with me as just a little one, enjoying the water, clearly her love of water is where my love of water comes from. A childhood that for the most part I have only small windows of time that I can recall.
Something else that struck me was how we change, how as our life evolves so do we, I noticed it in several pictures, different looks, from being my natural blonde to auburn to black. I look at the pictures and I think who were you, and where did you go? Then I think and who am I know, I know I’m not who I was (even though I’m not sure on many levels of who that was), and interesting to see how it brought me to be who I am today. I’ve decided I’ll keep the box of photos on the table for a spell and try to enjoy all that it might remind me of, because as of late it has and is becoming more apparent at just how much I am forgetting.
Often almost as quickly as I do things I forget I have done them, meetings, speeches, presentations. Someone will bring up something that I have done or contributed too and I stare blankly trying for the life of me to remember what it is they are referring to, spelling and remembering the order that the letters of words go in is also becoming harder and I have to use Siri a lot to help me find words, using the wrong word more often. None of that bothers me, it is what it is, I improvise and do lots of substitutions, I stumble but I just keep going until I get what I want. Maybe it is not always in the way I want, but in the end it works out ok. I would live a life in filled with nothing but frustrations if I let all those missteps bother me, learning to laugh at oneself instead of putting all kinds of expectations on oneself is definitely a great way to get more enjoyment out of life.
Ok the other crazy crazy thing which likely will have people having something to say, because there is so much controversy around the vaccines, but I have to tell you of my recent experience, originally I had two of the pfizer vaccines, when I was called in they said they wanted me to have a Moderna shot but a higher dose due to my health conditions. After discussing it, I decided to go ahead, they told me it might really kick me in the butt for a few days because of it being the higher dose and how Moderna works. Well 24 hours after my shot, my fatigue lifted, my inflammation started to go down, everything in my system seemed to working in better fashion, my pain became manageable. Friday, Saturday and Sunday and again today, saw me feeling better and enjoying life again, going for walks, staying up not being in so much pain and so fatigued that I had to be in bed at 5 or 6, instead up till 8 or 9, awake much longer. It’s like it kicked my immune system into overdrive and gave my system a boost in ways I can’t even explain. In conversation with my doctor today, more conversations with my specialist will happen and then trying to pinpoint the whats of my system was so needing what part of the vaccine. In the meantime, I almost feel like I need to hold my breath for fear it unravels just as quickly as it helped. I am hoping it will work with my system and help it to give me another good stretch of time. It matters not where you are on the vaccine front, but it matters to me that maybe it is not all bad for all people. I am calling it my booster juice and said if it helps my system this much then sign me up, I’ll take another anytime. I don’t even remember when I was last feeling this good. It feels like a miracle was granted to me.
Life it’s everything, it’s hard, it’s happy, it’s sad, but for each and every chapter we become who we are meant to be. I’m ok with who I am know and I am happy here, but its sure fun to take a stroll through memory lane.
This morning I woke thinking more about something that has been on my mind a lot lately. It is something that I have had some great conversations about in the last little while and perhaps its on the minds of many others. Okay, I’ll be honest there has been many things floating around this brain of mine, and mostly likely not things that the so called “normal folks think about or give much thought to”, but here in Dementia land our minds/brains work and function in a different fashion.
One of the things that have been really at the forefront of this brains thinking is about how we advocate. We keep talking about how little has changed in 30 years of advocating, yes there has been some changes, but in many areas not much has changed. So is it time we change? Do we need to rethink how we advocate? Do we need to change the focus? Do we need to change the message? We keep saying we want to end the stigma, yet the stigma persists, so perhaps we should talk more about what works for us, what we do to enable us to continue to have the best life possible, lets leave stigma out of it, if we don’t talk about it, perhaps it will change on its own. Are we keeping it alive unknowingly by continuing to bring it to the forefront? Should we change our focus, if we keep saying we want to be invited and included then maybe we need to invite and include. Let’s teach others how to help us, how to work with us, let’s not wait for them to invite us let’s invite them. Let’s showcase how valuable we are. I know first hand that by sitting and being willing to get out of my comfort zone and work with researchers, they have embraced working along side me. We are together making things happen, nothing good happens quickly it seems, but I feel like we are making more improvements, getting more people involved and more voices heard through this avenue than anything else, thus far. I don’t feel used, I feel valued, unlike some of the various organizations that like to have people with the lived experience has poster people to help generate funds to help the organizations. I wonder does this also help keep the fear of Dementia alive? That truly depends on how it is done, and perhaps we should ask them to “our table” and help them better help us. Being angry that nothing is or has changed much does little for any of us.
Also sitting at the forefront of my brain is this idea of “finding a cure”. I am including my dear friend Kate Swaffer’s Blog on this topic at the bottom of this blog. I am sure you will enjoy, so please take a read. We have discussed this topic at great length. For me personally, I think “finding a cure”, creates a false sense of hope for people each time a new article comes out about some drug, and I truly wish they would just stop this type of talk. Work on it if you must, but I don’t want to read and hear about anything until it has been proven, not things surrounded in controversy. I want to hear more about nutrition, exercise, life style adaptations, more about rehabilitations, more about modifications to our daily lives. These are things that can and do for many of us have a lasting impact on our overall quality of life. And speaking of quality of life, let’s look at what that actually means for people and find new and better ways to help them maintain that quality of life for longer. For some it may mean having access to music and singing, for others it may mean having access to various types if art, or cooking, or gardening and out door space and nature and animals. Lets more more emphasis on Quality of life, most of us living with dementia are or become realist, we understand that a cure is not coming in our life span, but we can and do hope for more help in maintaining a lifestyle that provides us with quality of life. I am not personally interested in prolonging my life, I will be happy with the life span I have been granted, but I sure would love to have more help to ensure that whatever the span is.
My dementia has provided me a freedom from the stress and strains of living under and worrying about all the things society has created for us to live with and under. Next week, next year, are of little concern, it’s much easier to let them unfold. I live happier for the most part than ever before because I just enjoy being here. I spend 95% of my time alone, at its ok, because I’m ok and I like me.
I have noticed a lot of people being very angry, angry because of covid, Is that really it though, I think it goes much deeper, but covid has allowed people to feel like they somehow are more entitled to express their anger, but when covid is over if they haven’t looked at the real cause of the anger, what will they then blame it on. I’m not angry, maybe at times a little sad that I don’t get to see people I’d like to see, but not angry, maybe my dementia has given me the freedom of being that allows me to understand that I cannot control a virus, that just like having to learn to walk hand and hand with my dementia, this is something I just have to walk along with as best I can the only difference is eventually the virus will end, my dementia will be with me until my last breath.
There you have it my Sunday rambling of thoughts. Please take a minute and read Kate Swaffer’s blog link below.
The Quote above perfectly describes how I feel at this time. It truly is all I have left is courage, courage, and courage will take me hopefully through another phase of living with a life changing illness.
Today I am so excited, almost exuberant really, for the first time in a very very long time, I have been able to be getting work done. I have send off my Bio for a presentation I have to do in February here in Lake Country, I have finished doing my review of submissions for the scientific program for the Alzheimers Disease International Conference in June. I have responded to emails that have been sitting waiting. It may not seem like much but it is a lot when I have been so busy dealing with health challenges and pain that most other things have been sitting on hold.
Life for me is about adapting, changing and finding ways to continue to manage my illness. I have come to believe that listening to it, too our bodies, the signals the signs it gives us is the best way to stay as well as we can for as long as we can. This is not easy to do, part of me and I suspect many of us living with Dementia, want to push ourselves, do continue to do as we have in the past, to maintain in all the same manners we have. It leads too much frustration with oneself, never mind the frustration it likely creates for others. So I am on a continual learning curve with myself and my illness. Learning to stay in bed when needed, nap if needed, slow down, go to bed earlier. Doing nothing but resting is sometimes the best gift we can give ourselves, our bodies, and everyone around us.
I have been, while I am waiting for procedures to be done, learning to manage the pain, pain creates all kinds of issues and responses in our bodies, which can create a lot of complicating factors, this has been a huge learning curve for me who has in the past always believed we should fight through the pain, push on just keep going. I now understand that keeping going can sometimes mean to just stop for a while. So stop I did, I spent very little time on Social Media, away from many commitments and groups and a lot of time in bed, lots of very quiet time curled up with my dog and a cup of tea. The last month or so has been very different than the push to walk and walk more and farther, to do more, contribute more, instead it was attending what and as I could, less, less, less. What a gift that has been to myself. It is helping me better manage the pain, I will be happy when the procedures happen for the pain control and hopefully they will be successful, that will allow me to be a lot more active once again.
I think the gift of learning and be ok to manage our illness in the best ways for ourselves actually ends up being great ways to help others in their journey with Dementia, especially those who are newly diagnosed, and to help their partners and spouses and ease a lot of conflict, misunderstanding and stress and frustrations that can come from us trying to push when we shouldn’t and from partners not understanding when we are trying to tell them how or why we can’t, even though tomorrow maybe we can. This is the way to living well with illness, because despite of all that illness is and can be we still can live well, we just have to redefine it as we go along.
I am closing our todays blog with the Quote below which also really speaks about how I feel as I feel my Dementia does not own me or define me, it is part of me, we share the same house, and as such must find ways to share the space in ways that are best for both.
I have the feeling that we may have a rough 5 or 6 weeks a head with the new covid variant but I also believe that by the end of February we will enter a time of endemic , and that things will start to improve. I don’t think our world will ever return to what it was but I don’t actually believe it should. we have so much that needs our attention. Our climate, our oceans, and lakes and streams, our wildlife. our health care systems, our seniors, our young, it seems everywhere we look there is a crisis looming, so we need to go forward, to do better, to be better at being humans. It feels like we’ve really fumbled that up.
I spend 17 hours in bed last night through till this morning, changing and challenging health issues has meant it’s been a super quiet holiday season for me, but the better part of the last couple years has been that way. It did make me think about how and what we will see for many with dementia through 2022.
It is well documented that people with dementia would be impacted do a greater degree than most by covid, and for a variety of reasons, isolation, lack of stimulation and engagement, weaker immune symptoms, which makes them more susceptible to many other illnesses. I have watched many of my global family of people living with dementia being effected by more serious health complications, declines in their overall well being. I can’t help but wonder as the world opens back up in whatever fashion that may be, the enormous toll taken on those with dementia. I do believe that everyone regardless of their health conditions, from the most fit and healthiest to people with various health concerns have been impacted, I am not meaning to take away from that. But as an Advocate about living with dementia and for others living with dementia, I think we will have to look at how we are advocating and I wonder will it bring changes in what we need advocating for. I do think we need to really pay close attention as we move forward and have honest conversations about the impacts on ourselves from our perspective and for those with partners from their perspectives as well.
I don’t know what 2022 has in store for me, but none of us really do, but whatever it is I will take it day by day. I hope all those living with Dementia remember to go a little easier on yourselves and for everyone regardless of if they live with dementia or not that this can and may be a year of healing, healing relationships, ( if they are meant to be healed, some are meant to just let be), healing of ourselves of our hearts and minds and souls, for I think often we forget to look inside and see what is hurting and spend some quality time healing our selves. that we can all find a place where we feel at peace from the inside out. That we can find a way to be a little gentler a little more patient and a little kinder as we make our way into this new world.
I am leaving you with a few pictures of my time between Christmas and New Years, when I felt well enough to be outside even for just a fews minutes, and snapped a few pictures. I hope as January unveils itself it showers you all with many blessings for the coming year.
Writing a New years Eve post is somehow much more challenging than I thought it would be. Normally I would be writing about the many many great things and experiences of the last year, except this last year has been anything but normal in any capacity. I don’t want that to sound negative but I want it to be honest.
This was a really really hard year and to pretend anything else well just would not feel right. For those of us living here in BC, we started 2021 with the hopes of seeing the end of covid 19, instead we saw a new strain, the Delta strain, another wave, we then saw unprecedented weather events, a heat dome never experienced here before, then raging fires that destroyed communities, then came the floods, causing so much devastation to our communities, to our infrastructure, our highways systems wiped out, supply chain issues ensued, then the Omicron Variant of the Covid 19, and now we sit in a record breaking cold snap, and although we here in Canada have seen and expect to see cold snaps as part of our winters, this one is far colder than any on record in a lot of our regions. It is not expected to break until we hit 2022. However, the more snow and the longer it stays cold the better for many things most especially mother earth.
That is not to say that there has not been some good as well, heck I’m still alive that in itself is something to celebrate. I still am independent, also something to celebrate.
So looking at 2021, there was a lot of lessons for me, some I think I have been learning over the last few years but 2021 seemed to really be a year of solitude in ways like I have never experienced before. I have been on my own for many years, that is not new, but this year amidst the most isolation thus far, in large part due to pandemic and my own understanding of how fragile my system is at this time and doing all I could and can to protect myself. So far so good, I am still alive.
Not everyone thinks I should be as careful as I have been, not everyone agrees with how I am managing things for myself through the pandemic, at one time that would have weighed heavily on me, the opinions of others mattered, I no longer give a rats ass, I do what I need to do for myself and make no apologies for it. I have learnt it is not up to me to make others understand the why’s or how’s or the reasons behind my decisions in how to protect myself.
I have tried very hard to be non judgmental on others decisions and to be respectful of their decisions as long as they offered the same. It has been a really big year of understanding what I am responsible for, I am responsible for the decisions I make and on how my decisions impact the greater good, or my community or the world in which I live. This has made me even more aware and conscious of everything I do, water use, power use, recycling, not buying more than I need. Walking and riding my bike more than driving, although the last few months and in particular the last two I have not done much of those things, with evolving health crisis. Yes even though I have done all I can to protect myself during this pandemic, I have dementia, I have vascular dementia, which brings with it a host of health crises, some of which I am not yet ready to discuss, much more coming on that front. So I have spent an enormous amount of time alone, and enormous amount of time in bed, usually 12 to 16 hours per day.
I have struggled trying to understand how to make others understand why I apparently ” look good” but am not well. This is an issue for many with Dementia along with many other ”invisible illnesses”, it’s cruel that people have to endure others questioning if their illness is real or not. I have over this year learnt to also change how I look at how others see or don’t see my illness, it is again one of those things that used to bother me, but like so many things I have come to settle into the fact that there are those who will try to learn and expand their knowledge to help them with their understanding of the illness so that the relationship can continue and very likely grow in unexpected ways, or they can stay stuck in their mindset, unbendable, and the relationships will suffer or fade all together. I have learnt to liken my illness to the structure of a building, some people go to buy a house they look at it the structure of the building looks great, they don’t look any further, assuming that if the structure looks great the rest will or must be ok too, however, if one looks further, you can see that the wiring is not good, the plumbing and heating is not good, there is a lot of internal elements that are faulty. Well thats like my being, the structure looks fine to those on the outside but on the inside, hidden away from plain site the wiring is faulty ( brain), the pipes ( vascular system), doesn’t function properly, the pump ( heart) doesn’t work properly, the system has faults that effect the whole building and all that it houses ( kidneys, Liver) and on the list goes. So part of my learning over this last year is to not worry about others view of me or my illness, others views or thoughts are theirs, they don’t live within this house ( body), I do, thats all I can control, or more often not, for the engine ( brain), actually controls it all. I just accept what it gives me.
It has also given me time to reflect on other areas of my life. I have really learnt to let go of things that are out of my control, for example, if you want to be part of my life, I have learnt that it is not just my responsibility to ensure that happens, so those that don’t, won’t, can’t for whatever reason, its ok, I have said for several years now that I am living my life under the old adage of “A reason, A season, A lifetime”, and I believe that this year was the year that I finally mastered that.
It has been evolving over the last few years but this last year it feels as though it has really settled and I have really settled. I have learnt that its ok for people to come into my life, its ok for them to leave, its ok for them to come back in, its ok for them not to. Its ok for me to look at the relationships I have had and be grateful for each and everyone of them for they enriched my life in many ways, some taught me lessons that I needed to learn, some provided richness through the relationship and lasting memories but regardless of the ways or hows and whys they were all of great value to my life.
I have found ways to continue to have value and purpose in my life through my advocacy work. It is my way of giving back, which feels good. Working with many organizations and groups has also brought about a lot of learning about myself, I continue to learn, I continue to grow and I hope that continues until I take my last breath. Having Dementia does not make one stupid or unteachable. In fact, some of the most intelligent people I have ever had the pleasure of knowing have dementia and their outlooks and views on life and living are something to admire. One thing 2021 has done is made me much more aware of the importance of “just being”. Thats what 2021 has been for me a year of just being. It truly has been delightful to relish in that.
I am so grateful to all those who have stayed in touch in whatever ways we have been able to from video and face time calls to zooms calls, good old fashioned phone calls, and the very very few in person visits, each and everyone of those has been impactful, joyful and so very important to me, I will treasure them well beyond just at this time, just as I treasure friendships from times past, memories that will last a lifetime.
So as 2022 approaches, do we dare to hope, and what should we be hoping for. We all need to have hope, so yes, I will forge into 2022, knowing that it may well prove to be a really difficult year once again, especially health wise, but, as long as I am still standing, I will continue to do what I can as I can. I will continue to plan, to work towards making some of my bucket list items happen. I will continue to adapt and change my life as required, I will continue to be as resilient as I can. I will continue to try to make a difference in the lives of others, my advocacy work will continue for as long as my health allows.
So yes I will welcome 2022 with hope, hope for more kindness and understanding for all. Hope that we all take better care of Mother Earth, she has provided and looked after us for a long long time, it is time we look after her. I pray that we find a way to provide a better way for all, less homelessness, less addictions, less trauma that creates so much devastation for so many. That people have enough to eat, that everyone can have a place that is warm and comfortable to live, where they can feel safe. I hope the way forward is done in the way of being gentle and kind to all humans, animals, all living things.
For many it’s been a year they would rather forget, but for me living with dementia, forgetting is something I would never hope for. Rather 2021 has been a year that I can look back on be proud of surviving the storms never giving up, never stopping to hope for brighter days in 2022.
I hope we can all be happier with less, less stuff, less stress, that we can all have more, more love, more joy, more contentment, more inner peace.
This is my hope and wishes for all of you as you enter 2022, may you all find inner peace, find joy in each day, give thanks and be grateful, and always be willing to lend a hand, spread love. I thank you all for being part of my life.
Today I’m posting an article that was just published as part of Forward With Dementia, something that I truly have enjoyed being part of here in Canada.
As we draw closer to Christmas and I read this article, that of course I had forgotten I even did, I am reminded of all that I have to be grateful for despite everything. So I hope you are finding time to relax and try enjoy these days leading up to Christmas.
A big Thank you to those who notified me that my blog/ Christmas letter was saying unavailable. Apparently I had not finished it and put it out properly. So hopefully this will be it.
This year my Christmas letter is a little different than in the past, its a little mix of things that hopefully will show some of what my year has entailed. But mostly my thoughts on the closing out of 2021 and the my thoughts about the year 2022 that lies ahead. I normally do a Christmas letter with a lot of Christmas borders etc, this year I could not navigate how to do that which is indicative of the changes in my overall capacities. Overall, my cognitive abilities are still pretty good, short term memory is shot, long term comes and goes, I mostly exist in today. When I see things, people or places that trigger certain memories its actually most often quite comforting, knowing that my life, what it was, is still there. I am still here.
The year has presented many many challenges with my health and as I have often said Dementia is about so so much more than loss of memory, often it is the complicating health issues that present the biggest hurdles.So many hospital trips and stays scattered throughout 2021. Living in an area ravaged by Forest Fires, all summer long, with unprecedented heat, heat and dementia don’t mix well at least not for me. Then going into fall the floods and devastation to our highway systems and rail lines, creating all kinds of supply issues. I am fortunate that I have felt some of the effects but overall very little because I have been staying so isolated due to the pandemic, so I think that is a silver lining if there was to be one. I have chosen to look at the pandemic as being given a time of rest and going deeper within than about being, about what I can’t do. It’s an easier way to manage it. I’ve actually learnt to really like who I am through all of this. I have also come to understand that most of us have different sides, the sides we show society, the sides we show to friends, very often they end up actually skewing who we truly are, because so often we are the rolls we are filling depending on whether it is our work self, our self as a partner, as a parent, as a friend. But who we are when all those labels are stripped away is often surprising. I like this stripped down person that is me.
I consider this second year of the pandemic to have been harder for people to navigate and cope with so I consider myself fortunate that I have been able to get through it despite the challenges with a positive attitude and hope for the coming year. I have watched many of my family and friends lose loved ones in the past year, I have lost my dear sister in law and friends as well. It has made this year seem increasingly more difficult.
Other changes for me is I stepped down from my position on the board of DAI this summer, it was time to make room for some up and coming board members, and I was honoured this fall with the very prestigious Dr. Richard Taylor Award for my global Advocacy work. My advocacy work is still very much a priority for me and I will continue to work with DAI and Dementia Advocacy Canada, as my changing health allows. Maintaining my quality of life for as long as possible is first and foremost for me. My second book is all most complete and I hope to see it finished. I have speaking and presentations scheduled beginning in Feb, straight through until early summer, and am hoping they will all be possible. Working on these things provides me with positive things to put energy towards. Having purpose I find is vital, and it will take from now until then to complete them, fortunately I can and do work often from my bed.
I am hoping this year spring will see me well enough to tackle a big item on my bucket list, but time will tell, I am busy planning as though it will but realistic enough to understand that if it doesn’t then a lesser bucket list item will have to replace it. My bucket list was totally revamped this year amidst my changing conditions, and I will continue to adjust and modify as I need to.
I am also hoping for time to see family and friends who have been sorely lacking since the start of the pandemic, although it can’t all be blamed on that.
So 2021 has been challenging, heartbreaking, uplifting and unlike any other year I have ever experienced. My wish for 2022 is that as it unfolds it unfolds in such a way that people do not have to struggle so much to afford to live, that the losses faced by everyone, eases into a place of peace. That we become gentler with each other, with our earth and all that it provides. I hope that I get to meet you along the trails of life and spend time together again, or perhaps a new meeting and friendship will form.
I am leaving you with a quote of mine for 2021, its relevant to many I suspect, but for me I never go a day without counting my blessings that I have a team of Doctors who live up to it for me consistently.
Relationships with Doctors
A relationship between Patient and Doctor
has the ability to increase and influence the success or lack of
around treatments and overall well being for a patient.
The relationship between that of the Doctor
and Patient must be build over time,
with compassion, understanding, encouragement
and listening by both Patient and Doctor
The development of the relationship brings about one
build on trust and respect, both of which are vital
to a patients ability to accept treatments, diagnosis
and for them to be a willing participant in their own well
Both Doctor and Patient must be active participants
to make this work. @ChristineThelker2021
I thank you all for being part of my life and I hope you have a wonderful Christmas and that 2022 bestows blessings on each of you.
This blog has been in my head since late last week but I have been unable to put it to paper until know. I am always happy when I am able to accomplish something, earlier today I wanted to write my Christmas letter, normally I add a Christmas Border to the letter, today I could not navigate how to do any of it so it was left undone. Hours later, here I am writing a blog that I couldn’t manage for days.
This is my brain, its actions and inactions, and this blog is about how late last week after a particularly difficult week, a call from a friend in Ontario, her name is Janet, we became friends through my blog, then further developed our friendship through DAI.
We don’t and can’t always talk as often as we would like and although we have never met in person a great friendship, kinship, for each other has developed and is something we both treasure. She also has Dementia, so we talk candidly about the ups and downs the good and bad, and often our journeys cross and parallel each others, similar things, medically, emotionally, maybe not at the same time and maybe not exactly the same but enough to have a clear understanding of what the other is saying when talking about what is happening to them.
Late last week a lot of our discussion is how difficult it is to be in pain all the time, to have your brain misfiring to sometimes multiple parts of your body at the same time. There is so much that people don’t see, thats the hard part, thats where people question whether you are actually just depressed or perhaps it’s something else but it’s not what they think dementia should look like.
The fact of the matter is most people somehow don’t understand that the brain is the control centre for all things within your body, and when the control centre is faulty all kinds of things happen. Many people say “well ya I get that but”, therein lies the problem, there is not but, because we can’t just do this or that. It’s like when you go to the breaker box to flip the switch because a breaker blew, but when you flip it back on it blows again, theres something faulty thats causing the breaker to blow.
For those of us with Dementia, the breakers go on and off at random, it creates such vast and ever changing array of symptoms and complications, but all of that faulty wiring known as my brain and all the complications it is causing is invisible to you, thus we get the, “you don’t look like you have Dementia” so often, at times I wish our bodies where clear so people could see the inner workings and the chaos going on because my wiring is faulty.
I am in crisis mode, my doctors are working like crazy to try to help navigate and manage it all at best I hope for a reprieve, like the switch gets turned back on and everything can run in some sort of regular or semi regular fashion for a bit again. Its why every dementia is so unique unto the person, because each person brain is going to run differently, sometimes the faulty wiring sends people galloping through to the ends stage, others especially more and more as people are diagnosed earlier and are more likely to seek out ways to help themselves, it may go in steps, you may feel stable in all of it for a while, then feel like you fell off the cliff. It’s all difficult to explain to people and its exhausting to try to live in it.
At best we can give thanks to those who do stick by us, regardless of how much of it they can understand, most of us are grateful for the good days we have and excepting of the not so good and terrible. Most of us are also quite willing to except the end, somedays, often many days, death seems like a more peaceful option than the continued battle we do with our own bodies. We cannot and do not have control over our control centre ( our brain), we can try to stay positive in our thoughts, in our actions, however at times we just have to give into it all. At times although often people say well you look good, when what we really would rather hear is, looks like you’ve hit a rough patch. We are not stupid, our wiring is just faulty, we know when we don’t look good, we often are our own worst enemies for we try so hard to put on a brave face and front to make it easier for those around us. That is not always fair to others because then when we can’t or don’t have the ability to put on the brave face, people have trouble understanding why not. Its not an easy path, on one hand you have to pull up your socks to get through another day, and its important we do that, but it is equally important to acknowledge that we are not made of steel, we will crumble at times and we need to, for we are continuously navigating all the detours our faulty wiring puts in our path, whether, its with our vision, our hearts, our nervous system, our vascular system, the control centre will flip whichever switch whenever it wants.
I cannot win in this race with this disease, I do, as do so many others try each day to forge forward, it takes mountainous effort. I don’t need to win, I just need to hopefully be able to manage for a while longer. I have had more engagement with Doctors and having tests done, over the last week than I care to think about. Sometimes you question whether it’s worth fighting for more time if its all spent living going from appointment and test to appointment and test. But as long as I still have enough of a spark to fight to finish off my bucket list I will, I will decide when its time.
I like my friend Janet, understand all of that as others living with dementia likely will as well. It is why our friendships with others with dementia is vital, we can talk about all those aspects, without feeling like someone will question it, think we are in need of anti depressants, or any of the other varied things we hear about. We fully understand the realities and holding each other up along the way is by far what helps us fight for another day.