Category: Silver Linings

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.

I’m not after a cure for dementia

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.

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.

2022 I’m ready.

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.

I hope you enjoy this article

twitter.com/fwddementia_ca/status/1473660529868746759

Wishing you all a true sense of peacefulness

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

being.

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.

with much Love Christine and Pheobe

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.

Today was tough, it was rough, but lets go back first to Tuesday, Tuesday I was spending the day in hospital, Things happened quickly ly on arrival, as soon as I was triaged Within minutes I was whisked away ecg, blood work, into a bed IV hooked up, down to Imaging dept, meds started, somewhere in there a doctor came in. I was given meds for pain, meds to activate my stomach, and something else, so-much done so quickly, half a day later, home, in bed pain relief for the first time in months. Wednesday was a mirage of phone calls from varios depts scheduling more tests, then the call from the specialist office setting up an appointment for today. My specialist ( Internist) is already waiting for specialized tests he had done that have to come back from Calgary, he’s still waiting, but today his talk was hard to hear. He said his speciality is to help people like me who have very complex health conditions and try to find the best ways to manage them. As he had thought my muscles are being impacted due to blood flow, it is now further complicated by my nervous system being impacted, the damage to the spinal cord, and the nerve damage that is where and what is causing the pain. He is bringing a Neurologist on board to help navigate this new complication. It is impacting many things and it I am in bed more than out, when I’m laying down the body has less stress and pressure on it, the blood can flow with less stress on my heart. Tuesday the pain reached a new high, I needed the help of those at the hospital. My specialist took a great deal of time today talking to me about how they have to be so careful, because giving me the wrong thing with all my complex issues can cause more problems than they help, the goal is to-get me to have the best quality of life as they can. In January they will be trying some nerve blocks to see if that will at least so that i can enjoy my days. But things are progressing, and although you know when you are diagnosed things will progress, at this point the ”dementia “ piece of the diagnosis seems like the least scary. All the other components are the scary parts, they say people who have dementia usually die of other things not their dementia, for me my vascular system, vascular dementia, which has impacted my heart, my lungs, my liver and kidneys, and now more losses, muscular and nervous systems. When the specialist said said to me that ” he promised he would never give up on me, I was in tears, when later he said he won’t ever quit trying to help me, I just cried more. He is so kind and compassionate, I am truly grateful that my doctor brought him on board in my care a few years ago. As grateful as I am, it does not make the losses of abilities any easier to take. It is something that people with dementia deal with continuously, losses, and they are hard, it down right sucks sometimes. So today I crumbled, today I cried, I cried a lot, everyone thinks I am so strong, truth is I am only strong because since my husband died (2005), strong was not a choice but a necessity. But I am not made of steel sometimes I crumble, these last two years have been extremely hard, todays news was devastating, so I crumbled. Nothing is working right, I have so much inflammation, so much inflammation, I can’t wear a bra, cant have anything tight or restrictive on, none of it feels good, my heart struggles, and along with it I struggle.

I am not opposed to knowing my system is winding down, I am not afraid of death, I will be talking to the doctor to ensure the maid program is securely in place for that time, but I in the mean time I want to get where I can function well enough for one last great adventure, maybe two. Its what i keep focusing on, I just keep saying, just get through to spring, so you can have your adventure.

The next weeks up until a couple days before Christmas will be spend going from appointment to appointment.

My hope is that those who know me will understand that when I need to rest, it is not that I don’t wish I could do things, but i don’t know from hour to hour right know whats possible. Yes it sucks, but its my reality at the moment. As much as it sucks as much and all I want to do right know is cry, tomorrow I will get up and fight for another day.

I am very grateful for my team of doctors and I know how fortunate I am that they work so hard for me, but I also know that ensuring that people understand how hard this is is just as important as showing people that they can have hope and purpose. This is a complicated illness.

Last night I woke in the middle of the night thinking about how often talk about ensuring people can thrive, to have a good quality of life. Many of us living with Dementia myself included talk often about living well despite or diagnosis, that our illness doesn’t define us. We so many great examples of people living with dementia doing a lot of great things. I believe we should always give people hope, help them find purpose and to live their best life.

But there is another piece and this piece I am not sure of how many may or may not feel the things I do, but I am fairly certain some do even if fleetingly. This other piece is the piece that I feel right know, the piece that says I’m tired. I’m tired of trying and fighting every day to thrive, I’m so exhausted from it that I am not sure I want to keep fighting. And I know I can hear the gasps already, the ” oh but you cant give up, the oh but things will get better, the oh maybe you’re depressed”. Yip I can hear it all, it makes people uncomfortable when you are honest enough to say those things out loud. The truth is I am not depressed, I am real, and not every day or every week is good, its not easy having to fight this fight every day, no matter how easy we make it look. Sometimes our bodies and souls are just tired, so sometimes not wanting to fight to thrive anymore is more real than most can imagine.

Truth is there is actually great peace in being able to say it and own it. It feels good to say today I don’t want to keep up the good fight and if it all ends here and know then so be it, its been a hell of a run, but I’m tired.

For most of us we have so many complicating factors dependant on which type of dementia we have, we live with constant pain, our dementia is so much more complicating than most have any idea, in large part I think because for the last 30 plus years everyone knew about the late stages no one acknowledged the early stages, people still for the most part have very little understanding of the challenges those with young onset face, even today people look at me and think well you look ok, or you don’t look that bad, but they don’t see the pain I fight, the fatigue, how the only time I get a little relief is when Im lying down. Others its there vision, balance and coordination, so many moving parts that someone having a short visit will never see.

Those are the pieces and parts that some days tell you, I don’t want to do this anymore, those are the often untalked about things, that bring us to sit and think and feel that today, I don’t want to fight anymore, it doesn’t mean that tomorrow I wont get up and fight again, but sometimes I just am too tired.

I think others need to respect people in that, not try to ” fixthem”, or make them feel like they have too, maybe they need to feel like its ok to not, and when you decide that thats how its going to be for the duration its ok too.

It’s not about being depressed or suicidal, its about being real with ourselves and our illness, its not easy, it challenges us every single day, its ok to celebrate all that we enjoy, and find the joy in things we can each day, but its also ok to not sometimes.

I won’t quit fighting not yet, because there is still a couple things I am hopeful to do on my bucket list, my bucket list has also shrunk 10 fold, but today thriving is not something I’m up too. and when the say comes that I reach that point where being done is what I want then that will and should be ok too.

December 1st, 2021, first day in weeks that I have woke and actually been pain free. That being said, I have been noticeably missing from many things and interactions, missed meetings, missed events, missed social conversations, many days its been too much to navigate through the pain to try to manage participating a lot of things, and even though most of them are on line, its still difficult to be present when pain is overtaking you, and laying flat is the only relief. This is those components of dementia that few understand, all the physical challenges. However, I did with great effort, manage a couple things the last few days, one per day, thats all I could do, but this morning, I actually feel almost human, I’ve managed a walk. these simple things don’t seem like much until to manage them takes everything you have in you, so Im grateful that today I feel a little better, maybe, hopefully, another run of doing and managing ok. Although maybe to many its small thing to me it’s everything and so much to be grateful for. A little thing people don’t know about me is that every morning when I wake up the first thing I do is look up and say Thank you, knowing I am being blessed with another day.

We have as everyone knows been experiencing devastating events here in BC, its been a hard year here for many and it is a wake up call for us all and as we go into the holiday season, I do hope we all think about whats really important, about how we can adapt our lives to help with climate change, because each small piece makes a collective large difference. I’ve also been hearing everyone be so excited about how unusually warm it is for December 1st. it is 17 degrees Celsius, 62 degrees Fahrenheit here today, the average temperatures should be where I live ranging from 0 to -6 Celsius or 22 to 32 Fahrenheit, many are jumping up and down, saying it could stay like this all winter, but I think we should all be thinking about what that is implying. We already have had our highways, railways lost to floods and washouts, thousands out of their homes. Have you stopped to think about how this warm weather is going to effect things going forward, we already have supply chain issues, costs of food becoming more than most can manage. We have had our farms and crops wiped out it will take years to recover, that means the things we usually are supplied by them in the spring we won’t have, or we will be paying a lot more for them to come from other places. We already have the ground saturated, unable to handle the huge amounts of rain, the snow pack is melting, which we need for spring and summer or we will again be faced with more natural disasters of more fires. I am not wanting this unusually warm weather, I am not looking forward to what it may mean, if we get lots of snow and cold on top of unstable ground more slides, more avalanches. I think often we say we want something without giving thought to what it really means. The old saying of ” be careful of what you wish for”, may actually have more to it than what many realize.

No I am not living in the doom and gloom world, I am however living in a world, where I believe I need to be informed, updated so that I know what I can do to help myself get through the coming time, as well as help others and so that I may try my best to not put added burden onto a system that needs us all to be proactive. Whether it is the pandemic or climate change, whether we want to think globally or closer to home, each and every one of us have a role to play. It is not a matter of thinking that somebody should do something, we all need to do something. I don’t believe we have time to wait, I believe we must all do our parts no matter how small. I believe we need to start treating our earth as the gift it is and all that it provides for us, we need to start treating each other as respectfully as we think we should be treated, not just those we think we should treat a certain way. We have placed far too much emphasis on what we have, so called status, e instead of who you are at the core.

A quote by Barack Obama says it well : ” Change will not come if we wait for some other person or some other time. We are the ones we’ve been waiting for. We are the change that we seek.”
another quote that comes to mind is by Margaret Mead ” Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.”

As my province works to get through the devastation that it has felt this year, and the uncertainty of what the rest of the week will bring, I hope we can think about not being upset that we may not have access to all the things we think we want and need, and be grateful instead of what we do have. Can you get through a Christmas without a bunch of shiny expensive things under the tree, and still be grateful, and still feel blessed, and still enjoy the season. Or will you fall into that “its not fair state”, will you be upset that Christmas Dinner may not be Turkey, or thankful that you have a warm home and food on the table?

We can all choose to be miserable about things or to decide to embrace things and as another old saying goes ” make the best of a bad situation”, look forward, quit saying I wish things would go back to before this or that, things can never go back, we can take what was good from behind us and carry it forward, but forward is the only way and we each as individuals have to decide if we are going to go forward in a positive manner or negative one, and again how we decide to manage it impacts others, collectively we can make it better or worse.

I am of the hope most will chose to make new traditions, bring new meaning to things, cherish and remember all the good parts and that as the year winds down, we have all collectively decided to go forward in a positive manner that will not only help ourselves and our families, but help the world become a better place, the earth a healthier place. i know I have written some about some of these things before, but they are important to me, because even though I live with a progressive and terminal illness, I have much I hope to do and accomplish before I am done on this earth. I want the world to be a better place for all those who are just starting and are still to come. I want children to have hope, to look to their future and have it look bright.

As I am sitting here looking outside at the wind blowing and listening to our provincial updates, I hope you enjoy this first week of December, stay safe, do what you can. To my fellow British Columbia’s we are strong and proud in BC, we have and are being tested in ways none of us could have imagined, so this holiday season, lets all give each other a little more grace, compassion, patience, in all your daily coming and going. Let’s help each other.

November is quickly coming to a close and I believe many people are looking forward to having 2021 behind us, I wonder how many of us have actually taken the lessons we have been given. 2021 feels as though it has been a particularly hard year for so many in so many different ways, or maybe its just that we are more aware, paying more attention to those things, I am not sure. I know for me it has been a difficult year, I have had years in the past that have had tragedy, heartbreak, and those times but this year, it has somehow felt more difficult, maybe because we have had almost two years of covid-19, we have endured so much in the way of catastrophic events, and it feels like we are not through the worst of it somehow. Amidst all of this, health challenges, complications, not only for myself but for many others, the year has somehow gone by in record time, like we are in warped speed racing to get too and through to the end of it.

Is it that we are all hoping 2022 will dawn brighter, with so much of the worlds crisis somehow being resolved by the start of a new year. I am hopeful, how about you? I am hopeful that 2022 will see us become kinder and more compassionate and more human. I am of the opinion, that we somehow lost track of the importance of the human element in things, in our race to have bigger and better and more. We stopped looking after our earth, the animals and all that nature supplies us with. Kill the bears, kill the coyotes, kill the wolves, we don’t want them in our neighbourhoods, kill the other animals for they are worth money for their hides and husks and parts. Yet it is us who is on their land, we have encroached into their space, yet we somehow have felt justified in it all because we somehow allowed ourselves to feel superior. We are know seeing that with our seniors, they are disposable, instead of the invaluable pieces of our society, whose wealth of knowledge is so undervalued. They ( this includes me by the way), have become a hinderance, a burden. We are doing it with our most vulnerable, those with disabilities, our homeless, our people who are laden with mental health and addictions. These are all an indication of a society that has little value for life, that is of course unless it is our own, if it impacts us then we want and expect someone to do something because we should not be inconvenienced. These are the things that have made this year seem much more difficult for me, they weigh on me, I wonder what more can I do, I want to be part of the solutions, I am not interested in being part of the problem, I don’t want to sit and complain, I am hopeful that the dawning of a new year will see a renewed mankind, one where life is valued above all else.

Ok onto other things, I have not been writing as much as I did in the past, it is more challenging these days. My health at this state means I have been spending more time in a lying position to keep the blood flowing with greater ease to all areas, I have an inflammatory conditions effecting me, but each day I wake up, I am happy, i am truly grateful for each day, no matter how much I struggle in the day, regardless of the pain, and lately pain is a huge issue, at times it is so intense it takes my breath away. But again I am at a time when our health care system is in total crisis, I am blessed with a great team of doctors who do not let me fall through the cracks.

So although this last week saw me bedridden for the best part of the week, a few short moments of getting out to walk a block or two, then back to bed, I am still going to my Pilates every week and my physio, some days its all I can do to get myself there, but it is an important part of my well being and I am grateful to their willingness to work so hard with me. I am feeling such inner – peacefulness, in part it is because no matter my diagnosis, not matter that things are progressing and changing I still continue to look forward and do the things I can that keep me and my life going in a forward projection.

I am looking forward to spring, I have submitted two abstracts for Alzheimer Disease International Conference in London, England for April, I am looking forward to being part of an in person panel in Calgary Alberta in May, I am looking forward to perhaps an in person in Toronto or some other location in March of 2022, with the Canadian Consortium of Neurodegenerative on Aging ( CCNA) These are all things that propel me in that forward motion. If in fact any of these things can happen, everything depends on covid19 at the moment, and of course my own health abilities.

I am enjoying and hope once I regain strength again from this set back, to my continued work with Dementia Alliance International, also to my work with Dementia Advocacy Canada, to help ensure its continued growth in Canada. Helping at my local and National level is as important to me as the global advocacy work. Making sure our Human Rights for those living with Dementia are upheld. I have other projects, working with Age well, working with Google, all of these things are positive. Although at times it feels like nothing is happening fast enough, it is all things that keep me moving in a forward fashion. I do not want to end up sitting depressed and waiting to die. It would be easy to fall into that fighting pain and continuous ongoing changes, but instead I give myself permission to rest when required, to only do in a day what I can manage for that day, to know that if I have to miss something its ok, I can catch up, that I have to put my well being first so that I can continue to move forward. This is how I stay positive, and as I sit writing this and the snow is falling outside, it too gives me hope, hope that with every winter there will come a new spring. This snowfall is the start of the next storm coming in, I hope that everyone stays safe. I am waiting for my car to come home, but it is held up in the supply chain issue, so I am not sure when that will be, put its tucked in safe and so I can manage and know that it will be ready when it is meant to be.

As November comes to a close, it will be a new month next time I write. As the new month unfolds I hope it brings with us all a renewed sense of hope, and I hope you all find ways to feel the sense of wonder of the season.