Chrissy's Journey

It seems as though 2022 decided that it was not or is not going quietly, you would think we would have learnt but it seems that 2020 and 2021, only left people feeling and deciding that they were going to do and have everything they feel they were jilted out of during the previous two years.

The pressure and expectations people put on themselves that they were doing this or having that or going here or there, only to have Mother Nature say otherwise, doesn’t seem to matter where you lived, Mother Nature created a nightmare of weather events that left people, who were already life tired from 2020&2021, exhausted, stranded, expectations of what and how they were going to do things disrupted Trains, planes, highways, it didn’t matter, people were not able to change Mother Natures plans. And if it wasn’t Mother Nature stirring things up it was supply issues, crazy high inflation. So many things out of our control.

Maybe a lot of the airlines/ airports/ trains/ highways people could have done better jobs, but we can’t blame them entirely, they cannot control Mother Nature, and when Mother Nature throws things into high gear it has an instant snowballing effect across the country and beyond, it’s a domino effect. It is not unlike living with dementia actually, and maybe that’s why so many of us living with Dementia live without the expectations others pile on themselves. We have already learnt that like the weather, dementia unleashes itself when and however it chooses, so we have become very adapt at plan B, because we know fully well putting an expectation that things will happen as we want them to will only lead to frustration for ourselves and those around us, because when the storm of dementia stirs things up, we have either had to learn to ride the wave, change gears, change plans, be swallowed up and drown in it or ride it. I no longer live with the expectation that anything will happen as planned, if it does great if not it’s ok. It’s a much simpler and easier way to navigate living with dementia, and has really helped me manage through the last few years and most especially this last year.

2022, appears to have been harder in many different ways for people, and as Christmas approached listening to so many who were determined to make it what it was pre2020, it seemed like an expectation that just the thought of was exhausting, others were deciding to opt out of a lot of things and do something different and simpler, they dropped the expectation bar down, and who and who did that bar ever get that high. Commercialism and consumerism, $$$$$, nothing else, and we bought into it for years, piling on bigger expectations every year, it was not and is not sustainable for most. Another gift of my dementia was that it forced me to opt out of all of that, not just at Christmas but all year long.

My brain is happier, it functions better, less stress = happier better brain days. I much prefer a nice coffee, visit and a chat than all the chaos that most pace themselves through for the holidays, well even if I wanted too my dementia would not manage it, I would pay a far to high of a price to even consider trying too. So I have no problem explaining to people what works for me, if it fits into a bit of their holiday time great if it doesn’t I don’t have any expectation on anyone or anything so I am still o.k. It’s a peaceful bliss, calming time. Which watching the chaos that was created by Mother Nature this Christmas, I am grateful that I along with my dementia had a peaceful and calm Christmas.

It is also a sad time for a lot of people yet somehow they still feel they have to try to meet expectations, do this, do that, be here or there. No one should ever do anything more than they can manage, over the years, and yes I had my years of it to, especially but not limited to women, they run themselves ragged because they think everyone expects ( I have come to dislike that word immensely), baking up a storm, up till after midnight to get stockings stuffed and under the tree, up at the break of dawn to get the Turkey in before everyone wakes, and then working all day for an elaborate dinner,, days and weeks of prep, run run run, go go go. Maybe it’s ok to rent a cabin and have an old fashioned Christmas, or stay home and have one.

Anyways I believe we are being forced to think and do different and I am not sure being in the last couple days of the year we have seen all it wants to show us, but I was paying attention, I get it, I am grateful that I have a little place to call home, that I am safe and warm and I have food. I spend this Christmas season in-quiet reflection, Thinking about people who are no longer with me, well not in the physical sense, I feel their spirits, I sense when they are here. I enjoy chatting with them, reminiscing, it’s peaceful, I allow tears and laughter to flow freely, as a memory hits.

Yes 2022 feels like it was harder in many many ways than 2020 or 2021, it has also left me feeling like going into 2023 without any expectations, just letting it unfold, will allow me to take each moment and what it offers. I have learnt that I am enough, that I am ok just as I am Dementia and all, I don’t have to meet any bars that are set, and I don’t have to set any, I can just be and that is enough.

I wish for each of you 2023 is kind, is gentle, that blessings abound for all. I hope you get to rest more, take time to breathe, take walks, take naps, days to do nothing and feel good about it. I hope you all find peace within in 2023 and that we all focus on helping each other, being kind to others, that in kindness we find love and love is what matters. May 2023 be this and more for each of you, and mostly that we all learn that we are enough, just as we are.

I want to Thank you all for your support and encouragement over this last year, for the lovely messages, emails, etc. I don’t know what will happen in 2023, but I hope to be able to continue sharing my journey with you and you with me. Each of You truly are another of the wonderful blessings that I have received with my dementia.

Happy New Year Everyone

There is something about sitting in the wee hours of the day with all the lights twinkling that somehow bring such a sense of peace and calm. I am not sure what it is about sitting with that first steaming cup of coffee, the fire place going, the lights twinkling that leave one feeling that way, but I know for me it is one of my favourite times of year for that very reason. Is it that it makes everything feel warm and cozy, is it something more? I don’t have the answers, what I do know is that it brings with it many warm and happy memories of years gone bye.

In our house I grew up celebrating Christmas on Christmas Eve, the big turkey dinner, my Grandmother and Uncle with us, having a great family dinner, with many of the German Dishes, that I still love today, along with some traditional type foods. We never had Christmas Stockings, rather we had a Christmas Plate that appeared at our bedside, restocked in the night, we always believed it was Santa’s Elves hard at work. I loved that Christmas Plate filled with Christmas Candies and chocolates and Oranges and baked goodies, I never understood the Christmas stockings and it took until I was an adult too, although, I still prefer those Christmas plates, to stockings.

Just as I still prefer celebrating Christmas on Christmas Eve, and having a Christmas day that is totally relaxed, where no one cooks, leftovers come out, you eat and snack as you like, it seems to be a much more stressless type of Christmas. On Christmas Eve, after dinner everyone gathered, around the living room, gifts exchanged, kids went off to play and discovered with their new found gifts, usually things like a new book, pjs, and socks, maybe a new game that everyone had fun playing. Visitors popped in and out and adults visited and shared laughter. Christmas morning everyone slept in, and then the day of playing in the snow, drinking hot chocolate, and enjoying time with each other.

We didn’t have much as kids, but mom new how to fill the house with love and laughter and could make us feel like we were the luckiest kids alive. I am grateful for all those wonderful memories, things like collecting bottles and taking them in every week with my toboggan, so that I could get a special gift for my mom, dragging that toboggan into town loaded with the bottles, we lived a long spell out of town so it was quite the job to get them there, then taking my money and putting it on my little account the people at the store let me have until, I had added enough to pay for the item, I remember how I felt leaving the store with that gift. Experiences few if any get to have today. It was a simpler time, one I am thankful for.

This year will be spend, going through old family photos of Christmas’s past, the first year without my sister, I will allow myself to smile and think about all the fun we had through the years as kids, then as adults, sharing many many Christmas’s and Christmas shopping together, or a desperate phone call that would find me driving from Campbell River to Victoria, to find her the much sought after perfect gift for her daughter. To the years when we were young when she got into trouble for peaking into presents under the tree to see what was in those beautifully wrapped packages, and she couldn’t help but tell us what we were getting. We talked about that so often over the years.

My more recent years I have spend mostly on my own with my dog, I have had invitations for spending Christmas with others but, am happy to pop by for short visits or having someone stop by here for coffee or meeting for coffee, but I like to leave all the noise and hustle bustle to others and spend my time in a quieter fashion, with my lights twinkling and enjoying a lovely hot chocolate or tea or coffee. I have recently seen many things posted about how to manage the holidays with and for someone with Dementia, and lots of it is great advice, but I somehow feel that if we all just respect each other and allow the room and space for people to celebrate in the way that is best for them, in does’t really matter if you have dementia or not, its just about respecting that we are all different and however we want to do the holidays is how we should do it. For some it is a joyous time, others its a sad time, for some the more the merrier, for others a quiet gathering is better, so no matter how you decide to spend the holidays, I hope you find your heart filled with peace and calm, and that it is exactly what you need it to be. My biggest hope is that you make room to spread love and kindness.

For many it is a time of missing those who are not with us, but I prefer to believe they are here, I feel their presence, I talk to them, I let the tears flow, I laugh, remembering silly and special things, special moments, special gifts exchanged. The first Christmas gift I ever received from my husband, something I still have today. Holidays with family and friends. So I make room for them, for they are still with me in my heart, and they will remain with me forever. So as I remember them I invite them in to spend time with me over the holidays, they are no longer here in the physical sense but they are still here, still part of me and I them.

So from my little Pheobe and I wherever you are, spread love, kindness, and compassion, and I wish you all the very best of the Christmas Season. Merry Christmas Everyone.

Hoping that as 2023 dawns, it showers you all with many blessings, a heart filled with peace, and that you will have a year filled with joy and happiness.

So I can’t speak for everyone, I actually can’t speak for anyone, the only thing I can do is speak from my experiences, my perspectives. There is no right or wrong in them, you can have your own thoughts about my perspectives, which are then your perspectives, again no right or wrong, just yours, as mine are mine.

We should not judge one’s views, for we are all individuals, we all view and take things in from our own unique lens, which is influenced by how we and how the world around us as an individual impacts us. What is traumatic to one is not to another, what inspires one causes another to crumble. It doesn’t mean that we shouldn’t think about things we see and hear, we absolutely should, but we should not judge. I recently really put this to work when and here is what I am not sure of in part because of my short term memory issues, in part because of my inability to frame things in any kind of time frame, and perhaps also due to being I’ll for several weeks with the flu. All in all, I still took the time to think about something, I read, heard, or saw recently. It was that “ people with dementia just want to be normal”. I have mulled this over for a while now, and I have some thoughts on it.

My first thought is “ what is normal”, my second thought is where did or would that come from, it’s a generalization at best, but it is also someone’s perspective, so it doesn’t mean it’s wrong it’s just their perspective on what people want or think they want.

I live with Early Onset Vascular Dementia, I don’t view myself as “ not normal”, I guess if others do that’s their right to have their own opinion and perspective. For me I don’t want to be “treated” like I am Normal, that indicates that I am somehow not normal. What I want is to be treated like a person, a person who yes lives with an illness, just like people live with diabetes and many other illnesses, I too live with an illness, this does not automatically make me “un-normal”. I want people to treat me as the person I am, and admittedly I will say I am likely in many facets anything but “Normal”, I am quirky, eccentric, passionate, somewhere just off of centre. That is my Normal.

So I am not wanting to take away from someone’s idea of what people want but I think we all need to be careful of generalizations. Life, whether due to illness, or just the transitioning from one stage of our lives to the next mean what is or was considered our “ normal”, will and often changes. Just like we see or hear often that some of us are “living well with dementia”, it’s not unlike those who mark that they have lived, 1,3,5 or more years cancer free, it’s marking and acknowledging something that for them is significant in their life.

I often have been heard to say that my dementia has brought many gifts and blessings to my life, others don’t understand how that is possible, others feel that dementia is a horrible disease, which in many ways it is and can be, especially because the type of dementia the way your body manages it, can and often does put people into becoming, behaving, and enduring wraths of the illness far more quickly than it does others.
This is also true of other illnesses. As in all things each person will have their own journey, no one should compare ones to another. No one wants to be I’ll, whether dementia or any other illness, but we learn to live with what we are dealt.

We choose how we view it, we choose how we live with it. I have chosen to share my journey, it is not something everyone is comfortable to do, but it is also healing, caring and sharing. I often have said that it is those who have reached out through reading my blogs or my book that have brought so much to me, inspired me. They truly have been a huge part in my maintaining as well as I have, something I am eternally grateful for. I have chosen to be involved in advocacy, in using my voice to try to make a difference, it is not at all anything I ever had a thought about when I was what society would have seen as“ Normal”, so no I don’t want to be Normal, I want to be me, Chrissy, weird, quirky, adventurous, spontaneous, kind, caring, compassionate. I want to be uniquely Chrissy, who at 63 lives well despite living with dementia. This piece bellows says it all for me, and I hope that I have and continue to blossom, in ways that can make a difference.

Thanks Emily Ong for sharing this message so relevant needed to share it here. This quote is interesting and as someone with cardiovascular disease and dementia, all one can do is manage between the two for as long as possible, until one decides to overtake the other.

I am not sure how I got to Saturday, the last day that was in my thoughts was Tuesday. I have been really really I’ll, not sure what got me, tested negative for Covid, but apparently there is some really bad bugs out there this year. One decided to sneak in and get me, sometimes no matter how careful we are we can still end up catching something.
Living alone, the increased effects of being sick on my dementia symptoms, it gets harder with each bout of illness to manage it alone, trying to stay hydrated, in between the episodes of soaking through everything including three sets of bedding one night due to fever, still trying to care for myself and my little dog, one day drifted to the next, not sure what I all missed in the last week, meetings etc. I remembered this morning I need to do a video they are waiting on, I am hoping that tomorrow I will be well enough to put it together, with the help of a lot of makeup, and hopefully enough voice to do it. There are times when just taking care of yourself is all you can manage, a little Angel named Brenda Child’s tapped on my door late yesterday and put a bag of supplies inside, I could not, let her in, I cannot and do not want to risk getting anyone sick, as this is a nasty one. I am grateful for the care package. She has access to my building so that she can check on me if she ever feels the need or desire and often I forget that. I had given her keys when I first moved in, so I am grateful that she has never forgotten. It is the fever aspect that is the most concerning, well that and my lungs being impacted, so I am monitoring myself well. It is these moments when I would give anything to have and feel the touch of my husbands hand, he was so gentle and caring, in all the outer gruffness that most people saw, he had the biggest kindest heart, and he always took such care of me when I was ill, something I will always be grateful for. But it does bring into clear focus, the challenges of living alone, of being alone, dealing with the ever changing environment of living with dementia to the added complications something like a flu bug can bring about. It is in those moments when you’re disoriented from fever, when your so weak you can barely stand that you question how long do you fight to stay independent, because it’s Saturday, I have no idea and will have to look and see if I have managed to stay on track with my meds through this. Another side effect of illness becoming more complicating with dementia. I am hoping that as I am awake, sitting in bed having my first coffee in, well days? Not sure actually,, that perhaps this is a turning day of things improving, at least I have figured out it’s Saturday. So if you live alone try to keep a supply of things to help you, Gatorade to keep electrolytes up, Tylenol for fever, ice to chop and chip for chewing to help with hydration, lemons, honey, ginger, cinnamon, oranges, soup in the pantry, don’t need yo keep a big supply but at least enough to get you through a week. I am starting to couch up a lot of stuff this morning hoping that is also a good sign , having it settle in my lungs as someone who has had pneumonia many times, it or I would likely not fair well if it decides to take that route. So my apologies if I missed, meetings, or attending things, hoping perhaps by the end of the weekend things will be much improved, but if not you will know it is not intentional it will be because I am just not well enough. So please if you live alone make sure someone can get to you, house keys should be given to someone, think ahead so that when another illness hits you can hopefully manage it. I am trying desperately to not end up on the admissions list of the local hospital. Take Good Care and I hope you all enjoy a peaceful and happy first weekend of December.

As November winds down and we head into the least month of 2022, which for so many seems to have been a difficult year. I think back to 2020 and then 2021, and how often we heard I can’t wait for this year to be over, and yet somehow 2022, seems to have been harder, more difficult for so many on deeply personal levels, so for many heading into the end of 2022, seems to be welcomed. I do however like to acknowledge how difficult the year has been, but I also like to sit and reflect on the beautiful and special moments. On all the ways so many people touched my life and brought joy to 2022 for me. I like to think about the people who made a difficult year by being part of my life, for things like an unexpected visit, an unexpected card in the mail “ just because”, phone calls, video calls, walks and talks, to travelling with me to help me honour my mom and my sister. These are all incredible moments shared, incredible gifts from the hearts of those who provided and took part. Those made the difficult and sad days of 2022 manageable.

It is about learning to honour both the good times and the board times, we were a generation taught to bury the hard and difficult and only focus and remember the good and happy, but if you learn to embrace both, with kindness to others and yourself, find ways to cherish and honour that both the good and the hard brought, our lives become richer.

Having Dementia, and I must say that somedays I marvel at with a lot of hard work, how stable and how slow I have managed to keep my progression. Vascular dementia usually goes in steps and you can maintain in any step for long periods of time ( years in fact), but it can also progress quickly, so I truly believe that with everything I have learnt by being involved in advocating and in research it has helped me remain as well functioning as I am. Although on a bad day, on a day where comprehending and communicating aren’t working I will tell you that those days when my brain is to fatigued to function well, that I hate my Dementia. But again, I try to focus on the many wonderful blessings it has brought me. Connections with others, who together we share so much, and although each one of us with our dementia is effected differently, many times we have many effects that are almost universal among those no matter the type of dementia.

So the gift of being able to share our journey with each other is such a blessing. My wish for 2023 is that no one has to sit at home feeling like they are the only one, that there is nothing they can do, my wish is that we can reach those people and open up this incredible place in the advocacy world, and in the peer to peer support, that all can feel the incredible blessings I have felt, that they can have the opportunity to learn as I have. As this month closes down, I am filled with hope, I am filled with the deepest gratitude. None of us know when or how long before our dementia means much of what we do will no longer be possible so I am trying to maintain as much as possible, busy stretches interspersed with restful periods. Staying connected, staying involved. I think that it is perhaps not unlike most people.

I was feeling as though I couldn’t manage the Christmas season this year, to many losses, but I actually am, I am just doing it differently, I do so much differently because of my dementia, so doing Christmas differently is something that is ok for me, it is about not focusing on “ Christmas “ so much but rather focusing on the people who I miss, honouring their memories, giving room to think about them and all the special ways they filled my life, “ making room for them at the table”, as the saying goes, rather than being sad, yes their will be those moments, yes there will be tears, but those will come by allowing myself to celebrate them. I thought I wouldn’t / couldn’t bring myself to decorate this year, but changing how and what and doing it differently has allowed me to spend this weekend decorating, in a much more simplistic way, lost in beautiful thoughts, the first gift I ever received from my husband, the laughter of shopping with my mom and sister. The moments shared decorating, baking and cooking. Yes the decorating is scaled back, it is reflective of the time I find myself in. I have not committed to anything in particular for this Christmas and that’s how I want it to be, I will let it unfold as it is meant to, no pressure to be any certain way or place, just going to let it be. I think sometimes we think we have to force ourselves In order to get through it, I have learnt sometimes the best things to do is forget what everyone else thinks you should or shouldn’t do and just follow your instincts follow your ❤️, that can be the most healing thing we can do for ourselves.

I hope as we head into the last month of 2022, we all stop, breathe, reflect. So that maybe 2923 will unfold into a gentler, kinder, softer, year for all.

This is my tree this year. The Angel that sits atop the tree was given to me by my mom many many years ago, it is something I treasure.

I have been home for 3.5 days, coming home is always welcomed, there is truth in ” there is no place like home”. I came home to a dog that was grieving, I was gone to long she had thought I wasn’t coming back, so she lost interest in all things, including food, the last three days of here stay with two of here favorite people where difficult, and they could not provide her with the one thing she was needing, which was me. I knew from past experience when my blue Russian cat Mootchie died that animals grieved, for Pheobe really grieved the loss of Mootchie, but I thought she would be fine, as she has stayed with Brent and Kay many many times, its like her second home, she loves them to bits, I am normally only gone for 2 or 3 days though, this trip was much longer. She is declining overall as it is and maybe thinking that I wasn’t coming home was enough to make her decide she didn’t want to keep trying. I am happy to say that since being home, she has returned to eating better than before I left, sleeping more, which she was increasingly doing anyways, but she is happy and has her moments of sheer joy bouncing around the house. Going anywhere now would require someone being here in her home know, fortunately I have no plans barring any emergencies to go anywhere until spring, hopefully by then she will have forgotten this episode. I felt terrible for Brent and Kay and the worry it placed on them as I know to how they love her.

Yesterday was an early start for me with meetings here in town, I sit on the VSAN ( Vernon Seniors Action Network), for round table meetings with community stakeholders as we work towards a age/dementia friendly community. It was a great meeting with great turnout, and I look forward to working towards a better community for all. I was tired but it was important for me to attend. There seems to be no end to the work that needs to happen. Luckily I can home feeling greatly inspired from my CCNA EPLED meetings in Toronto, such a great group, love working with them and all the researchers, some great things happening and its wonderful to be part of it.

During those meetings one of the researchers was explaining how she worries about how much “hope ” we place on things and you could tell it weighed on her heavily. It was good to hear from her perspective the impact we have on them in this regard, it is not something often talked about. This was something I said to her about it, my quote, “I will feel bad if you try and fail, but I will feel devastated if you never try.” (Christine Thelker 2022).

I explained that most of us living with dementia understand there is a great chance that many, in fact most things that have come to the attention of everyone have in fact failed. But we must remain hopeful that some ( and this particular research, Bio med), are looking beyond what was the traditional ways to try to help people with dementia to finding and looking at it through a new lens, that the one size or one pill fits all is not feasible for dementia. I wanted to reassure her not to let it weigh on her too heavy, that we the people living with dementia must have a clear understanding of the boundaries of the hope we carry and where we place it.

This event was days filled with a lot of inspiration coming from everyone who attended and in many different ways on many different levels. These are the things that help me continue to push myself to be as well as I can. Rest is required, trying to ensure everything is set up so that I can manage it. Advocacy work is hard, exhausting, exillirating, rewarding in ways I never thought or had imagined, having a purpose, value, connections. Life changing. Why would I give in to my dementia, why would I not fight to be as well as I can when I have learned and gained so much because of it? It is not a disease I would wish on anyone, it causes many challenging, difficult days, but the blessings far outweigh those at least to this point. the end stage will be the end stage, hopefully I will be gone before I have to live that piece for now I am beyond grateful.

The other great thing that happened and this was the big one, meeting Janet in person, after becoming friends for over 4 years, to having her travel to Toronto and then to Niagara Falls with me, (Janet lives with Alzheimers), to help me in my quest to honour my mom and sister. What a beautiful gift to my life she is, Kind, fun, generous and I absolutely can never thank her enough for all she has brought to my life, not only during the trip but over the last 4 years. I hope we get the opportunity to spend more time together in the future and share more memorable moments. I came home feeling a great sense of peace finishing something that was important to both my mom and my sister and Janet was a huge part of helping me through that. We never know where life is going to take us or what it is going to present us with, but my dementia has brought many great people into my life, that I would have otherwise never had the opportunity to know. More to be grateful for. I have been blessed throughout my life to know so many great people, sometimes friends come and go, sometimes, life itself creates those things to happen, it doesn’t mean those people are any less important today than they were then, life is just ever changing, just like every day is different living with dementia. So I hope I can always just be grateful for what is, what was and what will be.

A reminder if you know anyone living with dementia, get involved, research is a wonderful place to be involved. Reach out if you would like to learn about opportunities in how you can be involved.

Off to Physio have a great Thanksgiving to all those in the USA and to everyone everywhere remember to spread kindness, and enjoy the day you are in and may the weekend be filled with blessings for you all.

So because I have always said I would not sugar coat my dementia, as I sit here this morning, waking to a completely different brain day than yesterday, I have to tell you, that yes there is so many pluses to doing and being snd taking part of things, experiencing and exploring and yes the pictures tell a beautiful story, but the pictures don’t tell of the moments of panic attacks, being overridden from anxiety, which are all fairly new to me, another add on of my dementia and they are difficult to navigate, add I the extreme weather change, unbelievable low with the snow, yesterday ended up being a total wash for me. Not only because of the snow storm, but it created a bad bad brain day, couldn’t comprehend things being said correctly, could not express myself correctly, teary, frustrated and other than a couple walks to try to get some blood flow happening and done good oxygen going in, it was a day of testing in the room.

All of those things were necessary and maybe in part my system trying to tell me I need to build in more rest days/ periods, if participation in events are to be successful.

Today waking to completely clear skies, brain feels calm and clear as well, feel rested so the train trip into Toronto should be lovely, I am looking forward to it as when we travelled to Niagara it was dark so I didn’t get to see any of the landscape. Tomorrow will create another issue for my brain getting up and being at the train to go to the airport by 530 am, which means 230 am in my home time zone, once home I will have to allow for a couple days to let my system resettle again. I would not ever tell anyone that because it is a little more complex to do these things not to do, I would say do them but be aware. Fortunately travelling with someone else who has dementia. She was able to recognize what was happening for me as she has the same impacts at times, but if you are with those who are not familiar you may need to explain and educate as to what can happen how it effects you what you need to do to allow successful transition from those effects to ensure an incredible time for most of the trip. Go, do, live large, get your bucket list going and keep going., just do it will full acceptance and understanding of how to make it successful. In some ways sad to see the end coming, of what has been an incredible time of learning, sharing, emotional, doing things my sister and i had tried to do was a beautiful and very emotional moments, doing it with a friend that I’ve never had the pleasure of meeting in person let alone having a conference and then a holiday with unforgettable.

People often ask why I bother to advocate if we are not paid, but what is payment? If we do everything in Life only if there is a $ amount attached then, we’ll then in my humble opinion we get the kind of messed up world we are seeing at the moment. Sometimes we have to look beyond the obvious, look beyond the $$$, and yes we often receive a gift card of thanks, sometimes some type of remuneration, but not paid in $$$ as most who work do, every hour contributed you receive a set amount of money or contract work. I am always deeply grateful for any gift cards or forms of Thankyou s I get, it truly makes a difference for those living on disability. But I am more grateful for the immeasurable payments I have received that no amount of $ could ever be attached to. That comes in the form of opportunities that if not for my Illness I would never have, opportunities to work on projects that change policies, create changes within groups, influence how things are viewed and seen. It comes in the form of meeting people, incredible people who otherwise our paths would never cross, people from across the country and around the globe, often forming deep and lasting friendships. It comes in the form of being invited to attend and participate in conferences where you get to learn and have input on things that are being done that otherwise you likely would not ever know. I am just winding down a busy fall from Participating in the CCNA’s Science day, which offered me to opportunity to doing a session with the head of the CCNA’s and Canada’s Health Minster, from that to attending the Agewell Conference in Regina, where I gave a 15 minute talk and had many opportunities to meet many researchers, see their work and talk to them about their work. From there on to Toronto where I have attended the CCNA’s first in person meetings of their cross-cutting EPLED team, of which I am so proud to be part of, incredible days spend with researchers, building connections with those we have only ever met with via zoom.

When I think about all that was packed into those events, when I think about the richness brought to my life through those, when I think about the impacts and take always of those get togethers it’s overwhelming. I can’t emphasize enough about the value added to my quality of life through it all, the relationships, that carry on and the first moment of deciding to get involved after diagnosis to want to help make a difference for others. It was getting involved that brought relationships that have lasted and build year after year, these are important relationships, it is a community of people who truly care not only about the work they are doing but caring about each other in deep and personal levels, beyond the work or contributing things you bring. It is deeply gratifying, meaningful. It is something that I cannot emphasize enough for others people diagnosed, so important to find that place where you contribute to whatever level you can, for caregivers, these are not support groups, this is working to make a difference. So many people don’t understand or have a completely ( I was one of those at one time), misconception about what research is, who researchers are, research scares many but if you get involved you will see and look at things through a whole new lens. Research matters. I have had the opportunity to work with some very incredible researchers, and they want to work with you, people with the lived experience, care partners, you are the link to them being able to do the work we the people with lived experience need them to do. They are not scary, they are as real as you and I, they are kind, caring, giving, warm people. I am so honoured to know them, I am grateful for the incredible work they are doing on things that do and will add value and quality to the lives of so many. I believe fully that working with other living with dementia and care partners, as well as everyone doing the research at universities and hospitals around the world, it has not only improved my quality of life in real time, it has I believe been the reason I have been able to help slow my progression, it has contributed to my well being that absolutely no $$$$ ever could. If you would like to get involved please reach out, no matter where you live, we will help get you connected to the researchers. There is many types of ways to be involved to whatever degree you feel is a good fit for you. I know I am forever grateful to Dementia Alliance International for introducing me to the world of advocacy.

Monday will be seeing me fly home I have had a tremendous time, it will take time to fully process it all. I am beyond grateful.

I am happy to say that after a number of very quiet days, with sleeping and letting my body rest and recover, I am ( I was a little apprehensive that I may not be able to go). but I am readying myself for my trip to Toronto, leaving tomorrow morning and back on the 21st. My doctor understands the importance of me doing these things, but he has also gently suggested that maybe after a very difficult year especially that perhaps I could give my body down time over the winter. Which I will do as I have nothing on the calendar until likely the end of April. I can’t wait to see those I have met before and to meet for the first time many, who I have only had the pleasure and priviledge of seeing and working with via zoom. I also have a very special guest joining me for the conference, we originally met through my blog, then see joined DAI and there was a start of a friendship that has grown for over four years, she will also travel to Toronto and we will meet in person for the first time tomorrow evening. It is going to be incredible, it is an important meet up, we are both aware that for those of living with dementia/Alzheimer’s, we as (people without illness should learn to put more thought into) is that we don’t know if we will get the chance again. The conference is also of great importance to me for so many many reasons, the connections, the work we are doing, the work we want to continue to do, with everyone at the CCNA, our EPLED team is a great group of people and seeing them in person will be life changing as are all these connections. I believe every time we make these connections our lives become richer, we grow on personal levels, those connections for many of us will last long beyond the work we are currently doing.

I have been busy preparing my little dog that she will be going on a holiday to Brent and Kay’s and that I will be home before she nows it and then we will have the winter to just snuggle in. I know she is always happy there, although the older she gets the less she wants to be anywhere but home, but it is a second home to her and I am so grateful that they enjoy her. I keep telling her time for her to have a break from her crazy mom… she always knows when I am getting ready for a trip and she always needs to know whether it is a trip we are doing together or if she is getting a holiday of her own.

Below you will find the link to a write up by Fernando Perez I am so honoured to have the chance to work with Fernando and his counterparts, on a very exciting project, more to follow in the coming months, so stayed tuned for updates. I am so impressed by Fernando, his story in and of itself is one to be heard and shared so please, take the opportunity to learn about Fernando and his story. I can’t wait to share more with you all, but I am truly honoured to have been asked to walk along side Fernando and the rest of those involved. another example of how sometimes we don’t see whats just up ahead, life is hard and at times you feel so alone, but truly if we open ourselves up to becoming involved, the connections we make mean we are never truly alone.

So I am pushing for one more good year to do things I want to do, to take part in the things that are important to me, yes it’s easier to give up and give in, in many ways, but I am not a quitter, never have been, don’t want to start now. When it is time for me to be done, I will for sure do it and do it willingly because I will know within myself and I will be ready, but the rest of 2022 and for 2023, I am not going to let my Dementia define me or stop me if I have any say in it. I may have set backs like my recent TIA, but like my doctor says, will a big stroke happen one day, in all likely hood yes, the TIA’s are telling us that, but what we don’t know is if its 20 minutes, 20 days, months or years from now, so until it happens or until I feel inside myself that it is time for me to stop doing what brings happiness and joy to my life, I will keep on doing it. Life is too short, I won’t let a set back or two stand in the way, I will just to a rework of and how I am doing things, but I will go, until I am stopped or until I feel it is my time to stop.

Enjoy your weekend everyone, I will bring updates if I can while I am away, if not until I return, find things that make you happy and do that.