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

November Winding Down

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.

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

Retrospective

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.

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

No Escaping It… Dementia That Is

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.

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

The World of Advocates

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.

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

Never Walking Alone

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.

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

Fading Away

Photo by Hakeem James Hausley on Pexels.com

Fading away is how I described how I am feeling about myself at this time. Like I am disappearing, both physically and cognitively, like my person, whole body and mind are shrinking and disappearing. I never like this before since my diagnosis. I have felt the changes, felt myself becoming someone different, somehow different than what and who I was, but I never actually felt like I was disappearing, but I feel it now, it doesn’t feel bad but it means I am moving into a place where I must spend the time putting finishing touches on my future plans, especially given that I want to leave this world without ever having to go into care.

Photo by Nadezhda Moryak on Pexels.com

The above paragragh was written yesterday or perhaps the day before, today is another day another indication of changes happening. I have had events in the past where it has caused significant damage and I have suffered concussions along with many bumps and bruises, without having any recollection of how or what happened. Those events are frightening, not during because I don’t know they are happening or even what happens, and living alone, no one knows. but the evidence that something has happened is clear. Today, was another day of evidence of something happening sometime between late yesterday afternoon and my waking and getting up at 4 am. I new I didn’t and don’t feel right, but I stumbled about the morning as best I could until I wandered to my hair appointment and my hairdresser bless her heart, new I wasn’t right and then discovered the big lump and injured area at the back of my head/neck, she wondered if I had had bad fall and injured my head/neck area, but nope I am not aware of anything other than I thought maybe I had slept wrong because its quite painful. My head and vision is not right today, my left side of my face is numb again, off to the doctors and going back again at 430, also my face once again has a red rash, and I have no memory of what has happened. Likely a TIA, but the doctor will decide what and if anything else needs to be looked at, if another TIA, well I just live with them as part of my vascular Dementia and it will settle out until next time. Although because I am leaving soon for the convention in Toronto, it means ensuring the doctor and I cover our basis so that I can hopefully still manage a good trip.

Normally, it doesn’t bother me but for some reason this time it is, at least, in the respect that I don’t remember what happens, I wish I knew what happens to me. Forgetting things as fast as I do them is one thing but actually having events that do damage physically, with no recollection is different. I can’t explain it, at least not in a way that would likely make any sense. Maybe its because my greatest fear is to have something happen that leaves me incapacitated enough to need some kind of care, but not enough to just have life end. I do think thats why it bothers me so much, the unknowing, the inability to manage it. I have worked so hard to maintain as well as I have but these reminders are frightening.

Back to my original start of this post, fading away, or disappearing,, feeling suddenly small in the world, feeling inadequate in many ways. Doesn’t matter how much I do, I look around and I see people who don’t seem to be disappearing, so I am sure it is all to do with my dementia journey, it’s another piece of this ever changing landscape within my world of dementia.

J

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

A Day filled With Tears

This has been a strange time for me, I have been blessed lately by having people I have not seen for some time, pop in for a few or days or just a few hours. They are all cherished, I don’t entertain or do the things I once did, the many changes my dementia has brought about becomes more evident all the time, even those who see me a little more frequently see it more now, it has changed me, changed my abilities. My routines have become important. All of this is ok, this is life with Dementia.

Last night I had such vivid dreams, dreams about so many who are no longer with me, about my life with them. I woke to a tear soaked pillow, and a the puffy eyes that tell the story. I was relieved that I was not expecting to see anyone today. I spend a quiet morning, a lot of tears flowed and in the midst of tears flowing, I managed to put together a batch of muffins, rhubarb muffins as I thought about my friend Roger, I would never admit his Rhubarb Cake he used to make me, so I made Rhubarb Muffins, it was good to do.

Somehow the day flowed from there to making my mom’s and grandma’s German Red Cabbage, a roast cooked, wow a lot of tears flowed, I talked to them all, my husband, my mom, my sister, friends, and as I was working in the kitchen and then cleaning house, tears in free flow, I realized that I have actually and am actually finally taking the time and that my body is finally releasing years of grief, grief that I have kept inside, oh I grieved, but not fully, there was always responsibility that had to come first, so you just dig down, keep going and going. It makes me think about how all that accumulation of not taking or being able to take the time to properly grieve, likely had a lot to do with my accumulation of health issues resulting in where I am today, living with vascular dementia and all the other complicated issues with my health.

After I had cried myself out or at least for today, and the house was sparkling and dinner for the next few days ready, I headed out, I needed to walk, be alone with my thoughts, its been a busy busy stretch, more business coming so taking the day for me was important.

When I left home, it was windy and something between hail and snow, but the air felt good. Once I headed home from downtown, with my bag of frozen fruit, ( I eat two cps of berries every night Blueberries, blackberries, and Raspberries), Good for my brain, and I run out and didn’t have any yesterday and although I did go out to get some, I couldn’t find any, so today I went in search again because I really missed having them last night. I can’t imagine having to live in some kind of care place, because those kinds of things that are so important to someone they never get. Anyways, thats a whole other topic. I found a big enough bag to get me through a few days, hopefully by then my usual place will have a new supply in. Sorry for rambling, lost my focus, back to the day, after putting my berries in the freezer out the door I went for a longer walk in the other direction. This time the sun was out, it was actually quite warm, so I strolled, looking at all the fallen leaves and the beauty they hold. It was a long walk and by the time I had looped around to come back home, you could see the storm clouds moving in, and the temperature changed. Thankfully I made it before the snow started to come down.

Happily snuggled up with my little dog, I decided I better write this because with this heavy snow falling ending up without power is quite possible.

I consider myself lucky as far as my dementia goes, I have with a lot of hard work on my end and that of my medical team, have had it get worse in manageable steps. I am aware that may not always be the case. But doing things like finally allowing myself to let years of grieve surface and not stuff it down inside, will likely help. We are taught to suck it up and get up and keep going and often we pay for it in ways we could not see coming. I am actually ok, just acknowledging and accepting. where and what I am managing right now. Please take care of your whole self, don’t try to tough things out. Surround yourself with people who will give you the support and space and time to move thorough life’s events in ways that work for you.

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

November has arrived and its Time for some Rambling Thoughts

Another month has gone, the year is somehow slipping by at what seems like record speed. It feels like I am running out of time do to all that I want to do. The day is over as fast as it starts, perhaps because my sense of time is no longer there, maybe its because I am aging. I just now I feel or I seem to be putting pressure on myself to try to do and put together the things I want to finish in this life time. In reality none of it matters, but I think about it, even though I know right here and know is all that matters. Maybe it is the changing of the seasons that have me thinking about all this.

The Other piece for me is the silliness of what my brain is doing these days, although it is offering me the ability to spend time laughing at myself. It’s like in one moment I have convinced myself that I am perfectly fine, my dementia must be a mistake, then hours later wandering about the house, saying to myself ” what the hell is wrong with you! Why do you keep forgetting to put your nitro patch on, or take your pills, or whatever is I have yet again realized I have forgotten, and then in a fit of laughter, as I sit on the edge of the bed laughing at myself and telling myself ” well you dumb ass you have Dementia, so why are you wondering why you are doing these things? the never ending bewilderment of my brain. Sometimes I think it likes to play this game with me, or am I playing with it? One minute I feel perfectly ” normal “, although there really is no such thing, then the next I realize I am boiling the kettle for tea for the 5th time, because I keep forgetting that I want a cup of tea. Why talk about this or bring it up, you wonder, because it is very much an every day part of my life living with dementia. My journey is not the same as anyone else’s, each one of us wander through it differently, but often with many things that are quite similar. If by talking about it, myself and others being open and vulnerable about it, hopefully one day others will have a deeper and better understanding.

i am feeling excited and hopeful right now, because I have been having a pretty good stretch, minimal brain fog, minimal pain. My balance and coordination are holding steady, sleep is pretty good, my vocal issues are sorta stable, but not really, but the speech pathologist and respiratory therapist are trying to help with that. I think my doing my exercise program at home, my dance routines, along with all the other things I do are really helping to give me this good run. the end of 2019 and throughout 2020 and 2021, were tremendously hard, being in and out of hospital, spending so much time in bed. Those times always make one wonder if it is the start of the decline into the later stages, or if all the complicating health related things will and are overtaking and that there won’t be a come back, every set back the comeback takes longer and is harder. It takes courage to keep fighting sometimes we or I question why i do, other days, like the days I feel like I have a lot to give still, a lot to do, that I can still make a difference. Knowing that most with dementia end up losing life to complications or other illness also makes one look at things a little differently. Anyways just a lot of the rambling thoughts that go on.

There will come a time when I will stop writing my blogs, I will stop my advocacy work, that times comes for all of us who are advocates, when we must just finish living out our lives, but for most there is things we want to see through, finish. We still like to accomplish things, we still want to be productive, valued until that time. For me I want to really work on mentoring others, getting others involved, so that as those of us who are and do advocate, retire so to speak, ofr wind down, from the advocacy world to spend our remaining time with our family and friends we or I can knowing that I have done my best to ensure that others are ready to take on the business of making a difference. I am not sure yet when I will stop but I know at some point it will. I encourage others to step up, write, use your voice, you will not only help yourself, you will help others and you will meet some very incredible people along the way. You don’t have to “know how to” , just do it, just be yourself, give the gift of yourself to others.

One thing I have learnt through this whole last 8 years is that those who give from their hearts, those who open themselves up and share their stories have taught me more than I could have ever imagined. Their stories, their vulnerability and not just with dementia, many times just about life and life experiences, those things have opened me up to look at things differently, think about things differently, have a deeper understanding of things and people. Everyone has a story, everyone has something to share and give.. be brave…your story matters.

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Till next time, I hope you all think about how truly special you are and walk through November Bravely.

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

A Special Community

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The last couple days As I have income to realize I am in this place of wintering, I have also enjoyed the opportunity that it has given me to be think about things uninterrupted. The noise of the every day, the noise of the world removed and just clear thoughts. It gave way to thinking about this walk with dementia I have been on, it’s my eighth year walking along this road. A road that caused me to change my perspective in many ways on many things in life, what’s truly important, where my time and energy is spend and on what. It changed my view of what life was really about and for.

Yes, I have always advocated for others, always tried to give of myself to make others worlds a little brighter, and I will always be proud of that, never having or putting an expectation on anyone for anything in return. But I also lived a life of caught up in the world of having all the stuff, nice clothes, nice car, nice home, nice furniture, that materialistic world, that world that our commercialized society has taught us we must have and need. What it doesn’t teach us is that one instant it can and often does change, one instant like a diagnosis or illness.

Working through those losses and changes, coming to terms with a life that is stripped bare, and putting it back together, completely different, a rebuild. It is not easy, in fact admitting how difficult and scary it is, is not easy either. As we try to portray “ living well with Dementia”, but living well with dementia, comes through much hard work, determination, grit. Accepting the hard days, sometimes weeks and months, being willing to admit sometimes we need help with certain aspects of things. Maneuvering the sometimes daily changes, in how hoe dementia is impacting us, the exhausting work of it all. Doing it all so we can “ live well despite our dementia”, because one day well lived is a win, because once we have been stripped to the core, overcome the fear, we understand that to be here, to have this day, to enjoy, in whatever capacity we can.

If I can put my finger on the thing that has helped me thrive through this dementia journey it is simply the “ Community of People”, I have been blessed to come to know since my diagnosis. Through my work and involvements with groups like Dementia Alliance International, Dementia Advocacy Canada, CCNA, AgeWell, and others, it is here the people, the friendships, the connections, the sense of community. That community where we feel safe, cared for, respected and accepted. I am also blessed with however increasingly small circle right here in my own community a circle of those who truly also provide me with support, caring, and they are immeasurable to me.

In the Advocacy world, we share much respect for each other and encourage each other, friendships that span the globe, it is amazing how deep that runs. The immense pride we have of and for each other, the encouragement we give each other as we together try to change the worlds view on Dementia. It doesn’t at times seem like others who are outside of that world can understand it. We have often heard that they don’t think the relationships can be “real”, but they are the most real I believe I have ever been part of.

I am grateful for this community, for these friendships, as I am all the relationships I have, for without having found and becoming part of this very special community! I believe, this disease, my dementia would have overtaken me. I believe with 100% certainty this community of people that work and live and take part is one of the best gifts I have ever received. I am grateful to and for this incredible community.

We have recently lost a dear friend and advocate Roger Marple, and the loss of Roger, who I was blessed to have as a friend, and how the loss of Roger has been felt around the globe, speaks to and reminds us all of how truly special this community is. RIP my friend, you will forever be with us. Thank you for the friendship and for all you have done for all in the dementia arena.

I will leave you today with this great photo of Roger and I having fun here in Vernon.

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

A New Word Today: Wintering

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During a visit today that I forget was going to happen, feeling so fatigued. Not sure if I would make it to lunch time without having to go back to bed for awhile, instead an interesting visit and conversation.

We talked about how as a society we don’t allow people to be sad, that people often mistake being sad with being depressed, one of which is a clinical illness. Being sad is often a normal response to life events. We moved society to this quick fix regime for all life events, instead of allowing people the time and space to move through events. It would be a normal response to “winter”, at or during difficult or sad times of our lives.

I love this term, Wintering, it seems somehow kind and caring which is what we should offer people during difficult times, rather than telling “them to get over it”, or “get on with it” or “that it’s over”, these are phrases we often use, “pull up your socks and get going”. These kinds of things to nothing to actually help someone. It actually worsens things by putting expectations on them or implying that there is something wrong with how they are managing something, based on our own unrealistic ideals. The unrealistic ideals we place on people have and are becoming very visible in the number of people undergoing Mental Health Challenges.

I am talking about this for to reasons, one I am in a phase where I am wintering, this year has been extremely difficult, to many losses, yes it brings sadness, I want to be allowed to move through the sadness, and it doesn’t mean I am sad every day, but I have moments in a day and somedays I am just sad, so I am “wintering”, doing what I need to do to care for myself, scaling back on some things, doing other things differently, more rest, more down time, more sleep. I won’t allow anyone to tell me I need to do or manage in any way other than the way that is best for me, and if a year of loss, means a year of wintering then thats what it will be.

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The second reason I am talking about this, is because we are and have been in difficult times the last couple years and no end in sight, and not just them pandemic but the whole state of our world. No one feels particularly confident about the supply chain, the cost of living, wars, fuel, housing and medical situations and it is a global issue. People are on edge, stressed, angry, behaving in and with behaviours that we have and are not used to seeing. In all of this is the Mental Health issues many are facing. Maybe some would rather call it cacooning, many feel that we should move beyond these things within days and weeks. I wonder if we wouldn’t offer people the opportunity to “winter” if we might not help people in and with a more positive outcome than by continuing to but unrealistic expectations on people.

I am including the name of a book about Wintering here which I have ordered for myself.

Wintering: The Power Of Rest And Retreat In Difficult Times :

by Katherine May

This is also what we do with many living with Dementia, when we see them behaving in ways we don’t think appropriate, we use pharmaceuticals to change them, to sedate them, rather than look at what might be really going on. Many with Dementia are treated for depression, I question is it truly depression or are they exhibiting a normal response to abnormal things happening within them and to them. Are we recognizing that they too may need to ” winter” as they move through the never ending changes as changes occur in their disease. We are quick to try to medicate everything, the quick fix ideals are proving that they don’t work. Maybe we need to create spaces and places for those of us living with dementia, that allow us to just be instead of trying to make us fit into someone else’s ideal of what and how we should be.

So I hope we can think about the terms/phrases we use, language is important, and stop trying to put everyone into the same box. Not everyone will move through life events as we will or do. No matter what the event is let’s try to support people in ways that promote wellness, mental, emotional and overall wellness. Space and Time, Rest and Quiet, Heal and Recover.

I hope you all take and do whatever is best for you as you encounter life events.

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