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.
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.
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.
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.
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.
Till next time, I hope you all think about how truly special you are and walk through November Bravely.
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.
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.
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.
It’s been an early start here in Regina, last nights events were wonderful, meeting so many for the first time face to face, human connection… so many great great hugs, I don’t think we hug enough. Ending the evening with a lovely dinner and conversations.
I started to write this blog on my first day in Regina at the Agewell Conference, however, I never got back to it, in part because as a person living with dementia, and in talking to many others, even for them, it can and is quite overwhelming. These conferences are busy, we tend to put a lot of stress on ourselves to present well, whatever it is we are presenting. Our stories matter, our perspectives matter, so we not any one else the pressure is and does come from within, because we understand the importance of our involvement. We are always aware that our advocacy work is not about us, it is about the many others who we are speaking for.
So this morning I am back home, my little dog Pheobe, having a sleep in, so I am taking the time to write and catch you up on my thoughts now that the conference is over. I will put some pictures here and there from the event.
Travelling alone through Airports is becoming more of a challenge, getting help is always a challenge, somehow they think you should only require help if you need a wheelchair. It is difficult and frustrating when you ask for assistance to get where you are going, and when you say no you don’t require a wheel chair, and try to explain that you have early onset Dementia and need guidance to your gate, they look at you and say well “just follow the signs. You then have to explain how all the noise and people etc. overwhelm your brain and then you can’t “just follow the signs”, its exhausting sometimes living with a mostly “invisible illness, sometimes I feel like wearing a shirt that says, “I have dementia, please help if I ask.” Upon arrival into a waiting Taxi, the taxi driver a lovely young man, who along with his wife and children, had only recently moved too Regina, to try to build a better life work balance, where they could work to live not live to work, I really enjoyed the conversation with this young man. Once at the hotel he wrote his cell number down, told me if I needed to go anywhere just to call and he would come get me. Service at its finest, little did I now a short time later how important that little piece of paper would be…checked into my room, getting myself settled and organized for the coming days, laying things out to ensure success, and suddenly, I can feel the panic rising, the anxiety coming on, oh dear God, I have lost my envelope with my speech and all my important papers for the conference… this is when my brain becomes overwhelmed, can’t think, panic, absolute panic, tear everything apart nope its gone, before the anxiety overtakes me, I head out for a walk, which I have taught myself to so in these moments, walk and just breathe, let my brain settle and quiet stop the panic. I realize at some point trying to travel alone will not be possible. Once I am feeling more like I can process and make a plan I walk back to the hotel. Then it hits me, maybe I left it in the Taxi, as I had to look up the hotel I was going which was in the envelope, the phone number, find it, a frantic call to the young taxi driver, ah, yes he says, I have it right here and I will just finish with this passenger and I will message you when I get to your hotel. True to his word, I went and sat in the lobby, terrified I would somehow miss him, he arrived with a big smile and I hugged him. so often we can never retrieve things lost in the world of Taxi’s. He told me to text him whenever I needed him during my stay, and he was sitting waiting for me yesterday to take me back to the airport. Tremendous service by this young man, I passed his number on to others, I will tuck it away in case I get back to Regina, which by the way is a lovely City, they did a terrific job of hosting all of us. And wow great restaurants, just wow. I don’t get the opportunity to eat out often so I really enjoyed the exceptional food and service while there.
At the first nights welcoming event, the first person, I was to see was Paul, who I have known, via our connection through DAI’s support groups and then working with various groups and organizations, Research Groups like Agewell and CCNA( just two of many), but we had never met beyond Zoom, and we literally collided, I will try to upload the video, we were lucky enough someone captured it. That started what would be days of tears flowing, moments of pure joy. If there was ever any doubt about the importance of personal interaction and connections, this event showcased how impactful it is. Not just for those of us living with Dementia, but also for the researchers and others that we work with but seldom get the opportunity to come together face to face with. This work, these connections, the work we do with these research groups and organizations are, as we discussed a lot over the time in Regina, the things that help us stay as well and vibrant as we are. I wonder at times if others understand the importance of staging engaged in these ways, it is mentally stimulating, socially engaging, which all help our brains, yes we tire easily, yes we need days to recoup sometimes, yes we have to deal with the issues of becoming overwhelmed, confused, fatigued, but the benefits out weigh all of those things. And if we learn to manage all the effects of those things, then we can and do stay overall much better and I believe help keep our illness at bay for longer. We talked at length about it and everyone with dementia at the conference felt the same way. So please look at getting engaged.
I am also including a picture of a book, funny how it becomes so apparent at how fast my brain forgets things now, I do things, often feel like I am doing nothing, because I simply forget, and this book, which by the way my talk was on Autonomy and Independence. I was presented this book with Thanks for helping and participating in the making of this publication, I of course had no recollection in it at all, another reminder that my illness is truly invisible, apparently to me as well. I laugh about it because i am always so truly surprised when I hear about things I have been doing, and I look stupefied saying..REALLY???
This morning waking to what is the first taste of chilly weather, sweater weather, fuzzy warm socks, a sign winter is suddenly fast approaching. I have decided with only 15 days until I head to the CCNA Conference in Toronto, it is time to get a couple pots of soup on. Fuel up on good nutrition to help keep me going strong for a bit longer.
So although I am tired and I feel the fatigue, I am also, inspired by so many from the conference, I am filled with hope for all the amazing work being done, filled with gratitude for the opportunities offered me, for the connections, and oh my all those amazing hugs.
This is how I have described myself in recent days, I have tried to explain that I am “Life tired”. Sometimes it’s hard to explain, or for someone to understand, too many years of too many traumas and losses, have left me exhausted. The loss of my sister has brought it all to the surface. Yesterday, I spent the day going over the years and realized that it is not a wonder that my health took a hit, I wonder at some moments how or why I am still standing. I won’t go into details about all the losses or traumas associated with them, just that there has been an extraordinary number of them and many consecutively, all of those things I have realized have made me life tired and then this morning I woke up to the picture and piece below, which seems to perfectly describe me in this moment of time. A moment of time that I fully realize will change as life is fluid, ever moving and ever changing even if it seems we are standing still. I am giving myself permission to accept that this is where I am, to do what I need to do to promote my overall well being, in all of that it means if like the other day as I made applesauce, suddenly the tears just started to flow, to just let them. Life is hard and sometimes we keep going because thats what we have to do, but then one day, you are given the time to reflect deeply, come to see things through a different lens, have a deeper understanding. I don’t know the why’s or how’s of what makes some have a life full of trauma’s, while others appear to have a life filled with nothing but glorious moments. I have just learnt to accept that we are all given our life and it plays out as it is meant to, it makes some hard, some greedy, some cold, some with the warmest of hearts, and it doesn’t seem to matter where in it all you are, some who have what it seems is everything are cold, bitter and angry, others who have had nothing but hardship and tragedy are the softest, kindest warm hearted people you could meet. No reason to it it seems, at least not a reason that is easy to understand. So I try not to, I try to accept, I think there is bigger powers at play, so for me accepting, acknowledging helps me continue on, without that I surely would not be standing today. I try each day to be kind and caring, to be non judgemental, because just like me everyone has a story, and what you see in a short interlude with someone, does not give you a true understanding of them or what brings them to be as they are today. I also want to say that for each of us ending up life tired can come from many different things, not just loss and trauma, but even things like our last few years of pandemic, uncertainty everywhere we look, with rising costs, housing, health and many other systems in crisis, global out look that is not pretty these days, crime, on and on it goes, those things can make one “life tired.” It is ok, to admit you are tired, it is ok to slow down, to rest more, it is ok to admit it, we are not meant to just “suck it up” to be ” tough” to ” get over it” we are meant to acknowledge and feel what we feel, so make room for those around you to do that, don’t try to fix it, don’t try to make them feel better, acknowledge and allow them to be where they are and allow them to move through as they need to, help if and when you can, not because you have a never ending need to fix everything and everyone around you. We are all broken in some manner, we have all perhaps allowed society to push us to push through rather than allow ourselves time and space to do what we need as we too. I am sure it is why I am always looking to be in nature, to find the peace that resides there.
So for now for as long as necessary, for as long as I am “life tired”, I will continue doing for myself what I can to honour myself to honour my mind, body and soul. I will remain doing the advocating I do, its been a busy stretch, but a good busy, and last week I was honoured to present at the CCNA’s Science days, along side and with our Canadian Health Minster Jean Yves Duclow and Howard Chertkow Head of the CCNA. I am proud of the work I am doing, I am proud that despite my dementia, I am continuing to do what I can to make a difference. This week sees me heading to Regina tomorrow to take part in AgeWell Conference, then on returning home I will start to ready for my CCNA Conference in November in Toronto. All of these things keep me moving in the forward motion, reminding me that I am still here, still standing, still living. I am so excited to meet so many in the next week that I have only ever met online so to meet in person and have that human connection will I am sure feed my tired heart and soul, and then to look forward to more connections in November, will I hope leave me less life tired as I move into 2023.
I hope you enjoy this piece below, I love following her, I find she really resonates for me. after that I will talk about my other topic today A Call Out.
I’ve tossed and turned in bed for hours, yet still I’m listless for reasons that even I can’t understand. My body is tired, yes, but it’s so much more than that. There’s something so much deeper than I don’t think sleep will ever remedy- Parts of me that are far below the surface cry out for rest and solace… The restlessness that pervades the darkest parts of my soul has been quietly growing for some time, and now, it occupies my thoughts more than any other. I’m not unhappy or sad, but there’s just this silent angst that I can’t quite put my finger on… I don’t know how to ease the stirrings of a spirit that needs to be calmed. I’ve known for some time that I need more in my life- more of the things that bring me joy and fulfillment and less emptiness from the people and things that don’t move me. It’s not a simple cure nor an easy fix, but I know that I need to seek the adventures and activities that make me come alive- My deepest truth is that my passions are painfully dormant, and I need to spark those fires that have been calling out to me for as long as I can remember. So, as I lie there in the darkness of twilight, my mind races with a thousand thoughts of the things I know I need, the people I need to find and the places I need to go- Maybe that’s the answer to my listlessness or perhaps it’s just a start. I can’t honestly say that I know where my path needs to go, only that to stay stagnant any longer will tear me apart. As I drift peacefully off to sleep, my mind is full of the thoughts of a heart set on fire, And I feel the faintest smile creep across my face. Maybe I don’t know where I’m going or even how to get there, But with love in my heart, fire behind my spirit and hope in my dreams, I know that I’ll end up just where I’m meant to be. Happiness. I can’t ask for any more than that. |ravenwolf I’ve tossed and turned in bed for hours, yet still I’m listless for reasons that even I can’t understand. My body is tired, yes, but it’s so much more than that. There’s something so much deeper than I don’t think sleep will ever remedy- Parts of me that are far below the surface cry out for rest and solace… The restlessness that pervades the darkest parts of my soul has been quietly growing for some time, and now, it occupies my thoughts more than any other. I’m not unhappy or sad, but there’s just this silent angst that I can’t quite put my finger on… I don’t know how to ease the stirrings of a spirit that needs to be calmed. I’ve known for some time that I need more in my life- more of the things that bring me joy and fulfillment and less emptiness from the people and things that don’t move me. It’s not a simple cure nor an easy fix, but I know that I need to seek the adventures and activities that make me come alive- My deepest truth is that my passions are painfully dormant, and I need to spark those fires that have been calling out to me for as long as I can remember. So, as I lie there in the darkness of twilight, my mind races with a thousand thoughts of the things I know I need, the people I need to find and the places I need to go- Maybe that’s the answer to my listlessness or perhaps it’s just a start. I can’t honestly say that I know where my path needs to go, only that to stay stagnant any longer will tear me apart. As I drift peacefully off to sleep, my mind is full of the thoughts of a heart set on fire, And I feel the faintest smile creep across my face. Maybe I don’t know where I’m going or even how to get there, But with love in my heart, fire behind my spirit and hope in my dreams, I know that I’ll end up just where I’m meant to be. Happiness. I can’t ask for any more than that. |ravenwolf
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So part two of today’s writing, I have been struggling to write lately, likely because of being life tired, as well as having to really space how much I do and when I do it, overloading a day of too much, means days of doing nothing, my brain, my fatigue hits harder, so adapting and zeroing in on what is important each day and being content if it only is one thing.
Today I want to do a call out to all those living with Dementia, all those loved ones of someone living with Dementia. To get involved, to use your voice, to help get the changes made. We are I believe in unprecetented times, and we are at risk of having the progress that has been made fall to the wayside if we don’t keep at it. I know we are hearing and seeing much about how we need to change what and how we are advocating because years of doing it the same way are not getting the results wanted or soon enough. But if we are to do that then we need others to step out of their comfort zone, step into the world of advocacy, research, as without fresh ideas, and for those of us who have been advocating for an number or years and some for a very long time, to embrace the new ideas, be willing and open to trying new ways, giving room for others to shine, remembering that if they shine if some of the new ideas or ways move things forward, then we all win, it is not about us as individuals it is about the greater good. It does not mean that those before us failed it means they have paved the way, shone the light, been the beacon. There is so much work to do, there is not room for “self ” in it. Except in the sense of self satisfaction to know you are doing something that you can feel good about.
It is vital, that we have fresh perspectives, fresh ideas, for we are all fighting an illness that charts a course of its own, none of us know when it will suddenly take off and we will no longer be able to continue doing what we are doing. Without you stepping up, everything will eventually stop, all the great strides made, all the changes ( even if they seems small or not enough), will be for naught, without you stepping up. You may feel is if you have nothing to contribute, as I once did, sometimes I still feel what I contribute isn’t enough, but I have learnt that whatever I contribute is better than doing nothing. I have also learnt that there is so many great people and opportunities that one doesn’t now exist especially when in the world of Dementia we are all faced with having so much taken from us, that to actually find this place where we are accepted, valued, encouraged and given opportunities to contribute and meet so many fabulous people, that we end up with a life that is vey rich and full and gives us a focus that is beyond, the losses and sadness that prevails in the dementia world. So I encourage you to get involved, don’t sit at home or let your loved one sit at home thinking their life is over. Life has you knew it may be over, but a whole new chapter awaits. Please come help us carry the things forward, we are waiting for you.
And now I must get ready for my Doctors appointment, not sure why he wants to see me, but not surprised either, I am very fortunate that he stays on top of things with me so well. Then home to get packed ready for my trip tomorrow. Hope you all have a great week.
I haven’t written again for a bit, too much going on, my mind overwhelmed with life stuff. Today I just finished my appointment with the speech pathologist, my ongoing issues with my voice disappearing, vocal abilities, so was surprised that it was an hour long appointment, but I have been waiting 2 years. So ongoing appointments and work with him to try to help keep my voice going for as long as possible. I am thankful that my doctor persists until he gets me what I need. I am very grateful, given the state of our health care system at present.
I spent Thanksgiving with my brother and my late sisters family, the first Thanksgiving without her, it was hard, but everyone managed, and with about a half an hour or so left of cooking time, we lost power, but once that was all sorted we were able to pull off dinner, may not have been as it has been in years gone by, but we were together and that mattered.
It was lovely going for a fall drive, these are some of the photos, I kind of felt like it might be the last trip Pheobe is able to make, so I tried to make it fun for her. the picture of the mountain is the mountain where my sister lived.
The other thing is advocacy, recently and as so often we talk about why we keep advocating when little seems to change, but I believe we are making changes, however small and even if just one person at a time, any difference we make, any influence we have, is worth it.
There is another side to it as well, it is the connections we make, the people we meet. How it provides us purposeful and meaningful things to do. It gives us a reason to keep going, it stops me from just giving in and letting it take me. Maybe nothing will change in my time, but if we have made a difference to one person or to each other, because we have gotten to know each other then that is reason enough for me to keep advocating. I can’t look at the what has and hasn’t happened too much or if it has happened in the way I hope it would. I have to focus on the positive pieces it brings to my life. I have met people from around the world, I cherish each person and the relationship that became because of advocating. I have the utmost respect for the advocates who came years earlier, some who are still advocating, I understand and can at ti es feel frustrated that things aren’t happening fast enough, the clock is running for us, we know it, time is of the essence, sometimes we wonder if anyone else out there wonders about the pressure we feel to try to bring about change, before the disease takes away our ability to continue using our voices, whether literally or by other ways of the disease progressing. We all want change in real time, in our time, I try to remind myself that if at the end of the day I can have a small part in making sure change happens for the many others who are yet to be diagnosed, then my time since my diagnosis has been well spent.
I am exhausted all the time it seems, life is taking its toll, everyday things are harder for me, I hide it well for the most part. But I know, I can feel the differences the changes. I am ok with it all, life is life, we get what we get. I have tired to navigate it with as much grace as I can, I try to keep my hard hard days hidden away so no one has to see them. It is not always possible but I try. I am making incremental changes as I go along, trying to ensure that I continue to make adjusts that make my day to day life easier and simpler, less to look after, less clothes, less belongings, less of everything, so that what energy I have in a day, and it disappears quicker all the time, that energy can go to the things I enjoy, finding joy in simple things, finding in joy in the connections I have made, finding the joy in my advocacy. I hope one day we can all have the resources we need, that we can have people be willing to learn and understand, but I think as more and more young people get diagnosed those things will change. They will have too.