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Christine Thelker © 2020 Dementia For This I Am Grateful

The Ferris Wheel of Life

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We recently have had some big discussions in our various groups about what I refer to as the “Ferris Wheel of life”; as we go through life we all have things we face and we have decisions to make along the way about whether we acknowledge and deal with those issues, or we keep running from them, trying to escape them, like trying to get off the Ferris wheel that won’t stop for you.

We have things that will keep interfering in the life we want for ourselves if we don’t stop the wheel in motion and fix it. 

It is often said that some people are stronger than others and that it makes it easier for them to deal with things in a positive manner, so as to not have to have the same things come back to the table over and over again. 

We all have the ability to decide, it’s what we do with those decisions that matter. 

And they matter because if we don’t deal with our past issues and struggles, they lead to destruction, and they can and often do cause great pain and hurt to others, who we may not want to hurt, but inevitably we will if we have not dealt and faced the issues, thoughts, and beliefs that we hold inside, whether they are emotional issues, addictions, or direct our approach to things in our chosen fields.

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We then must also ensure and choose carefully the Organizations that we chose to work with, are they and those working within are often swallowed up by “Corporate Egos” a term coined by Kate Swaffer, if so are they really listening to us are they really willing to make the changes within their own organizations for the betterment of those living with Dementia? Kate has been questioning many things, for more than a decade now, and says there is almost no substantive change she (and others) can report that has made by advocates and activists.

Or are they going to continue on the path they have decided is what is best? Can they admit this isn’t working it’s not getting the results needed to make that true difference?  

It is very difficult to stay afloat yourself if you are surrounded by people who are drowning, and until they decide to take the steps to stop the Ferris wheel and get off, things just will continue to go round and round, creating destruction, discontent, and the inability to actually provide the care and services needed for people with Dementia to thrive.

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And people who have not dealt with their own issues, cannot even though they believe they can have the ability to understand how vulnerable and fragile the well being of the person living with Dementia is. 

So I keep asking myself is this why we have seen no change for so many years?

Are the people sitting at the helm of these Institutions and Organizations all stuck living with their own belief systems and unable to set them aside and actually hear and see the what’s presented to them and to be brave enough and have the courage to step out and up to help lead the way.

Is this too another of those things where its easier for many to just sit and let things remain because its what is known and familiar and doing something different is just too scary.

This is akin to the “old boys clubs”, the “Status Quo”; the Dementia field has been stuck in a rut for too long.

The Ferris Wheel in the Dementia world has been spinning for 25 + years with little or no change. People have been repeating and asking for the same things for too many years. Its time to stop the Ferris Wheels from spinning, its time to find a new approach.

Even the world’s oldest Ferris Wheels have the stop button hit, and a complete overhaul and update. Dementia needs the same thing. Fresh thinking, a restart, a whole new approach and look, let’s hope there are enough people brave enough to tear down the walls of their Organizations and Think Tanks, and take the brave walk and look through a different lens.

Maybe then we can all enjoy this Ferris Wheel of Life.

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Christine Thelker © 2020 Dementia For This I Am Grateful

Living with Perpetual Grief

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Perpetual Grief is discribed as something that is “Occurring repeatedly, so frequent as to seem endless and uniterupted”. This describes life living with Dementia.

I actually made a whole presentation called Unattended Sorrow, it was supposed to be rolled out to the long term care staff for the Health Authority I worked for, cut backs stopped it from happening. It was meant to address the often many losses that the workers deal with and its impact on their well being.

I think about that often as I move through all the losses I face on my dementia road. Maybe in some way it actually helped me be able to understand the losses and the importance of addressing them.

( Wow at times I forget how capable I once was), still am just in a different way know.

No we are not all depressed, but we most certainly wake up feeling changes within ourselves, feeling the frustrations of finding one more thing that we can longer do as we once did. This creates a sense of loss and grief.

I felt this again today, as I scrambled not being able to keep straight what day it is, then deciding to attmept to make muffins, and as you can see in the pictures, it was a disaster and another reminder of what is not longer working in your brain (despite that fact that I look just fine). No idea what the missing things were, or to much of or too little, regardless they are all in the garbage. And I am left with the realization, that very little of these kinds of things come easy for me anymore.

I was an excellent cook, I created and baked many delicious items, I loved to experiment in the kitchen, I use my kitchen very little these days, and this is one example of why. even trying to put together what would seem like something very simple like a salad can be daunting.

These are the bits and pieces that people don’t see, these are the losses that we have to manevuer through, and it is perpetual.

another batch for the trash.

This doesn’t mean we shouldn’t try, sometimes it works sometimes it all comes out right, and anytime we are attempting to do things is good for our brain, maybe not for our self esteem, but good for our brains.

Most of us can go through our days very aware of the many things we come up against that are more challenging than yesterday or the day before, and some days we get up and everything works, like there is nothing wrong, we don’t control it, we can’t control, becasue if we could I don’t know any of us that wouldn’t be running to sign up and get back to doing things we always have. I no longer have people for dinner, to difficult to figure out if I could pull it off, to humilating to have a big dinner flop, easier just to forgo those things, yet they are things that I used to thrive on, barely finished one dinner party and planning the next.

I have learnt to just ebb and flow with the changes, it doesn’t mean it easy, it doesn’t mean there isn’t days like today where the reminders and the losses to hit you like a ton of bricks.

It is important to remember that if you know someone with Dementia, their losses and grief are very real, it comes at different times, most to live in it, but they do have to live through it when it hits, having the capacity to have the empathy and undersanding can help them immensely.

Ok today is a real mixed bag of stuff, but another picture of what my ife looks like, alot of notes, that likely make no sense to anyone, that I look at and have to try to figure out what it is or was referring to and the context around it. So I’m going to try to have a little fun with all of these things here, I may have written about them in the past ( this is likely), or spoken about them, but here we go.

Age Matters in Diagnosis – why did I write this down, I have no idea, but I do know its important, and to me its important because, when a diagnosis is handed out it should have alot of consideration given to the age of the person, we will deal with accept and handle the delivery very different at 45 or 50 than at 80 or 85. Why? Being at different stages of life, what we may want or not want to do with the diagnosis, and how we handle it emotionally will also be impacted by the age we are at. Are we at the end of our life journey, at the middle of it, at the peak of what should be our best years? All these things matter and they need to be considered when delivering the diagnosis.

Relationships – Recieving a diagnosis can and often does change the relationships between spouses in a marriage. When people are frightenend, because we have yet come to a place where a diagnosis delivery is done in a way that promotes the hope, and the tools as to how to continue to live instead of going home to die. The dynamics quickly can change. I dislkike the term caregiver, we give to spouses, and it happens almost immediately after diagnosis, ( we need to change this), the spouse is still a husband or wife first and should be made to feel that way, but we ( society in general) immediately starts to refer the undiagnosed spouse the care giver. Taking care of each other is part of being married, we should’nt label people they are the husband or wife of someone living with Dementia. Lets try to remember that first and foremost, lets help them thrive together in their uncharted waters.

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These labels create unneeded and for the most part unwanted feelings of making the person living with to feel less of a person, our person hood is important, it effects the self asteem, our sense of self, our sense of being a partner, leaves on feeling somehow inadequate.

It can also instill the feelings of regret, guilt and anger, within the other spouse. Labels – I disagree with them.

Perceptions to Reality – Sometimes its like people are mad at us, at times thats what we precieve. When in reality its sometimes that people are walking in terrioritory that feels like walking in quick sand, they don’t know how or what to say to us. They are going through their own sense of loss although many don’t or arent aware or refuse to accept that, they are griefing thel oss of a spouse as they knew them, or a friend as they once were. So at times what we percieve or what they precieve may not actually be the reality and if we are lucky we can have open and honest conversations with people that will allow us to help each other move beyond perceptions that can damage relationships of all kinds.

Making Decisions are a Different Process that those by people without Dementia – If we make decisions that are not the same as you would or that you think we should, it does not mean we are not qualified to make decisions , its just we are making them from a different place than you are.

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This is because we live with a terminal illness, it changes how we precieve life, how we precieve the world. It doesn’t mean we aren’t capable it jsut means it might be more difficult for you to understand our thought process that makes us arrive at the decisions we do.

Ok I could give you a ton more of my notes, thoughts etc. but that’ ll do for know. You see when my brain is struggling to do things like make muffins, it takes me to that place, which by the way wasn’t there before my diagnosis, it is one of the silver linings of my dementia, it sends me to my writing desk. my brain relaxes here, it quiets, it is happy here. I can no longer remember ( actually thats been on going for a long time) rmember what I write, but it does allow me to write, for this I am grateful

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Christine Thelker © 2020 Dementia For This I Am Grateful Living well with Dementia Silver Linings Uncategorized

Underwater Exploring

So I hate that people think that dementia is all about memory loss and the inability to do or learn things. We may not learn in the same way, but we learn, we may not do things in the same way but we do things.

People with dementia are anything but stupid, in fact, quite the opposite, people with dementia are inventive and adaptive, it becomes necessary as a way to live with the disease. We become very creative in finding ways to do things we once did with perhaps ease, but know its a struggle. Others may shake their heads watching us, baffled at the hows and whys of the things we do, but the important piece is that we do. We enable ourselves instead of disabling ourselves, often people with dementia are disabled instead of enabled because people assume that because we can no longer do something we once did, or at least we cannot do it in the way they believe we should, that we just should no longer do it or attempt it.

I don’t believe people are doing this disabling on purpose, I believe they think its kinder to take over and do or stop us from doing because it is often difficult for them to watch the changes in us and how we do things.

So in fact it becomes more about them and what’s best for them than about what’s best for us. There may come a day and time when we need that level of assistance and we all need assistance with certain things. I know there are some areas that I am struggling with more and I in am need of more assistance with. But that doesn’t mean I need assistance with everything and we should always be encouraged to do as much for ourselves as possible.

So this video illustrates one of the things I do, I love water, I love photography. People often ask why I take so many pictures, well pictures trigger memories and events and places and feelings associated with the picture. So this video is some underwater pictures I took with my little underwater camera while walking in a creek, while on a camping trip with my sister and niece.

For me, this is living in the moment doing things that bring me joy, they may not be award-winning photos but they remind me of things I love. It brings me happiness to take them, then put them into a video ( I struggle with this part but after many days eventually get through it.) Building power points, presentations, were something I did with great ease at one time, it is no longer that way, and it’s ok, it doesn’t mean I should stop or stop trying. It doesn’t matter if its other people’s standard what matters is that I still try. What mostly matters is that I am still trying to live my best life despite having Dementia.

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Human Rights, Ageing and Dementia: Challenging Current Practice

Todays blog is a video of my friend and colleague, Kate Swaffer, challenging us all to think about human rights, ageing and of especially about dementia as a condition causing acquired disability, in the context of challenging current practice. For the purposes of the video, Kate says, she was asked to talk about the key messages she had hoped the audience would take away from her presentation at the ADA Australia conference, in 2018.

It is because of People like Kate, like Christine Bryden, Richard Taylor, James Mckillop, that I continue to advocate, they have worked and given so much of themselves, and I feel I have a duty as person living with Dementia to do mine.

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Christine Thelker © 2020 Dementia For This I Am Grateful

My VCTV Interview with Michael Peters

I was planning on adding this to yesterday’s blog but didn’t receive it until know so why not have another blog.

This is another piece of being vulnerable, but also a piece that if we allow ourselves to be, we have a better chance of helping others. To help change the view of what a person with dementia looks like, what it’s like to live with. It’s not about being in front of a camera with that oh look at me thing going on, it’s sitting in front of the camera knowing full well, you look exhausted, you don’t speak as well as you once did, you mix things up, you make mistakes. I can see them all in this interview, you likely can’t, but it doesn’t matter, what matters is that in an attempt to try to make things better for others I opened myself up to that vulnerability. It’s about not shying away from taking opportunities as they present themselves for the greater good, and the greater good in all of this is changing the perceptions around dementia. It’s about advocating to make changes that are long over do, and not giving up until things are better for all living with dementia.
I am grateful to have met Micheal, he made me feel very comfortable and I believe he really got to the the points about dementia that need to be heard. So a huge Thank you to you Micheal and again to all for making this trip such a memorable one.

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Christine Thelker © 2020 Dementia For This I Am Grateful Silver Linings

Admitting when I’m not ok

I’ve pushed through the last 10 or 12 days, they haven’t been all bad, but there are things impacting my already compromised system, like all the smoke, which then wearing a mask, when my system is already struggling from lack of air, is wreaking havoc with me.

I knew the smoke was going to irritate my system, my lungs in particular which makes my heart have to work harder, it creates stress on my vascular system, which impacts my dementia. The last three days have been the worst and the accumulative effects are here, waking up this morning I realized how much my system is struggling and that I have a lot of inflammation happening and so today made the decision that I must go back to using my oxygen concentrator along with my CPAP, to try to alleviate and minimize damage.

I am so grateful that a few years ago Cindy and Richard and Andy, were gracious and caring enough to provide me with an oxygen concentrator, at a time when it was vital to me. I had considered gifting it on a number of months ago, then I was sick for four months this spring, it has become apparent that their gift will help me for a very long time to come.

I have tried to stay indoors as much as possible or at least out of the smoke as much as possible, apparently, we are supposed to have better air quality in the coming days. Being ok to admit that we are struggling on any particular day is ok, its actually so important to our overall well being. So often we have our game faces on, people with dementia are good at their game face.

Yesterday I had to go to the hospital for some pre blood work prior to having a whole host of scans tomorrow morning, the lovely young woman in the lab, said to me, ” oh my gosh your veins are a mess, they don’t even straight like they should, and they are so small, She said I’m sorry it’s hard to find a vein she eventually found one that she could access. I told her I’m aware its why I always alert them to use the small butterfly needle. I’m used to it, it’s just how it is. But her conversation triggered me to remember that I have to be extremeley careful right know, I definelty don’t want my system to crash.

Overall I’ve been doing well but time is marching on, things are changing, and environmental things can really impact not only myself but all with Dementia, so while the world is stressed, while we deal with fire, smoke, hurricanes, and all the other things happening please remember to ensure you are doing self-care, is hard enough living with dementia, without letting all these things have a negative impact…do all you can to take care of you.

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Christine Thelker © 2020 Dementia For This I Am Grateful Living well with Dementia Silver Linings

Something about small towns

So just this past week, I was in Valemount, a small town in Northern BC, to do a book signing event, and to catch up with friends.

You see Valemount was the town were my husband and I lived, along with the kids, Natasha and Brenden, we loved our life, we loved our community. people came together to support one another, to enjoy watching the kids be it basketball or hockey, we loved our life there.

After my husband passed away, I came here to Vernon to be able to work full time, commuting back and forth, working a set going home for a set, it was difficult but necessary. Eventually, I made the difficult decision to move permanently. It was hard to leave so much and so many behind, but life changes and we have to change with it. But friendships withstand time and distance, I returned as time allows, always happy to reconnect with friends.

When my book, was released a dear friend contacted me about coming to do a book signing. She then set out to make it happen despite the challenges of Covid.

The Gathering Tree Restaurant offered up space, ( this meant closing the restaurant early) and the making of boxes of finger food ( Covid ), Remax ( Shelly Smith Battensby). Infinity Office and Health provided posters, soon everything was well planned. I din’t know the owner of the Gathering Tree or Infinity, Shelly Battensby of Remax is a friend of many years.

I enjoyed the drive, remembering many things, and reflecting on the life I had once had there. It always brings an emotional element returning to places of the past. But its also exciting to see people you don’t get to see often.

The local Television VCTV wanted to do a sit-down interview and arrangements were made for that. I did a lovely 45-minute interview done by Michael Peters, whom I also had never met, he came to Valemount after me. He did a great job and I was hoping to post it here, but it’s not ready yet, so it may have to be posted separately.

Next was an interview with the local paper ” The Goat”, another great interview and I look forward to seeing it.

The Book Signing was a great success, I met new people, including the lovely owner of the Gathering Tree Restaurant, its full of great energy, felt good to just be there, Tanya is full of life, upbeat, and a great addition to Valemount.

Just before the signing began, in came Michele, whom I also had never met ( the owner of the Infinity Office and Health Store), another lovely young woman, and she came early to do a meditation session with me before the launch, so that I could release anything that I was carrying and enjoy the evening.

These young women are bright, are following their dreams, opening businesses, living the type of life that brings them happiness. They welcomed me, they offered up time and space, and most importantly, they were the reminder of what is still good in the world. The kindness of strangers, who extended themselves to me, the warmth of a town that used to be home, the love of friends that always there with a warm hug, and welcoming homes.

By the next day, two businesses, The Infinity Office and Health Store ( Michele) had books to sell in her store and had a display build in her storefront, The Goat Newspaper also took copies to sell from their business.

The small town, where everyone wants everyone to succeed, there’s walking into a store the next day and hearing a store owner call you by name, that reminds you of why you loved this small town, and why the idea of small-town living still has a lot of pull for me.

I am so grateful to everyone in Valemount, for their support, for their friendships, grateful for the new friendships.

A heartfelt Thank you to everyone for making my Valemount Book signing a huge success. PS, the little green table, last picture below came home with me it says ” In a gentle way you can shake the world”, I believe this to be true, its what we are trying to do in our advocating trying to shake the world, to show all that dementia is, instead of what its thought to be, thanks for helping with shaking the dementia world Valemount.

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Christine Thelker © 2020 Dementia For This I Am Grateful Silver Linings

Unrest in the Advocacy World

It’s worrisome and somewhat frightening to see and hear so much discontent and heartbreak from so many advocates. It’s even more heartbreaking to know that after 25 or more years and all the advocating and all the promises of change very little in fact has changed for people living with Dementia.

It was deeply troubling yesterday to chat with and hear some very amazing advocates, both on a more grassroots level and on an international level, talking of the fatigue and being so tired and wondering if its time for people with Dementia to just “give up”, and all stop advocating.

It is not at all surprising to hear this, I have often sat and wondered if my advocating was worth it, if it truly was making a difference. 25 or 30 years of advocating and seeing little to no change in how Dementia is treated, how a diagnosis is handed out, how often we are only given a place in the roster and on the stage at conferences to quiet us and say yes we have a person with the lived experience here, it a carrot and nothing more a lot of the time, and it’s shameful.

What’s even more shameful is that most attending are funded through the various organizations they work for on funds raised under or on our backs, because we have allowed our faces and stories to be shared to help the fundraising campaigns, and then we are expected to do our own fundraising and campaigning to attend.

This of course is a bone of contention for many who advocate, why are others paid to stand on the same stage as us and be paid for their contribution to the event, and we are not. In the words of Kate Swaffer ” Corporate Egos”, must go. If you truly want to help change things for those living with Dementia then absolutely the Corporate Ego’s need to disappear and all need to start working together.

But for me personally, the thing that is most exhausting and tiring and very difficult to swallow is that after 25 or more years, there has been no change in the education of Doctors, Nurses, Clinicians, or any of the varied positions that have people in direct contact with people living with Dementia.

This to me is the biggest shortcoming of all, its actually nothing short of tragic, its imperative that this one piece be changed, because if we change it there, then we have the ability to change how the general public perceives Dementia and those of us living with it, and we are living with it, we are not at home, waiting to die, as most seem to think we should be.

So yes we are tired, yes we need to be brought to the table as full and included participants who are as equally valued as others. But for me no matter how tired I am I cannot and must not quit, for doing so would be doing a disservice to all those who worked tirelessly for so long, before me. Out of respect for them, out of respect for all those who are unable to use their voice, I will continue, and hopefully, I will remember to look for the silver linings, and the wins, no matter how small they may be, for if we make a difference in any small way it is still better than making no difference at all.

I will continue to look to my mentors for guidance along this very challenging road of advocacy, I will not be bought or gifted to conform to any one’s particular script, I will speak my truth, I will speak about the human rights violations, I will speak about the need for change.

The world is facing many challenges and changes in 2020, going forward as things change I can only hope that how we diagnose and treat those living with dementia, catches up to how others with any other type of illness are treated. This should promote and help provide quality of life. I say “Care until Cure” is the way forward.

The Blog is live now…

Talking about my Book – “For This I am Grateful” on Alzheimer’s Speaks Radio

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Christine Thelker © 2020 Dementia

Never Dementia Free but still needing Dementia Free Days

Our dementia is always with us always there, we not only live with it we advocate about it, we work with many groups and organizations trying to make a difference in the lives of others living with it. Those are extremely important things, they provide us with hope and purpose, sometimes others don’t understand how important that is.

While others have careers, clubs and organizations and hobbies that give them purpose, many have family, children and grandchildren, That play an extremely important part in the day to day lives they lead. They happily bring us up to date on all those things, because they are important in their life.

Yet very often they don’t offer us the same consideration, they spend less time with us or none at all, because they don’t want to hear about dementia, yet they are missing understanding the importance of allowing us to update them, can you imagine the reign over horror that would sweep over someone if we stopped seeing them, or limited it because we were tired of hearing about their jobs, their husbands, kids and grandkids, those oh so important pieces of their worlds, can you imagine, we would be thought of as terrible people yet that is exactly what happens to many with dementia.

Wouldn’t it be nice if instead of shunning and not wanting to hear we were given the time and space to update about our dementia that
then allows us time to enjoy life’s moments with our friends or family, camping, walking, enjoying nature, going for a drive, finding joy together in being together, having coffee, having laughter, even having tears at times.

Those are our dementia free times, the updates are done we get to enjoy the moments. Those are the very things we need the most and yet so many end up spending too much time alone, being isolated, not being included because people don’t want to hear or talk about something. You wonder if they are even aware or think about it in the very realistic manner of what they are doing.

I live for my dementia free ( not free), times, I wonder if it is perhaps partly because a lot of people live at a superficial level, without even knowing it. In fact it is how most people have come to survive and cope, but once diagnosed people living with dementia live their lives looking through a different lens than others, things come into sharp focus. We somehow gain a different perspective and gain a different outlook.

It saddens me greatly in the many discussions around why people become so isolated, and to hear over and over that it’s ok, they’ve become used to it, and yet you can hear the sadness and to me, it most certainly is not ok, and I doubt I will ever truly get used to it, learn to live with it yes, get used to it no.

it is true that people with Dementia become very good at being adaptable at adjusting their lives to manage all the changes they go through, this is one of those pieces that they should not have to and when we start educating everyone and teaching people to look at how and why they are treating someone with dementia in that manner, perhaps it can be one thing that has been an unnecessary hardship to adapt to disappear,

It’s yet another piece where we desperately need to help educate people, not only about dementia but about how perhaps their response to it contributes and does further damage to those already trying to find positive ways to live with a life-altering diagnosis.

This picture depicts what friendship should look like despite Dementia

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Christine Thelker © 2020 Dementia

Addition to last post

I should clarify that in my earlier post I don’t mean they should stop looking for a cure, of course we all want that in the end, but that we need more of a emphasis on living with, instead of just go home and getting ready to die, so maybe the right frame of context is and I quote “ care until cure” Maybe that frames it better.