The last several days hav3 been challenging, so today I’ll go out to the woods, be in the peacefulness of nature and just breathe. This last while I’ve been struggling more than ever, but I know a lot of others with dementia are struggling as well, I wonder how much the changing of the seasons comes into play, the change in barometric pressure, it effects my brain 🧠, My vision has been effected, my balance and coordination, and the brain fog, but, my face is also partly numb so perhaps another small stroke or TIA, that was just enough to set everything off. I do know that I don’t regain ground like I once did, it’s getting more difficult and takes longer. I think about how drastic the changes have been since last winter and through the spring when I was sick for so long. It’s that slow death that they refer to when talking about dementia, sometimes, I want to fight it with all I have, other times, I just want it to hurry up and be over. If it’s hard for others to watch the changes, can you imagine feeling it and knowing it within yourself and not being able to do anything to control it? We always hear how hard it is for the person on the outside to watch it, we seldom talk about what it’s like to be cognitively well enough to know and understand the changes, to be aware of the changes, and be powerless over it. we can and most of us do everything we can to help ourselves stave or quiet this beast but ultimately we are not in control. It’s sobering. Perhaps, also seeing all the horrendous state of care homes, to the thought of robots taking care of people has also been a lot, along with trying to get our voices heard, and wondering if we ever will. It’s all been a lot then add in the normal life stuff because yes people with dementia still have that as well, it’s a time to acknowledge all these things, to settle into the new normal. This has then been admitting I need help in certain areas, none of us like to admit that we are no longer capable of much of what we once were but if we do this can alleviate stressing my brain trying to do what is no longer manageable.
So amidst all there is always that silver lining, and for me that came yesterday, Yes the silver linings, I talk about them often, look for them always, am grateful beyond words for them. So my silver lining came in the form of a lovely friend who graciously volunteered herself to come and help me with all my organizational pieces, so that I could keep my brain pier to focus on the things that are good for me, like my advocacy work, like working with DAI, like working with research groups. It’s almost impossible to be able to express the gratitude for this gift, a gift of oneself, a gift of time, and talent, so a heartfelt Thank you to Val Trevis, I have been so blessed to have you come into my life. it makes it easier to maneuver through all the changes when you know you’ve got angels close by helping ensure you can keep living and getting the most out of life. So this morning, after another friend showed up two days ago to ask if he could take me to the woods so I could explore ( another gift), exactly when I needed it ( unbeknownst to him), I am being guided and watched over. So I am not going into the woods not sad or depressed, just struggling with a lot of brain pain which is different than a headache, vision is bad as well but I am going feeling blessed and grateful that despite things declining I am truly blessed, grateful.
I am deeply disturbed by this whole idea. What type of society are we living in, COVID has pried the lid off of lots of issues in long-term care, but this is not nor should it be considered part of the solution.?
As a person living with Dementia who already has too little interactions with others, who spends too much time isolated, and works hard to combat that, this is a horrifying thought, and if this is the best solution that can be thought up, then I hope I die before I end up in any kind of care. Are we really willing to leave the most basic of human needs be left to machines, do you want your loved one looked after by a machine? And what happens when there is a technical glitch? This could create very dangerous to anyone in care and even more so those living with Dementia.
Human interaction, the hugs, the laughter, the tears, the emotional elements are vital to our well being, seeing someones face light up when they see you, hearing the tone of their voice when they are talking to you, all vital to a person well being, whether you have dementia or not.
Technology has many great things it can be used for, including to help people living with Dementia stay independent longer but replacing human interactions with each others is not one of them and puts us all on a very slippery slope.
I would suggest that they look at changing long term care to being smaller, intimate type homes, more efficient to run, better for the people needing care, promote wellness, better for staff, less bureaucracy, more care, better nutrition, actual meals made in an environment that promotes all to be involved to whatever degree they can, promotes social engagement and less isolation. Each small unit can be specific to its clients, better overall care. It also encourages more family involvement.
But all the things in long term care that need to be scraped and started over are for another blog, this on is just about the talk that they are looking to use Robots in Dementia Units. People need human contact, people with Dementia can have different types of Hallucinations, some are due to the medications they are on, some is from the type of dementia, can you imagine them trying to sort out if they are hallucinating or its really a robot? And wondering whats happening to me where are the people? The implications and the very dangerous situation this sets up for people with Dementia is beyone compreshion for me. Why would we do that? I wake up often disorientated as to where I am even if I am home in my own bed, it can be quite a process until I am re orientated to my surroundings, if I woke up to a robot, it would totally add to my disorientation.
So what then, increased anxiety, likely increased agitation, so then I would likely be medicated to be calmed down from a situation that was created by others, who put me in this situation. How is that good care? How is that acceptable?
I cried so hard today, the thought that we are becoming less humane, instead of more is unbearable. I am struggling with where humanity is headed if this is thought to be acceptable and I will fight this from happening at every level I can.
And I wonder will they hear us. Advocates are getting louder and more vocal on the inaction on getting real change to happen for those living with dementia. Surely at some point, our voices must be heard. Inaction is what has been seen for the past 25 or 30 years, there is much talk about how to help, there is always work being done around “ what can we do do make people’s lives better for those living with dementia? We continue to sit at the tables, desperately hoping for some glimmer of real change.
For me personally, I look and I see and I speak to the one change that is (IMO), the most important and significant change that needs to happen, and once it does ( I wonder when that will be), all the changes can and should follow suit. So let’s look at what that is for me, the key for me is diagnosis. Diagnosis, how it is delivered, how it is followed up. Yes that’s it the delivery of diagnosis. From GP’s to Specialist are given the tools and decide to change the way diagnosis is handed out, things will change for people living with Dementia. Being told you have a progressive terminal illness, that there’s nothing they can do, that they may have a couple medications that may help with the symptoms for a time, that you should really get your affairs in order, ( many are even told that they should start looking at and checking into assisted living and long term care , so when the time comes they are prepared.) what the hell is that? Then they wonder why a short time later you’re raging with anger, or so deeply depressed you border on being suicidal, then they all believe it’s your dementia making you that way, so they want to give you medications to alleviate the anger, anxiety, and depression. The fact is delivery of diagnosis creates and perpetuates all of these things. This must change! We know there is much that can help, nutrition, rehabilitation in the form of physiotherapy, exercise, social engagement, having purpose and feeling valued, we are offered none of the things that can help us maintain a good quality of life for a good long while, to keep us being an active and engaged. Occupational therapy is not given. Why aren’t we provided counselling for ourselves and family members to deal with the perpetual grief we must live with. when my husband died I was offered grief counselling, yet I’m told I have a terminal illness and I am offered none? This must change! How about we are given a resource guide with various groups and organizations that can help us and that provide services? How about being told and guided that there is much that we can do to help ourselves? How about lining us up with Nutrionalist, Various Therapists? Help with using technology, which greatly assists us? How about encouraging us to do all we can to help ourselves? Instead of thinking if we do and are “ could we really have dementia”? Instead of humiliating us with more mini mental tests every three months to see where we are on the scale, ( we actually know things are changing for us). And oh by the way did you know we aren’t stupid and after a time, learn tricks on how to manipulate the tests to a degree.
The number on the scale is more for you than us. ( I personally don’t care what the number says, I care about how I feel, I care about what my quality of life is looking and feeling like, numbers don’t tell you that). But if you actually talk to me I can tell you. We also know that every persons dementia will present differently, so why then does one think the number will give you the information you need. Time to throw out the old model
So let’s start by building a program that is in every medical program, from doctors to therapists, nurses and nursing assistants, that actually covers and teaches them about dementia as it is today, not just late stage end stage. We don’t just teach about end stage cancer, or a multitude of other illnesses, so why aren’t we teaching, about dementia. It’s skimmed over at best. It’s going to take the Doctors and Clinicians of today to decide they can do better, want to do better, and to start committing to making the change before all the other changes will take place. I wonder how many are willing to be at the forefront of being the change?
There is so much that needs to change, from delivery of diagnosis, to services offered, to organizations working collectively, it seems daunting, but perhaps if we can finally make the step to start with diagnosis delivery we will be on our way to having and being supported to have a quality of life.
This is Dementia Awareness Month, this is the time for change.
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.
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.
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.
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.
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.
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.
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
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.
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.
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.
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.
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.