Am I going to be added to the list of Covid 19 “ Long Hauler” list, it’s hard to say,, Doctors are scrambling to deal with so many unknowns during this pandemic. How many people like me went without being tested because in the beginning testing was only being done on health care workers etc. We went untested for a month or more, the testing done at the point was well pointless. I got sick on March 14, 9 months later, here we are in November and I have been hit with wave after wave of strange illness, I’ve struggled, I’ve been hospitalized a number of times. Inflammation in my system a huge issue, carbon Dioxide levels to high, skin infections, almost no part of my body has left untouched.
The doctors are trying, they can’t say with certainty that I had covid back in the beginning, they can’t say I didn’t. I sit and wonder how many others fall into that category. We can’t blame the doctors for so many unknowns, they don’t have all the answers this is something new, and just like with my dementia diagnosis I have to do my part to help my doctors help me. I have to read new reports and finding the doctors are simply to busy to keep up with it all the data coming in, after all they still have all the other duties being a doctor entails. So I once again have become my lab rat, researching, reading, taking notes, to keep track build a graph so to speak.
All my illness cannot be blamed on my Dementia, not all that has been attacking me can be blamed on my complications, my vascular system etc. Last Saturday night, one of the doctors called me at 630 at night, saying they didn’t like something in one of my tests, something growing ( a bug/ infection) that they weren’t sure what it was, they gave me very powerful medications to eradicate it,
it doesn’t matter to me what the tests results were or weren’t, for one thing to many false tests especially in the early days. what matters to me is that I do all I can to help myself. I don’t wish this on anyone, it’s relentless, I’ve had about 4/5 weeks that I could classify has feeling really good in 9 months, I am striving to fuel my body with has much good stuff as I can in my bid for a good run. I keep being told it’s going to take time, I’ve been hearing that since March, and given that I’m in year six of my journey with Dementia, time is the one thing I don’t have a lot of to spare. Each day since the massive three days of medication last Saturday night, I am feeling better and stronger. I am holding my breath hoping this is finally the thing that stops all these attacks on my system. This also means I am being extra cautious, wether you believe covid is as bad as they say, or don’t believe in at all, all I can say is I wish this on no one. The more the numbers climb, the more I isolate myself, and I have since the day we started in March been following and taking all precautions, I know I’m high risk and I know because of my dementia I would not be given the same care as someone without Dementia, I’m already terminal, so I can live with that, but at the same time I can fight hard to get myself a couple more years and be able to have a quality of life. I’m not done yet.
Yesterday my doctor called, back to the lab for more tests, sometimes it feels like my life is about appointments, But this is life for many with Dementia, so many underlying health matters. It’s a tangled mess, but at least they try. I will be happy when antibody testing can be done, because I have been sick since March, a few good weeks in that time but more time being sick, feeling like my body is attacking itself, and sometimes I ponder how much is simply being blamed on my dementia because that’s always rather easy answer. However I do have good doctors and my GP I have complete trust in.
so what does that have to do with finding my happy, well I could become despondent or depressed feeling sick so much, but I don’t because I focus on the good moments in the day. I still attend meetings, still present speeches and contribute to the research groups I am part of. I’ve been doing a “ one thing a day” for a while, as my fatigue means my ability to maintain enough energy to do more is not there. But I celebrate what I do manage, and yes I am human and sometimes every once in a while, I get angry, mad, frustrated, because there is much I want to do but my health is hindering me.
So finding my happy is extremely important, and it’s important for everyone, especially during times like those we live in, so much uncertainty for people I am fortunate my mother instilled in me from the time I was a tiny girl that when everything feels out of sync, when you are having times of troubled waters, you need to keep busy. Keep your hands busy, it will quiet your mind. That’s how you find your happy, get busy doing something, do something that has some normalcy to it. Teach yourself something new, something as simple as cleaning out a drawer or closet gives a sense of satisfaction and brings calm, we feel good when we complete something.
So yesterday, I tackled a project, I recovered phoebes window seat, another small bench, a chair and foot stool, and have cut out cushion covers to coordinate, I’m going to change my space around, make it a happy space for winter. This brings me to that happy place.
So even though I don’t feel well, and some days are worst than others I’m always finding ways to bring joy to my life, and it may not be perfect but I did it, that’s what matters. So during these days when everything around you feels uncertain, and I have to tell you those of us living with Dementia spend most days feel like we are walking on quick sand because everything is uncertain for us all the time, but we are always striving* to find our happy, so get busy and you can too.
For most Halloween like many other things, this year are different, of course, some people will insist that they have Halloween just like any other, others will be creative and inventive. It makes me stop and think about all the people who in the past didn’t even have time to worry about whether Christmas or Halloween or birthday parties or any other of our multitude of holidays we celebrate would even happen.
I think about the people like my mom who grew up during the Second World War in Germany, with bombs dropping on her house, about them fleeing for their lives, about them scrounging and yes even stealing food so they wouldn’t starve. I think about all she endured during the Great Depression. the sacrifices she made fleeing to England and then Canada.
So I don’t believe that I have the right to complain or feel sorry for myself because I am a little inconvenienced, by wearing a mask, by changing how we do or don’t do a holiday or celebration.
It’s not that I don’t want to see everyone doing all those things that they love, but somehow we, (myself included), have somehow become a society that feels entitled. We have yet to endure real true hardships in comparison to our parents and grandparents, although our homeless population that continues to grow is feeling those hardships. the other day I had a lady say to me that she doesn’t care where they put the homeless as long as its not her neighborhood, that statement haunts me, have we truly become that kind of society, we don’t care who else it impacts as long as it’s not us? There is very little that causes me anxiety, but when I think about things like that it does. It makes me afraid of what is coming.
We have become unable to cope, overstressed, and yet the important things, like having a roof over our heads and the ability to go to the store and buy groceries for our families are taken for granted and we are mad and angry that we are inconvenienced.
Yet the very people who came to this country, to give us better lives, that made this country great, they are the ones really impacted and feeling the worst parts of this pandemic, because we have locked them up in institutions, human warehouses, that we call Long Term Care Homes, absolutely nothing homey about them, nothing that provides real quality of life and we justified it, we made it ok because we can’t and won’t sacrifice to look after our own. So they are the ones truly paying the price of this pandemic, in fact, they are paying the ultimate price, DEATH.
Seems harsh I know, but it is how I feel about things. I don’t expect everyone to agree with me, it’s my opinion and my feelings. It is a very real and frightening reality for me, my health is declining, I have dementia. We have and know that those with Dementia in care are the ones who have and are enduring the worst of what the pandemic is showcasing. So I have a right to how I feel, as we each do, for me it’s all sitting close to home given my health challenges. For me, it’s all too real. I was in the hospital again last week, then called back, then last night Halloween night, at 630 pm, the phone rings, its a doctor at the hospital, concerned about one of the tests they ran, and they want me to go right away and get a prescription, it can’t wait, and my doctor will follow up, my whole system is struggling, I have vascular Dementia, my vascular system is creating many issues within my body. when Doctors are phoning on a Saturday night, you pay attention.
I do all I can to help myself and help them help me and I am so grateful for how hard they try. But that still leaves me having to think about all those things like where and what happens when I need more help, that’s something that I’m facing more each day, and then there’s the whole reality of people living with dementia who end up in care, and the lack of small homes within communities, versus institutions. People look at me as it looks as though in others’ eyes “I’m doing great”, the reality is things are changing just not in ways most could see. So yes how people are responding and behaving during these ” difficult times”, impacts me in many ways.
The other thing that impacts me at this time of year is the time change, falling behind an hour. I change my clocks or most of them before I go to bed, I wake up though and I think did I change my clocks, is this the right time, it confuses me, it creates stress I have to figure out where I actually am, in reference to, day and time.
It also impacts my sleep patterns which is already a struggle, so I wish, I wish, they would just leave the time alone, spring ahead this spring, and leave it alone from there on in, my body clock adapts to seasons and differences in daylight, etc on its own. Leaving time alone is one small thing that can make a big impact on life for people with Dementia.
Today the above event was announced, today I did a 45 minute interview with David Harvey of Dementia Dialogues, that will air on November 9th. Yesterday my neighbors called an ambulance and I spend the day in hospital having X-rays, Scans of my head, Ivs running, multitude of medications given, many tests run, you see I’ve been unwell since the 29th of September, yesterday another event ( that’s what I call them, because was it a true TIA, one of the many silent strokes I suffer, or a combination, does it matter, a major stroke didn’t happen because of quick responses, today my internist called I have to be at cardio/ pulmonary at the hospital at 815. I’m hoping to be home in time for a 10 am meeting with the Canadian Consortium of Neurodegenerative on Aging ( CCNA). I’ve missed a lot of things over the last month, that never makes me feel good, but I still have been pulling up my big girl panties, and try to manage one thing a day. That’s hard for me, it’s hard for many of us with dementia when our brain and bodies aren’t letting us do all the things we want and hope to, or to do them to the caliber we want from ourselves. The others I have met with dementia, the other advocates I have come to know all seem to put high expectations on ourselves. We truly need to learn to applaud ourselves more for how much we really do get done. We also need to allow ourselves down time when we need it, after all we do live with a terminal illness.
The thing is people like Noelannah Neubauer and Janet Douglas who have worked so hard to put the upcoming event together while I was and am doing all I can to turn the corner once again in my dementia journey. I’m battling for another decent run of functioning.
People like David Harvey, people like Kelly here in Vernon, who is putting together a similar event on December 15th, more details to come later, these people who not only support my efforts to make a difference for people living with dementia, they inspire me to keep going.
Having a reason to keep pushing forward is important, it’s important for everyone and for many of living with dementia having that purpose pulls us through the dark and hard days. It at times seems that it would be easier to give in to our illness, but feeling that way that doesn’t feel good, so it’s not an option not yet any ways. So for now I’ll spend what energy I have working with my much loved Colleague Kate Swaffer and DAI, I’ll continue to work with CCNA, with Alzheimer’s Disease International, with TREC, and with Agewell, and others, in an effort to see real change.
I will continue to do all I can to look after myself as best I can, and I will be grateful to neighbors who check on, to friends that drop and run to do what they can when I endure another downturn or hospital visit.
I will be grateful to those who are giving of themselves to help and give of themselves so that I can continue to use my voice.
I hope you’ll join us on November 12, for what will be an enlightening and uplifting event.
I was reminded yesterday during a conversation that sometimes we are fighting so hard for each good day or moment, that we are always looking for the silver linings, looking for the things we have to be grateful for. Yet somehow in all of that the one thing that I have forgotten to acknowledge and give thanks for is my body.
Yes, this broken, often unwell piece of equipment, and I, like I am sure many others when giving thanks for things forget to give thanks to our bodies. For all that it manages, if we think about it, I may not be able to multi-task any longer, I may struggle with a lot of day to day things, but if I stop and look at how much my body has to multi-task still even though it’s broken and hurting, not only from the Dementia but all the other things many of us with dementia have that complicate things even more, like cerebral vascular disease, hypertension, a rare type of angina, and on and on it goes.
Amidst all of this, while struggling with the Dementia that is forging in my brain, the magnificent brain is still multitasking every single day, keeping all those parts running, and maybe they don’t run perfectly anymore but none the less it runs. It runs well enough that I can still sit here and write, it runs well enough that I somehow make it to meetings and give speeches, well enough that I managed to write a book.
Perhaps I miss appointments or get the days and times wrong, perhaps, I make more mistakes, perhaps I can no longer multi-task, but while I am not my body is. I have ( or my brain has) given me the tools to adapt and adjust my life to keep running, maybe not in the fashion it once did, but I am still here and I am still standing.
So should we not take the time when we are thinking of all the things to be grateful for when we are giving thanks for so many things, should we not be including thanks to our bodies. For it is in fact the very piece of us that is broken, our brain, our bodies, that somehow are still doing all the work, to allow us to still be here.
So today after a very short one day reprieve from pain as I am sitting waiting for my doctor’s appointment today, after another sleepless, exhausting night, trying to manage the pain, I will be saying a thank you to this body for allowing me another day. Another day that I can write, spread kindness, share joy, enjoy friends and family, yes today exhausted or not I am here because my body is deciding to keep running, maybe not on all cylinders but it’s running, and that’s a lot to be grateful for.
It’s been a bit since I’ve written, but I’ve had to give myself permission to scale back, to think differently than I normally do. It’s hard when we have conditioned ourselves to expect so much from ourselves, we can’t blame anyone else, we can’t blame society, we have taken it on. We have placed huge expectations on ourselves to complete everything we’ve felt necessary to do and attend. We would never put those expectations on anyone else yet we do it to ourselves.
Why I wonder do we tell others to take it easy, to look after themselves take all the time they need and then in the same breath berate ourselves for not managing to do it all or more.
We are driven, we are passionate, we want to feel like we are contributing to our lives to the lives of others to things that matter to us. Many of us with dementia often talk about how tired we are, but we keep pushing to show up, to support the others we care about, to help drive change that is long overdue, we sacrifice ourselves, our own well being, because we take our commitments serious, maybe because we are working so hard to get others to hear us and take us serious.
Often groups and organizations that are working to make things better for those with dementia, to include us, ( some use us), who talk about ensuring that changes happen to make things more dementia friendly, when in fact those very same organizations ask us to attend and participate expecting us to be up at unrealistic hours middle of the night, to make presentations, to participate in discussions, because they base the hours for themselves that work for them, ( they are paid ), they only participate during their working hours. But we who live with dementia and who we know how vital rest is to our rest is, to our cognitive well being, are asked to give of ourselves freely, to put our already challenged well being at further risk, by attending at unreasonable hours.
For use feel like we have no choice, if we want to be heard if we want to help make changes that actually impact us directly we have to be willing to be the sacrificial lamb so to speak. The one thing we must do then is give ourselves permission to ease up when and where we can. It’s hard not to keep high expectations on ourselves. I have learnt in this past year to do a one thing a day rule. This has come about because in the past year I’ve only actually had about two months where I have felt good. My health has been significantly challenged and continues to be today, many with dementia have many other health factors that come into play, does the dementia make them worse, or do they make the dementia worse, I am never sure and bounce back and forth on that. I do know though that my ability to keep my health stable becomes more difficult each passing day. so I have taught myself to be happy to make it and attend one meeting, or do one thing like clean put my spice cupboard, one thing a day, somedays I can’t manage that, but if I miss a meeting, if I miss a support group, I no longer berate myself, make myself feel worse. I remind myself that I do live with a terminal illness, that today I’ve done pretty well. Today I’m still here, I’m still smiling, I’m living only for today, and that’s enough. It’s important and maybe more so right know with everyone dealing with this underlying stress of living during this pandemic that we remind each other it’s ok to say not today, it’s ok to not put that extra pressure on ourselves. Give yourself permission and give those around you permission and encouragement to take care of self. That is truly how we will make it through these very turbulent times, and maybe just maybe on the other side of it, we will see the change we all know is long overdue. Maybe the silver lining is that through it all we continue to learn and grow, despite living with what is still previewed to be the worst possible illness to end up with, yes maybe the silver lining is that we indeed are living each moment much more than we are dying. Maybe the world could all learn if they did like us and lived like they were dying.
There has been a lot of talk about technology, it’s use and moving it forward in many different applications to assist those living with Dementia.
I have long said there is good and bad to technology, and after hearing so much talk and opinions about the film “ The Social Dilemma”, I sat down and watched it, I thought about it, I watched it again, thought about it some more. I have always said technology could be either used for good or bad, I believe in many ways it has been used in ways that are not good for people. Creating addictive behaviour, changing behaviours, using manipulation techniques is wrong always. For those responsible for much of this know stepping out and speaking about tells me that some of those have a conscience, it tells me that they know we are at a tipping point and we the general public need to direct whether technology will be used for good or bad.
Technology can bring so much to people lives, we have witnessed it during this pandemic, allowing people to stay connected, allowing business to carry on via using on line platforms like zoom and others. So much good there. On the other side of the spectrum, fear monger in by news media. There needs to be a balance, too much use of social media, can decrease a persons senses about how what they are saying and doing can do much harm to others. Additionally young people are particularly vulnerable, children are trusting, it can end in very bad ways when those who prefer to use good for evil come into play. Perhaps we need to rethink what age children are being given such freedom with technology. They can pick it up quickly, have the ability to figure out it’s uses faster than most adults, but often are not emotionally or cognitively able to decipher danger. In fact many adults fall prey to those using technology for evil. What’s the answer, I think we all need to stop buying into and clicking on things that aren’t truly relevant to us, start using social media to put positive out into the world, in a sense hijack 5he very platforms that have tried to hijack how we think, how we act and react, what we watch. Time to turn the tables, instead of the machines feeding us we need to feed the machines. Take back control. When we stop looking at and reading the fear mongering stories, when we chose to see good, do good, evil can’t win. I believe the people who build these platforms did it mostly thinking about the good, without putting thought into what could happen when money and greed turned the tables and started using them to take advantage of people. much of what was said in the Social Dilemma, is scary in and of itself because the big question is do believe have enough will to take back control.
I believe technology does and can have its place, but it must never be allowed to take the place of human contact, communication with each other. There is many things we as people must wrestle with and decide how we move forward into the future, I believe covid 19 is bringing many of them to light.
I haven’t written for a number of days, many things rolling or rattling some might say, around in this brain of mine. Which seems ironic in itself considering I have Dementia, I may have had to check numerous times today on what day of the week it is, at this moment I’m still not sure. But it doesn’t matter, I may mix up dates, days and time, but it doens’t mean I’m not capable of some very deep thoughts on many things, and I actually view things from a different prospective than most. My thoughts will not and often do not align with many others but they are mine and I stand by them.
This last few weeks have once again found me struggling with health issues, I have actually never rebounded to where I was last fall or even this spring, and I am finding myself and my ability to fight anything that hits me more and more difficult.
In conversation today, my doctor said that even this ( I have an infection or celllutitis), in my arm, it is bad), I have been spending 3 to 4 hours a day at the hospital getting my IV therapy, I can now how have treatment orally and at home, unless it becomes worse again. I’m so exhausted, some days I am sleeping 14 hours. I get up to attend to my dog, tackle one small thing each day, and believe me those small things feel like presty major accomplishments at this point. My Doctor says it will be weeks still before I’m clear of this, Ugh, truly, I have things I want to do.
But as the doctor very gently told me today, when something hits my body, it sends my whole system crashing and struggling, when others would have their bodies kick into high gear to help fight whatever is happening my simply cannot. We also had to think about the fact that I have done extremely well until this last year, but the reality is I am in year six of a three to 8-year span. The next thing is he has decided at that I need a flu shot this year, first time in five years he has felt that way, he wants to administer it himself so will do that on Saturday. I know my system is weakened, I will be going to a nationalist now, to help balance a kidney /brain program, my kidneys are no longer working that well, the foods I need for my brain are not great for my kidneys, they will help navigate a balance. Whoever thought avocados could do harm.
It is absolutely exhausting trying to keep moving forward, some days, it seems like a futile task, especially when I am already not feeling well. But I try to focus on the things that bring value and meaning to my life, I still show up, every day I show up putting whatever value I can into my life, into meetings and organizations to hopefully try to help make changes happen. And the real silver lining is those friends who allow me to stumble along but also have the wisdom to just show up and be there, with a hug, a dinner, whatever they think I may need. I am eternally grateful for those very respectful gestures, kindness matters.
Next thing rattling around is something I really paid attention to while in the hospital every day recently, and I apologize to my female nursing friends, because I know some of you may be offended and I mean no disrespect and I have alot of respect of some of the nurses. But one thing was so glaringly obvious to me that I then had to spend much time thinking about and pondering the why’s of this. Why are female nurses acting and behaving like they no longer have the capacity to be kind and caring and compassionate. Why are they sitting at the desk, ( at one point we sat for two hours without so much as being given even a look of compassion, listening to nurses sitting at the desk discussing how awful thier schedules are, how horrible of a health Authority they work for, how they don’t get another weekend off for 6 weeks, and on and on it went, they were feeding on each other, and there we sat, sick, stressed, some filled with anxiety and thats what we got.
Now I am the first one to say there needs to be a better life balance for people working in health care, they need more time off, and the list goes on, but sitting at the desk, making each other feel worse, does nothing for each other nor does it help the patients who are already stressed, it leaves them to sit and wonder if they dare ask for help, or if they’re that unhappy how are they going to be able to look after me. It adds stress to already stressed people. So nowhere in all that time did one of them leave the desk to see if anyone needed a blanket, needed water, just needed to be told, we haven’t forgotten you, we will get to you as soon as we can, instead, they sat on their stoops, bitching and complaining. While we sat like slabs of meat waiting to go to slaughter. Oh did I say I finally, in excruciating pain, arm on fire with infection, in tears, finally made my way ( only a few feet) to where the nurses were sitting, and said I couldn’t sit without getting something for my arm, so I had to leave to find ice or something, barely looking up one said, well I could have given you some, I responded but you didn’t, she shrugged her shoulders as I left, totally uncaring about the situation any of us where in because she was to busy feeling bad about her unfortunate choice of careers? I left coming back hours later when there had been a shift change, and I had gotten ice on my on firearm and spent another 5 hours waiting to be tended to, this time the difference was a lovely lady, whom I have the pleasure of being able to call a friend was working and so I was given icepacks so that I could withstand the pain until a doctor came. Now if the hospital was busy and overrun its one thing, but they actually closed part of the ER down, because it was so quiet and they didn’t need it in use for the day, not as many people are going to the hospital since Covid, and trust me, I wouldn’t if it wasn’t necessary.
The next few days were not much better, but I endured and tried to be as nice as possible, sometimes hard for me, as these days I usually say what’s on my mind, but then the next couple of days I had male nurses, who were not sitting behind the desk complaining they were talking to us, the patients, they were busy stocking up supplies and generally working and checking on their patients. In fact, because I have very tiny and twisted veins, difficult to get a needle into, the difference was shocking on how that was handled, the male nurse when he first came in says I saw in your chart you have veins that like to misbehave, I chuckle say yes sorry about that, he says never be sorry, it’s my job to look after you, we discuss the issues they usually have finding my veins, all the while hoping that the line that’s in will hold. Go back a few days, when I tried to explain they needed to warm my arm, use the light to find a vein, I got told “I know how to get a line in” this was a nurse and her ego, because I was never questioning her skill, only trying to ensure it easier for her and definitely easier for me, after three murderous attempts to get a line in she threw her arms in the air and said I’m done and walked away. Wonder how much she thought that helped me. the next nurse used the tools I have been told to mention to them, by many nurses before them, she got the line in, it did however have to go in the infected arm because they could find no veins on the other, where the tree murderous attempts were made. Know all this is happening while I am in extreme pain, sitting in a waiting area, because they have not even bothered to put me into one of the many empty rooms that are for ER patients. Yes, these types of things can make a difference in how someone responds and manages through an illness. Anyways back on track, my vein blew, the male nurse had me laying down with a warm blanket, he pulled up a chair, said we will just chat for a bit till I convince one of those veins to play nice, and that’s just what we did, we chatted while he rolled veins around until one decided to play nice, the needle went in with no issues, and he said see sometimes you just have to have patience, Wow, Wow, so why did he have time, why did he have compassion, why was he able to make all the patients feel like they mattered, another 3 hours and another change in veins, I was on my way. Feeling like I had actually been cared for, I told him I’d like to clone him. Know this is not the first hospital stint for me and not my first overview of this, I’ve witnessed and experienced it before on many occasions, my question is what is the difference?
Is it how they view their jobs, they are there to do a job, so they do the job, not once was their conversation about job quality or lack of, or rotations or days off, there was the odd question of did youget to enjoy Turkey dinner, but that was while busy doing other stuff. They were at the desk long enough to chart something, get something, and otherwise they were actively engaged in patient care.
I know there is many amazing female nurses out their, and my heart goes out to all who work in health care, but there is a difference and perhaps we as females have something to learn from our male counterparts, and perhaps its as simple as ensuring there is a balance of male/female ratio in the work places, because maybe then we will bring out the best in all.
I’m grateful I got looked after, I am hopeful that I won’t need to go back on IV therapy.
I’m hopefull that maybe once this pandemic comes to a close, we will have learnt and solved so many of the issues in health care systems, but until then we all need to ask if we are part of the problem or the solution. We all have a roll to play.
Finally the last bit of rambling tonight, Sometimes I wonder especially when I’m so sick I can barely be up for five hours, why I push so hard, why be up at four in the morning to sit as a panelist on a global webinar, why get up to attend a meeting, then fall back into bed with exhaustion so you can make it to the next. Why not just give up on it all.
Because it is in those moments when you aren’t sure if you’ll be able to give the talk, if you’ll be able to sit at the meeting, its in those moments you remember why you are there. You remember that it matters that you show up, you remember that for all the Brians, and Jakes and many others out there it matters, for all those I have met through this journey it matters, for the friendships with people across this country and around the globe who have become my family and friends my fellow warriors it matters, for all those who have lost their voice it matters and if I lose mine trying to get change done then I will have won in the war on dementia.
“ I am more frightened by the thought of ending up in any type of care than I ever have been of my Dementia itself”
Quote -@ Christine Thelker Sept. 2020
There is a sense that those of us advocating are doing it for our ego’s, and for some that is in fact true, But for the large majority of us we advocate because we want real and tangible change. The above quote of mine speaks to why advocating is important.
We do not have grand ideas or fantasies about things, we are advocating for real change, the kind of change that impacts others with helpful change in their day to day lives. “We don’t want the impossible we want the possible”@ christine Thelker 2020. This means we want everyone to stop talking about making change happen and actually produce change. Many of us work tirelessly, ( well actually we are exhausted from it), if we were paid for all the work we do we would be living quite comfortably, or at least not struggling to stretch disability beyond what it can cover. None the less we work with a variety of groups and organizations from Alzheimer’s/ Dementia groups to Research groups, Nationally and Internationally. And for most of us this means we are working with somewhere between 5 to 10 at any given time. Many people think it’s just fun, the reality is I’ve never worked harder, it’s important work, there is so much research happening, we have to ensure that the changes that happen are actually impactful in a positive way. For me personally I believe the way forward is “care until cure”, bring things that allow, provide and promote quality of life, until a cure can be found. September was a very busy month with advocating, and my October calendar is already starting to be overflowing. People think I am at home doing nothing when in fact, even though I’ve struggled with many health challenges again, I am pushing to stay active in my advocating. Yes it’s lovely to meet many amazing people globally through advocating, but it is not the glamorous life people perceive it to be, it’s hours and hours of preparing ( whilst living with a cognitive impairment – dementia). It’s about trying to lift others up, to give them hope, to encourage them to keep living each day fully, too focus on all you are capable of not on what you cannot. Most of us are not craving recognition, we are craving change, most of the advocates I know are amazing, kind, humble people, who like me believe that even though it tires us, even though we are frustrated to see that after 25 years very little if any change has happened, we must persist, because if we don’t then for sure nothing changes.