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.
I know and my doctor knows, those who are close to me know, that since this time last year and particularly since March, my health has been taking a hit, one thing after another, complex, and complicated, and since the end of September more challenges, so here I am 20 days later still fighting. The fatigue it brings is hard to describe. This time it’s an infection that doesn’t want to let go, it’s painful, and I just learned that it is the most common infection for people with dementia? Yup I’m learning, every day I live with this illness I learn. I’m am showing this picture of what it looks like with Dementia and illness combined, it’s not pretty, but so often the only time anyone sees us is when we’ve spend hours making ourselves at least presentable enough to manage a meeting or do what we are required. the reality is the takes a great deal of effort on our parts and a great deal of pushing ourselves. We push past the pain, past the exhaustion and all the normal struggles we face with our dementia. I’ve always said I didn’t want to make it look like life living with dementia was easy, and that I would never sugar coat the reality, so this is the reality. There is no sparkle in my eyes, there is tired, there is pain, there is a body stressed. I am not stressed, my body is stressed, trying to fight off all the other complications plus deal with the effects of the dementia, it’s a lot for any ones body to do. Compare the picture on the left with the picture on the right when my body is managing it all better, its shocking really even to me.
I’m always learning because I’m always trying to help myself, it’s not always easy, many times I’ve crumbled to the floor in tears, wishing I had a partner who could get me a tea, or and ice pack, or make me sandwich, sometimes it feels too hard, but I push myself, I push hard.
Monday I am going to start an Osteo exercise program, it will be twice a week, it was designed by an Occupational and a Physiotherapist, it’s designed for people with Dementia and has never been offered here before, but I need to regain strength. I am also going to be going to a pole walking sessions, also for people with dementia, The goal with it is to help with balance and coordination. I am thrilled these programs are being offered, I’m not sure whether they will be sustainable beyond the nine week session as the cost comes into play, These are the very types of programs that should be part of the overall program for people with dementia.
These are the things we advocate for, I’m not sure how or why we have to, if we are kept moving, kept agile, we would sustain less falls, require less hospital stays, maintain our independence for longer, all of which in fact saves the system money, so why are they not part of the plan for people with dementia. Easy answer, there is no plan, with other illness, they help build a plan to help you to recover and live as best you can, with dementia there is simply nothing.
So I will continue to push myself, I will continue to strive to maintain my health as best I can, my doctor says the reality is I’m in year 6 of a 3/8 year diagnosis, that my body is having a harder and harder time fighting all time.
To date there is much talk about what can be done for all living with Dementia with very little tangible things actually happening. After 30 years I think it’s past time that all this changes. Until then I will be trying to regain my strength, so that I can continue to advocate for the very things that are so lacking for all of us.
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.
So after an upsetting talk with my specialist, after struggling for weeks, knowing I just have to keep struggling and pushing forward, knowing that winter is approaching, I can’t wait till I’m stronger or feeling better, I need to keep doing those things that are important. Or at least important to me. So with the assistance of my friend being willing to journey along with me, because I wasn’t sure if I was up to this little trip on my own.
Even though that by comparison to many of my little trips and adventures, it truly wasn’t far, about a four hour drive from home. For those who know me that would be the kind of drive I would do just to have coffee. But I also recognize when I am able and when it’s not wise for me to go on m6own, this was one of those times. It was extremely important for me to see my sister in law, before winter sets in, she is important to me, and not knowing when or if I get to see her again, seeing her before winter is always a priority for me. I’m grateful my friend June, who has had a busy spell in her life and we haven’t had much time together decided it was the perfect opportunity for us to have some time together and for her to visit some family at the same time. I was struggling, my breathing wasn’t great, I had a lot of chest pain, and brain pain, but it was a beautiful drive, the colours are changing to fall colours, the highways are quiet. We supposed at Bridal Falls, so I could have a rest, a good stretch, a little walk in the woods to do some deep breathing, it was beautiful. I did our support group call from out in the woods, it was lovely to share a little of that with my DAI family. It was a great afternoon visiting with my sister in law and we enjoyed chatting about old times over dinner. Off to bed early but last night was not good at all, but this morning after much coffee, after a shower and starting to feel like the lighting bolts were subsiding, I could see clearly, I looked forward to a better day, I met up with June, we did a little exploring, while my sister in law rested, at 2, my sister in law and I went to value village, she enjoys going so off we went, then home to a couple hours of rest and ended with a lovely dinner at the keg. I can’t tell you how glad I am that no matter how much my health is challenging me, I am and feel like I’m winning every time I refuse to let it stop me from the important things. It may be hard, i may not be as lively as I’d like to be, but I give everything I can. This has been an important visit for both of us sister in laws. Tomorrow will just be a quiet day of us enjoying our visit, heading home Monday. Tonight I feel as though maybe I’ve turned another corner, the lighting bolts have not been paralyzingly me today, the dead look in my eyes seems to be not as bad, I don’t want to hope for to much, but I’ll take the day I was given today.
On a side not, the crazy often funny side of Dementia, at least for me, I had packed what I thought was dry shampoo, in case I needed it for a quick fix with my hair, so getting ready for dinner, I spray my hair, I can’t figure out why nothings working, spray a little more, shit no for some reason it feels oily, ( my hair is never oily ( what the heck), in a heap of frustration, unable to figure it out, I pin my hair up and back, it will have to do. When we get home I decide to shower because I can’t stand that m6 hair is oily, taking my stuff in the bathroom, I pull out the dry spray again, I look at it, then, turn it around, turns out it is dry spray deodorant, omg, too funny, apparently when shopping at some point and time I bought spray deodorant ( no recollection of why or when), and then somehow assumed it was dry shampoo for my hair. Oh well m6 sister in law and I laughed a good laugh at it. It’s all in a day of being me. Off to sleep know to see what tomorrow will hold.
Today was one of those days, well actually I’ve been struggling a lot for a few weeks, maybe I’ve alluded to that. I thought that perhaps this chain of events was caused by the smoke from the fires, it triggers responses in my body that aren’t good. Today my specialist confirmed it, Funny how well we understand how our body is working, but I guess after six years going through the constant changes one should have a good understanding. I’ve been feeling like My body has been in crisis again, and trying desperately to do all I can to prevent a told free fall and end up with another long hospital stay. The fatigue at these times is unbelievable. I go to bed at 5 sometimes 6 at night, in bed till 7/730 am, three hours later ready for bed but I push through the day. Grateful that I can still push.
He was worried because the smoke is supposed to come back over the next few days, it has created the inflammation in my system, because of my lungs only being 40 to 50%, this creates lack of oxygen, creates my heart to work to hard and all other organs, it creates brain pain, because of inflammation and lack of oxygen. there is nothing they can give me, the drugs actually make me worse, they’ve tried that, so keep walking, nothing strenuous, but do what I can, if the smoke the comes back I have to really limit my out door time,. It’s effects on my dementia are front and centre, the daily struggles amplified. This is also why I gain weight, it’s so frustrating when you work so hard at nutrition and staying active, but living with a terminal illness creates all kinds of strange things to occur within your system. We are going to see how I do over the next two weeks, hopefully my system will rebound, if not another plan to make. Most days I don’t mind I just live with whatever today gives me grateful for the things I can still do, but sometimes it all crashes down and you just want to have a melt down, to cry, you ask yourself, why do I keep fighting so hard. Somedays you question everything. Those days don’t happen often because I am a positive person I am feisty and I am a fighter. But every once in awhile, it hits you. This afternoon was that time for me. Listening to the doctor I just felt defeated. I know every time this happens my rebound takes longer, it’s slower and I never regain where I was. It is my reality, but I do also have things I need to accomplish, I need to make sure change happens, I want to finish my second book, I have a couple projects on the go just waiting for covid to leave so I can get them done. I have things to do….so I fight. Tonight tucked into bed, I know today was necessary, and tomorrow will unfold as it needs to.
Yesterday I wrote about all that’s wrong in care, today I’ll show what was right at one time. Years ago when working in long term care, you looked after the resident and their families, often they became like family to you and you to them. You made sure a spouse who came every day and stayed from 10 am until after supper hour, got fed along with the resident, sometimes we would even shave them, or turn their sweater outside in because they came in with it on inside out. At times, you had a family member needing to fall apart at the prospect that mom or dad didn’t have many more hours left, and you sat with them, let them talk about it, hugged them and often cried with them. Sometimes they also worked in the nursing field, and they would struggle feeling like they had to carry their families through, we could and would tell them it’s ok, you can be the daughter, we’ve got this, take your nurses hat off. As a team, if you were particularly close to one of the residents and it was their time to depart, the rest of the team would step it up and look after everything so you could have as much time with the resident as you wanted. It was true team work. It was week after week attending the service of one of the residents because the family asked some of you to attend. You were always honoured to be in attendance, and it helped with processing the enormous amount of deaths you dealt with. It was after losing a resident, having the family call months later with a request to see if you could go to the hospital and be with the spouse of the resident you lost, because they were now in hospital and palliative and they knew that person would be comforted if you could go, so those that were asked went, transformed the hospital room, so it was a comfortable place to sit and hold someone’s hand. And you spelled each other off and you cried with. The family when it was all done. These bits and pieces were not part of the job, but they were part of being human, about caring. During one particular time a family member asked the charge nurse how we did it, she said the team runs on love, and we did. We have so much more of ourselves, but we were allowed to, we educated the families on the dying process on what to expect, what the changes looked like. They always new if they couldn’t get there we would be there, often staying beyond our shifts holding the hand of someone who was dying. We made sure every resident was made to feel special, everyday, the meals shared were full of chatter and laughter. A hug and kiss as you tucked them in, not on our schedule but on theirs. I was fortunate to work with an incredible team, I will always hold them in the highest regards. I also was fortunate to have a manager who also believed in taking care of the staff as well as the residents, she could and would walk onto the floor roll up her sleeves and help with care, she would and did, have staff in her arms as they fell apart. I worked with her on many projects for the residents as well as the staff and we even did a complete overhaul of the staff room so staff could actually relax when on break. This was an environment of caring, the residents felt loved, their families felt loved, families got to know one another, and supported each other. The teams did amazing jobs of doing what is so sadly missing and disallowed these days. They were allowed to be human. The residents rights and dignity were always upheld. You pulled on each other strengths, every one got their hands dirty when needed. The residents were told when another resident was dying, we ensured they could say their goodbyes, we always respected the fact this was there home, they were part of a unique family. We couldn’t imagine putting them through the emotional distress of them not knowing until they saw a body being wheeled out, or suddenly someone new was at the dinner table. These are all important parts of doing long term care right. I’m grateful I had the honour to be with so many residents and their families, and so grateful that I Worked with such an amazing team. I know the ones still working are struggling under the current state of affairs, my heart aches for them and for the residents.
So let’s take the good from years gone by, the mistakes of these years and build care homes that are small and intimate, that enable instead of disable. Let’s finally abolish locked units these are all against a persons human rights, let’s stop segregating those with dementia. Let’s start providing true dementia training, let’s start giving all of our seniors the respect they deserve, and let’s give them the same quality of life they worked so very hard to achieve for us. Let’s take these large institutions and turn them into rehab units, places for the homeless, rehab units for people who’ve had strokes, accidents etc, to free up hospital beds for those waiting procedures, let’s make them into bright and happy day care spaces. small intimate homes can be very cost effective, can promote wellness in both the residents and the workers, incorporated into the community’s settings it ensures our seniors maintain feeling like a valued parts of our community, allowing them to maintain dignity.
I’m posting an article I wrote after the loss of Brian, it will be one year ago on Wednesday. Brian’s life mattered, Brian mattered and during Dementia Awareness Month it’s important we remember Brian.
It is imperative we look at what transpired during Brians last year, and it highlights so many issues within Long Term care that were present before COVID.
Today there are still many issues and they cannot all be blamed on Covid and in the coming days I will talk about my personal view on many of the issues in Long Term Care, but today is about honoring a man, who in my opinion the system let down.
Let me make it very clear that there were many who crossed paths with Brian who did everything they could, they are incredible people who are caught up in a system that too often stop them from providing the care they could and would if not hindered and buried under bureaucratic policy and procedures that have nothing do to with the human elements of care but are more about operational and $$. So not only was Brian and his family treated unjust manner, so too are the workers.
Again I will tackle that in another blog. But I will say that Covid brought issues to light it is our responsibility as a society to ensure that things that happened to Brian don’t happen to anyone else.
Fentisha has become an amazing friend and someone who supports me and all my flaws and ups and downs with my life with Dementia. I feel incredibly blessed that Brian brought our lives together. The bond created walking through Brians’s journey wit Fentisha shall forever keep us connected in ways that are hard to explain.
So please read and share Brian’s Story, there is too many Brian’s in Canada and I believe globally and we need to keep these stories in the forefront until real change happens.
This story is written and shared with Permission from Brian’s Family
This is Brian’s story, well it’s my perspective on Brian’s story. I first met Brian’s daughter when she reached out to me through my blog, Brian lived here, she did not, she was trying to get help and to understand what was happening to her dad. We talked many times, questions and tests to request the doctor to do, she suspected Dementia but was struggling to get the help and a diagnosis for her dad. She came to town, it was then that I met Brian for the first time. I’m 60, Brian a few years older at almost 65, Brian was struggling, I could see it, but he was still engaging, still had a spark, and a sense of humour, we all had lunch downtown, Brian enjoyed going downtown for coffee/ lunch. But Brian also liked and had for most of his life lived a life in isolation, a lifestyle he chose and was most happy in. ( I believe if we look back in history many of our talented and brilliant lived lives of isolation, likely in large part because it then allowed their creativity to flow, I believe this was likely the case with Brian, he was brilliant, and an extremely talented artist, photographer and craftsman.) Brian and I connected on that first meeting, in a way few would or could understand, he knew I had dementia as well, we had a knowing between us. It wasn’t long after that Brian ended up in the hospital, I went to the hospital, Brian was extremely sick at that point, again his daughter came, she stayed with me, I am only minutes from the hospital. Once Brian started to improve the cracks in the system started to show, Brian was placed in a room with another three people, this is not in his best interest, his meets are now not being met, this is a man who’s life of isolation requires he have that quiet space, which he could not have with others surrounding him, he did fairly well though given the circumstances, unless they were trying to do things he didn’t want, or they didn’t have the time to help him with the things he needed help with. I visited Brian often, we would walk the hallways, I would take him boiled eggs and yogurt. He would always ask me where my car was ask me to help him escape, we would laugh, I loved Brian’s humour, before I would leave I would always tell him to be good, he’d laugh say no, I’d say good, there’s no fun in being good anyways. Finally Brian went home, but this was short lived, again Brian ended up in hospital this time it became apparent Brian was going to need care, and the family started looking at options. Brian’s Dementia was moving at a fairly rapid pace, I took Brian’s daughter to several facilities, the concern that was always at the top of the list was Brian’s absolute need for his own space, his own room, so he could maintain his privacy, and his quiet. Unfortunately Brian ended up in a facility in a four bed unit,( which should be outlawed), it wasn’t long before Brian was struggling, his daughter was continually trying to get them to address the fact that Brians struggles were being created by the environment they had him in, he was purple dotted( this means aggressive and behavioural issues, Brian was not a mean or violent man, Brian was a man who could not and did not function well in an environment where there was constant noise and chatter. Another battle to have Brian moved again, ( it is a known and proven fact that these moves create decline in people), Brian was moved to another faculty, again Brian’s need for privacy and quiet were fought for, he needed to be able to stay in his room, he wanted his meals in his room( this was against policy) so again Brian was subjected to environmental things that caused anxiety, stress, agitation for Brian, nurses trying to trick him by putting pills in his yogurt, as though because of his dementia he wouldn’t know( dementia people are not stupid, they just can’t communicate in the same way anymore), so if they had taken the time to tell Brian they were going to give it to him that way, it may of been better received, Brian should also have been given the right to refuse these medications. Brian still had a great grasp of what was going on around him, he understood, but he wanted his wishes to be upheld and fought back when they were not. He communicated in the only way people heard at this point, and often that was with behaviour. Brian’s family would take him out, he always did well, he continued to struggle in the facility though, forced to be in a dining room of strangers, I still had good visits with Brian, then Brian ended up back in the hospital, this time things did not look like he would recover, Brian had a very explicit health a Care directive, I arrived, I spend time with Brian’s love Ann, and his son, I explained what the process of dying can look like what changes they might see, I spent time talking with his son, who was struggling, But he did and was able to finally say to do what his father wanted. Brian wanted no interventions, the doctor
on came in, I was talking to Brian, asking him, if he understood that by having no interventions like antibiotics etc, he would die, yes he knew that, the doctor said “ he doesn’t know or understand , wow, I couldn’t believe what I had just heard, he then went on to say he wasn’t comfortable and he would continue treatment until Brians doctor ( he was away) returned. This is where education even for doctors becomes so important ( whether the doctor was comfortable or not should have never come into play, Brian had a health Care directive which was know not being upheld). Brian wants me to call his daughter, I do, she assures him she’s on her way. And so the family injures the stress of know having to fight a fight that they shouldn’t have had to, to have his wishes upheld. They wanted him moved to Hospice, that’s not possible either, he has to be returned to the facility ( the family is told they can provide palliative care there so they do not transfer patients to hospice. ( This is a human rights issue). Again more stress for the family, Brian is transported back to the facility
, Brian’s daughter again staying with me to be with her dad, I get a message from Brians daughter she is distraught, I go to the facility, she is filming her dad writhing in so much pain and discomfort, unable to get help, I ask have you called the nurse, she said I keep asking they keep telling me she’s on her break., there is a young care worker who has been brought in who was supposed to extra hands, he is pacing up and down the hall and standing in the dining room, ( if he could do nothing to assist with Brian proper training and mentoring would have seen him spent time with other patients who could use some one on one time, instead we hear another staff member yell at another resident ( to shut up, I don’t want to listen to you today), ok I’m upset, I worked in care for years this kind of stuff should not be happening. ( what happened to the days when nurses came off their breaks when needed then resumed them once situations were looked after, or nurses from another floor came and stepped in so people were looked after. This was outrageous, finally after bearing witness to Brian’s suffer as long as we could, we marched down to the nurses station, found the nurse back from break doing paperwork ( perhaps the first stop should have been Brian’s room), we asked that the doctor be called, we were told they would let us know once they’d done it( in other words we were being dismissed), no not this time, insisting the doctor be called and that the daughter speak to the doctor, finally Brians pain was being addressed. However in the coming days, it was exhausting for the family trying and fighting to ensure meds were given on time, I sat at one point for 5 1/2 hours not one care staff came in the room to check on Brian, the nurse came, gave him his pain meds and left, another family member was there for eight hours no care staff, one day his meds were 1/12 hours late, when the nurse was questioned the short reply was , were short staffed we will get to things when we get to them. Sorry Brian is not a thing he his human being at the end stage if life. Yes there were staff who tried, and who were kind and caring, and this isn’t really about the staff as much as it is about a system so broken, that the care is gone, taking care of a person at all stages gone, and you can see staff are exhausted burnt out, wanting to a job, that policy and procedures prohibit them from doing. This is about a man who deserved better from a system he worked and paid into his whole life. This is about a family who shouldn’t have to endure the added stress of fighting a broken system at a time that is already unbearably difficult. And yes Brian’s journey is about me, I live with Dementia, and watching and witnessing all this has left me traumatized, In the weeks since Brian passed, I have said over and over again, it is this very thing that I witnessed that causes me to say I’m going to go buy and stock pile illegal drugs, so I don’t have to endure any of this, I halos have a very explicit health care directive, but I just witnessed one not being honoured, I no longer feel like I can rest assured my wishes will be upheld. I worked in care and dementia care before my diagnosis I was proud of my career, it was an honour to be with someone on their final journey, it was their final home, they are no more than warehouses know, it’s devasting. I am know terrified. I’m glad Brian’s family fought so hard so he could finally have his peaceful passing, I know he looks down proud of them. I will always remember Brian for his humour, that he shared with me, and for him shining the light on something so perhaps others won’t have to endure the same. Brian I will continue to advocate for all living with Dementia until I too have no voice.
About the Author
Christine Thelker worked in Dementia Care until Diagnosed with Early Onset Dementia at age 55, she risides in Vernon BC, she is a board member of Dementia Alliance International, a member of Dementia Advocacy Canada
She has spoken at Dementia International Conference in Chicago,
the United Nations in New York, and works at advocating for improvements to Dementia Care World Wide.