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.
How do we ensure tangible change? Why don’t we see actual change at the rate we want? Well perhaps we need to understand that any change is a win, it moves us in the right direction. The problem is we ( people living with dementia ), don’t have time, the clock is running for us. So although we should be happy to see that there is at least some form of change, here we are waiting.
One of the things I see as the biggest problems are policies, regulations, and government red tape hinder us from doing things in a manner that are proactive and person-centered but instead are money pits that they keep throwing more and more money at studying, trying to reinvent a wheel that has never worked. hiring more managers, doing more reviews.
What we need to start fresh with fresh ideas, people need to get thier egos out of the way so that real changes can happen. And they can happen quickly, and easily and if we allow these things to happen, we not only will fix the problems found in Long Term Care we will fix the problems facing the industry, with burnt out workers, and people no longer wanting to work in the profession. All of these things would require a committment of resources to get up and running, but would safe money in the long run.
We only have to look to the Netherlands and Scandanavia to see how much better people do living in small scale homes. Living in community type homes/ farms. These types of homes enable instead of disable. And for those that believe the bottom line is about $$$ vs. Being about Humane, you need to take a better look, these small homes will safe $$$ on many different fronts, and imagine it can even allow for a persons dignity, respect to remain to the end of life.
After being at a TREC webinar yesterday looking at the “ farm homes” vs care “home homes”, I cried, literally cried, as a person living with dementia who has been saying for years we need these small homes, that are actually “homes”, not institutional settings that they try to make look like homes, actual homes where people participate to whatever level they can, in real life time in real life activities things they would have always done. I cried because we are so buried in a bureaucratic mess in this country, that my hopes to see this here will likely not happen in time for me. That I, when asked yesterday afternoon by another person living with Dementia “ what are you going to do”, what’s your plan, yes most of us living with young onset have a plan so that we will not go into care. How tragic is that. We discussed my plan, we discussed his plan, we discussed the plan of others, when all it takes is getting rid of the bureaucratic mess and put some common sense into building proper small scale homes within communities, to fix this nightmare called Long term Care. Common Sense can solve a lot of problems if people would go back to using it.
I’m deeply saddened, deeply troubled, by the inability of those in the positions to look outside the box and see the common sense solutions can’t think beyond further reviews, further reports and discussions, about an issue that just needs common sense and action.
Late yesterday I arrived back home from visiting my sister in law for a few days. She is an amazing woman, who has amazed us with her strength and courage to face all she has. She truly inspires me, she has survived more bouts with various types of cancer, lived ten plus years longer than expected, unbelievable show of the human spirit.
Gathering up my little dog Pheobe from my brother and sister in laws, the neighbour’s, friends of mine came out to chat, they brought some difficult news that their ( they refer to her as their third daughter), at 17 was just diagnosed with bone cancer, and was in children’s hospital and would likely be there for six months. We talked about all the elements of the emotions they would all likely face and that we would ask for everyone to put this beautiful young girl on their prayer lists ( yes I’m asking you to add her to your prayer lists.). I brought this up for two reasons, the first being having her added to prayer lists, I will not go into details here as it is not my place too.
The second is to look at and question why does the children’s hospital and they do, such a tremendous job of care, why do they have the ability to support, the child in need( best of the best in Drs. And Nursing Staff, actually all staff,), they treat the patient, as well as provide care and support for the family, they do all they can to ensure the wellbeing of all, they have and do understand that looking after everyone’s needs actually ends up costing the whole system less in the long run.
Why is it not being looked at as a model, for other health care settings, from hospitals, to seniors care? We need to ask the question. During this pandemic it has taught us we must question and demand that better be done, that so many $$$ that are poorly spent on too many layers of management to run the bureaucracy that there’s no money left for the things that actually ensure best care.
After a very heart felt visit, with my heart aching for all of them, I got home, unloaded my car and took my dog for walk, it’s a great way to let thoughts just settle in.
Coming back to my apartment I was greeted by my neighbor, she lives down stairs from me, her husband Jake is in a long term care home down the street. She is a bright lively woman, but the toll of the last number of months are taking its toll. Jake is 74, Jake had a major stroke, cognitively Jake has no problems but requires full care otherwise and she was not able to provide it.
We’ve chatted many times in the last year about Jake about her struggles with feeling quilts that he has to be there, about the treatment Jake receives.
Yesterday, we chatted for long time, she is furious, she cries it’s becoming a daily thing. She has to fight with all of her being to be allowed to visit Jake again after four months of not being allowed. Jake cries all the time know. She listens to him be told to pee in his pad, then she hears him be told when he requests they change it that he’s only allowed a certain number in a 24 hour period, so they will only do a change when they feel the pad has reached the saturation point they are told to leave them on till. She is furious of all of this, she questions it, they cite all the policies that say this is how it will and is done. She knows that part of his prostate cancer means he know has frequent urination, she asks if they know that( they say oh he had prostrate cancer.? She stands there in disbelief and says clearly no one has even read his file, the reply is well we’re sorry but we have to follow our policies. She pointed out on many points she has brought forward that this is supposed to be “ Jakes home”, she reminds them this is what they promised. She goes on to list so many more issues. She said today she brought it to the managers attention that in 195 days, Jake has been given exactly three hours of time outside, she asked if we locked him up in his “ home”, in his room for 195 days, with only three hours of fresh air and outdoor time, did he think he would survive. He walked away.
She would take Jake out in his wheelchair for walks but she’s not allowed. We talked at great lengths about all the changes ( actually dismantling of long term care homes) that needs to happen.
Jake is another of our society who are being warehoused. No consideration given to the fact that sitting in a wet pad for hours and hours is taking away his dignity, takes away and destroy’s one mental well being. She said she actually wishes he would die so he would not have to endure what he’s going through by having to be in a care home.
She would be happy to bring him home if she could have the support put in place to allow it, but that isn’t a available either.
This is Long Term Care right know today here in Canada, This is Shameful. This is the way the very people who built this great country are being treated… “our country is not so Great” when it comes to looking after and ensuring our elders are given the care and respect they deserve.
This is and must continue to be brought forward, we must use our voices to fight for those who no longer can.
“ 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.
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.
My career was spent working in long term care and dementia care, dementia care, and Palliative care were my passions. They still are but sadly with a diagnosis, your career is stripped away. This even though many with Dementia still have much to offer, and perhaps we couldn’t do the same job, but we most certainly could have and for many still could be contributing in many ways.
It was so humiliating and demoralizing to get a call one day from the same people who stripped me of my job about a year after my diagnosis, to say that with my knowledge and skill set it would be great if I would come and volunteer and help the residents and staff alike. I believe it was ill-thought-out and may have been even a well-meaning carrot, but truthfully it was hurtful and left me devasted. So my point is I am fully aware of all that goes on in long term care, and still have a good pulse on it, knowing many who are still in the system working, and with having the ability to assist others with their loved ones in care. I don’t come at my thoughts with nothing to base it on, actually quite the opposite.
Long term care homes were meant to be places where people could live, for their final years, they were meant to be homey, comfortable, enjoyable. For a time they tried to do models of Eden philosophy, Gentle Care, but then, they realized that if they cut all those things out ( and they weren’t perfect but definitely better than the current practices.) they could save a lot of money ( or at least that’s what they like us to believe), They stripped away anything that looked like a home environment, went back to the institutional look. They stopped having food made in house, trucked-in food made in big facilities( cost-effective they say. I wonder how many of them would be happy to sit and eat what is nothing more than slop day after day.
Nurses no longer nursed, they buried them in paperwork, gave them so much red tape to maneuver through, everything looks great on paper. So many reports, no time to do care. The Rn’s became case managers, the LPN’s were taking the lead on care, but because of all the paperwork they too are required to do, they relied more and more on the Nursing Assistants. The nursing assistants are the ones who spend most of the time with the residents, but know they too are struggling to get their “tasks done”.
This means it would not be uncommon for people to be gotten up at 7 am, put back in bed to rest??? until lunch, gotten up for lunch, back to bed until dinner time, told to “pee in their briefs because no one has time to toilet them. If they are at all anxious or pacing, give them Ativan to settle them down, because the staff has no time to actually know what is driving that agitation on anxiousness, because they have tasks to tend to. If you speak up you will quickly come to understand that things will not be actually heard, they will find ways to justify everything, after a while many stop saying anything.
The big problem with all these changes they made in the years, they overlooked the single most important thing when deciding how to deliver care. The human element lost and forgotten, instead, looking at cost savings, time savings, and ways to gather statistics.
Levels and levels of management, many of whom have never worked on the floor in long term care. Most only show up on-site if and when something goes terribly wrong ( like in the case of one of our residents who I said was going to jump out of the second-story window, for days I brought it forward ( I’m overreacting, I was told,), he jumped, he waited until I was on a coffee break ( and they say people with dementia don’t understand what’s going on), That brought managers on scene, and very quickly I was told I couldn’t talk to anyone about it not even other staff. ( Never were any of us working that day given any help for the trauma we endured). Just get back to work. These were the times the layers of management were seen, they swooped in to manage the crisis, to ensure the public perception was has they wanted it to be.
It was easy to place the ( unfortunate event on this man and his dementia when in fact the truth is it was a system, that was failing him and was not meeting his needs.
What’s wrong with long term care, they have become human warehouses, nothing more. This is a tragedy that for me defies words a lot of time, the stress on workers who can no longer care for people, who go home day after day in tears because they can’t provide the care they know and want to, ( stress is taking its toll on workers in long term care, and COVID is going to bring it front and center. People are rushed through meals ( I wouldn’t actually call them meals), laid down, after lunch, put to bed after dinner, so the workers can get their jobs done, except their jobs are not meant to be tasks, their jobs are meant to be taking care of the residents. The human piece of spending time with the residents is gone, paperwork has to be done, a whole array of tasks to complete.
In years gone by, there was a charge nurse, the whole team worked together, from the kitchen and housekeeps to the RN, everyone worked together, no one died in their room alone, you took care of the family and the person in care. They have to know caused so much division amongst workers, “ that’s not my job” happens, in the past from making a bed to feeding to doing wound care, everyone helped, RNs taught nursing assistants ( a lot of the nursing assistants from years back have so much knowledge, from being able to dress and pack wounds, changing dressings, the list goes on,), they are no longer taught these skills ( it’s not their job), it was not a “ job” in the past it was a career, you were proud to be in.
There are so many great people working in long-term care and instead of helping them provide quality of life for our most cherished people, we have created an environment that most of them are just trying to survive. These people are stressed, these people deserve us standing up and saying this is not good enough. the worker needs us to stand up. they have gag orders they are not allowed to speak openly or publicly. they need our help because they can’t do the job they want to do if we don’t help. Our Seniors in Care, need us to fight too because they fought to build the country that we live in, they need us to fight for the workers and for them, so they can have the quality of life they deserve.
They know and feel the stress of the workers and that was there before covid, so they tend to comply ( even when they shouldn’t), because they worry about causing anyone more stress, so they sit in silence. It does not mean for one minute that they don’t know or understand.
We spend so much money running the bureaucratic machine that was created in an effort to save money, and in the end, it is costing us much much more. It is costing us the lives of those we are supposed to look after, it is costing us the health of those working within it. It is no longer care.
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.
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.
Today I am devastated.
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.