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.
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.
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.
So I hate that people think that dementia is all about memory loss and the inability to do or learn things. We may not learn in the same way, but we learn, we may not do things in the same way but we do things.
People with dementia are anything but stupid, in fact, quite the opposite, people with dementia are inventive and adaptive, it becomes necessary as a way to live with the disease. We become very creative in finding ways to do things we once did with perhaps ease, but know its a struggle. Others may shake their heads watching us, baffled at the hows and whys of the things we do, but the important piece is that we do. We enable ourselves instead of disabling ourselves, often people with dementia are disabled instead of enabled because people assume that because we can no longer do something we once did, or at least we cannot do it in the way they believe we should, that we just should no longer do it or attempt it.
I don’t believe people are doing this disabling on purpose, I believe they think its kinder to take over and do or stop us from doing because it is often difficult for them to watch the changes in us and how we do things.
So in fact it becomes more about them and what’s best for them than about what’s best for us. There may come a day and time when we need that level of assistance and we all need assistance with certain things. I know there are some areas that I am struggling with more and I in am need of more assistance with. But that doesn’t mean I need assistance with everything and we should always be encouraged to do as much for ourselves as possible.
So this video illustrates one of the things I do, I love water, I love photography. People often ask why I take so many pictures, well pictures trigger memories and events and places and feelings associated with the picture. So this video is some underwater pictures I took with my little underwater camera while walking in a creek, while on a camping trip with my sister and niece.
For me, this is living in the moment doing things that bring me joy, they may not be award-winning photos but they remind me of things I love. It brings me happiness to take them, then put them into a video ( I struggle with this part but after many days eventually get through it.) Building power points, presentations, were something I did with great ease at one time, it is no longer that way, and it’s ok, it doesn’t mean I should stop or stop trying. It doesn’t matter if its other people’s standard what matters is that I still try. What mostly matters is that I am still trying to live my best life despite having Dementia.
So just this past week, I was in Valemount, a small town in Northern BC, to do a book signing event, and to catch up with friends.
You see Valemount was the town were my husband and I lived, along with the kids, Natasha and Brenden, we loved our life, we loved our community. people came together to support one another, to enjoy watching the kids be it basketball or hockey, we loved our life there.
After my husband passed away, I came here to Vernon to be able to work full time, commuting back and forth, working a set going home for a set, it was difficult but necessary. Eventually, I made the difficult decision to move permanently. It was hard to leave so much and so many behind, but life changes and we have to change with it. But friendships withstand time and distance, I returned as time allows, always happy to reconnect with friends.
When my book, was released a dear friend contacted me about coming to do a book signing. She then set out to make it happen despite the challenges of Covid.
The Gathering Tree Restaurant offered up space, ( this meant closing the restaurant early) and the making of boxes of finger food ( Covid ), Remax ( Shelly Smith Battensby). Infinity Office and Health provided posters, soon everything was well planned. I din’t know the owner of the Gathering Tree or Infinity, Shelly Battensby of Remax is a friend of many years.
I enjoyed the drive, remembering many things, and reflecting on the life I had once had there. It always brings an emotional element returning to places of the past. But its also exciting to see people you don’t get to see often.
The local Television VCTV wanted to do a sit-down interview and arrangements were made for that. I did a lovely 45-minute interview done by Michael Peters, whom I also had never met, he came to Valemount after me. He did a great job and I was hoping to post it here, but it’s not ready yet, so it may have to be posted separately.
Next was an interview with the local paper ” The Goat”, another great interview and I look forward to seeing it.
The Book Signing was a great success, I met new people, including the lovely owner of the Gathering Tree Restaurant, its full of great energy, felt good to just be there, Tanya is full of life, upbeat, and a great addition to Valemount.
Just before the signing began, in came Michele, whom I also had never met ( the owner of the Infinity Office and Health Store), another lovely young woman, and she came early to do a meditation session with me before the launch, so that I could release anything that I was carrying and enjoy the evening.
These young women are bright, are following their dreams, opening businesses, living the type of life that brings them happiness. They welcomed me, they offered up time and space, and most importantly, they were the reminder of what is still good in the world. The kindness of strangers, who extended themselves to me, the warmth of a town that used to be home, the love of friends that always there with a warm hug, and welcoming homes.
By the next day, two businesses, The Infinity Office and Health Store ( Michele) had books to sell in her store and had a display build in her storefront, The Goat Newspaper also took copies to sell from their business.
The small town, where everyone wants everyone to succeed, there’s walking into a store the next day and hearing a store owner call you by name, that reminds you of why you loved this small town, and why the idea of small-town living still has a lot of pull for me.
I am so grateful to everyone in Valemount, for their support, for their friendships, grateful for the new friendships.
A heartfelt Thank you to everyone for making my Valemount Book signing a huge success. PS, the little green table, last picture below came home with me it says ” In a gentle way you can shake the world”, I believe this to be true, its what we are trying to do in our advocating trying to shake the world, to show all that dementia is, instead of what its thought to be, thanks for helping with shaking the dementia world Valemount.