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.
The last several days hav3 been challenging, so today I’ll go out to the woods, be in the peacefulness of nature and just breathe. This last while I’ve been struggling more than ever, but I know a lot of others with dementia are struggling as well, I wonder how much the changing of the seasons comes into play, the change in barometric pressure, it effects my brain 🧠, My vision has been effected, my balance and coordination, and the brain fog, but, my face is also partly numb so perhaps another small stroke or TIA, that was just enough to set everything off. I do know that I don’t regain ground like I once did, it’s getting more difficult and takes longer. I think about how drastic the changes have been since last winter and through the spring when I was sick for so long. It’s that slow death that they refer to when talking about dementia, sometimes, I want to fight it with all I have, other times, I just want it to hurry up and be over. If it’s hard for others to watch the changes, can you imagine feeling it and knowing it within yourself and not being able to do anything to control it? We always hear how hard it is for the person on the outside to watch it, we seldom talk about what it’s like to be cognitively well enough to know and understand the changes, to be aware of the changes, and be powerless over it. we can and most of us do everything we can to help ourselves stave or quiet this beast but ultimately we are not in control. It’s sobering. Perhaps, also seeing all the horrendous state of care homes, to the thought of robots taking care of people has also been a lot, along with trying to get our voices heard, and wondering if we ever will. It’s all been a lot then add in the normal life stuff because yes people with dementia still have that as well, it’s a time to acknowledge all these things, to settle into the new normal. This has then been admitting I need help in certain areas, none of us like to admit that we are no longer capable of much of what we once were but if we do this can alleviate stressing my brain trying to do what is no longer manageable.
So amidst all there is always that silver lining, and for me that came yesterday, Yes the silver linings, I talk about them often, look for them always, am grateful beyond words for them. So my silver lining came in the form of a lovely friend who graciously volunteered herself to come and help me with all my organizational pieces, so that I could keep my brain pier to focus on the things that are good for me, like my advocacy work, like working with DAI, like working with research groups. It’s almost impossible to be able to express the gratitude for this gift, a gift of oneself, a gift of time, and talent, so a heartfelt Thank you to Val Trevis, I have been so blessed to have you come into my life. it makes it easier to maneuver through all the changes when you know you’ve got angels close by helping ensure you can keep living and getting the most out of life. So this morning, after another friend showed up two days ago to ask if he could take me to the woods so I could explore ( another gift), exactly when I needed it ( unbeknownst to him), I am being guided and watched over. So I am not going into the woods not sad or depressed, just struggling with a lot of brain pain which is different than a headache, vision is bad as well but I am going feeling blessed and grateful that despite things declining I am truly blessed, grateful.
And I wonder will they hear us. Advocates are getting louder and more vocal on the inaction on getting real change to happen for those living with dementia. Surely at some point, our voices must be heard. Inaction is what has been seen for the past 25 or 30 years, there is much talk about how to help, there is always work being done around “ what can we do do make people’s lives better for those living with dementia? We continue to sit at the tables, desperately hoping for some glimmer of real change.
For me personally, I look and I see and I speak to the one change that is (IMO), the most important and significant change that needs to happen, and once it does ( I wonder when that will be), all the changes can and should follow suit. So let’s look at what that is for me, the key for me is diagnosis. Diagnosis, how it is delivered, how it is followed up. Yes that’s it the delivery of diagnosis. From GP’s to Specialist are given the tools and decide to change the way diagnosis is handed out, things will change for people living with Dementia. Being told you have a progressive terminal illness, that there’s nothing they can do, that they may have a couple medications that may help with the symptoms for a time, that you should really get your affairs in order, ( many are even told that they should start looking at and checking into assisted living and long term care , so when the time comes they are prepared.) what the hell is that? Then they wonder why a short time later you’re raging with anger, or so deeply depressed you border on being suicidal, then they all believe it’s your dementia making you that way, so they want to give you medications to alleviate the anger, anxiety, and depression. The fact is delivery of diagnosis creates and perpetuates all of these things. This must change! We know there is much that can help, nutrition, rehabilitation in the form of physiotherapy, exercise, social engagement, having purpose and feeling valued, we are offered none of the things that can help us maintain a good quality of life for a good long while, to keep us being an active and engaged. Occupational therapy is not given. Why aren’t we provided counselling for ourselves and family members to deal with the perpetual grief we must live with. when my husband died I was offered grief counselling, yet I’m told I have a terminal illness and I am offered none? This must change! How about we are given a resource guide with various groups and organizations that can help us and that provide services? How about being told and guided that there is much that we can do to help ourselves? How about lining us up with Nutrionalist, Various Therapists? Help with using technology, which greatly assists us? How about encouraging us to do all we can to help ourselves? Instead of thinking if we do and are “ could we really have dementia”? Instead of humiliating us with more mini mental tests every three months to see where we are on the scale, ( we actually know things are changing for us). And oh by the way did you know we aren’t stupid and after a time, learn tricks on how to manipulate the tests to a degree.
The number on the scale is more for you than us. ( I personally don’t care what the number says, I care about how I feel, I care about what my quality of life is looking and feeling like, numbers don’t tell you that). But if you actually talk to me I can tell you. We also know that every persons dementia will present differently, so why then does one think the number will give you the information you need. Time to throw out the old model
So let’s start by building a program that is in every medical program, from doctors to therapists, nurses and nursing assistants, that actually covers and teaches them about dementia as it is today, not just late stage end stage. We don’t just teach about end stage cancer, or a multitude of other illnesses, so why aren’t we teaching, about dementia. It’s skimmed over at best. It’s going to take the Doctors and Clinicians of today to decide they can do better, want to do better, and to start committing to making the change before all the other changes will take place. I wonder how many are willing to be at the forefront of being the change?
There is so much that needs to change, from delivery of diagnosis, to services offered, to organizations working collectively, it seems daunting, but perhaps if we can finally make the step to start with diagnosis delivery we will be on our way to having and being supported to have a quality of life.
This is Dementia Awareness Month, this is the time for change.
We recently have had some big discussions in our various groups about what I refer to as the “Ferris Wheel of life”; as we go through life we all have things we face and we have decisions to make along the way about whether we acknowledge and deal with those issues, or we keep running from them, trying to escape them, like trying to get off the Ferris wheel that won’t stop for you.
We have things that will keep interfering in the life we want for ourselves if we don’t stop the wheel in motion and fix it.
It is often said that some people are stronger than others and that it makes it easier for them to deal with things in a positive manner, so as to not have to have the same things come back to the table over and over again.
We all have the ability to decide, it’s what we do with those decisions that matter.
And they matter because if we don’t deal with our past issues and struggles, they lead to destruction, and they can and often do cause great pain and hurt to others, who we may not want to hurt, but inevitably we will if we have not dealt and faced the issues, thoughts, and beliefs that we hold inside, whether they are emotional issues, addictions, or direct our approach to things in our chosen fields.
We then must also ensure and choose carefully the Organizations that we chose to work with, are they and those working within are often swallowed up by “Corporate Egos” a term coined by Kate Swaffer, if so are they really listening to us are they really willing to make the changes within their own organizations for the betterment of those living with Dementia? Kate has been questioning many things, for more than a decade now, and says there is almost no substantive change she (and others) can report that has made by advocates and activists.
Or are they going to continue on the path they have decided is what is best? Can they admit this isn’t working it’s not getting the results needed to make that true difference?
It is very difficult to stay afloat yourself if you are surrounded by people who are drowning, and until they decide to take the steps to stop the Ferris wheel and get off, things just will continue to go round and round, creating destruction, discontent, and the inability to actually provide the care and services needed for people with Dementia to thrive.
And people who have not dealt with their own issues, cannot even though they believe they can have the ability to understand how vulnerable and fragile the well being of the person living with Dementia is.
So I keep asking myself is this why we have seen no change for so many years?
Are the people sitting at the helm of these Institutions and Organizations all stuck living with their own belief systems and unable to set them aside and actually hear and see the what’s presented to them and to be brave enough and have the courage to step out and up to help lead the way.
Is this too another of those things where its easier for many to just sit and let things remain because its what is known and familiar and doing something different is just too scary.
This is akin to the “old boys clubs”, the “Status Quo”; the Dementia field has been stuck in a rut for too long.
The Ferris Wheel in the Dementia world has been spinning for 25 + years with little or no change. People have been repeating and asking for the same things for too many years. Its time to stop the Ferris Wheels from spinning, its time to find a new approach.
Even the world’s oldest Ferris Wheels have the stop button hit, and a complete overhaul and update. Dementia needs the same thing. Fresh thinking, a restart, a whole new approach and look, let’s hope there are enough people brave enough to tear down the walls of their Organizations and Think Tanks, and take the brave walk and look through a different lens.
Maybe then we can all enjoy this Ferris Wheel of Life.
Perpetual Grief is discribed as something that is “Occurring repeatedly, so frequent as to seem endless and uniterupted”. This describes life living with Dementia.
I actually made a whole presentation called Unattended Sorrow, it was supposed to be rolled out to the long term care staff for the Health Authority I worked for, cut backs stopped it from happening. It was meant to address the often many losses that the workers deal with and its impact on their well being.
I think about that often as I move through all the losses I face on my dementia road. Maybe in some way it actually helped me be able to understand the losses and the importance of addressing them.
( Wow at times I forget how capable I once was), still am just in a different way know.
No we are not all depressed, but we most certainly wake up feeling changes within ourselves, feeling the frustrations of finding one more thing that we can longer do as we once did. This creates a sense of loss and grief.
I felt this again today, as I scrambled not being able to keep straight what day it is, then deciding to attmept to make muffins, and as you can see in the pictures, it was a disaster and another reminder of what is not longer working in your brain (despite that fact that I look just fine). No idea what the missing things were, or to much of or too little, regardless they are all in the garbage. And I am left with the realization, that very little of these kinds of things come easy for me anymore.
I was an excellent cook, I created and baked many delicious items, I loved to experiment in the kitchen, I use my kitchen very little these days, and this is one example of why. even trying to put together what would seem like something very simple like a salad can be daunting.
These are the bits and pieces that people don’t see, these are the losses that we have to manevuer through, and it is perpetual.
This doesn’t mean we shouldn’t try, sometimes it works sometimes it all comes out right, and anytime we are attempting to do things is good for our brain, maybe not for our self esteem, but good for our brains.
Most of us can go through our days very aware of the many things we come up against that are more challenging than yesterday or the day before, and some days we get up and everything works, like there is nothing wrong, we don’t control it, we can’t control, becasue if we could I don’t know any of us that wouldn’t be running to sign up and get back to doing things we always have. I no longer have people for dinner, to difficult to figure out if I could pull it off, to humilating to have a big dinner flop, easier just to forgo those things, yet they are things that I used to thrive on, barely finished one dinner party and planning the next.
I have learnt to just ebb and flow with the changes, it doesn’t mean it easy, it doesn’t mean there isn’t days like today where the reminders and the losses to hit you like a ton of bricks.
It is important to remember that if you know someone with Dementia, their losses and grief are very real, it comes at different times, most to live in it, but they do have to live through it when it hits, having the capacity to have the empathy and undersanding can help them immensely.
Ok today is a real mixed bag of stuff, but another picture of what my ife looks like, alot of notes, that likely make no sense to anyone, that I look at and have to try to figure out what it is or was referring to and the context around it. So I’m going to try to have a little fun with all of these things here, I may have written about them in the past ( this is likely), or spoken about them, but here we go.
Age Matters in Diagnosis – why did I write this down, I have no idea, but I do know its important, and to me its important because, when a diagnosis is handed out it should have alot of consideration given to the age of the person, we will deal with accept and handle the delivery very different at 45 or 50 than at 80 or 85. Why? Being at different stages of life, what we may want or not want to do with the diagnosis, and how we handle it emotionally will also be impacted by the age we are at. Are we at the end of our life journey, at the middle of it, at the peak of what should be our best years? All these things matter and they need to be considered when delivering the diagnosis.
Relationships – Recieving a diagnosis can and often does change the relationships between spouses in a marriage. When people are frightenend, because we have yet come to a place where a diagnosis delivery is done in a way that promotes the hope, and the tools as to how to continue to live instead of going home to die. The dynamics quickly can change. I dislkike the term caregiver, we give to spouses, and it happens almost immediately after diagnosis, ( we need to change this), the spouse is still a husband or wife first and should be made to feel that way, but we ( society in general) immediately starts to refer the undiagnosed spouse the care giver. Taking care of each other is part of being married, we should’nt label people they are the husband or wife of someone living with Dementia. Lets try to remember that first and foremost, lets help them thrive together in their uncharted waters.
These labels create unneeded and for the most part unwanted feelings of making the person living with to feel less of a person, our person hood is important, it effects the self asteem, our sense of self, our sense of being a partner, leaves on feeling somehow inadequate.
It can also instill the feelings of regret, guilt and anger, within the other spouse. Labels – I disagree with them.
Perceptions to Reality – Sometimes its like people are mad at us, at times thats what we precieve. When in reality its sometimes that people are walking in terrioritory that feels like walking in quick sand, they don’t know how or what to say to us. They are going through their own sense of loss although many don’t or arent aware or refuse to accept that, they are griefing thel oss of a spouse as they knew them, or a friend as they once were. So at times what we percieve or what they precieve may not actually be the reality and if we are lucky we can have open and honest conversations with people that will allow us to help each other move beyond perceptions that can damage relationships of all kinds.
Making Decisions are a Different Process that those by people without Dementia – If we make decisions that are not the same as you would or that you think we should, it does not mean we are not qualified to make decisions , its just we are making them from a different place than you are.
This is because we live with a terminal illness, it changes how we precieve life, how we precieve the world. It doesn’t mean we aren’t capable it jsut means it might be more difficult for you to understand our thought process that makes us arrive at the decisions we do.
Ok I could give you a ton more of my notes, thoughts etc. but that’ ll do for know. You see when my brain is struggling to do things like make muffins, it takes me to that place, which by the way wasn’t there before my diagnosis, it is one of the silver linings of my dementia, it sends me to my writing desk. my brain relaxes here, it quiets, it is happy here. I can no longer remember ( actually thats been on going for a long time) rmember what I write, but it does allow me to write, for this I am grateful
So I hate that people think that dementia is all about memory loss and the inability to do or learn things. We may not learn in the same way, but we learn, we may not do things in the same way but we do things.
People with dementia are anything but stupid, in fact, quite the opposite, people with dementia are inventive and adaptive, it becomes necessary as a way to live with the disease. We become very creative in finding ways to do things we once did with perhaps ease, but know its a struggle. Others may shake their heads watching us, baffled at the hows and whys of the things we do, but the important piece is that we do. We enable ourselves instead of disabling ourselves, often people with dementia are disabled instead of enabled because people assume that because we can no longer do something we once did, or at least we cannot do it in the way they believe we should, that we just should no longer do it or attempt it.
I don’t believe people are doing this disabling on purpose, I believe they think its kinder to take over and do or stop us from doing because it is often difficult for them to watch the changes in us and how we do things.
So in fact it becomes more about them and what’s best for them than about what’s best for us. There may come a day and time when we need that level of assistance and we all need assistance with certain things. I know there are some areas that I am struggling with more and I in am need of more assistance with. But that doesn’t mean I need assistance with everything and we should always be encouraged to do as much for ourselves as possible.
So this video illustrates one of the things I do, I love water, I love photography. People often ask why I take so many pictures, well pictures trigger memories and events and places and feelings associated with the picture. So this video is some underwater pictures I took with my little underwater camera while walking in a creek, while on a camping trip with my sister and niece.
For me, this is living in the moment doing things that bring me joy, they may not be award-winning photos but they remind me of things I love. It brings me happiness to take them, then put them into a video ( I struggle with this part but after many days eventually get through it.) Building power points, presentations, were something I did with great ease at one time, it is no longer that way, and it’s ok, it doesn’t mean I should stop or stop trying. It doesn’t matter if its other people’s standard what matters is that I still try. What mostly matters is that I am still trying to live my best life despite having Dementia.
I was planning on adding this to yesterday’s blog but didn’t receive it until know so why not have another blog.
This is another piece of being vulnerable, but also a piece that if we allow ourselves to be, we have a better chance of helping others. To help change the view of what a person with dementia looks like, what it’s like to live with. It’s not about being in front of a camera with that oh look at me thing going on, it’s sitting in front of the camera knowing full well, you look exhausted, you don’t speak as well as you once did, you mix things up, you make mistakes. I can see them all in this interview, you likely can’t, but it doesn’t matter, what matters is that in an attempt to try to make things better for others I opened myself up to that vulnerability. It’s about not shying away from taking opportunities as they present themselves for the greater good, and the greater good in all of this is changing the perceptions around dementia. It’s about advocating to make changes that are long over do, and not giving up until things are better for all living with dementia. I am grateful to have met Micheal, he made me feel very comfortable and I believe he really got to the the points about dementia that need to be heard. So a huge Thank you to you Micheal and again to all for making this trip such a memorable one.