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Advocates Advocating Christine Thelker © 2020 Dementia For This I Am Grateful Silver Linings

This is what was right in Long Term Care

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.

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Advocates Christine Thelker © 2020 Dementia For This I Am Grateful Silver Linings

Changing of the seasons and changing in my dementia

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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.

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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.

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Advocates Advocating Christine Thelker © 2020 Dementia For This I Am Grateful

It’s Getting Louder and Louder

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.

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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.

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This is Dementia Awareness Month, this is the time for change.