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Advocates Advocating Christine Thelker © 2020 Dementia Event For This I Am Grateful Good Grief Living well with Dementia Silver Linings Stress

November 2021

Its a lovely clear beautiful morning, I was awake at five a.m., morning coffee is tasting somehow extra smooth and rich this morning. October came and went so fast, life is happening so fast it seems, which seems odd considering restrictions from covid 19 still abound. Yet somehow here we are in another month, a step closer to another year winding down.
It seems I am so in touch with how things make me feel that somehow my awareness of things around me is so heightened, in the past of example I likely would not have given thought how things may or do impact me. I was so busy just being busy, thinking I needed to somehow prove myself, to maintain all that society thought I should. It left little time to actually be in touch with the inner most parts of me. I appreciate having the time to go within, to explore, its not always easy work, we have to walk through fear, but on the other side of it I find myself able to love who I am, I no longer set myself up for failures, to unnecessary expectations, I can love myself on my good and bad days, to see that even on my bad days when my illness causes and challenges me that it is still a day to celebrate.

Living more honestly with myself also means that I examine things, I think about the impacts of things, and one of those things of late is the use of technology in our lives. In many ways it’s fabulous it has done so much to help not only those of us living with Dementia but to everyone. Somehow though I have been examining all the different aspects, looking at things through a lens many won’t or don’t. This does not win me any popularity contests, I don’t do it to cause harm, or upset people. It’s almost like its another one of the gifts bestowed on me with my Dementia, like my love for writing, and I do believe it is a gift, to be able to look at something, see all the good it can and does do, but to also see the harm that can come if we cross certain lines. I work with and on some very interesting and good things that are technology based and have the ability to really help many, I have also been watching and seeing many things come to light that can if used in the right setting perhaps be ok, but put into the wrong settings can do harm. Yes I say can do harm, because it depends on how willing we are to look at the harm that can come, to acknowledge that and alter how and when we use certain types of technology. Yesterday I read an article written by a esteemed Doctor, who talked about how technology can be a very dangerous thing if used in certain health care settings, he was referring robots used in situations where they are actually replacing a person, doing different types of things that would normally be done by a person who while doing them is doing assessments that can only come from hands work with patients. I then watched 60 minutes where they did a program that showed the alarm has been sounded on the use of technology and robots and the damage that can happen to mankind on a bigger scale than most are wanting to think about or look at. I am and have been sounding the alarm, but still believing there can be many aspects of technology that can do great things.

This does leave me feeling like at times I am standing alone in some aspects of my advocacy work, perhaps because some don’t have the ability to look at all the different aspects. Maybe because they fear they will be somehow respected less, they don’t want to be the ones who stir the pot. I am not sure, but I am not advocating to win a popularity contest, nor am I here because it’s I have nothing better to do, or because the perks are so grand. I advocate because I live with Dementia, I believe in contributing and trying to make a difference, and in doing that at times, it means I bring things up that no one else will. It also at times made me question how much longer I can keep on advocating, it’s as rewarding as it is exhausting. It seems to be really hard right now, maybe partly because the whole state of the world seems to be in disarray on so many levels.

On Wednesday I will represent Dementia Advocacy Canada and speak at the RaDar conference In Sask. which is hosted by the University of Sask. The Radar event is specifically around Dementia and the Rural outlook and impacts felt by those living with Dementia in Rural Communities. I am really looking forward to this, it is something I feel needs to have more resources put into. I will speak about Human Rights and Dementia, another topic that has to be kept being brought to the forefront, years of people talking about it, little movement in the ways that really matter. But we keep trying, we keep keeping it in the forefront as much as we can.

Friday I will be meeting with our MLA, a week that will exhaust me, but hopefully will be steps to do more locally, provincially and within Canada, which I have always hoped to do. I will continue working with DAI in all ways I can, they will always be an organization that I will promote and value. I have submitted my abstract for the 2022 ADI conference, and continue to work with Agewell and CCNA. Somehow somedays it doesn’t feel like enough and yet in my heart I know it is enough, in fact I know that no matter how much we do it is enough.

So as November unfolds, reminding myself that remembering the most important thing is to be happy, to find the joy, to live each day, to remember the biggest lesson Dementia has taught me and that is to live today as best I can, for today is a gift, today is meant to be lived, that I may have a terminal and progressive illness, but until its time for my life to end, and it will, I must live, be present, not to look to the end for the end will take care of itself, but I will miss out on the most important pieces if I don’t remember to live each day that I am here. To remember to focus on the things I can do and no matter how many times I have to adjust or change how I do things to focus on the things I can not on the things that may be coming, or the things I may not be able to do at some point. So Today I will be grateful that I managed another day, in good spirits, with a good day winding down, after a great start to the day.

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Advocates Advocating Christine Thelker © 2020 Dementia Event For This I Am Grateful Good Grief Living well with Dementia Silver Linings Stress

A Repurposed Life

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I have been working at repurposing things in my life, to use less, some of it out of necessity, some out of a want to simply life, start getting ready for a whole new chapter, reinventing my life on all levels. Some days it feels like there is a stranger living within me, somedays it feels like I am becoming at long last who I always strived to be. I am a complicated being and have become more complicated with the diagnosis of my vascular dementia. At times learning to maneuver all the challenges and changes it brought has and is difficult, some times frustrating, other days its so rewarding, some days feels like I have finally arrived, left me feeling grateful for the diagnosis, other days I hate it with every fibre of my being. But it has brought me to where I am know in this world of repurposing and refurbishing my life.

Repurposing has many different aspects to it, I have been taking clothes that I normally would wear only in certain seasons and finding ways to incorporate them into wearing anytime, this has allowed me to significantly cut down on how many items of clothing I need. It also lets me use them to the maximum of their life span. It has turned out to actually be fun, and yes I often look like that eccentric old lady going down the street, but that in itself can be fun, it makes people smile, and it seems that spreading a little cheer is something we all need to see more of.

I have also been using a skill which I had forgotten I even had that my mother and grandmother taught me in my young years, and that was to repurpose things in our house, whether a piece of furniture, or a pot or pan, finding ways to use things we have in different ways, how to not go buy things at the grocery store instead all of my cupboards and fridge and freezer have had an inventory done, I’ve been using what I have on hand to create a meal, and I must say I’ve somehow managed to come up with some pretty simple but good meals for myself. I am admittedly in part doing this out of necessity, rising costs are impacting my life, high rental costs, high costs for utilities, food. I was not expecting to be where I am today, but life took a complete turn with my diagnosis, but despite that, I am grateful in many ways that it took me to be here where I am today, my life is rich in many ways, just not in the ways that allow for a luxurious life, although luxury comes in many forms, and when I stop to think about it, my life is very luxurious. The reason I am doing this is because it feels good, it feels good to know the impact I am having on our mother earth is minimized by doing simple things and living simpler.

The other reason is all part and parcel of repurposing my life. I am analyzing everything, what I am doing, what is feasible to continue doing, changing how I am doing some things. this includes my advocacy work, giving up some pieces, refocusing some, in some things doing less, in others stepping up to do more, in some things letting them go altogether. This comes in learning to work through those moments where we somehow pile the quilt on ourselves ” that we should do more”, “that we should do better”, “that letting some things go will be letting others down”. So learning to be kind to ourselves so we can give more to the things we choose, and yes its ok for those things to change and be adjusted, it is in fact what helps keep us fresh, keeps us moving forward.

So we have to forgive ourselves for things we somehow make ourselves feel are not enough, because in fact they are enough. And yes many times people don’t like it when we change, when we do things that are different and not quite in line with how “we’ve always done them”, or what is the expected and accepted norm.

Today I had some incredible discussion and one of the things I was told, was it doesn’t matter if you are only helping one person with what you are doing or doing it on a global scale or community scale, one is no less important than the other, and that is actually healthy to change it up. It was great words of wisdom from one I admire a lot.

I am building a plan, not fully knowing if my health will allow for it to be realized, but I will continue to work on my plan through the winter months, and if God willing my health allows I will un-hatch the plan in spring. I have nothing to loose, if my health doesn’t allow, then at least I have kept exercising my brain throughout the winter working on the plan, and figure out what can and should be repurposed and brought into the next phase. If my health can maintain enough for the plan to hatched or not, it will and can never be for nothing, for I will have learnt about myself and many other things while building this new and repurposed life. I may have dementia, and things may be continuously changing and my abilities continue to change, but I will continue to challenge myself to use my abilities to have the best quality of life for myself as I can. I am grateful for those who are in the background helping me to obtain that, my circle is very small now, but those who have stuck around or showed up during this crazy journey have made a huge difference. Thankfully, the accept my worst days and brain fog, where having a conversations is challenging to my best days, they laugh with me and not at me, as one thing I have learnt is to laugh at myself, it feels much better than being angry about the situation or crying and being depressed about it. They are so good at not judging but instead embracing my lust to ride this journey out as fully as I can. Always watching and ready to jump in should I need help, but allowing me my independence, and my right to live at risk. For that I am eternally grateful.

I watch and look around at whats happening in our world and I feel so very deeply about whats happening, and I feel things so much more deeply, it impacts me more or maybe its just that I am more aware of its impact on me because I am more in touch with that part of myself, but I have also had to put a lot of that into a manageable piece as well, I can’t take it all on. It doesn’t mean that it doesn’t matter to me, but again repurposing my life so it can reflect the things that I can manage.

I am waiting to see the speech pathologist, and for some other tests from my internist2, my vocal abilities and swallowing abilities change sometimes many times in a day, but I am grateful that I have such great care, and that I have not lost my ability to write, which I am thinking more and more is such a gift that I received through my dementia diagnosis. And in closing I will leave with this thought, no matter if you have dementia or not, we all have the right and the ability to redefine who we are, repurpose our lives to be what we want it to be instead of what society tells us it should be. What about if we rethink dementia, what about we focus on the living piece not the dying.

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An Unepected Morning of things to be Grateful For

My new fridge is arriving this today, its been on back order, so this morning I had to be up early to have the other one ready to go, it started leaking some kind of free-on, or antifreeze or whatever is in them these days a while ago, my landlord ordered a new one, but because of all the delays in getting things we didn’t know when it would get here, but today is the day. I am grateful that my landlord is so good about ensuring things are in proper running order and getting things fixed. I then had to get to my physiotherapy appointment, got back home to see a call from a Interior Health line, I answered to find my doctor on the other end, an unexpected call, right away he said he doesn’t like my vocal sounds at all, we talked about how we are waiting for some stuff from my specialist, then talked about the ongoing lung issues, fatigue and swallowing problems. He said he was at the hospital today, he is at the Cancer Clinic at the hospital on Thursdays as he is not only my GP but he is an oncologist as well, and spends Thursdays there, but he said he decided he needed to check on me, thus the unexpected call. He decided he was going to talk to the specialist while he is in the hospital about my swallowing and vocal issues and after he hung up I then had a call from his office saying he wants to see me in is office Saturday morning, not the usual day or time for a doctor to see patients. All of this has me feeling so grateful, I now how many people don’t have doctors, I know how many people struggle to see their doctors and get appointments so, when people wonder why I am always so unwilling to leave here, it is because I have such a good team of doctors and starting over could cause me a lot more harm, and the real possibility of ending up without care is something I am not willing to do at this point.

I am concerned about whats happening to my vocal abilities, and whats going on with my swallowing,I’ve thought about what will happen if I wake up when day and my vocal abilities are just gone, how will being on my own look then? A person cannot help but to think about all these things, or at least I can’t, maybe thats because I have learnt to try to be ready to adapt to new ways of managing things since my diagnosis. Regardless, I am very grateful that my doctor is so willing to do so much on my behalf, its something I hope never to take for granted. So no matter what I do try to find the positive in things and today all the positives were shining through, from my landlord to my doctors. I don’t and won’t sit and feel bad for myself as there is still far too much to enjoy and appreciate each and every day. I hope each of you can find something to be grateful for today.

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Advocates Advocating Christine Thelker © 2020 Dementia Event For This I Am Grateful Good Grief Living well with Dementia Silver Linings Stress

Robots, Human Connection, Anger and Human Decency

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Last week was a tough week in many ways and on many levels, so tough i actually tried for three or four days to write and found I was unable to, even though everything was in my head I could not get it onto paper, it was like being frozen, so things kept replaying in my head, it effected my sleep. Very little upsets or bothers me to that degree anymore but this week was different. Things effect me differently than they used to, many things have no real impact but things that do and they are generally something that makes me feel some type of emotion.

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I went to the store to pick up a few grocery items, I was standing in line with my few items, an elderly couple ( likely late 80’s were ahead of me, another lady about my age behind me, we were all wearing masks, we were all being respectful, we chatted, suddenly a middle aged man came at as yelling at the elderly couple, running into me, almost knocking me over, which ended up almost causing a fall for the woman behind me, he kept yelling at these people that they shouldn’t be in that line, he did not apologize for running into me, one of the workers saw this and went to open another till, she asked me to come to her line as I next, but the belligerent man was still yelling, so i said very clearly, perhaps you should take this rude man, because apparently he feels he is more important than the rest of us, and moving him along so he can be out of the store will allow the rest of us to finish or shopping without putting up with anymore of his belligerence. The elderly lady was crying her husband upset, the cashier upset, everyone in the line ups upset. I talked to the lady, she was apologizing, I assured her they had done nothing wrong and it was ok. The cashier got the man out, I told the lady behind me to go ahead of me, they all thanked me for speaking up. By the time I went through the tills I was left wondering what was happening to mankind. I know people say its because of covid, I believe that to be an excuse for many people, they somehow use that to give themselves permission to be mean, unkind. It shows peoples true colours, because covid or not you know exactly what you are doing when you behave in those ways. I then came home to read that one of the council members had put forward a motion to get rid of the people parked in town with their Rv’s. People are living this way out of necessity, not for most by choice, these are not people who are snow birds, these are people who cannot afford to live and pay rent so are trying to live the only way they can without ending up homeless. But people don’t want to look at them parked along the street, so let’s make them move, well where are they too move to. So I wrote in to suggest that instead of pushing them further into despair, we might try to find a location, to allow them to park and be safe for the coming time, perhaps then the people with the resources could assist to help lift them up would have an easier time getting to know them their story and what could be done to help them. Again I was deeply disturbed by how willing people are to discard others, as long as they don’t have to see it, like the human at the very core of it has no value. It makes me feel we are walking a very fine line as humans.

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This leads me to the most disturbing part of the week and it haunts me. I turned on the news something I rarely do anymore, and there was the the story about how the use of robots in long term care is somehow a good thing. So here are some of my thoughts on this. And let me be clear there is many many great people working in Long Term Care, who given a healthy work environment, a healthy life/work balance could do an even more phenomenal job than what they already do under dire circumstances.

While I am a strong advocate that technology has many important roles in our daily lives, in this instance, I have grave concerns about the impact of these robots not only on the residents but the staff as well.

When I first started out as a Care Aide I chose to work with seniors because I enjoyed the bond created between the residents and myself.  The staffing levels and nature of the job meant I had time to create a connection not only with the residents but their families as well.  I was happy to go to work because I felt I was making a positive impact on the lives of our seniors. 

Slowly, over the years,  this nursing career that so many were proud to be in was undermined by the desire to save money at the expense of the very people we were charged to look after.   The team work that had created a homelike environment became a thing of the past as permanent and full time positions were deemed too costly.  Casual workers meant that connections with family members and consistent care for their loved ones was no longer happening.   This resulted in barriers to family bonding with staff and lack of confidence in the care being given.

Staff were also impacted.  As the job became more task oriented they were unable to fulfill the reason they got into this line of work – to care for their patients.  Let me be clear here. This is not because staff didn’t want to care, it is because they no longer had the time to care.

The direct result of all of this is the staffing shortages we see today. Nursing is not a profession that many people want to go into or have the desire to stay in. Today, staff and families often view Long Term Care as hostile, uncaring and toxic.  The impact of this is felt daily by the residents. 

This brings me to my concerns about advocating for the use of robots to facilitate contact between residents and their family. 

We all know that this pandemic has highlighted the already fragile state of senior’s care in this country.  This on top of staff shortages, task oriented job mandates and lack of consistent care means that residents are already not getting enough human contact.  Using the robot in this way will just take away more of what little human interaction residents now receive; interaction which is well documented to be vital to the well being of those residents.  

Using robots to fill the gap from staff shortages does more harm than good.  It exacerbates the long time issue of putting Care back into Long Term Care.

If this robot technology is used in the way it is proposed it will give the policy makers a license to ignore the severe staffing needs and not enhance human interactions with the residents.  It will further encourage isolation and disconnect between the resident, the staff and the families.  

Perhaps a better use of this technology would be to create a system where nursing staff can, by voice, use the robots to do their charting/ paperwork that they are burdened with, instead of doing it manually.  The precious time saved could be better spent creating and maintaining human bonds. 

Human interaction is VITAL to life.

Other than those things it is a new week, I was so shook up by all these events I could not even write. This week, I am taking time out from a lot of things to focus on self care, my vocal abilities are really challenging right now and along with that the added piece of difficulty swallowing. Admittedly it is somewhat frightening wondering if this is going to settle into one of the new platforms from which I will operate for a time before the next step down in this process hits. So I’m mid week in another week and am looking forward with hope.

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Advocates Advocating Christine Thelker © 2020 Dementia Event For This I Am Grateful Good Grief Living well with Dementia Silver Linings Stress

Thanksgiving in Canada

This weekend it is the Thanksgiving weekend here in Canada, I know in the USA they celebrate Thanksgiving in November, I am not sure about other countries. So Monday is actually Thanksgiving day and a statutory holiday for us, so people enjoy a long weekend, many have their last camping trip, others travel to enjoy time with family and friends. There was a time I too would have made the trip to spend with family, but now I spend it quietly with my dog. I find larger gathers to noisy, to hard to follow conversations, two or three people would be ok beyond that , its exhausting, mentally. Covid has also hindered the ability or want to put myself in harms way., restrictions, not knowing who is vaccinated and who is not means in order to protect myself I spend more time at home, and out walking and exploring with Pheobe.

I have much to be grateful for, many things to give thanks for, I try to live a grateful life each day, being present and aware of the many things and ways I have to give thanks for, thanksgiving is a good time for reflection and check in to remind ourselves of all that is good in our lives. Those who are in my life are indeed my greatest treasures, having the ability to meet and work with others around The globe to advocate for others, to try to help bring change about for many. To have a a safe place to call home, to have the companionship of my little dog. To still be maintaining my independence, to still have the ability to move about freely without aids.

I left this sitting for a couple days, today is Monday, the actual Thanksgiving day, today was a good day for me in comparison to yesterday, yesterday was challenging, fatigue, pain, brain fog, found me spending a lot of the day in bed. Allowing my body to rest as it needs to though definitely allows me to enjoy the good days more. Pheobe also had a better day today, and we did a lovely walk and drive, enjoyed seeing all the Kokanee ( thats a land locked salmon), in the creek that runs through town, in 16 years of living here i have never seen so many fish, a good sign, the benefits of the quieter world, less impact of man, we saw some turtles sunning themselves, and just enjoyed the sunshine, it was cold only 9 degrees Celsius, but i can actually function better in the cooler temperatures as does Pheobe so a really nice day for us today. Although that outing exhausted me, so my new normal is being happy if all i manage is one thing a day. I’m excited for my new rehabilitation program which will begin on Nov. 1st. my physio portion has already started, and I am thankful that I have such a great health care team. I am feeling grateful that I have managed to maintain staying independent and yes I have had to work hard, but because I’ve been willing to do my part my health care team has been willing to work hard on my behalf as well. Overall much to be grateful for this Thanksgiving. I hope where ever you were this weekend, celebrating Thanksgiving in Canada, living in a country that does not celebrate a thanksgiving day, I hope your weekend was pleasant. In closing is pictures of the lovely day today including of course my co pilot pheobe. You’ll see the fish and turtles

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Advocates Advocating Christine Thelker © 2020 Dementia Event For This I Am Grateful Good Grief Living well with Dementia Silver Linings Stress

No Longer Fitting in

I am feeling lost these days, feeling lost because I am finding myself more and more to be living in a world that I no longer fit in. At times I wonder is it that part of my dementia, or is it because it seems my view and understanding is so vastly different than anything else I am hearing or seeing these days. I keep trying to figure it out but I am now finding that i have to not think about it to much, it causes me stress, so best just leave it be, whatever the reason maybe what matters is that i am acutely aware that I am living in is becoming increasingly difficult for me to function. I truly don’t know where I belong at this point

I am always trying to find a place or space away from people, the chaos of society, the noise of society. The constant shrill of police, fire, ambulance, people yelling, vehicles, I sleep with two fans on but still often the noise wakens me. So between the noise and choas, and all the anger and hatred, I have become more and more isolating so that I can function.

Today I went farther afield because its getting harder to find that solitude close to home as it seems more and more people are wanting to be out in nature. pictures of todays outing below, one area I was in had such a serene and peaceful energy, I spent and could have spent much mote time there.


I am trying to manage through the winter at which time I will make some new plans for my next chapter, i need a place and space that will give me a small area to dig in the dirt, where i can plant and move things about, a small space but i need outdoor space, my place i am in i am grateful to have, but because I am living so isolated my space is very important for my well being. In some ways this place ticks a lot of boxes, in the downtown core, I have the ability to walk to the store, the doctors etc, but those things are becoming less import than finding a place that is quiet and peaceful.

This could likely be one of my last outings as winter and the cold temperatures arrive. i will be keeping an eye over the winter how not having nature to escape to impacts my well being. i will also be continue to looking at whether it is in fact my dementia or the environment around me making me feel like i don’t belong or more than not belonging just don’t fit in.

Today begins Canadas Long weekend to celebrate Thanksgiving. I hope where ever you are you have a lovely weekend and its also remember to spread love, joy and kindness. I am leaving you with the beautiful sun setting last night.

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Advocates Advocating Christine Thelker © 2020 Dementia Event For This I Am Grateful Good Grief Living well with Dementia Silver Linings Stress

Change the View, Sit in A Different Chair

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I am always somehow surprised and yet know that I shouldn’t be but again yesterday I was asked “Why did you leave DAI”? People leave and change jobs, change homes, change communities all the time yet some somehow they are and seem surprised by my decision to step down from the DAI board. Its been months since I stepped down (June2021), so although I have talked about it when asked and I though I wrote about it earlier, I am once again deciding to write about it. So for the record “I did not leave DAI”, I made the decision to step down from my position on the board, for personal reasons, mostly medical. I worked with Kate Swaffer for months mentoring and talking with new candidates we were eager to see join the board, and given my personal circumstances I decided it was a good time for me to step aside and give the incoming the chairs, yes I could have stayed for one more year, but I am and always have been a firm believer that sometimes the greatest and hardest thing to do is knowing when its time to step aside. It has been and always will be a great honour to have served on the board and work along some incredible people. But to the disappointment of some who always like to think there must be a falling out, or infighting or some such thing, I am a total disappointment to them, again I will say I did not leave DAI, I gave up my seat, I know sit in a different chair. I have explained it this way on numerous occasions, I just changed chairs. If you liken the board room to chairs around the table those chairs are filled with board members, around the outer part of the room are chairs, this is where members and others working with and for DAI sit, I moved to the outer chairs. I did not abandon DAI, I made room for others to take their place at the table, I still work actively now from the chair I now sit in. Sometimes decisions are hard, sometimes even though you would have liked to stay till the bitter end of your term, you have to look at what you are contributing and if it is the best interest of the organization and yourself. For many months I was not able to contribute, this created extra stress for me, feeling like I was’t fulfilling my role the way I should. My decision was done based on what was best for all. I believe we all need to be kinder to ourselves give ourselves permission to do the things we much do for our wellbeing, society has created a beast in the sense that we are left to feel bad, to feel somehow that we have not done our best or our part if we change the chair, yet sometimes the view from the other chair brings a whole new prospective. I have had time to work on my health conditions, which as we all know are ever changing with dementia, but I am once again contributing to DAI and other organizations in a way that allows me to continue to contribute in meaningful ways, and maintain my well being. It is not anyone else that pushes us to push ourselves, it is hard to let go of the pressure we put on ourselves. It’s a lesson I am continually learning and growing in. I am always happy to talk about DAI and the other groups and organizations I work with, always happy to mentor and share, so I hope by sharing today, those of you who have wanted to ask but didn’t think they could, I hope this helps you understand, that decisions like the one I made are no different than any life decision you may have to make a times in life. For those who asked, thank you, for your courage to want to know directly instead of speculating, I applaud and appreciate you. If you are or know someone living with Dementia please have them join us here at http://www.joindai.org .

Know to end this mornings blog off I decided to share some of my morning with you, laundry on the go, and its shower time for some of my family of houseplants. I love my houseplants and am getting quite a collection, I really miss my outdoor space and being able to dig in the dirt and create peaceful areas full of plants, shrubs and colour bursting everywhere. But my houseplants create a lovely indoor area that is peaceful and they do keep our air clean, they are all thriving, I sing to them, with my voice that is barley a whisper these days, that cracks and growls, but I put my music on every morning and sing and dance around the dancing is a good form of exercise and I think they actually enjoy it, and it sure helps get my day started on a good note. HAHA! I hope you enjoy meeting these members of my family.

Fred the Fig
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Advocates Advocating Christine Thelker © 2020 Dementia Event For This I Am Grateful Good Grief Living well with Dementia Silver Linings

Striving for a Good Week

I didn’t sleep well last night, in fact I’ve barely slept at all, strange night, waking nightmares, hard to explain, you are awake yet the nightmares are happening, you can’t stop them, you are just stuck in them, night terrors that happen when you are awake are not fun, night terrors when you are asleep are hard enough to deal with but when you are awake and they happen and you can’t get your brain to stop or shut off its horrible and you just want the night to end, you try to bargain with your brain all to no avail, it is somewhere where you can’t reach it. Sounds crazy right? This is dementia, this is what you don’t see, being trapped with this brain that you have no control over. We grow up being taught to control our emotion, control our thoughts, our actions, but somehow at times, randomly and most often for me at night, I lose my ability to do any of those things, my brain has taken full control of what is happening and its like being on the outside watching and not being able to turn away. Maybe thats what some people liken to hallucinations I am not sure. What ever you call it whatever it is, it means that today will have to be low key because although I feel alert and ok at the moment. I know at any moment the fatigue will set in, the brain fog will take over, good sleep is vital to good days here in Dementia Land. I hope it allows me to get through my specialist appointment without too much fumbling. Not the start to the week I was hoping for but I will surely make the best of the week just the same.

So often I think about how I would like to have a partner through this journey, my husband was spared this, he was always so good being by my side when I was sick, many times he would get a message via radio calls when he was in the bush, that I had been rushed to the clinic via ambulance, ( we did not have a hospital where I lived) he somehow could get out of the bush and be there in an instant, one time I was sent to Jasper hospital where they ascertained I had a stroke and they needed to send me to the hospital in Edmonton, he somehow got to Jasper ( an hour from our home) as they loaded me into the ambulance, he had a very calming effect on me always, he could calm my fears with the touch of his hand, and the sound of his voice. The rough though logger (faller) by profession, had such a gentleness about him when it came to me. I believe my dementia had started way back then, but of course I was not diagnosed until 10 years after he had passed away. We were too young to have our lives interrupted, but we don’t always get a say, none the less, as often as I feel like I would like to have a companion to share life with, I also much of the time feel like I am grateful that I have spared anyone being with me to watch me as I fade away, although at times I feel more vibrant than I ever did, just in different ways, because life is so very different now. I am comfortable being me.

I think about all the people who have come and gone in my life, some have passed away, others have just drifted into different things, but regardless of if they are in my life today or not I am thankful for each one of them, and I always say if you can’t stay its ok, some people come and go and thats ok too. I have learnt much from each person, each friendship has taught me much, helped me grow. My life is so different now since my diagnosis that I understand that many of the people in my life prior to or even for a time after diagnosis can no longer stay in a relationship, their lives are different than mine now, and I understand, I always hope that they will be happy in life, and when I think of them I don’t think of them in the context of what is no longer there but rather in the context of being grateful for the time they were there. Life is ever changing.

Yesterday I wrote about many crisis we face here and I believe in many other countries. I think about how and when we broke down as a society, I believe although woman’s rights were so needed that perhaps the pendulum swung to far and that perhaps if we had recognized and paid women fairly for the enormous role they played in society, and allowed them and actually men as well the opportunity to be home, to raise the families, to help in the schools, running lunch programs etc. after school programs, our society would have faired much better, they should have been paid a fair wage, our population is decreasing because the family unit cannot afford more children than the 2 which is the standard today, we have a food shortage which need not be, someone used to be home to do all those important jobs. Doesn’t have to be the woman, but not having it has done a great disservice to us all. Not everyone wants to be or should have to be home, but if paid fairly for the role they play by being there I believe many more would. Childcare would then not be the factor it is today, children are being raised by everyone other than the parents, they spend more time from very young ages in the care of others, at one time you were home until 5 at which time you went to kindergarten, you learnt a lot in those first 5 years of life, and it was also the corner stone of how you build your connection to your family unit, many life skills and lessons came at that time. The developmental period was so important. I understand that no everyone agrees with me, I don’t expect them too, and no I don’t think we have to roll the clock back, but we can take some of those very important elements and put them into use to take us forward in a better manner. So often money, power, drive things, and both of those things if not used in the right way do a lot of harm, and just because one has money or power does not ensure that they will do the right thing or that they are good and decent people. Often they are driven by greed, yet if used properly and for the good of all, money and power can bring about more without the need for greed to drive decisions that help very few instead of the many. Nothing changes if nothing changes.

I hope you all strive for a great week filled with peacefulness, joy and happiness.

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Empathy Have We Lost It


When I came across the above the other day I just stopped, read it and reread it. It rang so true for me, it spoke exactly to many conversations of late about the lack of social responsibility by so many.
Later that same day an article was sent to me. The article is posted here. The article speaks to empathy and more directly the need for, it in the leadership of organizations and companies. I read it reflected back to times in my working life where empathy was either present or totally lacking. I thought about it and how it also applies to our everyday life. We have had many conversations lately about how much anger there seems to be, and anger that is being mis directed much of the time. If we are angry about the way something is being handled or managed then we need to ask ourselves some hard questions, and a lot of anger is over the pandemic, well this pandemic just like pandemics of the past was not brought about on purpose, conspiracy people will argue with that, the bigger question is why do we feel its someone else’s problem to solve that we should not have our lives inconvenienced, that our individual rights supersede the rights of the greater community. we are willing to disturb our health care systems, and many other things all in a bid to be right, I struggle to understand how we have walked away from having empathy for others, for caring about our communities and those in it. And its not just over the pandemic, Canada in my opinion is in Crisis, we have a crisis in our health care system, our long term care system, an opiate crisis, a homeless crisis, a housing crisis, our seniors are in crisis, pensions that they paid their whole life into leaves them deciding between rent and food and medicine, its shameful. We turn a blind eye, we get angry and frustrated, but we continue to take part in the commercialism that has made us and our country so sick. I was forced away from that when i was diagnosed with dementia, disability does not pay enough to do much more than barely survive, and each year it becomes harder. Somehow those of living with dementia see it all differently somehow, at our meetings there is no judgements, only support and understanding, we don’t always agree on all things but we are always respectful, there is a great deal of empathy, no one wants sympathy, most of us actually feel that we are living pretty joyful and happy lives despite our illness. We really show up for each other, we care about each others well being, we don’t see or hear the “me” or the i don’t care as long as it doesn’t impact me, we care about how things are impacting each and every one of us. Maybe having the support systems
in place have given us a gift that is missing for so many, that connection, that sense of belonging to something bigger than us. A real sense of community. I’m grateful that I have had that, the last 18 months would have been unbearable without it.

I am not feeling to proud as a Canadian right know when I see all the crisis staring at us, it saddens me that we just want people moved and pushed anywhere as long as its not our neighbourhood, its a poor way to treat others, I watched numerous people walk by someone on the curb right out my door, checking on him, he was indeed alive, no one seemed to care, the paramedics and police came and tended to him, he is still a human, he is still someones son, brother. The other night we had a robbery on the property where i live, its not the homeless, its not the drug addict, it was someone who goes home to their lovely home, they were driving their fancy Audi, followed by a very expensive truck, but we judge people by what they look like and have instead of who they are. Often we are blaming the wrong people for the things we don’t like.
We have a lot of things that need fixing, and its easy to come overwhelmed by it, but if we look at how we can each make a difference, each little bit becomes a lot over time, if we all wait for some one else to fix it all, things will become worse not better. I hope we find a way to let go of the anger, the resentments and work towards finding our empathy, and how to focus on what it really means to walk this earth.

https://www.linkedin.com/posts/christine-thelker-author-a6183289_empathy-is-the-most-important-leadership-activity-6848426890567520256-8KHm

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Dementia Awareness Month

Photo by Mikhail Nilov on Pexels.com

Its almost the end of Dementia Awareness Month, it has been and still in many areas still referred to as Alzheimer Awareness, but those living with dementia ( Alzheimer’s is just one type of dementia, have been working hard to have it changed and known as dementia awareness month. Its been a long time coming but we are finally starting to see progress, and we welcome the change. Alzheimer’s has been the most publicized type of dementia but it has given a rather negative and false few of what dementia is, much of the public has very little knowledge of the other types of dementia. This has not served those with dementia and I welcome all the hard work by all those who have spent years advocating which is finally bringing more awareness and the welcomed shift from Alzheimers awareness to Dementia Awareness.

I tweeted yesterday that I was dumbfounded that we are still having to hear statements like ” you don’t look like you have dementia”, made. There is no there illness that people have at least to my knowledge that have this type of statement made to or about, to me statements like that show a complete lack of respect for the person, and all people living with dementia, it also shows the complete lack of knowledge and highlights how much work those of us advocating still have to do.

It is not all negative though, there is so much incredible work being done, more collaboration and inclusion of people with dementia at all levels in all areas. Those advocating often feel like they are not being heard, and that changes are not happening soon enough, understandable when living with a progressive and terminal illness, never knowing how much time you have to try to see and work on getting the changes to happen, But the voices of all those are being heard, every small change, every small step bring us one step closer to have real and lasting change for those living with dementia. Things like dementia friendly communities, ( although i believe inclusive communities for all is better, the term dementia friendly to me create more segregation which is something that we are still fighting to have stopped, it is also why we work hard to educate about the importance of language.
There is many amazing people living with dementia and contributing so much to advocate on so many levels, so as the Dementia Awareness months comes to a close I want to say thank you to all of them, for all the ways they contribute, for their endless giving of themselves for the betterment of all, thank you to all those who lead the way for those of us currently advocating, and a heartfelt thank you to all those I have had the pleasure to work with, to form friendships with, you all deserve to be acknowledged, so Thank you for all you do, it is an honour to know so many incredible people.