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


Today I am highlighting this topic and worthwhile listen, a big thank you to Celia Foster for sharing this. Oddly enough yesterday the conversation around isolation came to the forefront and admittedly I have been and am far too isolated and had to admit and give much thought to that yesterday and last night.

It’s difficult to find an answer, especially if you also have to manage changing health conditions. About six months ago we received a letter from the government that we are no longer allowed to work or volunteer for more than 15 hours and or four consecutive months without losing our disability income, which is barely enough to live on at best. I don’t believe those in places making ridiculous policies has given any foresight into the fact that allowing someone with a disability to work as much and to what degree as they are able, not only allows them to afford to live a healthier life style, by providing extra income for better food and staples, it also saves money on the whole system, less mental health issues, less overall health challenges keeping people active and socialized is proven to have many benefits, those benefits far outweigh any negatives anyone has yet to be able to highlight for me. Many people with various disabilities have so much value they are able to contribute to their communities and to help themselves, again the more they can help themselves the less they have to rely on and take from the system. At a time when there is a shortage of workers, helping business and companies employ seniors and people with disabilities is a great way to lessen the burden on our over stressed housing and health care systems. Penalizing them, not allowing them to earn income or volunteer without fear makes sense. Yet it seems as though the people in positions of creating policies have to check in common sense and understanding at the door before they start their positions. Surely somewhere in amongst all these highly educated people someone most have enough common sense to see that they are creating these crisis with all the ridiculous policies. Most that I know want to be productive and busy to whatever degree they can to ensure their well being. It’s like living imprisoned without the walls.

Photo by Andrea Piacquadio on

I am glad to see the recognition of the need for people to be socializing but then we need the policy makers to not hinder us from doing the things that are of benefit not only to ourselves but to our communities.

I am and will continue to try to figure out how to decrease the amount of time I spend isolated, there isn’t easy answers it seems. I will continue to advocate to make changes within our very broken system, I will use my voice until I no longer have one, or until they find a way to silence that as well.

There is little to no resources for me, in addition to the fact that I must do things at times of day that are best for me and not only cognitively but know also physically. Too much stimulation with my dementia is not good, balancing the noise of the world with trying to be engaged a juggling act, limiting the number of hours and size of events as well.

Life I have decided is exhausting.

By WWW.Chrissy's

I am an advocate for people with dementia in Canada and globally, having been diagnosed with younger onset dementia myself a few years ago.

One reply on “Isolation”

Christine, I can’t agree with you more, immobile most days, only able to going for groceries, health appt and drugstore, my life is confined to my apt. Being part of a Public Health Agency of Canada project with a four year budget of $800,000 and being a co-lead in the project, I wonder if Service Canada would like to write a letter to the Public Health Agency of Canada that I can no longer participate in the project. Does it matter that my health determines the hours I am awake, and much of what I do is at 2:00 am to 5:00 am in the morning, or that our brains are such that we have to send regrets to mtgs last minute because we cognitively cannot function. To Service Canada your “threat” of taking away our living hood through volunteering is ludicrous, our volunteering is a necessity of life for us, and to take that away is against our Human Rights. With all we do, the research for Universities across Canada, for advocating for those with dementia who don’t have a voice as yet. Isolation is fine with me, but not others, my isolation and mental health though is due to the social interaction I have with others, those who have had to terminate work, had reduced income, living to month to month, exhausting our savings, not having all medications (over the counter) and medical supplies covered (eg. my diapers cost $300/month.) So many of us are dying, can we not die knowing that we are fighting for the benefit of others so they do not have to undergo the intensity of some of the challenges we have faced is all in vane. If I let you, I could let you get me to feeling useless, without purpose like a did before I began my volunteering. In your letter you state there are exceptions to the rules and we need to self report our volunteer hours. Having already removed myself from two international organisations: Ed-Sig in Singapore( Environmental Design project for people living with dementia) and DAI in Australia (Dementia Alliance International), please don’t take away the support groups I host or co-host and the research and local and national projects I am on. With my designation being CPP disability with all the medical reports and tests I have undergone over the last four years, does that not tell you I am “unfit” to hold a paying position, part or full time . What happens to the Crossing guards, volunteers in hospitals, volunteers with organizations like the Cancer Society, or Red Cross, etc… I use a walker and can walk no more than a 100 yards without having to sit. on a good day. Again, I know there are exceptions to the rule as you state, but sending a three page legal page document puts fear into them. I worked 10 years for the City of Hamilton, they tried everything to get another position, even to the point saying I would wash the wheels on all the City trucks but they just laughed and said it would be against another union. I wanted to work to 70. My health is deteriorating and I am now a member of MAID. I have spoken to two of my specialists about this already, but not my family physician. That will be hard because we close and he has supported me with so many health issues. To me you are playing with too many lives who are already anxious enough about how they live, without the possibility of their lives changing for the worse. For your information I have not set my MAID date, I have to check with all the garbelygoop about insurance which nobody is giving me a straight answer (Manulife Insurance), but I am hoping my date will be May 2, 2022 after my 65 birthday. Until then I am going to continue to be positive, live my life to best I can with the circumstances I am in. I even had a mask printed that says: “Attitude of Gratitude Behind Mask, Not Easy”, My prayers are that anyone you know is not faced with an adversity that ends their life as they knew it. I am only 20% of the person I used to be, but I guess my brain is saving the best to go. Christine, sorry for the rant. Love you much! Debbie


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