This morning I woke thinking more about something that has been on my mind a lot lately. It is something that I have had some great conversations about in the last little while and perhaps its on the minds of many others. Okay, I’ll be honest there has been many things floating around this brain of mine, and mostly likely not things that the so called “normal folks think about or give much thought to”, but here in Dementia land our minds/brains work and function in a different fashion.
One of the things that have been really at the forefront of this brains thinking is about how we advocate. We keep talking about how little has changed in 30 years of advocating, yes there has been some changes, but in many areas not much has changed. So is it time we change? Do we need to rethink how we advocate? Do we need to change the focus? Do we need to change the message? We keep saying we want to end the stigma, yet the stigma persists, so perhaps we should talk more about what works for us, what we do to enable us to continue to have the best life possible, lets leave stigma out of it, if we don’t talk about it, perhaps it will change on its own. Are we keeping it alive unknowingly by continuing to bring it to the forefront? Should we change our focus, if we keep saying we want to be invited and included then maybe we need to invite and include. Let’s teach others how to help us, how to work with us, let’s not wait for them to invite us let’s invite them. Let’s showcase how valuable we are. I know first hand that by sitting and being willing to get out of my comfort zone and work with researchers, they have embraced working along side me. We are together making things happen, nothing good happens quickly it seems, but I feel like we are making more improvements, getting more people involved and more voices heard through this avenue than anything else, thus far. I don’t feel used, I feel valued, unlike some of the various organizations that like to have people with the lived experience has poster people to help generate funds to help the organizations. I wonder does this also help keep the fear of Dementia alive? That truly depends on how it is done, and perhaps we should ask them to “our table” and help them better help us. Being angry that nothing is or has changed much does little for any of us.
Also sitting at the forefront of my brain is this idea of “finding a cure”. I am including my dear friend Kate Swaffer’s Blog on this topic at the bottom of this blog. I am sure you will enjoy, so please take a read. We have discussed this topic at great length. For me personally, I think “finding a cure”, creates a false sense of hope for people each time a new article comes out about some drug, and I truly wish they would just stop this type of talk. Work on it if you must, but I don’t want to read and hear about anything until it has been proven, not things surrounded in controversy. I want to hear more about nutrition, exercise, life style adaptations, more about rehabilitations, more about modifications to our daily lives. These are things that can and do for many of us have a lasting impact on our overall quality of life. And speaking of quality of life, let’s look at what that actually means for people and find new and better ways to help them maintain that quality of life for longer. For some it may mean having access to music and singing, for others it may mean having access to various types if art, or cooking, or gardening and out door space and nature and animals. Lets more more emphasis on Quality of life, most of us living with dementia are or become realist, we understand that a cure is not coming in our life span, but we can and do hope for more help in maintaining a lifestyle that provides us with quality of life. I am not personally interested in prolonging my life, I will be happy with the life span I have been granted, but I sure would love to have more help to ensure that whatever the span is.
My dementia has provided me a freedom from the stress and strains of living under and worrying about all the things society has created for us to live with and under. Next week, next year, are of little concern, it’s much easier to let them unfold. I live happier for the most part than ever before because I just enjoy being here. I spend 95% of my time alone, at its ok, because I’m ok and I like me.
I have noticed a lot of people being very angry, angry because of covid, Is that really it though, I think it goes much deeper, but covid has allowed people to feel like they somehow are more entitled to express their anger, but when covid is over if they haven’t looked at the real cause of the anger, what will they then blame it on. I’m not angry, maybe at times a little sad that I don’t get to see people I’d like to see, but not angry, maybe my dementia has given me the freedom of being that allows me to understand that I cannot control a virus, that just like having to learn to walk hand and hand with my dementia, this is something I just have to walk along with as best I can the only difference is eventually the virus will end, my dementia will be with me until my last breath.
There you have it my Sunday rambling of thoughts. Please take a minute and read Kate Swaffer’s blog link below.
Chrissy's Journey 
One reply on “Embracing the Freedom”
Bravo! Having been in the advocate field for only two years, 3 years post diagnosis, I have embraced all the info available out there and like my friend Christine which we have discussed, there has been so much discussion over 20 years as to why things have taken so slow to see progress. There have been strides but boy have they taken a toll on some who have been the advocates of the past. There is a lot of stigma or I refer to as misconceptions about what a person can do and how they live with dementia at the various progression of the disability. Like stigmas for centuries (eg. women being able to vote, life style differences (eg. remaining single), gender choices (eg. 2SGLTQ+), etc…. there have been strides in acceptance but it takes decades. Hooray for Christine! We need to rethink how we approach what needs to be done, yes, continue with the research, be the voice in government policy, but maybe there should be more emphasis on meeting the needs of those here and now which can be done. I live in Canada like Christine. We have housing options for those with various needs. There is housing like the March of Dimes for individuals with disabilities, we have Rygiel Supports for Community Living (homes are purchased or donated where two to six people live with 24 hour live in support, who have cognitive and physical disabilities, we have ATCO (Homes for Heros for homeless veterans) as well as a number of villages and apt complexes for them), Brain Injury Services of Hamilton having a transition home where life skills are relearned if able and then they have supportive independent living programs. This is just a beginning though because the needs are so great. Listening to Christine, reading her blogs, her book, she is a pioneer to me in showing people living with dementia what it is like. Housing other than institutionalism has always been a priority for me . With this is mind, we need to learn first what our own needs are. I really appreciate Christine thinking for herself, discerning what is relevant to her and others, making what she is going through relevant to others. So Christine, I believe in taking care of the “practical needs” of those with dementia in conjunction with the exploration of the future needs towards changes. My feelings are that it starts with a seed in a community and have the community develop it’s own needs. Once done, share that info with other communities, support each other and learn how to thrive. Christine, I’d like to send you some feathers for your wings. What colour would you like … white, pink, purple, one of each colour.? Love Debbie.
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