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.