My soul is tired, my heart is tired, physically I am getting stronger every day, it has been an exhausting 11 months, trying to regain so much that was lost during my illness unrelated to my dementia that struck in March. So although I am regaining physical strength, it is my heart and soul that are feeling a real deep sense of tiredness.
I feel bad because if I feel this tiredness in my heart and soul I can only imagine what my mentors and those before me must be feeling. Although we are very good at lifting each other up and encouraging each other to not quit to not give up, at times our souls, our hearts become so tired it’s hard to keep fighting, and fighting for things that should not even be relevant today but, yet years and years of advocating have done very little to change things.
Point of tiredness, an example if you will, back in December, maybe November, forgive my recall of dates, times, etc are not very good anymore, but I was attending a meeting, of an organization I was happy to take part in and be part of, I thought we could see some great things within our community. I still believe that to be true. But at that particular meeting someone from the Alzheimer Society here in BC did something, likely with no thought beforehand, that has left me and my soul tired. It affected me to the point that I have sat down to address it multiple times and couldn’t, I also couldn’t attend the meeting yesterday although I tried, I couldn’t bring myself to, this makes my heart tired. I often can’t talk about those things at the time, and my word-finding is more difficult, so I write about how things make me feel. So what may seem like nothing to most was huge and is one of the things those of us who advocate trying to make others understand and change.
So at this moment, I was asked in a chatbox, if I felt that nutrition and exercise played a role in dementia. I stated that I did and that there is much in regards to that knowledge. The person from the Alzheimer’s Society jumped in stating there was no scientific evidence to that end, totally discounting what I had said, making me feel humiliated and shut down. Then I sitting feeling angry but knowing it is never a good idea to respond when feeling anger. It was and is upsetting that over and over again we have to fight people who think they have all the knowledge when truth be told, they are merely paid employees of an organization and only know what that organization holds to be their truth unless they are willing to look outside the box from which they are fed. I could have responded and asked if she has ever bothered to actually do any research on it if she had ever bothered to go the World Health Organizations site and read what is there about this very topic if she has gone to any of the medical journals that are showing more and more the role the nutritional and exercise component plays in helping people maintain and live well with their dementia. This is not her area of work within the Alzheimer’s Society so not sure what she was basing such a statement on. But to discount someone else’s view, and leave someone feeling humiliated is totally inappropriate. It is why I always say at these types of meetings words matter. Had she asked me to elaborate on why I felt that to be true, it would have changed how I was left to feel. But this type of thing happens far to often.
The second thing I have run across recently, which in many was fabulous was attending a film festival hosted by Dementia Advocacy Canada, there were four short films, all of which were great and evoked a lot of different emotions. there was discussion after about the four films and I felt it was a great discussion, unfortunately, there was not enough time for some deeper discussion no fault of anyone’s time is precious and I hope at some point maybe we can have a further discussion around some points that were really glaring to me. It’s something that we see over and over again, and I am not sure if I believe any longer that in my lifetime, we will see this change because it has been advocated for so long and yet it continues.
The films and the filmmakers did a terrific job in what they did, I don’t want to take away from that and the organizers of this event did a fabulous job putting it together and bringing it to light for all of us. However again we see or I saw maybe no one else did, maybe because I am tired and my heart and soul are tired I saw it, maybe because it is an area I advocate very hard to change I recognize it. There it was four beautifully done films, but again all done around the more aged, those in a later stage of dementia, feeding right into the stereotyping that we fight so hard to change. The underlying stories were great the points they highlighted terrifically, but it also keeps the stereotype and the stigma about what dementia looks like going.
Again I am grateful for those who made the films, to those who put the film festival together, but it sure highlights why we are tired.
Those of us living with Dementia are trying to be heard, trying to help those who want to help us, who say they want to learn from us, and many do and are, and for all those I am grateful.
But still, I am tired, we have had many discussions lately ( those of us living with dementia), about how so many, even many who are close to us, don’t believe we can learn new things that we can and do have the ability to retrain our brain in how to do things we once did but lost the ability to, and if we do and can then it must be because we don’t really have dementia. Yet for all of us, we are as my friend Janet says “our own lab rats”, we are the ones trying and proving not only to ourselves and each other that we can and do adapt and learn new ways to do old ingrained habits, from simple how we put our socks on or tie our shoes to the more complex how we manage to shop, and cook, etc. Somehow despite all the adverse ways knowingly or unknowingly that people affect us we keep fighting for change, for understanding for a better way forward.
Even for me, because in conversations I have such trouble putting y thoughts and words together, I write, its a gift my dementia has given me, it has helped me find a skill I did not have before so that I could still express myself that otherwise I no longer can. It is the gift that I will be ever grateful for, even though I don’t know when or if it will be taken from me either.
It’s all exhausting, and I’m grateful to all those who advocate as well, they are the ones that keep me going.