So much effort

So my last blog which I titled Maybe somehow only ended up with half the blog posting, can’t find the rest, even though I have it set to auto save, it has vanished, then it says my page isn’t there but it is, my Twitter account was hacked, all my devices having technical challenges, perhaps from being hacked not sure.
The world of technology can be so good until it’s not, I wonder if they will have find a way to simplify it for those of us who truly can benefit from it if it is all more user friendly.. The frustration sometimes makes me want to stop using it at all, but it is how I communicate, it’s how I visit, stay connected,. It allows me to take part in meetings, be involved with groups and organizations and gives me purpose.
My volunteer Angie is coming today, she may be able to help fix a lot of these issues with my devices. She has been such a huge help to me.
live been thinking a lot about my friends that live with dementia, and a tougher group you will not find. A happier group you will not find. The effort it takes every day to just manage the simple things takes more effort that most others can imagine, but then they do so many other things, they are learning new skills, they are advocating, speaking, involved in research projects that is at so many levels and different types, they write, sing, the are incredible artists. Mostly they are joyful. Despite all the frustrations, despite all the health challenges, they are joyful. They reach out and check in with one another.
we had a zoom with our friends in Japan the other night, and despite the language barriers ( and actually it truly isn’t a barrier), we do have an interpreter who comes, but we also can get much by the body language and facial expressions. We laughed, I was so excited to see them, we were supposed to see each other in Singapore last March, but of course Covid 19 thwarted that. So to have our zoom was so good for all of us.
What really stood out was how the things people living with Dementia, live with, deal with like the stigma, like the lack of resources, like lack of programs, the lack of proper resources from diagnosis and beyond.
we don’t get the benefits of palliative care, and palliative care is not just the last week or two of life, palliative care can and should encompass from diagnosis on, for with palliative care on board it can truly help you live a full life that is life of quality. But so many resources are passed by for those living with dementia, Occupational and Speech and physiotherapist, social workers, programs that a truly designed to engage, connect, and leave those living with dementia to feel valued and purposeful.
We also see to often people thrust into drug trials without proper follow up to ensure when things abruptly end or you have to be taken out that you are not left feeling devastated, and lost and without purpose, I believe we should be looking at all the ways to enable those with dementia to live their best life to stay in their homes for as long as possible, rather than tie them to the false hope (my view), of the cure, I think care until cure should be the focus, Dementia no matter what type, Alzheimer’s, FTD, Lewy Body, Mixed, Vascular, the types is long means that realistically finding a cure is almost impossible, that doesn’t mean they won’t find ways to help manage the effects of many types of dementia. It does mean that we should while trying to find those things place a much bigger emphasis on having the resources to help people manage their illness. People with Diabetes or MS, to name a couple, are taught how to manage their illness, we deserve to be given those same resources.
I have heard so often from so many since my diagnosis that they felt alone, that they didn’t think there was anything they could do, no one teaches them about the nutritional and exercise components, people are all to often left adrift. I believe that is why depression is so prominent in people with dementia, the complete lack of resources, the complete misunderstanding of the illness by the largest part of society. The lack of current education with health care professionals.
it makes me sad that after so many advocates fighting so hard for over thirty years so little has changed. Is it because many of the large Organizations have become “ big business”, on the backs of those living with the illness, that rather than help us actually see the changes happen, they do just enough to keep people opening their wallets to them, believing they truly are helping us, when in fact we see such a minimal amount of help, more often it is us helping them, we become their “ Poster People”, it makes people feel good about themselves, which that in and of itself is not a bad thing, but what is bad is that they are not paid, ( unlike all those working in those organizations”, who are paid to attend meetings, to attend conferences, to write articles, to deliver them. People with dementia are continually doing it for free, in part because they want to feel valued, they want to see change. But I often feel change is not coming because there is big money, it is big business for it to stay as it is.
We are ( those of us living with dementia) very aware of our end stage of this journey, but we sure want and fight hard everyday, to live the best lives we can until then. All those I have met globally are happy, bright and engaging, they share laughter and joy. Those are all the very things that are in complete opposition of what the world perceives. They are some of the most amazing people I have ever had the pleasure to meet, I stand in awe of them and all that they do.