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I Have Alzheimer’s or Another Dementia
A News Story about Michael, Myriam, and Sandy
Just found this post and love it.
I am hoping to give another talk (rant) about ALZ and how we might better fund individuals in need NOW in addition to funding research and so on.
The cash help to a family or person seems money better spent to me. Americans want to cure aging...but the title of a book I just finished, "We all know how this ends" written by a man with ALS about our denial of death and the shock of a terminal illness plus the book on the Myth of Alzheimer's has my wheels turning into a person oriented fund ... help those living with this in addition to a hope in the future of some treatment.
We are all ambassadors. We are the treatment.
I understand the logic of hoping for a cure.
What is missing some times is that we are the treatment. The ability to help one another, to break through the Language Barrier of dementia, and to question authority in regards to the process of living with dementia.
It is not the most horrific illness or way to die. What is horrific is that people who lack the ability to perceive the continuation of our very humanity when we can not quickly recall and speak a name, or convey our wishes in words, that we are alive and conscious and in need of an environment that enables us to live with dignity and contentment. These conditions were once common place, before the illness gained traction, and it still happens all the time but the problem situations get all the attention.
Having dementia is very hard work for me. I am constantly relearning things, analyzing water faucets and underpants, navigating floors and rooms, trying to communicate with family members who distance themselves but still feel guilty, to accommodate my caregiver's moods and energy levels.
who is asking us, the people living with dementia, what we need now? no one, because by its nature we do not have the time for the learning curve to advocate for ourselves. By the time some of us can figure it out, our ability to make use of that information dwindles, our ambition exceeds our capacity to accomplish.
Our words are used against us. We are held to a standard appropriate only to those without dementia. It is still helpful to teach the blind to move about in the world instead of waiting for a cure for blindness.
Nothing to be taken away from research or organizations, but I want to add help to those of us alive now. It is an inhospitable environment for us to a great extent. Illegal to sleep in your car or sit on a sidewalk. One paycheck from losing your home. This is common in USA and tolerated. No one hopes to cure poverty, but it does not stop some of us from helping those struggling in those conditions.
In regards to the way dementia has become "the most feared disease in America" and how that creates a negative tone towards people with dementia - people died off at 30 for so many years, then 50 was old age for centuries. Only in past 150 years have so many people lived past 65! So dementia becomes a problem of longevity at a time when youth is worshiped, aging in general is feared, and our comfortable lives makes death an enemy, unnatural. The exploding population of people over 65 means dementia is more common. I am not sure what to make of EOAD as a separate condition.
my grandparents generation - and as far as I know all previous generations to them - accepted dementia, my grand mother was cared for at home, her adult children worked to support her life in different ways. I remember my mom telling me about going to visit her one time and how she swore like a sailor at my Dad , called him names. My grandmother was so proper, ultra proper so my Mom was horrified.
My Mom told me that my Dad replied to this tirade with a gentleness, head bowed, and said quietly, "You are tired. We will come back in a little while when you feel better." and they did go back and she was content again.
I guess growing up with people caring this way has influenced me, being kind is not so hard. then I got to help care for my Dad. Now I focus on how I would like to be treated ,to not be part of a freak show or a burden, just please fill in the blanks as I have more blanks, rub my feet and keep me in dogs.
A counselor I saw after I was diagnosed told me it was good to have high expectations, just not impossibly high expectations. That helped me adjust my expectations towards my husband and others. It is ok to not be gung ho about watching out for me 24 hours a day, forever. I understand I am on a train going one way, I am not getting off of it or coming back. I had to remember how to smile, how to be grateful, how to allow people to give what they can and not berate them for having limitations.
There is a big hole in the discussion about ALZ - help for people living now, disability laws amended, Medicare available...and there are no recovered patients to continue working towards this like cancer survivors.
By the time I comprehended the current attitude landscape after I was diagnosed, my capacity to do much was halved. The timer is always going in my head, how much longer can I participate in the world. Trying to find some way to participate in changing the national environment and mind set is part of my every waking moment. We pass the torch pretty quickly. Words are the currency of raising awareness.
I am losing my train of thought but once you see the hole that exists in the call for help, non-patient based objectives, raise money for a cure, I don't think you can un-see it. Please advocate for help for those of us living with dementia in any way you can.
Lastly, to be able to help others through this board is a tremendous gift of ALZ.org ! I am so humbled when someone feels their burden lifted by taking the longer view, the more loving view towards dementia. This board is an agent of change and I honor the organization for providing this opportunity.
Michael loved being part of this, I hope the rift is mended SOON as his life is changing every day, the time to make it right with him must be soon to matter. Time is everything when living with dementia.
love and courage