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I Have Alzheimer’s or Another Dementia
Bridging The Two Worlds
I actively participate in
the Alzheimer's Association forum that is primarily populated by
caregivers. I have learned a lot, I have
preserved my writing skills, and I have touched some lives which lets me know
that I still have some value and worth in the world. However, being populated primarily by
caregivers, it can give a very slanted view of things in the world for someone
like me, who happens to also have dementia.
In life, I have a foot in
three of the worlds on that forum. I
have been caring for my mother for the last 10 years, and continue to care for
her even now; my daughter has come to care for me; and I was diagnosed with
dementia. This gives me a somewhat
unique perspective on the different sides of things.
What I find troubling and
a bit of a challenge to grapple with, is that so much of what goes on in the
world in terms of how we are treated and cared for, is created by people who
don't have any idea what it is like to have the disease. They make guesses from the outside looking
in, so to say.
Some general observations I have made in my time there: The spouses on the board
have an easier time, overall, likely because they know their spouse as a human
being, they are there all the time, and they likely adapted slowly along with
the disease progression. The children
caregivers of parents are the most outspoken and the most insistent in their
ways, have a much harder time of it, get more behavior issues, and hesitate
until drastic measures need to be taken, and don't see their parents as the
people they are, but as the parent they used to be.
In the same way, the 65
and older crowd with dementia are less likely to speak up and out about things
and are more likely to go with the flow.
Whereas, the under 65 crowd is more outspoken. The younger one is, the more one seems to
demand of the disease, to retain their function and independence, and to
continue to create the kind of world around them that will allow them to do
Somewhere in the middle, I
find myself wondering...will we ever be able to bridge these two worlds?
Can we come together for
the greater good?
Can we make caregiver's
jobs easier with insight and education as to what is going on?
Can we make the later
stages better for the person with the disease?
I'd like to think we can,
but then again I am an incurable optimist that way.
Thanks for your honest opinion, plenty of good insight.
For what it is worth, this post was just a reflection of some things I was observing recently, self reflection I was doing, and open questions of wondering whether we will ever be able to work together towards the greater good. It is part of my ongoing self reflections on me bridging the worlds between me as a caregiver to my mom, and me needing more care now and not really knowing how to enter that dance. So I was asking questions, reflecting, and wondering...maybe with the hope of finding some answers for myself.
Regarding the things you said about education and who: While Teepa Snow is certainly the best in the industry, there is only one of her and only limited videos on youtube - and certainly not enough to train anyone (thinking here of my daughter). But other than that, I don't think I have weighed in yet on who knows, or even, how we *should be* treated (other than human). I am not even sure I have an opinion on that yet. I am still in the ongoing process of deciding what that looks like for my own life. My daughter looks to me to tell her what I want, and I just do not know how to bridge what she can do and even picture what I might need or what might work, I honestly don't know. My workers look to me in the same fashion. They all expect me to answer, but I have no answers other than to tell them that I need them to know.
I'm glad you have some idea what you'd like, maybe you would consider sharing?
Great perspectives Lane, thanks.
Yeah, I found it very hard the transition of my mom into being now like my child. There are no words for that feeling, but need to be. We are just not scripted that way.
Good point about the parenting advice, hadn't thought of that.
Teppa Snow, in conjunction with Pines Education Institute Dementia Care Academy, has serious training available. https://dementiacareacademy.com/program_catalog/
Naomi Feil's site https://vfvalidation.org/web.php?request=training
Perhaps these would help your daughter