Is something wrong ?
Nope, mostly I’ve been enjoying living in the present in summer mode, even though it means sharing time with my all-too-constant companion, Professor Alzheimer.
This is my 68th New England summer, give or take a few, and I’m getting used to the routine by now. A routine of no routine. Bits and pieces of every weather, as the natural world warms around and within us. Swimming. Yet another building project.
Nope, mostly I’ve been enjoying living in the present in summer mode, even though it means sharing time with my all-too-constant companion, Professor Alzheimer.
This is my 68th New England summer, give or take a few, and I’m getting used to the routine by now. A routine of no routine. Bits and pieces of every weather, as the natural world warms around and within us. Swimming. Yet another building project.
We’ve just made it through another record-breaking bout of HAZY, HOT AND HUMID, while a couple of weeks ago on the radio, they had warned us of “scattered frost in the cold pockets of the Northeast Kingdom.” The fierceness of the most recent relentless heat events no doubt made worse by human activities…
… Should we discuss the end of the natural world…?
… or perhaps today’s weather...?
Here’s another idea… How about yet another glimpse at our uninvited guest, Professor A and his entourage?
I recently heard from a friend-of-a-friend, call her Sarah, someone I hadn’t yet met in person who was more than a little disturbed about her recent Alzheimer’s diagnosis, and was generally trying to make sense of her new world.
Sarah and I shared familiar fears:
We’d been overwhelmed by the LOSSES that we imagined ahead of us. A certain grimness was beginning to feel normal.
We both worried about the CHANGES ahead in our identities, literally who we are, while the incurable disease runs its course.
As the attacks on our intellects and memory continue, we feared changing into people neither we nor our loved ones would value spending time with. How can we not become strangers? What is left for us if the glue of memory no longer holds our selves together?
Isolation and loneliness may come to star in the time we have left, as our social selves deteriorate.
We might lose our lifelong interest in learning new things, appreciating clever songs or jokes.
Our lives will continue their inevitable decline into a disastrous train wreck.
This is a nightmarish list of disastrous outcomes, and it’s only just a generic beginning. I'll bet that each of the millions of people living with a dementia can add nightmares of their own as they contemplate their futures.
Yet, a deeper look reveals many of our shared nightmares to be Possibilities, not carved-in-stone inevitabilities. Ironically, I can still vividly remember the times, more than a year or so ago now, when I could not get through a day without tears.
Every day!
I was involuntarily visited by my Loss List, with unhappy results.
Then, one day, I dimly began to realize that the disintegration Sarah and I feared so much was still in the future…. Perhaps far in the future! Perhaps not to happen at all!
A blessing and a curse of the Alzheimer’s path is its slow speed, at least for me. For many of us on the Dementia Continuum, especially those with Younger Onset, we have way more than enough time to consider where the path might lead us.
Letting the vocabulary shift from “will” to “might” is a huge step. Who says Sarah or I will die because we’ve forgotten how to chew or swallow, or breathe? Or that we will wind up living only in shadow shells of our “true selves.” Sure, that could happen. But so could a horrendous traffic accident on the way to the neurologist appointment next month.
Let’s keep the present and the future in their proper places and LIVE in the meantime.
So, what do I want to do with my time left?
What do YOU want to do with YOURS?
[Jane's Note: "Yet another building project" You heard Sky right — we've embarked on our 7th house building project ‚ a family camp on Lake Champlain. This time the whole family is working on it, though Sky and I (as retirees) have done the bulk of the work so far. Building with Sky is an interesting challenge. He no longer has the full complement of building skills that he used to have, but he still has plenty. The challenge for us is to figure out what things he can do, and what things someone else needs to do. Luckily, we're doing OK so far, and the first floor is framed up. It's not without its frustrations — for all of us — but we're hanging in..... in a beautiful place.]
… Should we discuss the end of the natural world…?
… or perhaps today’s weather...?
Here’s another idea… How about yet another glimpse at our uninvited guest, Professor A and his entourage?
I recently heard from a friend-of-a-friend, call her Sarah, someone I hadn’t yet met in person who was more than a little disturbed about her recent Alzheimer’s diagnosis, and was generally trying to make sense of her new world.
Sarah and I shared familiar fears:
We’d been overwhelmed by the LOSSES that we imagined ahead of us. A certain grimness was beginning to feel normal.
We both worried about the CHANGES ahead in our identities, literally who we are, while the incurable disease runs its course.
As the attacks on our intellects and memory continue, we feared changing into people neither we nor our loved ones would value spending time with. How can we not become strangers? What is left for us if the glue of memory no longer holds our selves together?
Isolation and loneliness may come to star in the time we have left, as our social selves deteriorate.
We might lose our lifelong interest in learning new things, appreciating clever songs or jokes.
Our lives will continue their inevitable decline into a disastrous train wreck.
This is a nightmarish list of disastrous outcomes, and it’s only just a generic beginning. I'll bet that each of the millions of people living with a dementia can add nightmares of their own as they contemplate their futures.
Yet, a deeper look reveals many of our shared nightmares to be Possibilities, not carved-in-stone inevitabilities. Ironically, I can still vividly remember the times, more than a year or so ago now, when I could not get through a day without tears.
Every day!
I was involuntarily visited by my Loss List, with unhappy results.
Then, one day, I dimly began to realize that the disintegration Sarah and I feared so much was still in the future…. Perhaps far in the future! Perhaps not to happen at all!
A blessing and a curse of the Alzheimer’s path is its slow speed, at least for me. For many of us on the Dementia Continuum, especially those with Younger Onset, we have way more than enough time to consider where the path might lead us.
Letting the vocabulary shift from “will” to “might” is a huge step. Who says Sarah or I will die because we’ve forgotten how to chew or swallow, or breathe? Or that we will wind up living only in shadow shells of our “true selves.” Sure, that could happen. But so could a horrendous traffic accident on the way to the neurologist appointment next month.
Let’s keep the present and the future in their proper places and LIVE in the meantime.
So, what do I want to do with my time left?
What do YOU want to do with YOURS?
[Jane's Note: "Yet another building project" You heard Sky right — we've embarked on our 7th house building project ‚ a family camp on Lake Champlain. This time the whole family is working on it, though Sky and I (as retirees) have done the bulk of the work so far. Building with Sky is an interesting challenge. He no longer has the full complement of building skills that he used to have, but he still has plenty. The challenge for us is to figure out what things he can do, and what things someone else needs to do. Luckily, we're doing OK so far, and the first floor is framed up. It's not without its frustrations — for all of us — but we're hanging in..... in a beautiful place.]
I choose to interpret this post as a hopeful message, Sky (and Jane). It's a good reminder not to get caught up in all the "what-ifs" and choose instead all the nows of the present moment. Thank you!
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