Uneven Aging: A letter to my older self

My parents were straightforward about the inevitable exigencies of aging. "One day", Dad said from time to time, "the axe drops". He saw it with patients, with colleagues, friends. I am witnessing that now, from minor but limiting incidents like a sprained ankle to the big, life-threatening diseases.

Sometimes there's a precipitous event, but for many older persons, a natural deceleration occurs—the popular expression is, your tread gets thin. The culture promotes denial; we are enjoined to fiercely ignore the inevitable shift.

To counter that in myself, I have written a letter to my future self, issuing instructions in the case of a period of decline. The letter assumes I will have the mental capacity to understand it, and the good sense to follow my instructions. 

Though family would confront my obstinacy, why not hold myself responsible? If you can be your own worst enemy, why not flip that and be your own best advocate?

There are three main orders:

1. Don't be a stubborn fool. I'm telling myself to move to an assisted living residence or other supportive housing if I can't manage to eat three square meals a day (an ice cream sandwich does not count); if I need help with personal care, taking medication, or getting around; if I need more social interaction.  Some I know plan to live with their children, but it's not something I expect.

2. Should Le Duc be around, he might be in better shape than me. If so, I remind myself, Make sure he does not shoulder all aspects of your care. We often discuss the financial implications of the coming years, but this is a different matter: the endless work would affect his own well-being. He is perfectly capable of being a stubborn fool too, so I ought to point out examples of successful support and tell him it's time.  

 3. One critical point precedes the first two: If you sense that your health is declining, do not deny it, because that self-deception will make the situation worse for everyone.  

The press features persons who are driving themselves across the country in their nineties, or playing tennis every day as they nudge the century mark. These are super-elders, one end of the ability continuum. (The other extreme are those who see their imminent demise in every twinge.) I figure the normal curve has served all these years, so I should prepare for some time spend being somewhat diminished.

I saw the price of denial close up over the past several years. (Names are pseudonyms.) Judy knew that her beloved husband, Hal, had symptoms of cognitive decline, but every time he was evaluated, he summoned some superpower and passed the tests. Not only was he mentally competent, but charming and friendly to boot. On each occasion she was told, "He's fine. You can take him home."

For several years, he pulled off this feat multiple times, but she and their children, trying to live with a definitely ill person, were exhausted and frustrated. Judy, one of the funniest and most vibrant women I know, was sinking into grief. Because Hal lacked a diagnosis, they were ineligible for home care.

Hal declined further early this year and was diagnosed with an advanced form of dementia. He now lives close to home in an extended-care facility and is doing better now that he receives treatment. The family can now access benefits included in his union's health plan, such as counselling for Judy, which in turn helps her to care for him.   

I suppose you're thinking, Hmm, Duchesse's letter assumes a lot of control. As I wrote, I thought of the Yiddish proverb, "We plan; God laughs." I do not believe that a Supreme Being directs individual affairs; should that turn out otherwise, I have only written a letter. If that letter is ignored by human or divine readers, I tried.  

It is not the only such letter I have written; I recently re-read the first, from me in my thirties for use twenty-plus years later: Don't criticize your adult children, their partners or grandchildren unless it's a life-threatening situation; don't force your stuff on them; remember how busy and tired parents of young children are; cheer on their milestones; appreciate their attention." There must have been some dust-up at the time because I also wrote: "Be careful about day drinking with Mom." 

At age 40, I ended the letter with just two words, "Love them", and the same holds true for what I expect to be my last letter to self.



I think such a letter should also include instructions for assisted suicide/medical aid in dying should one find him or herself in a situation in which life is not worth living (according to the person's values). Dementia is an obvious one, but there are others.
Ocd said…
But what treatment is Judy’s husband receiving & what type (cause) is it? The treatments ...are they effective & how? So many meds for one dementia are counter-indicated for others, & some facilities rely on chemical restraints.

I so clearly recall chasing an ER doc down the hallway begging for treatment for a family member w/ dementia. “There are drugs!” i insisted. “Yes,”. he mumbled, “but they don’t do much to help.”

I’m “one step away from needing emergency surgery,” due to vertebrae injury/displacement, my PT tells me. I could end up paraplegic—which terrifies me far less than dementia.

For those advance directives Lagatta mentions-here at least (States), they must be written *before* any diagnosis of MCI or cognitive issues. I’d prefer to clock out before being medicaided into a facility for low-income people like myself.
Duchesse said…
lagatta: My letter addresses •earlier• stage, when I might be ignoring that my health situation is changing. (Example, my mother, sharply criticized us for "mumbling", when she needed hearing aids.) The content is strictly up to the writer, but if you think you would forget what you once held as clear intention, go ahead.

I ardently hope that MAID will soon be included in the Advance Medical Directive that Quebec permits persons to file indicating directions for their care should they be unable to communicate them.
Ocd said…
Also, for those having trouble getting answers or needing practical help, Alzheimer’s Association has a forum. Although anyone can participate in any section, there are dedicated forums for those whose spouses have dementia, one for family or other caregivers, one for people w/ dementia & another for early onset. There is one for Spanish speakers. Also are discussions of clinical trials. And one for the bereaved.
The participants are mostly facility-oriented, which can be frustrating for those who want to caretake at home. Despite that, I found tremendous practical day to day assistance as well as camaraderie:


Duchesse said…
Ocd: Judy is impressed with the quality of his care both from his doctors and the facility. Fortunately she lives very close by so sees what's happening. This is a palliative situation.

Here, if a person asks for MAID they must be "able to understand the situation and the information given by doctors and be able to make the decision". So, Mild Cognitive Impairment may not disqualify the person. There is room for a doctor's discretion, especially if they have been treating the person for some time and they have previously expressed their wishes.

A friend told me that last week her mother died with medical assistance. When the pharmacy told her she would need to confirm receipt of the drugs, she said, with a laugh, "How can I? I'll be dead!" She was 95 and in continual pain. She died in peace and surrounded by love.
LauraH said…
I see the stubborn denial syndrome played out a lot, both with my parents and those of friends. The attempt to hang on to the-way-its-always-been inevitably seems to lead to greater loss of independence and function than if the situation had been faced and dealt with in the beginning.

I'm hoping/planning that since I am on my own and am used to outsourcing some home maintenance and other practical tasks, I'll be able to make the transition to getting more help with personal tasks as well.

BTW Based on a conversation with a friend, apparently a lot of people no longer book an annual medical checkup Seems to me that as we age, that would be a smart thing to do. The 'I-can-tough-it-out' approach is not helpful for us, partners or family.
Laura J said…
Ah, another spot on post on aging! We’ve been good about talking with the offspring about care/end of life issues and the legal stuff but I think this is as important. I certainly have accepted subtle declines in stamina (well, not so subtle, lol) a certain reluctance to take on projects, and of course, an aging body. There certainly is societal pressure to be at the super elder end of the spectrum, partly because, I expect, we collectively can’t deal with old people. We know North American populations are getting older but the infrastructure lags behind.
Duchesse said…
LauraH: See this AARP article, "Do You Need an Annual Physical?"
Some provinces no longer cover this as part of your health insurance (Ontario does; Quebec pays only for patients who have a "health problem".) We all have stories of someone whose doctor spotted something during a physical (including the lab work or other tests), and also the opposite, persons who got a clean bill of health only to learn otherwise shortly after.

LauraJ: Le Duc and I recently took a 4-day trip that was only lightly physically demanding. Yet, we noticed the difference in stamina compared to travelling just three years ago. We joked that we have weaker "travel muscles" after being grounded by the pandemic, but I think it is simply getting older, too.
Allison said…
A timely post! A suggestion for your letter would be to know when to gracefully move towards downsizing (or right sizing as they like to say) My parents moved from condo to over sized house to town house (and this was after they were 75!) but were finally cornered by my mother’s increasingly failing health and moved into a retirement home. We spent so many weekends cleaning out that townhouse where they had lived for just a few years. Both were hoarders and magpies of the first degree and there was 69 years of ‘stuff’ dragged from pillar to post during their life together. So yes, know when to hold ‘em but equally know when to fold ‘em, leave no mess for the children to clean up, make sure the will is up to date, POA’s and executors are chosen and directives for end of life care in writing and are clear to the POA’s.
Check out retirement facilities while you can that might interest also check their policies…some of the most upscale will turf residents who start acting well, old. My father is in an excellent retirement home that goes to end of life so if he declines and has palliative needs he can stay there. It’s not a flashy multi million dollar company but it’s well run. He’s 97 and reports that he plans on remaining on the planet for several more years. He is inspiring in that his thinking continues to be future oriented but also a cautionary lesson in that the reality of aging is you can’t take it with you so best to divest before exiting!
Unknown said…
Your posts are always cogent and most appreciated.
Vancouver Barbara
Jean Shaw said…
One of my college professors signed up for the Quaker retirement home in Greensboro, NC, while he and his wife were in their mid-50s. I am forevermore amazed by their rational, logical, thoughtful approach.

On the flip side, my oldest brother and his wife delayed delayed delayed until their backs were up against the proverbial wall. He's now in a rehab facility recuperating from the combination of COVID, muscle weakness, and underlying kidney disease (which probably festered during the pandemic). I could go on but you get the idea.
Joan said…
I also appreciate this post.
I am 82 and today attended my first physical therapy appointment that was prescribed by my orthopedist. I had a "wellness" check up in mid March and if I hadn't written myself a list my swollen lymph glands on right side of neck would have gone uninvestigated.
G.P.ordered lab work, all normal, then ultra sound on my lymph nodes, and the results were within normal range. Then since my right neck and head pain continued, I saw the nurse practitioner. She prescribed 2 lab tests for white blood cell count and infection, inflamation, and the tests were within normal limits.
The G.P. recommended a coronary artery scan since my cholesterol was high (genetic, no meds
11 years since only whole foods, plant based diet) The scan showed "mild plaque".

But none of this helped my sore neck. I referred myself to an orthopedist and he RX physical therapy...finally I got help only by being by own advocate. My neck feels better already and I will continue weekly and do the prescribed exercises at home meanwhile.

I have felt a loss of energy for sure since turning 80.and expect it to continue as I age.
My husband (81) insists we remain in our small house till he "is carried out feet first" and that is the best for now. I have a cleaning lady every 2 weeks, and a gardener for my huge native plant front garden and my many roses and I still enjoy doing some gardening myself. Visiting two friends in senior care apartments, I am not wanting that for myself....yet.
Jane in London said…
This is such a relevant post for me. I cared for my mother when she had dementia in her 90s, and was frequently rendered tearful by her refusal even to consider residential care (she lived just a short walk from me, but alone).

This was made more poignant by the fact that, when younger, she had frequently said we should get her into residential care if she ever began to show signs of dementia and should ignore any protest she might make. Which is all very well in theory, but not in real life, of course!

I was saved by a compassionate doctor at our local hospital when my mother was admitted overnight for something unrelated to her dementia. Exercising a masterly mix of kindness and authority, she explained to my mother that she was willing to discharge her from hospital only if she agreed to move to the residential care that she clearly needed. She told my mother "Your poor daughter is exhausted" and, by some miracle, my mother finally seemed to accept this.

My husband and I are now a little way into our journey through his form of dementia, which is different from the one my mother had. This has been made a bit easier for me by his willingness (so far) to accept that he is ill, and to follow the regime and advice given by his trusted medical specialist. I know other spouses who have not been so fortunate, and in particular many who have had to resort to all sorts of subterfuge to prevent their cognitively-impaired spouse from continuing to drive...

Duchesse said…
Allison: Yes, housing is an important element and such a bundle of contradictions. Some person's letter to self will involve renovations to the current home, so that they can live there as long as possible. Another woman might wish to remind herself that she should move while she can still exercise her choice. (We downsized 11 years ago, and while there may eventually be another one, we live in less than half the space of our former home.)

When I examine what is in my letter, now on the third draft, there is a focus my behaviour: to resist reflexively disagreeableness, to not mistake stubbornness for autonomy, to accept help with gratitude, even if pride rears its head. To reconcile, if possible, rifts, and to mourn those situations where it is too late.

Jean Shaw: What a timely comment! I just heard one friend criticize another for moving to assisted living "too early". Yet it is easier to adjust to any new environment when you're not forced to do so. Thank you!

Joan: "I got help only by being my own advocate": I am grateful you could do that, and did. Albert Schweitzer said, "It's supposed to be a secret, but I'll tell you anyway. We doctors do nothing.We only help. And encourage the doctor within."

Jane in London: Dementia, as I have seen, scrambles judgement. What was once avowed may be disowned or forgotten. I admit my letter assumes I am competent when I read it, but I should not assume that. If it is not, at least my family will know what I intended when I was not impaired. When wrote it, I kept thinking of a powerful scene in the film, "Still Alice" when Alice reads the letter she wrote to herself before her Alzheimer's worsened.

Though the mechanism for suspending a license vary by jurisdiction, many locales have put more stringent measures in place. But someone has to step up to initiate the process and it is hardly ever the driver.
Whad'ya mean an ice cream sandwich doesn't count??
I am only 45 and don't understand yet how you can simply become frail. It'll come to me if I'm lucky but for now, I am enjoying that river in Egypt.
Mmm, can we please, please talk about pearls now?
Kamchick said…
Such a useful discussion, Duchesse. Here, we are 80ish, living at the Lake and loving it. BUT..my husband now has a mobility problem, so at increased risk of falling (he is careful). He had a recent crisis, but has recovered well with the help of fabulous 'Community Home Support" (OT, appropriate physio and even support for personal care if he needed it.
The thing is - we live in the equivalent of a large apartment - all on one floor, even laundry, wide doorways, giant decks AND we have a very fine young family doctor and a beautiful little local hospital five minutes away. We discuss our situation from time to time but can't see what we would gain from moving to town or back to the city (except a lot of noise, traffic and probably no doctor). It's a tough time and we all deal with the 'unknown' - so difficult to plan effectively. I so appreciate your post.
Duchesse said…
Beatrice from Sydney: Everyone knows Sydneysiders, especially the female of the species, are ageless! Ribbing aside, comes the day, if one is lucky enough to receive the gift of years. That river you enjoy has a fast-moving current, faster than one thinks.

Kamchick: Your summary gladdens me and, I will guess, also readers who live in the country. It is the opposite of a friend's recent experience trying to find home services for her recently-widowed nonagenarian parent, who wanted to live alone in his house on a lake (in the US), despite mobility and health challenges. She could find no reliable services; the difference is you have the these and your husband is not alone. (She does not live nearby.) Whether you planned this or not, your situation is ideal for you.

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