Uneven Aging: Social life or the next best thing

The occasional series, Uneven Aging, addresses what happens when one person in a couple is healthy-as-usual, and the other is stricken, either temporarily or chronically.  

When the formerly-healthy person is forced to withdraw from or limit activity,  their partner must adapt, sometimes overnight, to the constriction. After an initial flurry, concerned friends go back to their routines, and the sick person is still laid up. "Endless TV", said Rosa, describing Mark's recovery from heart surgery, "and the same movie on repeat, because he couldn't make it all the way through."

There's a trope that everyone benefits from social contact, but when the afflicted partner is struggling, that becomes tricky: on one hand, they usually benefit from diversion, on the other, they may insist on sequestration. Mara, who recently supported her wife through a course of chemo, said, "She said she just didn't feel eligible."

If you are the healthier partner, you become judicious about when to press your charge to make an effort and when to back off; timing is everything.

Lou cares for her husband, Henri, who has a chronic neurological condition. She is like a psychic wind sock, gauging when going out for lunch would be a lift, and when to not even mention it. Friends may receive last-minute invitations for a casual dinner, but also, she might cancel an hour before. Though they have space, the couple no longer host their visiting children and grandchildren during their visits; she rents a nearby Air BnB so Henri has the quiet he needs when he's having a tough day. 

"I'm cracking into the piggy bank", she said, "so the time he can spend with them is good." Her  sensitive approach lets Henri choose the amount of social participation, and results in him doing more, because he does not feel pressured to summon stamina he does't have. 

Aware that she needs stimulation and company, Lou has asked a few friends to invite her to "run errands" with them, though this is actually grabbing a sunny spot in a bakery café when Henri rests. She attends a drop-in evening reading circle at a nearby bookstore, reading her own book for forty-five minutes, then chatting about it over a glass of wine. (She especially enjoys that there is no assigned book or deadline. And the Sauvignon.)

The layers of recovery

When recovery takes months, the lack of social contact can weigh heaviest on the caregiver-partner. No suggestion she makes elicits much enthusiasm: Want to go for a drive? How about sandwiches in the park? Shall we try our friend's virtual Trivia Night? Hard no on all of that. The partner may be stronger again, but the social muscle has atrophied. 

Jeanette had both knees replaced within six weeks, and said the worst pain was near-death from boredom. Her son visited to take care of her immediately after each surgery, but soon she was alone in an echoing apartment. As soon as she could drive, she raced back to her weekly mah-jongg group only to find that sitting at a table for hours was unbearable, and the group's nonstop chatter drained her.   

She re-established contact with several distant friends, ramped up the Zoom chats, and now looks forward to visits from them this summer, excellent motivation to continue her physio—and sees there is a kind of "mental physio" she needs just as much.

Whether a person is an introvert or extrovert, I have noticed, makes less difference than how they handle disruption and loss of control

Jill's husband, Joe, fell from a loft in their barn and broke several bones in his leg; he was at home for months. The accident turned this kind, dynamic man into a dependent and peevish patient who would not leave the second floor of their farmhouse. Jill could barely get out to shop for groceries.

Joe would not appear in public until he could walk without a cane. There was more at play here than physical limitations; a competitive athlete even in his late sixties, he was reckoning with a blow to his self-image. Somehow, he had to regain control, and he did this by issuing orders to Jill from dawn till bedtime. 

Her daughter, Lauren, saw Jill's distress and got her involved in a project she could fit into her day: contacting the community's homeowners for the town's annual summer garden tour. Then, Lauren had a talk with Joe, and told him that if he could get to the den, a half-floor below the bedroom, he could fetch his tray from the kitchen. She took the brass bell from the bedside table, and said, "You're 80% recovered, Dad. Mum loves you, but you have to give some back."  

Joe has amnesia about the fall and everything before his emergency surgery. Jill says she wishes she had amnesia about the period when she had no life other than caretaking. "That," she remarked, "was a lot like when I had Lauren—my social life just vanished overnight—but this time, I didn't have nine months to prepare for it."

Joe added, "... and I was your squally baby boy!"  They can laugh about it now.

Keep a beaker of humour at hand through the recovery process; in the case of a chronic situation, refill as needed before it runs dry. The situation is not, as Joe implied, that much different from managing a newborn, because illness makes the formerly mature unruly and mercurial. 

Consider who needs a break, and don't delay doing something about it by next week, at latest. You will both feel better for it.



 

Comments

Laura J said…
This is such a thoughtful series, much appreciated
Jane in London said…
As always, and particularly in this series, a thoughtful and beautifully constructed piece. An older friend spoke to me recently about a couple he has known for a long time. Both in their 90s, the wife recently died having been bed-bound and it became clear that - for years - she had made her husband into a sort of slave.

His whole timetable had to revolve around her extreme night owl tendencies, and he was not allowed out of their flat for more than 20 minutes before she phoned him to ask how long he would be and insist he come home. Any sort of outside social life for him was out of the question. Although my friend continued to visit the couple regularly, the wife had become increasingly peevish and seemed to want to spoil this tiny bit of society that her husband enjoyed so much.

The husband had been devoted to the wife throughout their long marriage, and his love for her meant that - over time - he had allowed her to become a veritable tyrant. Everything revolved around her needs and moods and, unchecked, she had ramped up her demands and had come to see them as perfectly reasonable.

It really made me think, and I feel very strongly that we must be vigilant to make sure we maintain some reasonable boundaries when caring for those we love who are ill. Becoming cut off and losing social contact is a real danger. This is particularly so when the illness is permanent and progressive: there is the risk that the care-giver is like the frog boiled gradually from a cold water start, who doesn't see how isolated their position is until it's too late and changing things becomes a huge trauma for all concerned.

Easier said than done, probably. But at least if we are vigilant and take time to step back now and then to ask ourselves whether the demands on us are reasonable, it might stop a bad situation sliding into an intolerable one. Ooof - tough subject!
Duchesse said…
This comment has been removed by the author.
Duchesse said…
Jane in London: Thank you for this nuanced comment and the rather chilling anecdote. You bring up an important point: care for a chronically afflicted person should include setting up expectations for discretionary time off, and should be renegotiated as the situation requires, otherwise there is a drift toward unceasing attention.

The man caring for his wife may have been able to book regular respite care for an hour or two of time to go out with a friend. The wife's calls are another matter; it seems he was not able to initiate a frank and firm statement of his needs. You end up with •two• unwell persons when that situation goes unaddressed for a good while.

This series was born years before I began to write, when I noticed that my mother's widowed friends—once the initial period of mourning eased—looked at least a decade younger than they did when they were the primary (and often only) caregiver for their ailing spouses. They had been run ragged, and a few were even doing heavy childcare for their grandchildren as well.
LauraH said…
This is such a necessary and thought provoking series. Thank you.
Wendy said…
I appreciate this series, though I often find the posts difficult to read because they strike so close to home. My husband had a serious medical “event” just as we were coming out of Covid isolation and for six weeks after I felt I was living a nightmare. He fell into a deep depression and I was afraid to leave him home alone. Added to that was the fact that we live in a rural area with no support system. He has since recovered and we are in the process of selling our home and moving nearer family and medical care.
I often think of an old customer of mine whose husband had suffered a serious stroke, putting him in a wheelchair and seriously affecting his speech. She took wonderful care of him, and arranged for a respite caregiver to come every Thursday so she could get out on her own. She set a great example for me to follow.
Jean S said…
I've seen a couple variations on this theme the last couple of years. It's sobering, to be sure.
Duchesse said…
Wendy: Thank you for commenting; your husband's situation is so common that the cardiac nurses I worked with years ago would predict it and warn the partners. In those days a social worker would be available to help them, mostly not to take the depression personally. Now the system is so stretched few health care workers take time to address the psychological effects of heart and stroke. Of course it is a personal decision but if you can be closer to medical care and family, I'd do it.

Jean S: Sobering and also, I hope the series encourages making a few fall-back plans. For example, a neighbour who lives alone, just changed his locks to a model that accepts a master key so that first responders can get in without breaking down the door.
Allison said…
A thought provoking post. During my years in health care I had many occasions to speak with spouses and other family members who were sole caregivers of an ill loved one. I was always honoured to hear their stories and impressed by how they handled the cards dealt with strength and determination. It’s not just older couples that experience this type of situation though… Many years ago a young family member was diagnosed with ALS he had a wife and very young kids. He and his wife were told that he had about five years of life which they sadly accepted…except he lived for fifteen more years. After ten years the wife went to his parents and told them that she could no longer stay in the relationship (at this point he was totally dependant on care and could no longer eat or speak) his mother understood her young DIL’s reasons for leaving but his father never forgave DIL who took her children and found a new home. Her children hated visiting their father, the youngest having never known him when healthy. The wife had been exemplary during the first five years of his illness juggling his care, child care and working as a hospital pharmacist. I think she had completely and utterly burned out and couldn’t face a hopeless future. The judgement on her was heartbreaking.
I spoke with a friend who went through a similar experience, her husband also given five years for a different but equally debilitating illness. Her take was that she had mentally prepared herself to make it through the given period and when her husband passed five years later it was with a mixture of sadness and relief that it was over and that she and her kids could move forward. My friend looked at me and said with all honesty “I feel so sorry for that young woman. I honestly don’t know where I would have found the strength if my husband had lived much longer. You don’t ever want the inevitable to happen but you always wonder how much longer can you go on and if you’ll even have the strength to carry on another day.”
Offer hugs, food, visits and support to friends and family living through those times whether there’s a bright light promised at the end of the tunnel or the road is headed to a darker destination. The bravery and strength it takes to live through those times can never be underestimated, consider it an honour to witness and be there when needed.
Duchesse said…
Allison: The prognosis is so often wrong inaccurate. (That's why I advise caregivers to get more help than they think they need before they are utterly exhausted.)

I have written about "when sickness and in health" no longer works: https://passagedesperles.blogspot.com/2020/03/uneven-aging-ending-marriage-retaining.html
I recently met with one person in that post, Terri. She now has a new partner but so does Jack, whose MS is at the point where he needs full-time home care. He met a Filipino woman online, things progressed, and he has married her and will sponsor her and her 12 yr old son, who arrive in Canada soon. When I said this sounds like a green card marriage, Terri said, "No, she is a natural caregiver. I've talked to her and I trust her."

The expectation that the healthier partner will provide intensive care for however long it may take is built into the moral tradition of various faith-based marriage vows, but in reality a great deal depends on the relationship before limiting circumstances arise.
Barbara said…
The last five years have been very demanding for us as couple. I am 74 y/o and husband is 11 years older. There were surgeries, pneumonia and a few more indispositions. So we both were in rotation as a caregiver (it works better, if I am the one who does the job.
During that times I had a talk to our family doctor in which she told me about female patients who impatiently wait their husbands to die. The partners Dementia often is one reason for this wish.

I've seen widows who flourished after their partner was gone.

Very good blogpost, Duchesse. And I appreciate all comments.




Duchesse said…
Barbara: Your situation is almost inevitable as we age: the two take turns with procedures and conditions, swapping places. Lucky you could spell one another, and I'm hoping you are both in good health again.

When you care for a person who slowly declining, their death is a mix of relief and grief. After my Dad died, my mother placed a large, recent photo of him on her dresser, and her friends said, "Why do you use this photo of Bill, don't you have better ones?" She said, "This one reminds me it was time for him to go."

I too deeply appreciate comments on this series, there is much experience here!
Venasque said…
My brother-in-law died last year after nearly 60 years of marriage to my sister. He was much loved, he was really a brother to me, part of my family nearly my entire life. It was very sudden and unexpected and my sister was, and is, grief stricken as you can imagine. They lived in a condo where there are many widows who have been very supportive and comforting in what has been a terrible year. I keep telling her that she (and he) are very fortunate that he didn't suffer. I'm going to show her this post in the hope that it offers a little comfort and thankfulness.
Duchesse said…
Venasque: A bereavement counsellor told a friend that sudden loss is so intense that it is its own category of grief. My next door neighbour lost his husband suddenly in Nov. Without any family here, and having moved here 6 yrs ago so not a lot of friends, he has been really struggling. It is very good your sister has you in this time.
Kamchick said…
Very important series and such thoughtful comments..I did comment but I think it got lost in cyberspace. News from here is that we are still moving from the Lake to the city - nearer to family and specialized medicine which one of us (so far!) needs. We will be in an independent seniors apartment but within a 'community', which means that the adjacent buildings have 'levels of care' if you require them. We are hoping that this will work well for us as we go along and that we can enjoy our family without burdening them. Not all smooth, though....construction delays on the building and still no firm occupancy date. I am still enjoying my walking group here - very valuable friends and social life. My husband has a mobility problem, so is more isolated - will be good for him to have a more accessible and social setting in our new location. Things could be a whole lot worse...we're doing OK, but do realize that we are now too old for our rugged outdoorsy lifestyle.
Duchesse said…
Kamchick: Thanks for persisting, your first comment did not arrive. The multi-level complex is a popular option for a reason. A couple who sometimes contribute to this series moved a year ago to a condo building in Ottawa that is part of a research study with Queens University on aging in place. They have many more services than a regular condo, and Queens is following residents to see if the residents can live there all their lives. I look forward to hearing how you like your new apartment, and I am sure many readers would like to hear about it too.
Kamchick said…
I'll be sure to report on our new digs when we finally get there. In the meantime, we would love to know where the Aging in Place condo is in Ottawa in case we need to make a change. I'm a Queen's alumna and we have a granddaughter there now (2nd year Nursing Science), so we ate intrigued....Hoping to make our move in time for the tulips!!
Duchesse said…
Kamchick: See https://coaottawa.ca/2022/02/02/norc-ssps-an-innovative-supportive-housing-model-for-older-adults/ for many supportive buildings in Ottawa, (hover over infographic for addresses); theirs is 1081 Ambleside Dr.

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