Uneven aging: Navigating disabilities

I live with a partner who became disabled in middle age, as have friends and neighbours.

Le Duc is hearing-impaired. He says this is a particularly difficult disability, because people (including me) grow frustrated easily and sometimes imply he's tuning out of a conversation on purpose. He can't tolerate loud restaurants or raucous parties. Movies must have subtitles, and theatre or concerts are out, even from the first row. Though he wears high-tech hearing aids, they only help so much.

As we age, it's likely one partner will be afflicted by either the standard-issue disabilities like impaired hearing or vision, but also less-visible problems, such as mental health issues.

One day you notice something's not the same, or there may be a gradual accumulation of events that suggest symptoms. (Sometimes the afflicted person raises the matter; that's courageous.)

When you broach the topic, the first thing you'll notice is denial. No, I can see fine, I'm just tired. I don't need a hand, the bus is lurching. My mother says I've always been forgetful. The healthier partner must take the first step of tough love: a calm observation of facts. And if the afflicted partner wonders, Where is this going? that recitation of evidence can sound like the first step to relationship breakdown.

When a couple has adult children, they can help by providing more evidence, but, and I can't stress this enough, the evidence must be coupled with the reassurance that there are supportive devices and accommodations. If not, such stark and disruptive loss is too much to bear.  For Le Duc, we knew what would help—hearing aids—and eventually he accepted them.

There are assists for all disabilities, but they rarely return full function. So, after denial comes grieving for the time when the partner didn't need anything—and both partners grieve. The grief of the afflicted partner is especially keen: the awareness that she is always going to have a pacemaker, that she needs medication or therapy (perhaps not covered by insurance), or that this might be as good as it gets, sends even the most resilient person into a spin.

In some cases, disability results from an acute illness. Rachel survived late-stage cancer, but has lingering effects from treatment. For a year after she was cleared, she felt flat and disembodied.  When people told her how lucky she was, she agreed politely but didn't share their elation. Only friends who had lived though similar ordeals knew that getting your life back does not mean you get the same life back.

What do you do, when you have a partner who was hale and is now halt, who was vital and is now brought low? What if you were cheerfully planning adventures that must now be postponed? It's facile to say, Well, you deal with it.

The able partner is now in a metaphoric sack race, tied to the disabled partner, becoming his or her ears, eyes or limbs, as best we can.

When disability happens after years together, we enter the situation handicapped ourselves, lulled by decades of a beloved bounding out of bed, portaging a canoe, or singing all twenty verses of an obscure English folk ballad. Now we must redistribute daily chores, make sure assistance is discreetly available, and create a social life that evokes enjoyment rather than frustration. We decline some invitations, and participate with enthusiasm in those that suit Le Duc's needs; I sometimes go alone.

Parents of disabled children have immeasurable wisdom to offer; they've been at it longer, figuring out how to make the best life possible for the child they love. And if they have any energy left, they are busy advocating for better care, more resources, for research to cure these conditions.

These parents say one thing repeatedly: give the person credit for managing rather than remembering the way things were. The disabled partner is bound to be blue sometimes, so the other has to stay reasonably centred herself. As the mother of a 37 year old quadraplegic told me recently, "I tell her, the best 'assistive device' she has is between her ears." 

Her remark reminded me of Betty, a work colleague who got around in a wheelchair. A group of girlfriends would take her drinking after work on Fridays; we found a pub with good, wide doors on the bathroom stalls. One evening, toward the end of our enthusiastic Happy Hour par-tay, we hit the loo before heading out. We got her jeans down and were easing her onto the toilet, but dropped her at the crucial moment. Betty whooped as we wiped our shoes. "You guys", she said, "are in way worse shape than I am!"

The door swung open and a strange woman looked at us, helpless with laughter, and said, "Having fun, ladies?"

We were.





17 comments

Margie from Toronto said...

WOW! So much to think about regarding this post. I live alone so don't have a partner to consider but - I do notice the changes in myself and friends and how we must all make adjustments - and how some of us are better at this than others - it is a real challenge.
I have RA, Fibromyalgia and need two knee replacements so I have definitely slowed down - and I have to plan ahead much more - and sometimes I have to accept that a particular activity is no longer possible - it's frustrating for me and for others but we all have to accept these changes at some point in time.
But at the same time I don't think we should wallow in them - like your friend in the wheelchair - you've got to keep laughing! I saw my dad's frustrations when he developed Parkinson's and the frustration of my stepmom - both justified. I always tried to allow him his dignity and asked rather than just assumed. But it's tricky - even with my own limitations I find myself impatient at times with others who don't move fast enough and get in my way - ridiculous really but just human I'm afraid.
I think the toughest thing for me is dealing with those who do "wallow" - some friends almost seem to see it as a competition - who can be in the most pain - who is taking the most meds - who has the most doctors' appointments! I come from the Stoic end of things - "don't complain - just deal" so, while I try to be sympathetic, in some cases I find that I'm really limiting my time with certain individuals just because of this issue. Any tips on dealing with this part of the equation?

Duchesse said...

Margie: I should probably address this as a post, and I will, but in short, it is very easy for people to collude. You see it also in the workplace that develops a culture of whining about what's not right. People lose, or seriously impair, their sense of agency. Illness makes people feel vulnerable, and they can take a certain support from "everybody's going through it". But they can lose sight of the opposite side of the coin, that continual complaints wear others, and also their own spirit, down.

Take the breaks you need. If you have a practice that opens your heart so that you can summon compassion in the times you are with those friends, do that. But also, permit yourself breaks and the distance, it's better than sitting there feeling fed up. More to come very soon, thanks so much for the question.

Mardel said...

A thoughtful post, and a good reminder that we take too much for granted sometimes, and assume that "fixes" offer more than they do. I need to absorb this post a little more, and might be back later.

Leslie Milligan said...

This is a necessary topic, but hard to respond to. Just so you know that we are soaking it in.

Duchesse said...

Mardel: Now if ever there was a person who would know about this... I would appreciate any insights.

Leslie: Thank you; this subject is meaningful to me and as I look around, I realize it is on so many minds.

Madame Là-bas said...

As we age, this issue takes on greater importance. Marriages and committed relationships are "in sickness and in health". Thank you.

LauraH said...

I admire the insight and wisdom you've shared with us today and look forward to your further thoughts on these difficult topics.

Margie from Toronto said...

Thank you so much Duchesse - I look forward to more posts on this topic - you have obviously struck a real chord with many of us judging by the comments.

21201b3c-f793-11e4-8125-5b05c3c9faec said...

Dear Duchesse, thank you so much for putting this issue into words. I am experiencing some of this with my husband but never considered articulating it. You have given me a stronger platform to work from.

Lynn L said...

Nicely stated and a good reminder for me. I have had a series of surgeries on both right foot and knee and recently found after an excisional biopsy that I am extremely high risk for breast cancer and will need continued treatment. You're so right -- it's still a good life, but not the same life. I have to keep that in mind. It's hard too when long term partner enjoys cross fit and is never, ever sick or injured. He is careful to ask how he can help, and I have to learn to accept that help graciously.

Cat said...

Thanks for this post. I nursed my previous partner through terminal cancer. It was by far the most difficult thing I've ever done.
I am now in a relationship with a man who also lost his partner to illness. We are more sober than we were, more aware of the impermanence of living. I am grateful for every day we have together. And while I'm much more accepting in general, I still feel occasionally cranky at times when he can't hear me. I try to remember that if I'm feeling cranky, chances are I am not taking care of my own needs. Easy to say 'take care of yourself first', hard for many of us to do. But it made me a more compassionate human when I extended compassion to myself for what I'd gone through.

marywyatt said...

Timely,excellent post. There is much to ponder and learn. I agree with all the comments.
marywyatt

Sammye Broline said...

I am the hearing-impaired person. I note the difficulty my problem places on my spouse who would like to attend concerts and theater. He wants to do these things as a couple, as a date night and a shared experience, but I just can't because these are the very things that cause me the most frustration with my handicap. We also can't watch television together...such a simple and companionable thing...we miss the togetherness. Sure, some events can be done alone, and my husband does, but it just isn't the same. The vast majority of the time the hearing impairment is no biggie, but it is definitely socially isolating not just for me but for my partner as well. We're both a bit introverted anyway, so we cope, but I see that this must be truly difficult for those who thrive on lots of social life.

Duchesse said...

Sammye Broline: Thank you so much for commenting. We have come to rely on Netflix (always subtitles) and search out subtitled films showing in theatres But plays, hopeless. And network TV has subtitles.

There is also an online site, OpenSubtitles (among others) that supplies downloadable subtitle files for movies, such as those you watch on DVD.

We are not all that extroverted, either. Having a few friends-versus large groups-over for dinner still works, but one day it may not.

Barbara Schieren said...

Although it's a serious topic it gave me a laughter.
I had an in ear surgery decades ago, followed by decreasing hearing. Now one ear is deaf and I have to compensate everything with the remaining one.
My husband had cataract surgery which was successful. But one eye changed it's ability to read subtitles (not possible to correct it by glasses).
There are plenty of interesting series on Netflix, where dialogues are partly in spanish, japanese etc. and whe can't watch them!
Lately we visited a theater where the actors spoke so low and it was so stressfull to follow the dialogues.
Afterwards I had to compensate with a Mai Tai:-)
So, see our dilemma.
I want to quote Dorothy Parker: "What fresh horror is this?"

Duchesse said...

Barbara Schieren: I wonder if this would work: If your husband can hear, can either just listen, or use headphones to improve the volume, and, since you can read them you read the subtitles. It's not perfect but that way you could watch together. The occasional snippets of dialog in other languages can probably be figured out between you, but I've noticed that some series include those in the subtitles. We have occasionally had to hit "pause" to read these more carefully.

I believe in compensatory Mai Tais, too. Personally I find Parker a drama queen... this is not horror. Horror is my friend's Dad, hit on his bike, severely incapacitated, and unlikely to ever improve.

Barbara Schieren said...

Duchesse, we do watch together.
But husband has to close one eye to read the subtitles and I need a bit more sound level than he does. Unfortunately other glasses wont do nor a hearing aid on my deaf ear. Thinking about this after reading your post, just made me laughing.
Luxury problems.
Alltogether we are glad to be in good condition. Even with a limited budget we dod enjoy of Munich's facilities.

You're right, no horror at all.