Uneven aging: The caregiver-partner

In my first post on uneven aging, I described what is happening among my friends and family in their 50s and 60s: the deterioration in the health of one partner, while the other more or less ticks along. Such unevenness can arise at any age, but as a couple grows older, the healthier partner will not have the energy he or she had decades ago.

Since that post, I have been ever more mindful of this shift, which can happen overnight. (Even friends can experience the situation; however, in a couple, dailiness intensifies the load.)

Marie, in this situation now, is suddenly responsible for all domestic chores while Al, her partner of forty years, goes through chemo. We spoke recently about what she needs. "Casseroles and hugs", she said.

Presently that's difficult, because Al insists she hide the illness from everyone except one friend—me—and I'm not nearby. After seven months of secrecy, Marie is lobbying for openness, so she's not so isolated. Besides, his pals and sisters are growing suspicious about repeated cancellations.

When a crisis hits, stress, uncertainty and fear drain even the hardiest person's energies; I have seen the caregiver exhausted, sometimes looking worse than the patient. Faced with the extra expenses of acute illness,  she may resist paying for help. At my urging, Marie agreed to hire a helper to do part of the house and yard work, and arranged for a grocery delivery service.

The healthier partner also reels as the dynamic of the relationship shifts.  Al's retirement was built around hiking, cycling and skiing with a gang of buddies; Marie had ample time to garden or run her small business. (She and a decorator friend make personalized throw pillows.) She now has a man in a bathrobe, feeling grumpy and nauseous, too weak to leave the house, underfoot all day.

There is no doubt about her love, and she knows Al is equally devoted to her. But caregivers need to vent, and if you are the friend who hears how the sick partner begged for a grilled cheese sandwich and then barely touched it, don't rush in to problem solve, just listen. Maybe drop by with that casserole and give that hug.

I asked caregivers what gestures supported them; here is a list. Please add more if you have ideas.
  • Washed my windows, regularly
  • Took my partner for rides so I could rest or clean up
  • Boarded our dog for a time
  • Lent us a La-Z-Boy so I could sleep near her
  • Sent me a massage therapist
  • Helped me deal with government subsidy application forms
  • Brought me four sets of sheets and a stack of towels
  • Helped me find the right chaplain, because my wife wanted to reconnect to her faith and was unsure she would be welcome
  • Sat with me through the night in the ER
  • Taught me some basics of home care (friend is a nurse) 
  • Edited a professional publication my wife was committed to finishing by the deadline
  • Organized a month of meals dropped off by friends (Note: She said it was equally important to not stay to dine with them.)
  • Visited his parents, to reassure them and give the attention that was now missing
  • Set up a Caring Bridge site so we could update people without answering dozens of calls or e-mails
  • Gave the ill partner "the most wonderful foot rubs"
  • Helped him plan a trip he'd always wanted to make—and would, but now with modifications
A woman whose partner was diagnosed with macular degeneration said, "I can tell you what is not helpful: people playing doctor and sending me links for all kinds of strange remedies." 

The most moving and unusual contribution came from Eliane, who said that her husband and his good friend, a professional carpenter, built his coffin together. Though Josh lived over a year after their project, he wanted to create it while he was able. His friend helped him revive rusty skills and added exquisite inlay.

Whether the partner's illness is acute or chronic, the caregiver's stamina erodes quickly, and when exhaustion sets in, stress amplifies. Marie and her girlfriends shared book club evenings and coffee chats for years, but now she hopes, once they know,  friends can sit with her while she waits for test results for the person she treasures most.

Expressions of love change, and, it's still love.




24 comments

Janice Riggs said...

Important, and lovely.
Thank you, always,
hugs,
Janice

Madame Là-bas said...

You have shared some ideas that will be of benefit to us all at some time. Thank you.

LauraH said...

Many people find it difficult to ask for help so call just to talk, then take it from there. Don't wait for the caregiver to call you. If you're not sure what sort of help to offer, plan something simple like staying in the house with the sick partner so that the caregiver can get out a bit. That can be very welcome and may open up other areas where you might be able to lighten the load.

Great post, better to think about this now than to be at a loss when the situation comes up.

Margie from Toronto said...

Such wonderful and timely information. Thank you.

Grandmaamanda said...

Jan liked everything to be beautifully pressed. I would go over, set up the ironing board, shoo her husband out the door, and iron away. I got lots of quality time with her and the time flew by.
Amanda in TX

hostess of the humble bungalow said...

Those are great ideas and many I would not even have considered...
I hope your friends' husband will tell people soon so they can get some extra support, in the meantime I am sure that she appreciates you "being there" for her.

Melissa Hebbard said...

Thank you for this wonderful post. It is hard to know what to do or say to help a friend through difficult times and this is a very helpful list.

lagatta à montréal said...

The RANQ is an umbrella association of caregivers' groups throughout Québec. The site is in French but there are member groups that are anglophone or bilingual (or multilingual).


http://www.centredesoutienentraidants.com/en/caregiver-recognition-day/

http://ranq.qc.ca/ There is also a Facebook page; the event is in early November.

That is so hard; more opening up would greatly help your carer friend, but at the same kind I can empathize with the caree no longer being seen as a vibrant human being but as a .... (disease) patient. I remember a series of such events during the great AIDS epidemic, and most of those who died were still relatively young.

Bunny said...

Wonderful, wonderful post. Thank you, Duchesse. I am so close to this situation and it feels good hearing these thoughts.

dana said...

Individuals don't get cancer; families get cancer. She has every right to tell her story -- it's hers. And caregiving can go on for years or decades.

Carolyn from Oregon said...

Great suggestions. And amen to the comment about dropping off meals but not staying to dinner. It can be hard for people with whom you usually joyously socialize to realize that socializing over dinner can be exhausting for the caregiver and the patient when you are dealing with a health crisis/recovery situation. I had foot surgery and a concurrent wrist injury last year - I could do almost nothing in the kitchen. After a couple of exhausting evenings with well meaning friends and family, we ended up turning down friends that offered to bring us dinner because I just didn't know how to tell people that a meal would be most welcome but we were not yet able to socialize. In hindsight it seems ridiculous that I couldn't say what I just wrote, but somehow it's more difficult to do when you're weak and recovering.

Duchesse said...

LauraH: Yes, call. Often, the caregiver is told, "If you need anything, just call." But that well-meaning offer puts the onus on the caregiver. I have found that offering a a couple of potential errands works well: "Would you like me to drive Liz to physio? Or if you give me a list, I'll do your grocery shopping, I'm going anyway."

Your thought about simply being there so the caregiver can get out is important... that way he or she has the freedom to get things done or just sit in a park.

Grandmaamanda: Lovely. Noticing what the family might like done is at the heart of it.

lagatta: That is it, he did not want to be seen as an ill person, and in fact until the condition progressed, he had no symptoms so did not see much point in going there till he had to.

dana: I agree with the first part of the sentence, and whether a partner has the "right" to divulge something the ill person deeply wants to keep private is a complex issue. She put his wishes first, and also knew that eventually the news would have to be shared.

Carolyn: People intend to cheer up the patient, and then it's easy to get carried away. Joe's partner put up an online calendar so friends could schedule meal drop offs, and the header said, "Please don't stay to eat with them until Joe's recovered!"

Bunny: I hope the post encourages you to make requests; friends genuinely want to help but don't always know how.

LauraH said...

Just wanted to add...most people really just don't know what to do or say. So I hope your readers act on and share these suggestions, it will be so helpful to everyone concerned. Thanks again for this post.

Duchesse said...

LauraH: Your comment reminds me of an acquaintance who was visiting a friend with a chronic illness; she was able to enjoy visitors but was housebound. A mutual friend said, "Send her my love."

The acquaintance lost her temper and said, "You think that's enough, really? If you 'love' her, why don't you see her yourself?" And I thought, she has a point there. Some people offer tepid support. Sometimes there's a reason (and I asked if her friend might have one) and she said, "No, she just isn't making any effort."



Araminta said...

Such a pertinent topic. Thank you for revisiting it and offering such excellent suggestions.
It is so easy for the care-giving partner to become overwhelmed. I had a much-admired colleague who cared for his rather older partner, who had dementia, for several years. In the end it just wore him out and he died before she did. Anything that a friend can do to give a carer a short break is SO helpful.
In a different context, some years ago when I was going through a difficult time a friend on the other side of the Atlantic sent me an e-mail message every single day so that when I opened my email in the morning there was a thoughtful message to greet me. I found it very heartening.

Duchesse said...

Araminta: Thank you; this occasional series of posts that may turn into a book, for it is far more meaningful to me than what a person wears. And thank you for reminding us it is not just physical distress that benefits from warmth and caring.

Julie said...

One of the most relevant posts I've read. Thank you.

SewingLibrarian said...

Two comments: When my husband's aunt was dying, her daughter asked people to send cards regularly. We lived too far away to visit, but I sent a card at least once a week. Daughter said that it gave her something to show her mother and discuss with her during the long hours they spent together at the care facility. Even talking about the picture on the card was helpful, I was told, but I usually included some simple comments about our children and their activities, and so on. I felt it was a contribution we could make even though we couldn't be there in person. Second, when my mother was dying, my brothers and I found CaringBridge to be quite helpful in letting people know what was going on without doing a lot of emailing. Although I was able to visit my mother for a week during the month she was ill, I was the child who wrote the CaringBridge entries because it was something I could do from a distance while my brothers were on the scene doing the consultations with doctors, etc.

lagatta à montréal said...

A friend of mine, who is 82 or 83 and who now lives in a lovely spot in the Laurentians north of Montréal, has just had a stroke, a couple of days ago. He is in hospital up there, and friends have been to visit him. He seems to be doing "ok" but it is very worrying. Earlier, we had discussed him moving from his large, pleasant but rather inaccessible abode to assisted living near us in Montréal, and I found a place that appealed to him.

I do hope that an amenable situation will be found; most of us are unable to visit him up there on a regular basis. But it depends on him.

Mardel said...

Thank you for this post.

Duchesse said...

lagatta: I know a number of persons in their 50s, 60s and 70s, some living alone, others not, who have moved from rural homes to, if not the city, closer to a full-service hospital or other services. One acquaintance's partner had a heart attack and was over 30 miles from an ER and of course no ambulance/EMTs. That brought home the situation and she has put the house up for sale.

You are a good friend for scouting places.

Wendy said...

Thank you for this post. The clear, practical ideas of how to help are wonderful.
I hope you will pursue your idea of turning these posts into a book, it's a good one.

diverchic said...

This is a brilliant post with great suggestions.
When the husband of a close friend became ill with Lewy body I made the decision that I would look after her, not him. She had hired help to spell her off. Over the course of three years I spent about 12 hours a week helping her stay sane, feeding her (and him) and fending off feuding relatives for her. She insisted on keeping him at home and would not have been able to do it without my help. She was heroic and I was in awe. Also appalled at the extent of the sacrifices she made to keep him there. I felt privileged.

Duchesse said...

diverchic: I remember how at times that three years of giving exhausted you, too- but you kept at it all that time, and also after he died. A model of caring.