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
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.