Rolling And Strolling

By Alice Ayers

Alice Ayers (a pseudonym) writes about being a caregiver of her partner, who was diagnosed with breast cancer at age 41, had a local recurrence three years later, and then was diagnosed with ALS, commonly known as Lou Gehrig’s Disease. The lessons she learned about caregiving in those years were many.

It’s probably true that nobody signs up for being a caregiver. Maybe parents, when they have children. But certainly not kids, and probably not life partners. For partners, it just isn’t what we are thinking about when we get together (unless one of us is already ill). But, really, what do we think will happen as we get older? With age often comes infirmity.

A friend told me that her father died when he was 57 and her mother never got involved with anyone else. The reason: she didn’t want to be a caregiver again. It was too hard.

Of course, some of us get to do it twice – or more – with the same partner. My partner was diagnosed with breast cancer at the age of 41 and had a local recurrence three years later. Almost 20 years after that she was diagnosed with ALS, commonly known in the United States as Lou Gehrig’s Disease. She died of ALS within three years of her diagnosis.

From these episodes, there are things I learned about being a caregiver.

Most importantly, it isn’t about you. The caregiver is not the person who is ill, who has to face his or her mortality head on. As caregivers, we get to stay in the dream of infinite existence, as most others do, until we realize that our lives might end sooner than we think. As my partner’s disease progressed, it was hard enough for me to confront the precipitous change in her and, therefore, in our relationship. But it was important to remember that I didn’t have cancer, I didn’t have ALS, I wasn’t the center of this event. My job as caregiver and partner was to be as helpful and supportive as I could be. And, to that end…

Eternal vigilance is necessary – but not sufficient. I always tried to be attentive to my partner’s physical, emotional, and social needs. But there were events and circumstances I couldn’t anticipate. I came to see our life as sort of a soccer game: the goalie, in full possession of the ball, kicks it downfield and may have a plan, but has no real control over what’s going to happen once it gets there. If a person’s disease is untreatable or fatal, you’re never going to get the best of it, no matter what you do. Which leads me to…

Feelings of inadequacy can be endless. On any given day things can go wrong, and we can’t do anything about them – or we can, but we don’t know it. One day, a person who promised my partner would have lunch during chemotherapy didn’t show up. Another day, a caregiver’s key suddenly didn’t work, so she couldn’t enter our house while I was away, leaving my partner – who, by that time, was not fully ambulatory – stranded in bed. The feeding tube clogged, and she was unable to take in nutrition. Who knew that the first line of attack at the emergency room would be to force Coca Cola into the tube? I didn’t. To cope with these and other episodes, another lesson…

Always have a backup plan. A spare house key, a neighbor to call, some Coke in the fridge. I suppose I should have learned this when my partner was diagnosed with cancer the first time. A good friend, upon hearing about her diagnosis and knowing it’s important to take care of the caregivers too, promptly invited me to lunch – and forgot her wallet. (We’re still good friends.) Most of attention to backup plans, though, was oriented toward assuring that my partner was in good hands, even when they weren’t mine.

Returning to the Idea of “It Isn’t About You”

WomanWaitingOnCouch copyNo, it wasn’t about me. But I was forced to figure out who I was in relationship with a person I loved who had no time or energy for wondering how I was doing or what I needed – at least, that’s how it seemed. Other caregivers for seriously ill partners have echoed this observation: their partners had become highly self-absorbed, and we all had to adjust to this new dynamic in our relationships.

My partner dealt with the business of getting through the day or confronting mortality, a completely absorbing endeavor, leaving me, the caregiver, to take care of all the mundane matters like keeping the household going, getting food to the table (including shopping for it), getting the kitchen cleaned up after meals, paying the bills, doing the laundry, getting the washing machine repaired, and all the other activities of everyday life. I had to face the possibility that my partner would reevaluate her life, priorities, and goals, and I wouldn’t even be included in them.

I’ve seen many cancer patients go through a period following the end of treatment in which they want to do everything now. They have become acutely aware that their lives are finite, and they just can’t afford to defer the pursuit of things they always wanted to do. In their new attention to setting priorities, they might end a relationship with a caregiving partner, either explicitly or implicitly; if implicitly, maybe the physical presence doesn’t end, but the emotional presence/involvement may be radically changed.

In the aftermath, the caregiver’s relationship is with a new person. Maybe that person has found a new passion and needs to change careers (or not have a career at all). Maybe treatment has destroyed libido, and the future holds little promise of ongoing sexual intimacy. The caregiver is left to figure out whether this new person is one she wants to be in a relationship with, and whether the character of that relationship is one in which she wants to spend the rest of her life. All of which means that a caregiver needs to have a solid sense of self, to know what her goals and priorities are, and whether they can be met in this “new relationship.”

The Line Between Taking Care and Taking Over

While the situation might suggest otherwise, the person being cared for – if he or she is an adult – is unlikely to have lost all ability to make decisions. In my case, I was fortunate that my partner was a “take charge” kind of person who took the initiative to conduct a thorough investigation of her disease, from pathologies to treatments to prognoses associated with those treatments, so I didn’t have to do that. When I opined that it would be good to have someone come to be sure she had nutrition during the day while she was in chemotherapy and I was working, she organized a network of friends to do that. She arranged rides to chemotherapy and radiation appointments. She did not, however, insist on emptying her drains after her mastectomy. I found in myself the ability to overcome my weak stomach to do that.

When diagnosed with ALS many years later, there wasn’t much to investigate about treatment because the options were few. My partner still found whatever there was to find. More importantly, perhaps, I left to her all the things she was still able to do each day: as long as she could, she got her own meals (including taking nutrition through a feeding tube when she could no longer swallow), maintained personal hygiene (including cleaning the area around the feeding tube), kept her social calendar, took a weekly yoga lesson and Pilates lesson, read the newspaper, did the crossword puzzle, and pursued a path of spiritual inquiry. She found the energy and ability to write perspectives (personal observation/opinion pieces) for our local public radio station and work on writing a book.

What was left for me, then? To think about things that could help her maintain her level of activity: slip-on shoes so she wouldn’t have to tie laces, pull-on pants so she wouldn’t have to deal with zippers or buttons, a “thing picker-upper” so she wouldn’t have to bend to find things she dropped, mitten clips to keep her handkerchief clipped to her clothing so it wouldn’t fall to the floor, a head support when her neck weakened, a toilet safety frame when she could no longer stand up from a seated position. And, throughout, initiating what we might think of as extracurricular activities, including excursions out of the house, whether in the neighborhood, the park, or beyond. We called it “rolling and strolling”: she in her motorized wheelchair, and I trailing along or hurrying to keep up.

Park Walk negspace-00027Another part of figuring out who I was: understanding that I shouldn’t take personally whatever stresses and strains arose between my partner and me. I quickly understood that I would never – until, perhaps, I face the same situation – understand the dimensions of what she had to confront every minute of every day, either during cancer or during ALS.

Learning How to Maintain Your Identity

As I attempted to figure out who I was I realized that I needed to continue doing activities that were not centered on my partner. During cancer, it was work; during ALS, it was going to the gym every morning, to my volunteer “job” a couple of days a week, and to the college classes that I had begun prior to the diagnosis, as well as socializing with friends over walks, coffee, or meals out. A friend suggested that we audit classes at a local university. When I said I couldn’t add that to my list of activities, we agreed that she would audit the class, I would do the reading, and we would meet every week to discuss. We haven’t “taken” a class lately, but we still meet almost every week.

Gratitude became a keenly tangible part of my consciousness. Gratitude for the people who took care of my partner – friends, home health care aides, hospice staff and volunteers – and those who took care of me. The latter includes my partner, who understood that I would live on after her, and wanted me to maintain my social network so I wouldn’t be alone at sea when she was suddenly gone.

It’s not easy to regain connection to your emotions. My strategy for being a caregiver to a partner who had a life-threatening and, later, a life-ending illness was to treat the entire duration of the illness as a project, recognizing that I’d have time for emotion later. Finding out when “later” begins has been a huge effort – finally precipitated by writing this piece – at least as big as the effort required to dispose of the last items of her clothing, reorganize the shared files, take possession of her desk at home, and attend to the other details of everyday living that distinguish a person who lives alone from one who lives with a partner of many years.

At some point, it’s important to resurface, reconnect, and reciprocate. For me, it wasn’t only the relationship between caregiver and patient that evolved: beyond that, my relationship with the people who took care of me – my real-life social network of friends and acquaintances who kept an eye on my partner and on me, who took me to coffee or lunch or dinner or out for a walk, who brought food and did a million other nurturing things – took on a different character during my partner’s illnesses. In the last few months, more than two years after her passing, I’ve finally become aware that I need to consider whether I’ve allowed that new character (of being cared for) persist, and, if I have, to make a conscious effort to become a fully-reciprocating member of society once again.

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