Essay: What I Learned as a Caregiver: A Memoir

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This story doesn’t have a happy ending. Its heroine is my late wife, Jane. I was privileged to live with her for 29 years. She was ill for the final nine of those years, and I was her principal at-home caregiver. 

Jane’s struggle with metastatic breast cancer and her upbeat attitude became the subject of newspaper and television stories. In her public comments, she tried to offer hope to people with debilitating or chronic illnesses. But in her last months, her focus turned inward: She worried about the effect her illness was having on our then-20-year-old daughter, Jessica, and me. She wanted the battle to end&emdash;for her and for us. At her request, we stopped her treatment regimen on a Friday. She died the following Wednesday. 

I’m writing this very subjective essay on some things I learned as a caregiver because, a few months before she died, Jane asked me to. At the time, I couldn’t bear the thought that someday, not long from then, I’d be sitting down to write about her in the past tense. I still can’t bear it, but I’m doing it. A promise is a promise.

Proximity and Convenience

From the standpoint of convenience, Jane and I had some extraordinary advantages&emdash;though, under the circumstances, it would be a stretch to say we felt lucky. For 23 years, I’ve worked out of an office in my home as a writer and consultant, which allowed me to care for her on a round-the-clock basis when necessary and to drive her to nearly every one of her medical appointments, treatments, tests, hospitalizations and procedures. Also, our home in East Sacramento is only one mile from the Sutter Cancer Center, the Sutter General Hospital emergency room and various diagnostic facilities, where we were regular customers.

Convenience can sometimes be a mixed blessing, though. As Jane’s needs intensified, I found it close to impossible, in terms of proximity and devotion, to take a break of more than two or three hours at a time&emdash;when Jane’s many pals would come by with lunch and hope or when Jessica was home from school.

In hindsight, however, I see that my availability might have made Jane overly dependent on me and therefore less willing or able to rev up her own interior resources when she felt pain, sadness, isolation and fear, which happened far more often than her friends or her doctors realized. To them, she remained almost absurdly cheerful&emdash;and almost to the end.

Jessica and I saw things a little differently. It puzzled us when Jane could take a phone call from a friend and summon up her strong, lighthearted voice&emdash;she had a smile you could actually hear&emdash;then hang up and sound frail and needy with us. We also succumbed to occasional bouts of vanity, wondering why Jane sometimes credited everyone else but us for her sense of well-being.

The answers were obvious. We comprised Jane’s comfort zone. With us, she didn’t need (nor have the strength) to pretend. And if she took us for granted sometimes, it was our own fault: We had spent a considerable amount of time convincing her she should and could. We didn’t want her to start saying thank you at 5 a.m. and finish after midnight, which was how long some of the rougher days ran. When you love someone unconditionally, you’re not in it for the applause.

Don’t Rule Out the Future

Here are some other things I learned:

Death didn’t take a holiday.

Neither did other catastrophes, just because I was doing the right thing. During the final year I cared for Jane, my mother died, Jane and I were in an accident that totaled one of our cars, and the house flooded twice within two weeks from different causes. Two years into Jane’s illness, one of my brothers died, and two years before Jane passed away, our cherished family dog needed to be euthanized. But here’s the point: While my brother’s death was very premature, owing to a contaminated transfusion he received, my mother was 88 years old, and our dog was older than 14, when they died. A few friends and relatives mused that my daughter and I might be tragedy-prone. Not so. We were life-prone. Horrible things can simply happen&emdash;sometimes one after the other.

Living in the moment made sense&emdash;but we didn’t rule out the future.
From early on, Jane’s prognosis was discouraging. But we discussed that only once. After that, we concentrated on what seemed possible and achievable in the near future, which stretched into nine difficult but fulfilling years. Jane threw herself into her art&emdash;painting, jewelry design and sculpture&emdash;and I helped to make sure she always had a show or just a goal, like completing a series of paintings, that she was working toward. Perhaps because she never stopped being the TV reporter she’d once been&emdash;and because she was always aware of her own looming deadline&emdash;she thrived and produced under pressure. Doing so gave her purpose and determination, and I remain convinced that having objectives, and doing something to attain them, could help anyone cope with a chronic illness.

Illness was no time to be reclusive.

Once Jane’s strength and mobility were compromised, she began to reach out, inviting the same people with whom she’d gone out to lunch for many years to bring lunch to her. This was far more challenging for her than it appeared since, former media personality and flashy dresser that she was, she was surprisingly shy. But with some encouragement, she started working the phones, as they say in political circles. These lunches also gave me brief respites that allowed me to visit my clients and conduct my magazine interviews. And breathe.

One can only censor so much.
Throughout all of this, I found myself changing the topic of dinner-party conversations, misplacing newspaper and magazine stories, previewing DVDs and changing TV stations whenever the subject matter touched on illness or death. (It always does, of course.) The most manic example of this occurred when former Beatle Paul McCartney’s first wife, Linda, died from breast cancer. It made the front page of almost every newspaper. We were staying for a few days at a house we owned in Capitola, and I arose early that morning to take a walk and bring back breakfast stuff. When I saw the headline about McCartney, I went on a tear, buying or stealing every newspaper from every rack that we’d pass on our route to lunch a little later. I didn’t think I could hide the news from Jane, just delay it. But the minute we walked out our front door, our next-door neighbor&emdash;never famed for her sensitivity&emdash;shouted, Did you hear about Linda McCartney?! In retrospect, I realize that some of my attempts at being Jane’s personal Cato were futile endeavors. We lived in the real world; we had to be prepared for, and toughened to, its indifference.

Disease may confine, but needn’t define, someone.
Somewhere along the line, Jane’s generosity had made her a local poster child for her disease. She fielded calls from other patients, who’d been referred to her by their (or Jane’s) well-meaning friends. One night, though, after she ended one such call, she softly began to cry. That’s when I suggested she start closing down the sympathy store she’d opened. She had ceased to be, for several months, a full-time artist and had become, instead, a full-time cancer patient. I babbled on about how cancer was something she had, not someone she was. But the message sank in. And it strikes me that too many people I know or have known, who suffer from chronic illness or worse, are allowed to forget that before this terrible thing happened to them, they were individuals&emdash;and that they still are.

Nobody knows exactly what to say or do when someone is sick or someone has passed away&emdash;but everybody says and does it anyway.
Take that neighbor of mine in Capitola. Or how about the prominent woman in this town&emdash;a cancer survivor herself&emdash;who, when I told her Jane had died, bellowed (her normal tone of voice), You’re kidding! Then there’s the friend who used to come by every so often and whine to Jane about her own, largely illusory, infirmities. Or the woman who came to our house to visit after Jane’s mastectomy wearing an extremely low-cut blouse. Or the person who sent me a condolence card in which (a) she apologized for not writing sooner, owing to her having been out of the country when Jane died (she wasn’t); and (b) claimed she had kept in touch with Janie by e-mail for years and years. (Actually, she sent just one e-mail; I had the regrettable task of going through Jane’s e-mails after her death to make sure I’d notified all of her friends and family of her passing.) The thing I came to realize was that nobody really meant any harm. They simply felt uncomfortable or foolish or, in more than one case, afraid of being around a very ill person.

Caregivers are advice magnets.

A couple of Jane’s devoted friends couldn’t resist giving me a few words of advice on caregiving every time they came by&emdash;mainly of the do things to keep her spirits up variety. Others were convinced Jane could be cured with certain herbs or green tea&emdash;which may or may not be useful preventatives but haven’t exactly hit panacea status&emdash;and e-mailed or dropped off information (which Jane’s doctors and I had discussed months earlier) on a regular basis. Nearly everyone said, Take some time for yourself, Ed and more than a few offered variations on the essential sentiment that I looked like hell. My point is that it was all, in one form or another, good advice. But I’d be lying if I said it never got under my skin. I guess when you care for someone whom others love, too, constant advice just seems to come with the territory, so get used to it.

Limitations aren’t condemnations.
By the time Jane’s illness began to grow dire, manifesting itself in a number of dignity-reducing ways, Jessica and I already had been tested on just how much we were able to withstand as caregivers. Jane’s illness had never been neat and clean&emdash;or even just momentarily gritty, as these things are portrayed on TV hospital shows until they cut to the next commercial break. (Question: Why does anyone in his or her right mind willingly watch these shows?) For some reason, we were able to deal with most of the problems, even when they were admittedly stomach-churning ones. But some caregivers can’t do that, or don’t think they can. (None of us wants to, that’s for certain.) And it’s nothing to be ashamed of. The key is for amateur caregivers to know what they’re capable of and what they simply can’t handle&emdash;and to find people who can fill in the blanks.

Get out! Stay in!
Both of those sentiments apply. When someone is ill, they can feel imprisoned. (Jane felt, especially toward the end, that she was in the film Groundhog Day, in which the protagonist is forced to relive the same day over and over.) So out we went, whenever possible&emdash;to lunch, to the park, to the store, to an art gallery. On the other hand, going out can be dreadfully tiring for someone who doesn’t feel well. So we took advantage of our home, opening all of the curtains in the daytime, inviting people in, watching (carefully previewed) movies almost every evening. When Jessica was home from school, we ate dinner and shared stories as long as we felt like: The only agenda was to enjoy every moment, not think about schedules.

Congratulations: You are now a medication dispenser.
While Jane was responsible about taking her myriad medications on schedule, her condition eventually made it necessary for me (and Jessica, and sometimes our friends) to keep track. I drew up little daily charts for her that she could keep in her purse or at her bedside. It wasn’t foolproof&emdash;nine years is a long time to never miss or mess up a dosage&emdash;but it isn’t foolproof in hospitals, either.

Keep every important phone number everywhere.
We had them posted in the kitchen, folded in our wallets and, of course, taped to or next to every telephone (they were also on each phone’s speed dial) and tacked on the wall of each bathroom.

Listen.
Much of what I do for a living involves listening. That gave me a head start when I began to accompany Jane to her appointments and treatments. But there was a vast difference between listening to a client or interviewee, which had to do with accuracy, and listening to a doctor, nurse or pharmacist, which was literally a life-and-death issue. Despite her own formidable skills as an interviewer, Jane wasn’t always capable of registering what was being told to her, though she took copious notes (as did I). Sometimes this meant she missed a vital piece of information (like the risks of a new treatment or medication); but the surprising moments were when her compassionate and fiercely intelligent oncologist&emdash;Dr. Robert Miller of the Sacramento Center for Hematology and Medical Oncology&emdash;actually gave Jane encouraging news and she somehow didn’t comprehend it until I repeated it a little later. Listening was also the most frequently required task for me at home. Since Jane was not a complainer, when she did describe a pain or discomfort, I took her very seriously. Over time, as her condition declined and she talked more about her malaise&emdash;descriptively, not whiningly&emdash;I learned to differentiate what was an immediate concern that I should act on and what simply demanded that I shut up and let her talk. (It didn’t hurt that she had a wonderfully expressive voice.)

Anyway, these are some of the things I learned in caring for Jane. But I can’t end this without acknowledging&emdash;with love, respect and eternal friendship&emdash;the devotion of our daughter. She dealt bravely, resourcefully and wisely with Jane’s illness since the fragile age of 12. Jessie turned 21 on March 30, two months after her mom’s death, and graduated from UC Berkeley, in just three years, in May. To say Jane would have been proud would be a vapid understatement. So I’ll just assume, from what I’ve shared, that you know it as well as I do.