In all likelihood, my husband of 25 years will not live to see the inauguration of the next president. When he was diagnosed last June with an aggressive, incurable form of brain cancer called glioblastoma, doctors gave us the devastating news that the average life span for someone with this disease was 12 to 14 months and that Jonathan probably would not live beyond 2016.
In some ways, we have been lucky: Even as Jonathan has become physically incapacitated, he remains cognitively present, unlike many people with brain cancer. He has an active connection with the world by phone and computer. (He wrote a moving account of his illness not long ago in The Post.) But he can't walk or work. Once a vital athlete and hiker, he can no longer even make himself a sandwich. Jonathan's world has been largely reduced to the confines of a recliner in our family room. So it is left to me to be his constant caretaker, getting him up and helping him wash and get dressed in the morning and getting him to bed each night. I manage his many appointments and medications. I ensure that he has healthy meals and that he has everything he needs close by at all times. I also must monitor his every move, because he could fall at any time.
While pain-free and essentially optimistic, Jonathan now has a quality of life that can only be described as poor. And so, truthfully, is mine. The fact that he is incapable of leaving the house and enjoying a movie or a walk in the park means that I no longer can do these things, either. Like other “well-spouse” caretakers, I am a victim, too, of his illness.
The path of someone with a critical illness is familiar: symptoms, diagnosis, illness, treatment. The well-spouse’s life is less familiar. In her book “Mainstay,” Maggie Strong, a founder of the Well Spouse Association, describes the phases typically encountered:
First is the Heroic Phase: This is where I started. In this phase, you’d do almost anything to help your spouse. You read everything, get second opinions, churn night and day to find your way to a cure. You believe you have superpowers to fix everything.
In my case, after Jonathan collapsed in June 2015 because of what was then quickly diagnosed as glioblastoma, I spent 12 to 15 hours a day in the hospital with him, not knowing if he would live or die, tracking down doctors, nurses, techs, anyone who could help us get what we needed. None of them seemed to communicate with each other, and I became the fulcrum through which all of the information relating to Jonathan’s many issues flowed. Life was a chaotic and terrifying blur.
Once he was home, in July, the real work began. Jonathan was on multiple medications, each of which had a complicated dosage schedule. He was unsteady and had to sleep in a chair. Eventually, he made it up the stairs and could sleep in our bed, although without me because the space was filled with his illness gear.
It seemed that a new health crisis emerged every week: painful blood clots, sudden drops in blood pressure, brain swelling, dizziness, falls and medication side effects that led to diabetes and sleep apnea. Pretty soon, I was overwhelmed from the work I had to do to keep up with Jonathan’s needs, let alone our children’s or my own.
And I was stressed about trying to balance work and caretaking, drained from never having a break. I started to spiral down mentally. Friends were worried; they gave me a respite, taking care of Jonathan for several days while I was on a work trip.
I enjoyed being away, but it didn’t help my depression or change the fact that this was now my life. Every morning felt like a bad version of the movie “Groundhog Day” as the alarm rang, and I woke to the same script, wishing the day was already over and that I was back in bed.
Losing control
I felt as if I had lost control of every aspect of my life and the things I love. I could no longer go to the grocery store without planning for care at home, let alone travel for work or pleasure. I couldn’t even read a book, as I was always too much on alert in case Jonathan needed immediate assistance. Even Jonathan’s oncologist noticed that I was burning out on caregiving
This phase is exhausting, and I soon moved on to what Strong calls the Ambivalence Phase. You love your spouse and cherish every minute he is still alive. On the other hand, you hate most things about your new role as a permanent caregiver, and you feel trapped. Emotionally, this is a very tough time. Financial concerns are pressing. You are exhausted, physically and mentally. Intimacy is gone, and your partner is now your patient. You feel very alone. Not all well spouses wind up in the Ambivalence Stage, or stay in it as long as I did: five months of constant stress, pressure and sadness that felt much, much longer.
I had essentially become the family’s wage earner, although Jonathan’s employer provided generous disability pay. With everything going on at home, it was hard for me to focus on work. I went to a therapist, who strongly recommended an antidepressant, which helped once it kicked in. More important, I found a home aide for Jonathan, which allowed me to return to work — and to the world.
I had entered the phase that Strong calls the New Normal.
Our new normal
This is when, if you can afford it, you recognize that you can no longer rely solely on family and friends for support, and you get paid help to give you time to work and address a bit of your own needs, physical and emotional. You are calmer. In my case, the antidepressant helped, but I also had begun to accept my new reality. Jonathan’s medical condition had become more settled, and tending to his medical and social needs had become familiar and routinized. We could laugh together again — even indulging in dark humor — and could focus on enjoying some time together.
The New Normal doesn’t mean I’m not sad. We all are. But we have a system in place to deal with Jonathan’s minute-by-minute needs. Although his prognosis was an enormous shock, it brought us closer as we talked about our values, our priorities and ensuring the future for our family without him. We have been honest and open with our three children, who are 20, 17 and 14 years old, and we don’t dance around the central fact of our lives: that he will not be here with us for an extended time.
I can’t pretend I know what it’s like to sit in a chair for months on end, contemplating one’s mortality, but Jonathan’s mood has been upbeat, and that has been a gift. But I do know what it’s like to have been thrust into a situation where you are now simultaneously a spouse, mother and full-time employee, as well as an advocate, companion and full-time caregiver.
At the beginning of the year, President Obama announced a “moonshot” to find a cure for cancer. I hope that effort begins to make a difference soon, sparing people like my husband from these terrible diagnoses. But in the desperate race for cancer cures, I also hope that doctors, politicians and scientists will remember to look to the dark side of that moon — where the caregivers live — and find a way to ease their journey.
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