Only Child Caregiver
I am one among millions of statistically likely only-child caregivers working on my own to provide care within the caregiving community. While not every child, even one with siblings, can or will opt to take on caregiving responsibilities, an only child is clearly center stage and will be the one performing a solo act of care as son or daughter when a parent enters this stage of need.
My 63-year-old mother was diagnosed with stage 4, endometrial cancer, which has a 15% survival rate after 5 years. Only a little over a year before this happened out of the blue, I had moved with my spouse to Portland, Oregon, to bolster my academic career after living in Minnesota for 20 years. I was 44 years old and had planned to continue my professional growth like so many mid-career, professional women. That was the plan.
“We can settle in now,” I said to my husband one day after a particularly good stretch of settling into my new job. Shortly after I spoke those words, I got the phone call from New Mexico from Mom and Dad. “I have cancer … and it’s worse than they thought,” Mom said. I dropped down to the carpet as I watched my well-laid plans swept out by the riptide of this disease. I was wearing my work clothes and was headed out the door for another day in my career, which had seemed ordinary a few minutes before the phone rang. I turned to my husband with tears in my eyes and uttered quietly, “I think our lives have changed permanently.” I was immediately a caregiver at age 44 with no sense of where all this was supposed to fit into my world or how I would be able to help out.
I was fortunate to have been on the job just long enough—over a year and past my 6-month probationary period—to qualify for the FMLA (Federal Medical Leave Act) benefits. However, with a case of metastatic cancer, it was soon obvious, living 1400 miles away from my parents, that even the FMLA time (up to 12 weeks per year, mostly unpaid but with job protection) and pouring money into plane fares was not enough to support my parents from across the country. However, I desperately wanted to keep my job amidst the increasingly evident—that Mom was not going to survive this disease. I was in turmoil, and my priority was Mom even as I knew I could not let go of a very hard-to-come-by job in my field.
For the first 2 years after her diagnosis, I patched together intermittent FMLA leave and was exhausted. We had never fully settled into our house in Oregon and ended up living part-time in Oregon and New Mexico to make this bridge between career and caregiver. When it became obvious Mom’s cancer was slow-moving, yet still incurable, I had to ask my workplace for even more help or flexible work arrangements for me. I was afraid and vulnerable. Many caregivers have to give up employment all together. Instead my colleagues supported me by offering a year of personal leave, but which was unpaid and included a loss of my own benefits. All our available time, money, and personal resources went to Mom’s care.
During this full year of personal leave (and Mom’s third year with cancer) Mom experienced more hospitalizations, emergencies, palliative therapy and treatment needs, and decreasing mobility, and she began to require significant levels and increasing hours of specialized care. When that year ended with more uncertainty still ahead, I had to ask again for more help from my workplace as I was due to return back to work full time just when Mom’s situation was declining further. Ironically by then I had also lost my eligibility for FMLA benefits due to my year of leave. I asked this time whether or not they would support me to come back half-time on a flexible schedule, which is an AARP “best practice” for employers of caregivers and to continue to job share my position with my colleague who was filling in for me. At the last minute, I got a call with the words from my supervisor, a compassionate advocate for me amidst the challenges this brought them: “Yes, we will support you.” I could breathe for a moment.
Even at half time, I still flew back and forth that next year between Oregon and New Mexico about every two weeks or as needed. I was chronically exhausted. Mom’s disease had raged onward and left her in a wheelchair, and caregiving was becoming a 24/7 job for Dad even with my help. Medicare does not pay for long-term or in-home health care, and we personally could not afford the nearly $500 per day ($20 per hour) out-of-pocket rates to pay an in-home caregiver. This year of half-time work passed, too, as well with Mom still in decline and as I was negotiating with work again to continue my flexible arrangement for a bit longer, Mom ended up in the hospital with hospice finally entering the picture after another dire emergency. I could not even let Mom and Dad know the difficulties with my work situation as I made phone calls in the hospital hallways with my office and with HR who were all trying to navigate this amorphous disease process within the rules of employment law and institutional policies. I was sure I was doomed to lose my career after all this, and I was going to be jobless and also without a Mom. How much worse could it get? I was an only child, and there was no one else to help us. Mom was dying clearly now, though with no known timeline, and would I have to resign from my whole career right in her final days?! We (my Dad and I) were a small team now needed full time for a large-team job.
Suddenly during all of this at the hospital and while preparing Mom to head home with hospice, I learned from HR at my work that Oregon has a more supportive version of FMLA leave, and I was eligible! I could not believe my ears. I would get more time ahead with the assurance of still being able to return to my same job. It was enough to get me through these days and hours ahead when Mom was returned to her home and where we spent 24/7 at her side until she died 2 weeks later. Hospice only came out to us a couple of times each week. The rest was on us.
I really do not know how I did all this as I look back at the past 4 years trying to hold together my career and my caregiving roles. However, I do know what other only children will face while the majority of caregivers have larger families who can each take a turn in the caregiver dance. I hope all employers and caregiver networks might consider the additional layers the only child caregiver faces. It is a vulnerable place to be, and it takes a lot of courage and personal risk to ask for what may be needed when we are thrust into this all-consuming role. Even the helpful FMLA laws barely covered my needs to be available to my family to provide direct care in a long-distance, longer-term situation without losing my economic viability and career entirely in the process. In the end, I was lucky and grateful that my place of work said yes and that I lived in Oregon.
Ultimately I did nothing unique or beyond what other caregivers do who step in to support a loved one 24/7 in dire need of care that is really beyond our skills sets and pushes us to make difficult choices with careers or families who need our attention as well. However, I did it as an “only child caregiver,” and as such it was an important part of my job description inherent in that phrase—only—to be there.