My father was in town recently for a family occasion. He is pushing 80 and while he is very independent, I see that he slowing down a bit. He lives in Israel now, so I get only the occasional peek into how he is faring. Most of the time I have to rely on his reports by phone and email. Even when he is out of sight, he is always on my mind.
I received some great wisdom on this subject from my family’s oncologist. He is a thoughtful person who I see routinely for follow up of the breast cancer I had diagnosed and treated in 2010. This doctor had also been treating my mother for metastatic melanoma since 2002, which had recurred shortly after I finished my cancer treatment. My mother had significant pain, caused by disease pressing on nerves in her spine and neck. While my father was a loving and devoted caregiver, I was anticipating how to go about helping them as her cancer slowly destroyed her body.
“You want to navigate them with grace,” he said.
What a lovely way to frame this difficult time in life.
As a middle-age person with a young-ish family, I had been going about the business of raising my children, tending to my marriage, and bustling about in my community. My parents had been healthy and active. They were an important part of my family life, helping me out when needed, and just being involved, loving grandparents.
Then slowly, without fanfare, things shifted. My independent parents seemed to become lost in the mire of medical care, with the medical equivalent of “too-many-cooks-in-the kitchen.” There was the internist, the endocrinologist, pain team, and oncologist to name a few. This, plus their generational inclination to be compliant patients without asking too many questions, not asking questions they didn’t want to know the answer to, or challenging doctors, made for an often chaotic and sometimes ineffective care plan despite the caring and good intentions of the health care professionals.
Fortunately I lived near my parents so I would sometimes take my mother to doctor’s appointments to give my father a break. It also gave me the opportunity to ask questions and take notes. They drifted along in this vein for a while. Their world began to shrink as my mother felt worse. She slept a lot from the pain medicine. Most of their outings were to see doctors.
I finally intervened when my mother’s pain was not controlled adequately. The outpatient model of medical care was no longer working: the patient/family calls the doctor’s office and waits for the nurse to call back, and then has to wait for the nurse to talk to the doctor and call back again with a pain plan. Then the prescription needs to be called in to the pharmacy, which meant my father had to go pick it up. And in the midst of all this waiting, my mother suffered and my father felt helpless.
I knew a lot about home hospice care from when I worked as a social worker in a cancer center at a major university hospital, so I knew it was what my parents needed. I explained the concept to my dad – nurses come to you, assess the situation, speak to the doctors and provide whatever you need. He was on board. My mother took a little convincing, as the word “hospice” felt so scary to her. She wasn’t ready to give up hope.
“Mom, I want you to live as long as you can. But I can’t watch you live in pain. This is no way to live,” I told her.
She reluctantly agreed. My mother lived three more weeks and died comfortably in her home, at the age of 74. It was heart-wrenching and awful but we navigated my parents with grace, the same way they navigated our childhoods.
It is not always obvious when it is time to intervene with aging parents. After a lifetime of being independent, they will not always ask for help. And after a lifetime of being their child, it is difficult to insert yourself into the caregiver role for, doesn’t mother always know best? It is a fine balance of respecting their autonomy and independence while gently giving support and assistance, whether they ask for it or not. Sometimes it takes an event to occur, like a fall or a hospitalization, to present the opportunity for intervention.
I watched my devoted mother care for her mother who had dementia the last 15 years of her life until she died at age 99, just four years before my mother. I learned about quietly and lovingly honoring your parent by caring for them in their old age.
After all, there but for the grace of God go I.