Caring for Dying/Caring for Self
Michelle Peticolas, Ph.D.
Grief and Death Transformation Specialist
Secrets of LIfe and Death
My father was diagnosed with Alzheimer's a few days after his eightieth birthday. His dementia was fairly advanced. We ignored the signs as long as we could.
After his diagnosis my father deteriorated rapidly. It seemed that now that we knew the truth, he could stop pretending and let nature take its course.
His participation in a daycare program was short-lived. An engineering educator by profession, my father fell into a habit of lecturing the other participants. Unfortunately, when the nonsensical strings of electronics phrases he spewed forth failed to capture their attention, he would lose his temper. The staff quickly tired of his outbursts and he was soon expelled.
Home all the time, my father was a handful. Like a large baby, he had to be dressed, bathed and fed. Several times he wandered off from home and got lost. Then he became incontinent. My mother, blind in one eye from a brain tumor surgery and fighting a recurrence of breast cancer, began to show signs of the strain.
I arranged to have a home health aid visit once a week. My mother did not get the concept. She treated the aid like a guest rather than an employee. Thursday mornings were spent frantically scurrying around trying to get my father cleaned and the house presentable before the aid arrived.
Finally I enrolled my parents into a respite program that placed my father in a nursing home for three days while my mother received a long-needed break. My father never came home again. Only by stopping was my mother able to realize that what she was doing was beyond her limits.
My mother's handling of my father illness was neither unique nor unusual. It is not easy to ask for help and equally difficult to accept it. Partly it's that ethic of rugged individualism, declaring independence and self-reliance. Also there's a touch of pride, the assumption, perhaps rightly, that no one can do it as well. And then there is the privacy issue, a strong aversion to hanging out "the dirty laundry." And let's not forget the fear of being turned down. However, when it comes to caring for the dying, it is essential to the caregiver's survival to overcome these mental obstacles and seek help as much and as often as needed.
Caring for a person who is dying is not a solo sport. There is simply too much for one person to do -- medical appointments to arrange and attend, equipment and medicines to procure and dispense, new treatments to research, family members to update, and on top of all that, the daily list of a normal busy life. When a dying person becomes bed ridden, or incapacitate, the list expands to bathing, toileting, moving and adjusting, daily laundering, special meals, drug administration, wound tending and continuous monitoring.
Then there's the emotional component. . .
When my mother was dying, I went back to help her tie up loose ends. She was sharp of wit, ambulatory and able to handle her own hygiene. All I needed to do was drive her around and help her complete various tasks. I don't think I even did much cooking. Nevertheless, I was soon an emotional basket case. Was it the cats peeing in my bedroom? The constant blare of the radio? The deer-in-the headlight expression on the faces of my brother and sister-in-law as they disappeared chameleon-like into the walls of the house? Perhaps it was that pivotal moment when I asked my mom about throwing out a photocopy of one of her toy designs. "I guess I'll never get to that," she said as she released a dream-crushing sigh. My heart broke. I put the paper back on the pile. "I guess we don't need to do this right now," was all I could say.
As a caregiver I was a lightweight. My back went out ten days after I arrive and I was on a return flight to San Francisco three days later. When my mother went into coma two weeks later, I did not go back. Yes, my relationship with my mom was tricky. But whose isn't?
The experiences of my parents' dying motivated me to make the Secrets of Life and Death film series. There's nothing like failure and regret to galvanize a sense purpose. I wanted to learn a better way to do death. I interviewed people who could teach me, who could be my role models. What I learned was a better way to live my life. That's what death teaches--how to live.
Here are some of the things I've learned:
• Don't forget to breathe -- it's a great way to check inside.
• Pay attention -- look and listen
• Respect limits -- our own and those we are caring for
• Ask for help -- be specific
• Withhold judgment -- about yourself, others
• Have compassion -- for everyone involved
• Keep a sense of humor -- laugh often, it helps you breathe
• Embrace the mystery -- it's more interesting that way
I will be speaking about the caregiver's journey and it challenges at FemTalks in Oakland on June 10, 2013, 6:30 pm. Details: http://www.femtalks.org/miracle-salon.html.