Beyond the breathless years of raising "typical" children, many of us find ourselves again in caregiving roles.
What do we do when those we love won’t die, grow up or leave and we must care for them? Some of us see caring for another as a burden; others see it as a blessing. Often, it’s both.
The attitude one takes may be culturally influenced.
Living in Tanzania, I found older people there to be universally revered. The idea of putting a parent in a skilled nursing home was foreign to Tanzanians — there aren’t any! Elders are the leaders of the family and the village. In America, my adult son’s Asian and Indian friends share similar sentiments.
On the other hand, I remember a participant’s perspective in the "A Year to Live" group that I facilitated. She was adamant about not wanting to become a burden to her family so was considering some sort of "Death with Dignity" or "Medical Aid in Dying" strategy to assist her at the end of her life.
Her son, a family practice physician, heartfully heard her wishes. He asked her to consider, though, all that they, her children, might learn by being able to care for her during her final days. He felt it would be such an honor and privilege. She had never thought of that and reconsidered her options.
Caregiving is hard work. It can be torturous, tenuous and tender — simultaneously. For any of us, especially providers who do it for a living, coming home and doing it some more can be exhausting and dispiriting; it may seem like a terminal sentence. Caregiving impacts our well-being — in positive ways, too!
Our roles change. A child becomes the parent, a friend becomes the patient. I remember how difficult it was for my mother, while in the hospital years ago, to ask me to help with her hygiene.
And, the same for my best friend to request that I sit with her while she bathed during her final weeks in case she fell again. Both experiences humbled me; I remain grateful to this day to have shared such intimacy.
Whatever your situation, determine first and foremost what is most important to your loved one and then develop a plan of care that reflects their goals — for now and for the future.
For you, the caregiver, I encourage three things:
Take care of yourself.
You must. I read of a woman with 12 children. From 1-3 p.m. daily, she religiously retired to her bedroom to take time for herself.
She wasn’t rich; this mother just knew she must stop to continue consciously caregiving. The family figured out a way to carry on during those two critical hours.
Strive to be clear in your communications.
It helps to start by acknowledging the feelings and needs of all parties.
Ira Byok, M.D., in his classic book, "Dying Well," summarizes the developmental stages of dying — which are key for communicating closure:
"Please forgive me."
"I forgive you."
"Thank you."
"I love you."
"Goodbye."
Rally support!
It may seem easier if you have money to spare; if you’re on a limited budget, though, there are resources to be had — for free. The biggest stretch is often recognizing that you cannot do it alone anymore and reaching out. People and organizations are here to help you.
Ultimately, when all is said and done, our experience as caregivers has the potential to change the way we, ourselves, choose to live and die. We’ve had the good (albeit difficult at times) fortune of a dress rehearsal. Take heed!
