I asked my mother-in-law’s doctor to order a palliative care consultation when we saw him a few weeks ago. Our local Hospicare has a program called PATH (Personal Attention to Health). I was desperate for help and advice. Her doctor said yes.
Virginia was drowsy and couldn’t stay awake on consultation morning. She’s spent more time like that the last month, but has a few perky afternoon hours most days. A third mode is wild anxiety which exhausts her and everyone.
There was a knock on the apartment door. A young woman swept in like a gust of cool wind in an overheated room, like a beam of light in a dark cave. She wore a flowing black and white top and a huge smile.
I moved toward the door to greet her as she entered. “Tinker?” she asked.
“No, I’m Elaine,” I said, “Virginia’s daughter-in-law and health proxy. I requested the consultation.” Tinker is Virginia’s primary health aide who oversees daily care and organizes a team of five aides.
“I’m here for our palliative care consultation. I’m so glad you called,” the nurse said, beaming as though I’d done something remarkable. In some ways, I had. We usually delay calling hospice until it’s too late to significantly improve a patient’s last months. Most people avoid considering death at all, but I’ve been caring for Virginia for ten years, so she has a Living Will, a DNR, and MOLST (Medical Orders for Life-Sustaining Treatments) form requesting no heroic treatment.
Virginia is, after all, 101.
Tinker, the nurse, and I talked while Virginia dozed. What about her symptoms? I answered, but collaborated with Tinker who is with Virginia five days a week and watches over her like a mom. What about medications? Tinker pulled the pills out of the drawer, showed the nurse her orderly system, and went through every medication—surprisingly few.
As she and Tinker discussed medication, I watched the nurse’s dark flashing eyes and “we-can-do-this” energy. Her body was supple and strong, someone to lean into. She spoke quietly to Virginia while giving a gentle physical exam for baseline blood pressure, pulse, and temperature. She already had a medical history from the doctor’s office.
As we stood at the kitchen counter to complete the paperwork, the nurse offered suggestions. “A transport chair would be easier to handle than the wheel chair since Virginia doesn’t propel herself.” By afternoon, Tinker had called the Finger Lakes Independence Center and arranged to exchange the wheelchair for a transport chair.
“She might benefit from small changes in medication,” she said, “but I’ll call her doctor to ask. I can’t prescribe, but I can make suggestions. One other thing. I want you to know you’re doing a great job.”
“I couldn’t do it without Tinker and the other aides,” I said.
So many elderly live with loneliness and neglect. I understand why. It takes a team to keep Virginia in her apartment.
“You have a great set-up,” the nurse said looking around the apartment. “A hospital bed, a walker, a lift chair, a team of reliable aides, and resources to keep this going a while longer.”
“I know,” I said, “but we’re all exhausted and anxious.”
“I will help you,” the nurse said.
I will help you.
I clutched those words and held on. Virginia doesn’t fight me every step of the way as she once did and she stopped blaming me for her son’s death, but I’m tired and in over my head making decisions I don’t know how to make. Tylenol or Advil for pain after a fall? Does she need a doctor or is she OK? How do we save her from the medical invasion so many endure? How do we make her as comfortable as possible?
“I’ll be her case manager for palliative care and later for hospice,” the nurse said. “I’ll check her for changes once a month until you need more, but I’m here to help you. Call me if you have questions. Call if you need me.”
“I will help you.” Words more precious than gold.
So now you know a little more about why I love Hospicare and have volunteered there since 2009. As Virginia declines, she’ll be eligible for more hospice support, including volunteers and the residence if we need it. Despite her age, Virginia doesn’t have the six-month life expectancy required to be a Hospice patient. She’s remarkably healthy in many ways, but there’s been a recent decline both mentally and physically. For other articles about my mother-in-law, see My Lover’s Mama and the Negative Mother Archetype or When Forgiveness Requires Patience.