“The best we can hope for in preparing a loved one for a good death, if there is such a thing, is to strengthen whatever sense of control he or she can retain over this most personal of passages…The most emotionally wrenching task for each family member is to find one’s own way to let go…We are the ones who must give up control…The most important medicine during this time is honest conversation, guided by professionals and spiritual support.”
— Gail Sheehy, Passages in Caregiving
Have you had a parent die? Perhaps both… What did you see, and learn that might inform your own choices?
Caregiving can be one of the most demanding and satisfying activities of a lifetime. As a nation, we place an immense responsibility of personal care on the shoulders of family, friends and loved ones. There are an estimated fifty million Americans taking care of loved ones at home without pay. If you or a loved one are homebound, you may qualify for Medicare’s Home Health Benefit. You can explore the possibility by clicking here.
If you’re the patient, it’s okay to need and ask for help. Many of us are unsure of how and when to ask for help. Needing help with any “activities of daily living” (ADLs) is a useful benchmark. They are bathing, dressing, eating, toileting (incontinence), and mobility / transferring. If any of these have become an issue, it’s time to recruit help.
If you’re a caregiver, either by profession or by loving necessity, it is important to include yourself in that circle of care. What you’re doing is hard work. Ask yourself what’s required to make it sustainable. Rest and recovery are essential. Also, talking with other caregivers is a helpful coping strategy. Even when things go as well as possible, caregiving is still a demanding labor of love.
My Mother’s Final Days
As a devoted herbalist, my mother, Lyn, was predisposed against modern medicine. She was loath to see a doctor, and self-diagnosed everything from bronchitis to cancer. I knew that she had been losing weight for some time and looked older. Given her symptoms at the time and reflecting on all that transpired, I believe she had metastatic ovarian cancer. We’ll never know for sure.
My mother accepted that her body was failing and that she was dying. As a deeply spiritual woman, she chose to align with her soul. I can still hear her voice, gently reassuring my brothers and I, and herself I suspect, that the spirit is eternal. Her workshops with Elizabeth Kubler-Ross in the 1970s had planted seeds that were bearing fruit.
Lyn had relished our conversations over the years about hospice. Time and again, she had clarified that she wanted “no heroic measures” and had updated her advance directive, sending me a hard copy with each change. I had a folder of them. Few words do justice to a parent’s request to “please just let me die.” We had an agreement.
I called our local hospice for support. Their nurse came out to do an in-home assessment. It had been more than a year since Lyn had seen a doctor, and the nurse was hesitant to call it cancer, though she could see that my mother was gravely ill. “Failure to thrive” was the admitting diagnosis that allowed the agency to prescribe medications, including morphine and fentanyl.
My mother decided when to die. She chose a date on the calendar to stop eating and then a week later to stop drinking. She wrote letters to old friends, decided who would get her modest jewelry and keepsakes and called her family to say goodbye. Some were not happy with her decision. It didn’t matter to her. She was ready to go and was at peace with dying. I think she was eager to experience it, as if it were the next adventure.
Lyn’s appetite had waned weeks before, so giving up food was not an effort. A week later, she toasted to life and had her last glass of water. From her research and from accompanying friends on similar journeys, she predicted she would have three days left before losing consciousness.
The immediate family visited and said their goodbyes. My two brothers and I slept over for the duration and took turns staying up with her and checking on her through the night. When she became thirsty, we wet her parched lips with a moist washcloth. Hospice had supplied Ativan for anxiety, but Lyn was in good spirits, all things considered.
Surrounding her in bed, we cherished the arc of our lives together, a mother and her three sons. We laughed and cried, the four of us, and said the things that matter most. “Thank you… Please forgive me… I forgive you… I love you.”1
The morning of the fourth day she didn’t wake up. She appeared to be sleeping comfortably. We read and sang quietly to her while taking turns holding vigil for three days. Her breathing was not labored; she was slipping away as gradually and peacefully as possible. Finally, her body let go, and she died.
We gave her a sponge bath scented with lavender and dressed her in her favorite clothes. As many Buddhists and others have learned to do, she did not want her body to be disturbed or moved for three days. We opened the windows, allowing Vermont’s October air to keep the room cool. People came and went as she lay in wake. A tender reverence filled the home.
In the attic, Lyn had stored a coffin made of sturdy cardboard. Through the changing seasons, while storing blankets or a piece of luggage, I had glanced at it many times. My brothers and I carried her body down the stairs, and then placed her body in the long box. We filled it with flowers, some photographs, and a few of her precious things. We said prayers and then closed the box. We carried it together outside and set it on the cold flagstone terrace.
I went in and called the cremation provider, who came quickly. Together we carried her simple coffin to the unmarked panel van. As the van slowly departed, my mother’s favorite trees, the towering white pines surrounding her home, swayed in the autumn breeze. Then, with a sigh of relief, a calm settled in.
Closing Thoughts
It’s not unusual for caregivers, when providing for a loved one at home, to become afraid that they’re not doing enough or become uncertain of what’s taking place and what to do next. An important part of hospice care is normalizing what’s taking place. Learning more about the natural process of dying will alleviate much of the fear. Hopefully, this kind of support and reassurance is just a phone call away—ideally to your hospice team, not 911.
When a loved one dies and the role of caregiver ends, there will likely be a vacuum and a full spectrum of related feelings of loss. This is normal and calls for generous selfcare. A diamond in the rough: Most every hospice agency offers bereavement resources to surviving family members.
Next Week’s Post: Family Caregiving, Part Two
A Medical Advice Disclaimer
The content of this blog is for informational and educational purposes only. No aspect of its contents is intended to substitute for professional medical advice, consultation, diagnosis, or treatment. The author is a spiritual care provider, not a doctor. Always seek the advice of your physician or other qualified health care provider with questions you may have regarding a medical condition or treatment and before undertaking a new health care regimen. Never disregard professional medical advice or delay in seeking it based on something you have read here.
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Until next week, ‘Safe Journeys,
DSW
- Ira Byock, The Four Things That Matter Most, (2004)