November is national hospice month…an opportunity to honor all the patients, families and cohorts throughout the years.
Over the years, I have been truly privileged to work with amazing families, of all kinds, as they walked through the loss of a loved one. (I do not minimize any of them when I give one group extra recognition, as I want to honor all of the carers for the dying.)
Not too long ago a work-cohort described her father’s last four months of life: a grueling process of life-sustaining surgery followed by wound infection and additional surgery, leaving a sense of failure when the palliative care team finally met with her family in the hospital, following her father’s final diagnosis of a massive stroke. Everyone seemed to realize that the vital man, in his late 80’s, who had agreed to the life-saving surgery months prior, no longer had the chance of quality days. He had made his desires known, clarifying for his doctors and family members that his life had been a good one, he was now looking forward to joining his wife who had died not too many years before.
My cohort expressed some guilt over the discussions she had been part of with her father, as she relayed how persuasive had been her arguments when that first surgery was questionable, and now she spent time second-guessing whether her encouragement had in fact caused him so much unnecessary suffering. This, what he was now going through, was not what anyone had wanted, yet the hope for full recovery had been real, finally destroyed by this latest disastrous outcome. They had taken her father to his home one last time over the holidays, and now he was dying in a facility.
I asked her if it wasn’t possible to allow her father to remain in his home the last few weeks, knowing that he had only a little time left.
Her answer, “We’re not that kind of family”, struck me dumb.
However, this was not the first very capable, educated, medically-savvy family with resources that I had seen not consider caring for their loved one at home. (My own family had required some coercion to take care of my mother at home, even with a plethora of abilities and family members). But still, I was a little saddened that even in the midst of hospice work, a nurse’s family felt so ill prepared to care for their loved one and grant him this gift: to die in his own home.
Last year I wrote a blog in GeriPal about caring for loved ones at home, both the young and old, and I got into a lot of trouble with folks who made it very clear: not everyone can be provided care at home. In fact, all the women who are mostly the caregivers, who are not paid for this work, many of them in the workforce, having to juggle their own families and work schedule, now have the added burden of ensuring mom’s care in the nursing home is meeting her needs— that is why we have options like nursing facilities, so don’t make women feel guilty for trying to do everything, but unable to do it all themselves!
I get it. None of this part of life is easy, in fact it will be some of the hardest times we go through, losing parents and spouses and other loved ones. But the great majority of people do want to die in their own home. This is not a criticism of families that do not care for their dying loved ones in their own homes, it is simply an observation of the families who do.
So, what depicts “that kind of family”? The ones who find a way to do the day to day care as their loved one moves closer to death? Here are just a few of the descriptions of care-giving families I have known: the daughter who took FMLA to care for her mother the last two months of her life and moved into mom’s home; the sister and mother who came from other states the last three weeks of a young woman’s life when her friends could no longer provide the necessary around-the-clock care (that family lying on either side of her as she quietly died in her own bed); the father who had help from the older son to manage the farm, so he could be available both day and night the last 6 weeks to physically care for his younger son who returned home from the unsuccessful transplant with the knowledge he was dying; the neighbors who moved the lonely widower into their family room in order to keep her from dying in a facility, as “she would hate that”; the 4 adult children who shared their mother’s care the 6 weeks following a devastating wound infection, who told me “now it’s our turn, she cared for us”; the son who carried his tiny mother into the shower and gently bathed her, never having had children of his own but somehow knowing how to give tender care that last month of her life; the nurse-daughter who paid for a daytime home caregiver while she was at work and for the final 3 1/2 years had been the other carer for her mother (following the stroke that left her mother immobilized); the retired spouse who spent every moment caring for his wife as the brain tumor took the last vestiges of her sensibilities away (her final 5 months of care so demanding yet the very thing he said he would never do differently); the mother who moved into her daughter’s home the last year and a half of her treatment merry-go-round, providing care to the entire family; the two daughters who shared the care of their widowed father in his last three months (splitting the week in half between them); and the two sons who did the same for their mother so she could die in her own home.
I can honestly say I don’t know what makes these families “that kind”. I do know I have seen self sacrifice and generosity of spirit and countless moments of unconditional love given as gifts to those who are dying. One might ask the question what constitutes a “family” …there have been other beautiful “family moments” that I have witnessed in institutional settings. The ancient couple, while she lay dying in the skilled nursing facility, whose nurses moved a bed into her room so her spouse of 65 years could lie next to her; the disabled woman who had spent nearly all her adult years in a nursing home, whose staff shared the bedside vigil at her death, ensuring she did not die alone; the tender care of the aides over the years, who had fed and clothed and bathed the resident they called “grandmama” (she had been the original person a decade earlier to be moved into their new facility)—all the lovely staff-carers who in fact became the family to many of these nursing home patients. There are beautiful people everywhere who provide loving care.
But those families who feel inept and ill-prepared, whose loved one asks to remain in the home, and decide they are “that kind of family”… I wish it was something that could be easily taught or even purchased. It seems there are families who collectively make this decision to be that kind.
This month, recognizing hospice and end of life care, I think back with great gratitude and give tremendous honor to the many families who were the kind, weathering some tremendous difficulties to give the gift of a home death…whose great love gave the rest of us something to ponder and perhaps strive to be.