Families caring for families

by: Amy Getter, who blogs regularly at hospicediary.com

“A nation’s greatness is measured by how it treats its weakest members.” Mahatma Ghandi.

When my children were little, I provided day care in my home, and I often heard my working mothers make comments about having “quality time” in the evening with their kids. I wondered, having my own kids and knowing the busy times around dinner, followed by bathing, bedtime stories, and night time rituals, how that chaotic amount of doing could actually be referred to as “the quality” time. I considered all the hours during the day: sitting on the couch and reading at story time, or kissing the booboos from play time outside, or exclaiming on the beauty of a messy art project, or carefully saving that first lost tooth; and I knew how much those working moms missed that I was privy to. It’s true, there are lots of other things moms are busy doing during the average day, and children don’t have just our undivided attention, but I certainly had the opportunities with my daycare children that their mothers missed throughout the day. I never quite believed that my nine or ten hours of time with their children was not also “quality time” as much as two or three hours of mayhem every evening. This is what I remembered when I listened to a video on a website touting nursing home care. I remembered those children, and how much they would have rather been at home, with their own mothers providing what I did throughout their day.

The woman on the video, after taking her spouse to a nursing home, says, “The best thing for him was to be where his physical needs could be met 24 hours a day and I could visit and take care of his emotional needs…I’m not so stressed and the time I do spend with him is loving time, not frenzied attempts to get him bathed and dressed…”

It is a tremendously difficult decision to leave a loved one behind, for others to care for. But let’s be honest, no one in the nursing home is going to love that man the same as his wife does. And no amount of social interaction or professional care is the same as the loving care from family. And my guess is, none of us will be asking to be placed in a nursing home when we are elderly and infirm. I hate to criticize what has become an essential in our current day families, but leaving the care of our children and elderly to others is a very sad state of affairs. I wish it was the exception, and not so common that no one seems surprised. I also know there is no easy answer for families, a looming problem created by the financial and emotional burden of caregiving. We appear to live in a culture that necessitates institutionalizing care that used to be performed by relatives.

But as I leave my elderly couple who are desperately trying to remain in their home while he daily declines, I realize how many things are not available to them in terms of real support. There are no family members to help. They will have to pay an exorbitant amount of money for hired help, for only a few hours a day, which is not nearly what is needed. It’s a problem I see on a weekly basis. Another visit, where the care of a demented mother is shared by two daughters, leaves my head spinning at the constant drone of an elderly woman’s confused, whining voice interspersed with the sleep deprived daughter’s tearful complaint about mom’s broken sleep. The daughters’ lives are put on hold, while they provide all the daily care without respite, because Medicare doesn’t consider home care assistance reimbursable.

As a nurse, I care for my patients; I try to do the very best for them. But a visiting nurse is so inadequate when help is needed around the clock. I know what it was to care for my own mother as she died. The work was difficult and burdensome, 24 hours a day, with lost time and lost resources (costliness that included monetary and physical and emotional burden, none of this reimbursed by any insurance coverage). I also know the rewards for myself and my sisters far outweighed the feelings of ineptness and bone-weary fatigue. It was worth it… all of it. And I hear the same from so many families who journey through the end times with their loved ones. Sorrow, and relief, and somewhere in the midst of those feelings, a sense of accomplishment… a job no one really desires, but a job well done; one that took an entire family’s shared efforts.

I read a report recently that touted providing EOL care in the palliative care wing of the hospital, and in the hospice inpatient center, claiming that this is an improvement over not too many years ago when most deaths occurred in the hospital ICU. I guess I’m not really seeing the nuances here. Most everyone I speak with wants to stay and die at home. Let’s stop telling ourselves that it’s the same thing, for someone else to do it, and we can “just be the spouse, the son, the parent, the family”. Let’s stop advocating for “experts” to provide care, and let’s begin really supporting those who choose to be caregivers, and instill confidence that they can indeed do the work, and let’s provide social programs that address caregiving needs for every family. (More Medicare dollars allocated for care provision at home instead of ICU stays and futile treatment the last year of life?) For centuries, average families have cared for their dying loved ones without needing a team of experts or a specialized care unit. Let’s find ways in government spending that can practically support the day to day care needs of our children and elderly, without requiring institutionalization.

I understand not everyone can stay at home with families, and I’m thankful for the daycares and the care facilities with dedicated staff that provide the necessary means to care for our vulnerable populations; because sometimes that is the only possible option. But what if this was the exception and not the norm? If the opportunity, practical and monetary support and ability are combined, caring for our loved ones is more than just a possibility. It is the gift that we model for the next generation, so that families caring for families does not become a lost art.