Monday, December 28, 2015

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.

8 comments:

Maggie said...

It's a hard problem. On the one hand, I certainly don't want to die in the hospital ICU. Noisy machinery, bright lights, getting awakened from (possibly troubled) sleep for another blood draw or injection -- yecch. I hope I have the good sense (and some competent, thoughtful help) to notice when it's time to stop burdensome treatment that has a small chance of extending my 'good' time, in favor of stringing together a series of 'good' days even if fewer in number.

Even so, I suspect that the idea of 'caring for the dying in their own homes' has a lot of nostalgia and too little reality in the present culture.

Nineteenth Century Americans had large families that often lived in three-generation households. Unmarried aunts and uncles frequently served as extra live-in adults and took up various important work inside the family, sometimes in addition to contributing income earned outside the home. Unrelated unmarried adults were often hired hands to help with farm work or house work or childcare -- or eldercare. Lots more people to share the load, all in the household, than now.

Also, 'dying' tended to be a shorter-term process than it is now, with grandpa peacefully expiring after a few days of pneumonia (an illness that used to be called 'the old man's friend') or, if truly unlucky, dying in a few days or a small number of weeks from the infection sure to follow major injury. Nowadays we can cure that some pneumonia repeatedly in the same patient, requiring a couple of weeks of bed rest followed by several weeks of focused rehab to regain strength and function -- each time. A regimen, incidentally, that would be beyond either the 19th-C household or the modern caregiver.

And even in those olden days, much of the care fell on one or two daughters, who often became mightily exhausted before it was over. Not to mention that even the most assiduous of caregivers had trouble preventing bedsores before the advent of alternating-pressure air mattresses, though a bedsore can cause devastating, intractable pain.

Certainly 20th-Century medicine went too far into the aggressive prevention of death at all costs -- chiefly 'cost' borne as the patient's physical and emotional suffering. But I think it would be a mistake to lead people to believe that 'most' of us can do our dying at home.

Joanne Lynn said...

We certainly need a strong agenda to support family caregiving, but it is almost not present on the policy stage. My team has provided a way to get politicians talking about these needs - by aiming to get family caregiver issues onto the party platforms in all the states that have party platforms (and then on the national platforms). Have a look at http://caregivercorps.org and sign up to help! It usually takes only a few hours to talk with your state's political parties and submit a suggestion for their platforms. Thus far, all contacts with political leaders have been welcoming and the process is moving along in early states - but most parties in the states address their platforms in the first half of the coming year. Let's change the context in which we serve needy patients!
Joanne.Lynn@Altarum.org

Ann Kasun said...

It is wonderful that Ms. Getter was able to stay home with her children when they were young; that is a privilege I myself enjoyed. And the fact that those 10 years out of the workforce will have a significant impact on my retirement is not, for me, too high a price to pay. But to say that staying home with children is the ideal choice and that every woman would choose to do so if only she could afford to do so is nonsense and reopens the old wounds between those women who work outside the home and those who do not.
Using the same logic to guilt women, and let’s be clear here, most caretakers are women, into once again leaving the workforce to care for elderly relatives is unfair at best. Certainly, there are women who would, if adequate financial protections were in place, prefer to stay home and care for mom and dad but that is only a portion of the picture. Few families are the “Leave it to Beaver” cohesive unit movies and TV would lead us to believe is the norm. One need only to look at the statistics on family violence around the holidays when families gathering to realize that more time together is not necessarily a good thing in all situations.
According to the 2003 national study conducted by the National Research Council Panel to Review Risk and Prevalence of Elder Abuse and Neglect, between 1 and 2 million Americans age 65 or older “have been injured, exploited, or otherwise mistreated by someone on whom they depended for care or protection”.* This is a social problem with financial aspects, not a financial problem. We need to do a better job of engaging with our clients as they explore their options – helping them to understand what is uniquely right for them in their situation, we need to do the hard work of teaching families in pain to value quality of life over simply the number of days, and we need to support the one who provides care as well as the one who receives it in the process.
All vulnerable populations need and deserve to receive the best possible care. For that to happen we as professionals, need to recognize that caregiving is not a one size fits all solution. Each family presents us with unique challenges. Each family has its own unique structure, personality, abilities, dysfunction, history, and story. We do our families a huge disservice when we allow our own preferences and choices to color their options.
Ann L Kasun
annkasun@alklifesolutions.com

* (Elder Mistreatment: Abuse, Neglect and Exploitation in an Aging America. 2003. Washington, DC: National Research Council Panel to Review Risk and Prevalence of Elder Abuse and Neglect.)

Anonymous said...

This is a very clear assessment by someone who actually witnesses the lack of support given to individuals struggling at home in this situation.
It is sadly true that the resources, financial and otherwise, go to the institutions. Big hospitals, corporations that run assisted living, memory care, etc. The beneficiaries often the institution, rather than the elders and families they serve. Staff are typically underpaid, understaffed and families often have to provide extra paid support,despite paying large sums for their loved ones to be cared for there.
There is no single answer for everyone's circumstances, but surely all options should be facilitated equally. Caring for our loved ones, the ones who brought us in to the world and the ones we bring in to the world, is our cultural responsibility.

Lynn said...

I have to say this struck a chord in me. I leave my kids every morning to care for seriously ill patients who live in a VA long term care facility. Many have no family. Thank goodness we have policies within the VA system that allow for at least some veterans to access caregiving when they need it. I'm just not sure I'd bring the stay-at-home vs working parent debate into this. Yes, of course, we need to provide more funding for social programs to support older and seriously ill adults and their families in their homes. But just as Maggie and Ann pointed out, every family is different, and being at home is not the ultimate goal for all. Indeed, health services researchers have argued that death at home does NOT equal quality end of life care. Just as having an at-home parent does not equal optimal parenting. My kids are doing just fine, and in fact they are proud of me for doing this work.

Amy Getter said...

Hey everyone, what this blog is not about: 1. A criticism or rationale of working parents. 2. Touting one certain way as the best way, or the only way. 3. Assuming that everyone wants to be a stay-at-home care provider. Or that everyone wants to stay at home at the end of their life.
This is a commentary on our society as a whole, which now accepts the standard of our children and elderly being out of the home, with care provided by others, with little remuneration for those who are in family care provider roles. Speaking for the hundreds of patients that have shared their end of life wish to die in their homes, can we find ways to support this, rather than assume it is mere nostalgia? It is both a societal and financial issue. Who can afford the costs for care? In my rural setting, it costs over 5,000 dollars a month to be placed in an Adult Foster Home or Assisted Living Facility, and the nearest Skilled Nursing Facility is not in the local community and costs well over 10,000 a month. These figures are low compared to some suburban areas (not to mention lost wages, impacted career choices, stress and emotional burden that can hardly be measured for the family). Thank you, Joanne for your link to one possible solution.
Amy

Paula Span said...

Of course the post criticizes working parents, whether the author intended that or not. More specifically, it criticizes working *mothers*, contrasting the author's intimate moments with young children with the chaotic "quality time" that their mothers -- no mention of fathers, as is so often the case -- have apparently willingly sacrificed. At the end of life, in this essay, it's once more the wife who is leaving her husband to be cared for by strangers.

The author might find more support for her "commentary on our society as a whole" if she weren't implicitly and explicitly defaulting to a historic model that relied on the unpaid labor of women.

Carol said...

In addition to perpetuating the dichotomy between "good" mothers and employed mothers, the author fails Statistics 101. About 1.4 million people are permanent nursing home residents. They are generally 80 or older and many have dementia, which is particularly difficult to manage at home. An additional million or fewer may be in assisted living, which is not a health care facility. Compare this to the estimated 40 million Americans who are currently providing unpaid caregiving assistance,including complex medical care, at home. We should be supporting all the caregivers, men and women and young and old, rather than making distinctions among them.