Article from: Pulse—Voices from the Heart of Medicine
Although Madge Kaplan’s article is about long-distance caregiving, the strongest message that I get is the humbling nature of the journey’s end. Even Madge’s professional involvement in healthcare and her father’s involvement with public discussions about aging did not make the experience any easier for them—not really. The focus of my book, “What to Do about Mama?” (a collection of caregiver stories) may be to help mitigate some of the stresses of caregiving, but in reality no one is ever able to control how the process will play out (it’s not even close). I am in total agreement with Madge’s comment about the articles that present the “best spin” of caregiving. As much as I support being “positive,” the truth is, who would ever choose to lose their health and abilities on the end-of-life path that we will all travel? And what caregiver would choose this debilitating journey for their loved one? It is never easy.
(Not So) Golden Years
Friday, 7 March 2014
When I read news articles about caring for elderly parents at a distance, I sometimes shake my head. There’s a tendency to put the best spin on the experience: as long as you contact the right people, get the right information and treat the ups and downs as just part of life’s challenges, you’ll be fine. You can do this!
I find myself wondering when the author last talked to a caregiver at her wits’ end–emotions and finances drained, logistics spiraling out of control.
I was a long-distance caregiver for twelve years. I believe it’s best to resist a formulaic approach in favor of one informed by the details–and always, always, humbled by the truth.
Because the truth–and real life–can be humbling indeed.
When my father was in his eighties, he engaged in many activities, from local politics to observing at the UN for an international human-rights organization. He often organized public discussions about our nation’s aging population and how unprepared we were, as a society, to care for their needs.
Then, in 1998, between Christmas and the New Year, he had a stroke.
Suddenly, he was exhibit A.
When I got the call about my father’s stroke, I was working as a national healthcare correspondent for public radio. I lived four hours away from him, and my sister a bit closer; together, we swung into action to help in every way we could. But nothing was easy.
After acute-care hospitalization and rehab, my father returned home dramatically less independent. He relied on a walker to get about a cramped and cluttered apartment–and relied on his wife, ten years younger, to help with pretty much everything else.
Fortunately, he had a computer with which he could search the Internet and keep up with things; he wrote long emails to family members, discussing whatever he was thinking about or had read.
Because the computer was his link to the outside world, when it malfunctioned my father was beside himself with frustration. I’d try to troubleshoot over the phone, and my sister and I installed safeguards, but these weren’t always successful.
My father’s homebound status revealed the limitations of Medicare and of his supplemental insurance coverage for long-term care. Medicare, for instance, covered only a limited number of home visits by nurses and aides, and then only after a hospitalization. Once those days were up, you had to pay out of pocket. My father’s finances consisted of a fixed income (mostly Social Security) and meager savings; he wasn’t poor enough to qualify for the Medicaid that would have covered a home aide.
My sister and I helped pay for the aides, but none of our efforts helped my father to adjust psychologically. Though he knew he was an elderly man, the idea that he’d probably never again be able to walk without assistance or lead an active, independent life made him feel cheated and disappointed.
These complexities were worsened by my father’s marital situation. My mother and father had divorced twenty-five years earlier, and my father’s second wife had serious mental-health problems, most notably paranoia. She viewed helpful outsiders–including her husband’s daughters–with suspicion. Though intrigued by my knowledge of health care and my knack for navigating the system, she also felt resentful, and this played out in disruptive ways.
For instance, although my father appreciated the aides we paid for, his wife accepted them only grudgingly. If she didn’t like an aide, she unhesitatingly found an excuse to get rid of her.
This led to periods during which my father and she had no home help. Some days she’d go out and leave him alone. If he fell, as he sometimes did, and remained on the floor for hours until she returned, that was just the way it was.
My father covered for her lapses, reluctant to have us interfere. In fact, we usually didn’t learn of these episodes until much later.
As I look back on this now, it’s hard to imagine how my sister and I managed to ride the roller coaster of our emotions–surprise, distress, frustration, resentment, helplessness. It was like a bad dream that just went on and on.
At times I found the situation too embarrassing to discuss with anyone but my sister and my closest friends. But I learned that other long-distance caregivers had their own hair-raising tales.
I discovered that we all lost sleep over the same things:
• the presence in our parents’ homes of a series of home aides, most of whom we’d never met;
• ringing phones that didn’t get answered although someone had to be home;
• newly purchased, lifesaving medical-alert buttons that we hoped would work as promised;
• walkers that tended to get caught in rugs, slippers and sidewalk cracks;
• unopened mail, missing bills, checkbooks, eyeglasses, hearing aids or (fill in the blank);
• refrigerators and cupboards that always seemed insufficiently stocked;
• doctor’s appointments we weren’t there for;
• long days alone we weren’t there for;
• medication lists that were out of date;
• lack of adequate funds for long-term care; and
• the inability to start planning ahead for our own long-term needs.
We did share one positive: a deep gratitude for the handful of social workers, hired from a distance, who said things like: “You’re doing all you can. It’s important that you live your life, too.”
Even years later, this list still feels relevant. There have been improvements in long-term care coverage, but not nearly enough; most families have to dig deep into their own pockets to obtain the necessary help.
In 2010 my father died of congestive heart failure while living in a nursing home (the roller coaster of institutional care was another long-distance challenge for my sister and me). Once he was buried in a veteran’s cemetery, we never saw or spoke to his wife again.
Our mother, who’s in good health and lives near me, turns ninety this year. At some point she’ll need more help–and when that time comes, I will try to remember that family caregiving, long-distance or otherwise, is hard and imperfect.
It can also be gratifying. But when it isn’t, that’s not because we forgot to review the playbook or aren’t clever enough. And being honest about that is where we all need to start.
I’m glad that there’s now a lot more public discussion about the ups and downs of family caregiving, including long-distance care. What still saddens me is how the challenges (including dealing with difficult spouses or family members) pretty much take over your interactions with your parent–sometimes for years.
The quality of your time together, the quality of conversation, is never quite the same. And then one day this person you’ve been constantly worrying about is gone–and you never did get to sit and read together or listen to classical music or tell funny stories from the past.
I’d like to believe that we as a society can figure out something better than this.
Until that happens, my sister and I continue to learn from our experience with my dad. Our hearts especially go out to everyone caring for older family members, whether near or far. We all are trying to do our best under challenging circumstances.
About the author:
Madge Kaplan is director of communications at the Institute for Healthcare Improvement (IHI), in Cambridge, MA. She hosts and produces WIHI, IHI’s online audio “talk show” about innovative, evidence-based approaches to health and patient care. She spent twenty years as a public-radio broadcast journalist, most recently at National Public Radio, and was a 1989/99 Kaiser Media Fellow in Health. Her reporting has been recognized by American Women in Radio and Television and by the Pew Charitable Trusts, among others. She’s also written short plays, including one recently staged by The Vineyard Playhouse.
Story editor: Diane Guernsey
Thanks to Matt Gallardo from Messiah Lifeways for his book review. http://www.messiahlifeways.org/blog/
“What to Do about Mama”- Book Review
Everyone is a potential caregiver – BGM & BTB
We have not done a book review in quite a while on the blog page. However, What to Do about Mama is categorically worth the read. It should not only capture the attention of previous and current caregivers, but it can also provide a potential glimpse into the future for nearly all of us. As the book states, “everyone is a potential caregiver” either for an aging parent, spouse, sibling as well as a disabled child, client, friend, or neighbor. The role of caregiver could be as short as a few weeks or for others it could last decades. Nonetheless, very few of us will ever be devoid of this altruistic and challenging role.
Co-authors Barbara G. Matthews and Barbara Trainin Blank open their hearts and bear their souls to share their challenging, heart wrenching, and insightful journeys as caregivers. Their personal stories, along with a host of other caregiving contributors, give detailed perspective on this physical, mental, and emotional roller coaster that it entails. Readers should heed the warning of how expectations, sharing responsibility, and the relationship between other family members can really deteriorate and/or shift. Furthermore, it highlights many of the unexpected realities of caregiving such as dealing with financial, legal, and medical issues of the care recipient.
Affirmation is also a big part of this book, particularly for those who served as a caregiver in the past. The relatable experiences can provide some absolution from the feelings of guilt, resentment, or remorse while “in the trenches.” If someone felt inadequate or felt guilty, What to Do about Mama shows that they are human and they should be proud of the job they did. For some of the contributors, I think the book was also a way to get those negative feelings off their chest without feeling judged. It helped them move beyond those difficult memories and to remember more of the joyful ones spent with their loved one.
For current caregivers, this is must read. As the authors express, this is not a caregiving textbook, and it is not written by “caregiving experts” but rather a guide featuring a collection of experiences and insights for caregivers by caregivers. It provides real world scenarios, anecdotes, and support to those in the position of caregiver. It tells the tale of what to do, what not to do, what did or didn’t work for them or what could work for you. They also reference funding sources as well as other resources to help your loved one age in place.
Lastly, the book also goes beyond caregiving in the here and now. It examines the residual effects of caregiving even after the loved one has passed, including the emotional aspect, relationships between survivors, and some of the legal and financial issues that can linger.
I recommend What to Do about Mama for anyone faced with the sometimes rewarding and sometimes unenviable task of caregiving for which most of us will encounter at some point in our lives. If you would like to learn more about this book as well as other resources to help caregivers manage and embrace the role along with avoiding caregiver burnout, please call the Messiah Lifeways Coaching office at 717.591.7225 or email firstname.lastname@example.org.
As I said under “Personal Caregiving Stories” above, the purpose of this blog is to discuss caregiving experiences, many of which are addressed in “What to Do about Mama?” Let me be more specific.
I am a baby boomer, not a Gen X’er, Millennial, or a “new silent.”
(I just looked that one up.) I think this means Baby Boomers prefer to communicate by talking or writing (letters or e-mail). Personally, I don’t usually text, or Facebook (although many in my generation do), or blog.
I was a caregiver for 7 years.
I wrote a book.
I didn’t write the book to make money. My objective was to offer insights to other caregivers or potential caregivers based on the hindsight of experienced caregivers. But to get the word out, people have to read the book.
So, I now Facebook: https://www.facebook.com/whattodoaboutmama
and blog: http:/www.bgmatthewsblog.wordpress.com
and maintain a half-dozen other media accounts.
And so far, to be honest, I really don’t like it. I get frustrated with the technology, and discouraged when I feel my information just
But I keep on trying.
Yesterday I explored a caregiving site: http://www.agingcare.com. And once again, as I read it I thought: “It’s in the book!”
I really don’t want to rewrite my book on-line. Nor do I want to create a lot of new material–but just publicize the existing material. So, I’m going to try (once again) to reference some really good information (by the AgingCare people) to my book, “What to Do about Mama?” and hope that folks both young and old will decide they want to learn more about caregiving by reading the book so that they will be more-prepared when their time inevitably comes.
Top 3 Excuses From Siblings Who Don’t Help With Caregiving
by Carol Bradley Bursack”
1. “I don’t have time.”
• This excuse is probably the most often used reason for not helping out. The implication in this excuse is that you, the person who has taken on the role of primary caregiver, do have time.
• “What to Do about Mama?” p. 13: “You don’t understand the pressures of our jobs.”
2. “I don’t have the Money.”
• Let’s say you have a brother in a distant state who says he’d be happy to help out by paying for some respite care for you, the caregiver, but he just doesn’t have the money. Maybe he’s right. He doesn’t have the money. But there are other ways he can help, if he actually wants to.
• “What to Do about Mama?” p. 93: I believe my mother feels we were much better off financially than my stepsister and stepbrother (so less was expected from them).
3. “I Can’t Bear to See Mom/Dad Like That”
• They think you like it? Day after day you watch the decline. You help them with everything, including very intimate day-to-day functions, such as toileting. Do your siblings think this step has been easy for you?
• “What to Do about Mama?” p. 15: My mother-in-law’s decline was especially difficult for my brother-in-law; his wife made a point to express this to me very specifically. He had no confidence in his ability to be alone with her. With tears in his eyes, he told me that he saw himself as the “last bastion of propriety” in his relationship with his mother. I did understand how difficult it is to watch a loved one’s decline; his brother, after all, faced it every day. I felt, however, that was not an acceptable excuse for not assuming responsibility.