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Madge Kaplan

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

Comments   

# Carolina 2014-07-11 06:28
This is an excellent post on such a relevant topic!

I am doing my PhD at Oxford Brookes University exploring the experiences and needs of carers at a distance in End of Life Care. The study has been approved by the UK's NHS Ethics Committee and we are currently recruiting distance carers for an online survey.

If you would like to know more about the study: https://www.facebook.com/pages/Carers-at-a-Distance/1515393175339708

If you would like to fill in the short online survey (around 15-20 min): https://brookeshls.co1.qualtrics.com/SE/?SID=SV_57rCDTlSu2ZVrqR

Many thanks and best wishes,

Carolina

Twitter: @DistanceCarers
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# Kathy E 2014-03-18 12:44
Thank you for sharing your story. As a nurse with many years of case management and geriatics behind me, caring for my 89 year old father in law for the past year was one of my life's biggest challenges. It is hard to admit that this experience forced me to use all my nursing skills and knowledge and I still couldn't get things right, I needed assistance and dad needed more than I could provide. We try our best to do what is loving and supportive, but it can still be overwhelming. This experience has not only made me a so much more understanding to the joys and struggles of caregivers, it has changed my direction as a patient advocate going forward. Thank you for your transparent feelings, strengths and weaknesses.
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# Donna Cetroni 2014-03-18 08:29
Amazing Grace! This had to be said. Beautiful....
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# Diane Hage 2014-03-18 08:18
I have just started down the road of having both my parents living with me. My mom, now 89, cared for my dad, 91, after a series of medical events. She and I are both nurses. She now faces health challenges of her own. Bringing them in with me was a mutual decision. I am alone, facing divorce. Each day brings joy (seeing how happy my father is with my cats) and sorrow (having to repeat and repeat) My daughter said, "Now all the people I love most in the world are together". Sigh:) Thank you all for sharing your stories.
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# Madge Kaplan 2014-03-17 19:54
Hi everyone. I am moved by your response to my piece and all your comments about your own situations. "Rinse and repeat" is a very apt description, Kathy. I am surrounded by colleagues who are in turn working with others to bring greater attention and new designs to caring for the elderly especially. But, it's a long slog. The structures and payment systems still weigh heavy on what's possible. Still, if anyone is aware of some 'bright spots' do tell!
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# Ren 2014-03-17 18:11
I am in tears as I write this, because I know first-hand how excruciatingly difficult being a family caregiver is, and although I am a Registered Nurse, the healthcare system for our aging population is difficult to navigate.
This is my second go-around with dementia- first my husband, then 48, with Wernicke-Korsak off syndrome, eventually to a nursing home where he passed away Jan 2013 and now my mother, 86, with moderate dementia that's moving fast, recently moved to assisted living. At some point, I will need to move her to a more secure environment and although the assisted living facility has a locked wing for memory care, it is at significant cost.
Family caregiving leaves the caregiver emotionally, physically, mentally, and often financially drained. In my case, my mother is unable to cognitively understand her condition is worsening and that she requires supervision.
This is truly the 'long goodbye' and the most painful journey a family can embark upon.
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# Kathy 2014-03-17 17:54
Madge, it’s like our society is stuck on rinse and repeat. We’re not learning anything from these experiences. Like you, my sister and I are challenged to meet my mother’s needs after a series of strokes. Not only does she have a partner who does not have her best interests in mind, she is also resistant to our involvement, despite having had close family ties until now. Like you, I am also employed in healthcare, as is my sister’s family, and yet my mother’s healthcare providers are ambivalent at best, ignorant at worst. Her PCP told my mom of an organization that would teach her how to cheat the DMV review if and when she is asked to give up her license to drive.
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# Rosalyn 2014-03-17 17:39
I wholeheartedly agree that something needs to be done. I cared for my Mother in my home for 5 years before she passed away at the age of 102. I was only able to do this as a result of having been a physical therapist. Even though I had worked with many geriatric patients it is so difficult to see your own parent decline and I had very little support from other family members. Unfortunately, Medicare's home health coverage is limited and cannot be relied upon for someone who needs 24 hour support.
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# Madge Kaplan 2014-03-13 11:12
Thanks, everyone, for your comments. One thing among many that I could add to this story: many in the clinical world caring for my father, with a few exceptions, didn't want to know about the wife and her difficulties. Even though this was clearly the primary person with my father day in and day out. There was no system to incorporate this very relevant picture and variable impacting his recovery. Those that saw the challenges sympathized but avoided at all costs. "Your father is our patient. Not his wife." Has this gotten any better?
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# Annette Cass 2014-03-17 19:08
I was so upset with the problems we had with long-distance caregiving of my father-in-law -- that I've devoted myself to volunteer patient advocacy at my church. Mainly with people whose family is out-of-town, I take the person to appointments (if needed), talk to them about their issues beforehand, sit in on the appointments, and send a summary of the appointment to their family members. Also find myself helping out when the person is hospitalized. It's a tough world out there.
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# Beth 2014-03-17 11:52
So sad and so true. I started caring for both of my elderly parents in the mid-90's. My father was in his 80's and had heart disease while my mother was in her 70's and had Alzheimer's disease. I had "help" in the home until my father died. Then I had to place my mother in LTC. I had her in 3 facilities over the course of 7 1/2 very long years moving her due to poor care in the first two facilities. My mother passed away 10 years ago. Even though I am a registered nurse I still found it very difficult to navigate the system. I worked full-time, cared for my own children and helped my parents. It was a hard road.
Beth
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# Madge Kaplan 2014-03-17 13:37
Thanks, Beth. These experiences are so etched in our memories. I and I'm sure others appreciate knowing yours.
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# Paula 2014-03-13 12:35
First, of all, Madge, thank you for sharing your very personal experience. I often wonder if the human side of public policy ever enters into the conciousness of the policy makers. Although my situation is far less complicated than yours-- I live in the same building as my parents, and they are still married and living together, I still find the coordination of care to be exceedingly complicated. I have also encountered the response that the sole focus is on the individual "patient" and not the household. Furthermore, it is sad to think about those elders who do not have family and are at the mercy of "the system". Thanks for bringing these matters out of the shadows. There is plenty of opportunity for solutions.
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# Nancy 2014-03-09 21:50
Been there, done that- not so long distance, but long enough so it all rings true- the feelings of then and the lingering of those now. I will send this on to all my friends who are still in the throes of it. I'd like to think we are learning something form all this, but am concerned when it comes my time, much will be the same...except that there will be no me to do what I did- scary. It was an honor but certainly very hard. And as a NY Times piece said, " And suddenly,they are gone."
Thanks for the piece.
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# Barbara G. Matthews 2014-03-09 13:30
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) might help to mitigate some of the stresses of caregiving, but in reality no one is ever able to completely control (not even close) how the process will play out. I am in total agreement with her 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.
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# Peggy lynch 2014-03-08 15:54
Bravo Madge!
Thank you for writing this. Your willingness to say the hard stuff, is appreciated I will make sure Jan sees this.
It makes me think about how we, need to prepare for our own, not so golden, years.
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# Maureen Bisognano 2014-03-08 13:56
Madge,
You've focused on a new group that we need to care for and about...the caregivers. Thanks for this powerful essay.
Maureen
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# Muriel Murch 2014-03-08 03:57
Dear Marge,
I remember this journey so many of us daughters take. When my mother became ill in 2000 I commuted from California to England for a year while I wound down my radio work at KWMR and got my family on board for plan B. It was her Indian Cardiologist who, when I told him of my life and plan replied, "And then you will come home and take care of your mother." I did, It was hard yet I have no regrets. Still lots to think about as nurses, daughters and now older parents. It is never perfect and we cann't ever fix it. We can just make the situation better the best we can.
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# Jackie Donovan 2014-03-08 03:29
As an R.N. and eldest child, I was also a long-distance caregiver for both my parents. Madge captures this perfectly. Now, however, I have been the caregiver for several years for a chronically ill husband who requires an increasing amount of assistance. The wife of Madge's father was not perfect, but I would suggest that she may have done as well as she was able. It is a lonely sad, and difficult time.
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# Ann Gordon 2014-03-07 22:16
Thank you Madge. This is very well written and very important.
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# Yvonne Daley 2014-03-07 21:59
Thank you, Madge, for this heartfelt and informed essay on a subject too many of us not only wrestle with but see as our own future some day. Chuck's family is coping both up close and from a distance with his mother's health care. It's a nightmare, a travesty. In general, we pay those who care for the youngest and the oldest the least. As a country and a society, we need to re-prioritize our values. Simultaneously, for people like me, your piece is a reminder to make plans for the long run.
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# joyce fish 2014-03-07 21:02
Thanks for yet another reminder that I need to move closer to my daughter, who works in a health care advisory group. But I'm concerned about how my presence will impact her life, both when I'm ok and when I need helpl Need to make the move while I can still build a life of my own. Not easy at age 85.
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# Robin Schoenthaler 2014-03-07 17:59
Riveting essay. Another spectacular take on the issue is located here: http://www.newyorker.com/sandbox/sketchbook/chast-parents/

As I've said in other forums, I only hope and pray that I can learn from the lessons of my parents' generation and not inflict the same torture on my children. Long-term planning, honest discussions, realistic appraisals of outcomes and options: I pray I can carry these out when facing the same difficulties as my days wind down.

Thanks for writing.
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# Dana Faber 2014-03-17 17:29
What a telling essay. Thank you for sharing. It seems we are losing the battle in overhauling long-term care (LTC) for our aging population. The fact our parents and grandparents continue to have to spend-down their savings and assets to cover LTC is just appalling. The Feds worked so hard to write a 2500 page healthcare reform document, only to think of the young and healthy and not the aging population and their families that are struggling to care for them let alone juggle the financial side of it.
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