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Caring For Loved Ones When Our Best Efforts Aren’t Enough

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We at the Hartford Foundation talk a lot about what quality care that is comprehensive and coordinated would look like and how it would benefit older people.

But what if an older person is surrounded by really smart, knowledgeable, and caring family and friends who have helped put together the best possible care and it still doesn’t work?

Recently, a good friend of mine has found herself in precisely that predicament. Jane (not her real name) is 88, a geriatric social worker herself, with cognitive and hearing impairments. She needs a walker or a cane to get around, and lives alone in Manhattan. Her two daughters, who are both experts in social work and aging, live nearby in Westchester County. She also has multiple friends who are experts in aging and social work, as well as a wonderful geriatrician affiliated with Mount Sinai Hospital who is involved and very caring.

After Jane went through a period of several falls and being confused about her medications, her family and friends finally convinced her to have a nurse come in on a weekly basis. The nurse lays out her daily pills and makes sure that she is taking them and doing OK. Her trusted and long-time housekeeper comes by every other Saturday to clean and do shopping. Every day, and perhaps several times a day, a daughter and/or a friend will call to see if Jane is all right.

Given Jane’s deteriorating condition, both physical and mental, all of us knew that this set-up was less than ideal. We feared that any day, Jane could have a significant accident and we would all be chastising ourselves for not putting a better plan in place. But no matter how hard we tried, we were unable to convince my friend to seek a higher level of care. And she flat out refuses to leave her apartment; she says that her living situation is fine.

It’s not fine. One day, one of her daughters stopped by as planned and found her mother too weak to move, not very coherent, and with swollen legs. An ambulance rushed Jane to the hospital, where doctors determined that she was in congestive heart failure. Afterward, we discovered that she had not been taking her meds. The nurse had painstakingly laid out her pills for one week, indicating times each day that certain pills needed to be taken. There were post-it note reminders all over the kitchen, and yet the pill boxes from the previous week were still full of pills for most of the days. After several days in the hospital—at a cost that could have been avoided if a better plan had been in place—Jane’s condition stabilized and she was discharged home.

After this episode, her daughters and her friends, myself included, convinced her to accept an aide on a daily basis. Once again, we know that this is less than an ideal solution. However, Jane still refuses to consider an alternative living situation that would provide a better level of care and safety. My friend’s dementia is progressing, as is her frailty. We all know that we are again just waiting until the next episode, one that could result in a much worse outcome and could cost much more for the medical intervention—if that would even be necessary.

When I was a practicing social worker, people would often ask me about how to talk to and convince someone to move from their home into a more suitable housing arrangement. I am still asked the same questions today, and there are no simple, one-size-fits-all answers. Just because someone is a geriatric social worker, as my friend is, doesn’t mean that when it is about us, it is any easier.

How do people acknowledge their own frailty, especially when that person was/is one of the leading geriatric social workers in the country? How do family and friends who are themselves knowledgeable and accomplished in geriatric social work convince a loved one to accept care and then work together to coordinate that care?

And how many social workers does it take to change the mind of a frail person? We—Jane’s daughters, my friends, and I—all know what type of coordinated care is needed. We have the cooperation of an excellent geriatrician. How can it be that we, the experts, are failing this wonderful person and are not able to surround her with the appropriate care she needs and deserves—at a lower cost to society?

What is wrong here? What else could we be doing?

Those questions make for some sleepless nights. I don’t have the answers at this point. I don’t know anyone who does.

It would be ironic if the Hartford Foundation finally realizes its mission and we see the day when quality, comprehensive, and coordinated care is available and affordable—only to have it still not be able to help someone’s mother, someone’s friend, someone’s colleague.

More Blog Posts by Nora OBrien Suric

author bio

Nora O’Brien-Suric, MA, senior program officer at The John A. Hartford Foundation, trained in the field of gerontology, has a background that ranges from direct, clinical services for older persons, to policy, research, and analysis, Ms. O’Brien-Suric has over twenty years of experience in the field of aging.  More of her posts are on the Hartford health AGEnda blog.


Tags for this article:
Aging Well   Inside Healthcare   Relationships/Social Support   Organize your Health Care  


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