ELDERCARE – Can’t We Do Better?

by Kevin L Miller

Recently the well-respected “full service” retirement community where my parents are living into very old age, asked me to participate in their “customer satisfaction survey,” which turned out to be a perfunctory and shallow questionnaire about surface appearances rather than the real life experiences of the residents. Our family has found it absolutely essential to provide a family member advocate and caregiver on campus for eight hours per day, at least three or four days per week. Even with our involvement, major medications are missed, essential dietary guidelines are violated, and doctors’ orders are violated or overlooked. But those problems are minor in comparison to the heartbreak our parents are experiencing due to being separated after 68 years of marriage. So, I wrote a letter to the retirement community in order to give them real customer feedback and ask them, “Can’t we do better?”

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Why am I writing to you?

Yesterday one of your research associates called to interview me for your Customer Satisfaction Survey. As the son of two prominent residents, and friend to many others in that community, I have been very involved in advocating for my parents’ care and quality of life over the last several years. This experience has challenged me to think deeply about the issues you are facing in serving my parents’ needs, and some challenges you and the entire eldercare system, along with associated medical and living services, will have to grapple with in the future to offer eldercare to the next generation target markets, which may have very different circumstances and needs. I indicated to your interviewer that I would be happy to offer a much longer, in-depth interview by phone or in person about these expanded observations and implications. She invited me to write you a letter. So here it is:

1. Life-long lovers & companions separated after 68 years of marriage… How can this be right?

Seven months ago in August our family gathered in my parents’ large independent living apartment at the retirement community to celebrate their 68th wedding anniversary. Even then, we knew that a week later Dad would have to move into the skilled nursing facility (which the residents call “the hospital”) because he has advanced Parkinson’s Disease. The combination of Mom’s presence, family help, and in-home unskilled aides was no longer sufficient to safely and effectively care for him. So, on Aug 31, 2015, after 68 years of marriage, our parents were separated.

Before that day Mom had never lived alone for even one day in her life. Dad lives for her, and since his move into skilled nursing he has not stopped asking to return home to be by her side. Despite serious health issues of her own and great difficulty walking, Mother spends every morning and afternoon with Dad. I am there full time, three days per week. Other family members and large numbers of friends visit frequently. But our parents are heart-broken. Dad feels that he has fallen into a “trap from which there is no escape,” and our entire family is engaged in a constant racking of our collective brains to try to find a better solution. So far we have failed.

Could your retirement facility lead the way to innovate new models of eldercare that would allow couples to remain together even when they each develop very different kinds of care needs?

Confession and apologies

Here I must confess and apologize for the fact that I have precious few answers or solutions to offer regarding these very difficult challenges. But I think my family and I do have some sense of the kinds of questions that are important to ask at this juncture in the history of American eldercare, and more to the point, at this stage in your institutional mission. These are questions about what people need and where it hurts. They are questions that point to an evolving society and economy with rapidly changing requirements. How will you and other eldercare institutions survive the tsunami of change that is coming? The question above about separating life-long lovers is one piece of the puzzle. Here are some other questions:

2. How can you maintain the highest possible quality of life and sense of autonomy for residents after they become physically invalid, lose their short-term memory, and/or succumb to dementia?

Dad lives in the present moment with no memory of the recent past, but he has a strong mind in many other ways. He frequently asks where he is and does not understand why he cannot be with Mother. If he had the ability to retain a basic understanding of his current situation, it would be so helpful, but he can’t.

Yesterday I finished reading aloud to Dad and Mother his entire 242-page autobiography about the part of his life that he DOES remember — his excitingly active life and brilliant career as a minister, college professor, dean and vice president in four colleges, and eventually president of a Los Angeles university and finally president of Bethany Theological Seminary. It’s a riveting book. Everyone’s life is a riveting book! Dad is lucky. He has family with him for four hours every day and many other visitors come as well. I notice that the others on his ward seem to receive very few visitors. Some sit in their wheelchairs in the hallway, eyes glued to the locked entrance, hoping to see a familiar face, or figure out a way to escape. Many are abandoned and alone. Dad is dissatisfied with his current situation, but many of his neighbors are hopeless and bitter. Again, Dad is one of the lucky ones.

How can eldercare institutions raise the quality of life for all residents, including the less fortunate abandoned ones?

3. How can your excellent staff be empowered to enrich the lives of the residents?

All the residents in Dad’s “hospital” ward live in a beautifully appointed warehouse where they are tended by very kind, well-meaning, efficient and even loving staff members who do not have enough help to give each individual the attention s/he deserves. Some of these staff members are really stellar: The head nurse is a saint — always smiling and generous, no matter how much chaos descends upon her. Several certified nursing assistants are like that too. And one big guy is truly wonderful with our Dad who says of this gentle giant, “We pall around a lot. I like him.” One day when  he came to Dad’s room to walk him to supper, he asked Dad if he was ready to eat. Dad replied, “Yes, but I’d rather sit and talk with you.” Of course, that’s not possible. The gentle giant is constantly in demand with way too much to do. And this is only one of his two full-time jobs, which suggests that he may not be paid well enough for the heroic services he renders.

It is worth noting here that, while the full-time staff is simply excellent, there are not enough of them to fulfill the service demands of such a large institution, which is often forced to hire outside contractors — both skilled nurses and unskilled aides — who do not know the residents or their needs. I have talked to some of these substitute contractors, and they report that they do not receive any orientation or instruction but are thrown directly into assignments without preparation of any kind.

Could your institution expand its wonderful full-time staff? Could some kind of orientation / instruction be offered to outside contractors if they have to be called in to fill gaps? I’m sure the contractors are well-meaning and hard-working, but nobody can do any job without some form of preparation.

4. How can communication & information exchange become seamless in the eldercare system?

When we had to move Dad from their independent living apartment to the skilled nursing facility, my brother and I sat down with your very responsive administrators to discuss Dad’s special needs — key among them, a “soft mechanical diet” of pureed foods and thickened liquids to prevent aspiration which is one of the chief causes of death among advanced Parkinson’s patients. They agreed, but the news somehow did not get to the skilled nursing staff. We had another meeting a week later to underscore the fact that the soft diet and thickened liquids are imperative. Even six weeks later, when an outside contractor nurse was on duty and tried to give Dad regular thin liquids, I discovered that the requirement for thickened liquids was not on his chart. She checked! It wasn’t there. We added it.

During the same period when Dad was moved to skilled nursing, Mother was rushed from the retirement community to the city hospital four times in six weeks, and twice hospitalized. If I or another family member had not been there to brief the emergency and hospital teams on the specifics of her condition, they would have been working blind with little information about her recent medical history, episodes, and general condition. She also has short term memory problems now, and besides, when she was taken to the hospital, she was not in any condition to answer any questions at all.

After her last hospitalization, Mom was released to the short-term skilled nursing facility on your campus, where she stayed for nine days. I found out near the end of that period that somehow, her Coumadin medication specifications had not followed her to the hospital and then to short-term skilled nursing, and they had stopped administering this very important heart condition medication!

Is there a way to be a lot more comprehensive about detailed communications and information exchange among the various wings of the eldercare and healthcare systems?

What other forms of communication and information exchange could be added to the current regime to enhance the quality of life for all residents and their loved ones and caregivers?

5. How will eldercare institutions appeal to rapidly changing future target markets?

I know that there are lots of conversations going on about this question throughout the eldercare world, because the administrations of these institutions see a tsunami of change coming: Boomers have not been able to save for retirement as successfully as their parents did, and often have very different hopes, needs, and expectations about the whole nature of retirement than did the Greatest Generation. Indeed, we Boomers tend not to think of ourselves as “retiring” but as transitioning to a new lifestyle in which we will have the opportunity to fulfill new missions and realize some of the dreams we were not able to pursue during our professional years. We tend not to envision ourselves in a standard retirement community, because that model looks limiting and narrow to us. Many of us want something that seems more like the “real world” and less like what I have called “The Disneyland of Death.”

We wish our American society might wake up and understand how much experience, expertise and, yes, wisdom, we have acquired over a lifetime of hard work, and value what we have to contribute. In short, many of us want to be more fully integrated into society instead of being cordoned off in beautiful warehouse facilities for the elderly. We know that we have a lot to offer and we intend to do so. As I think about my own very diverse group of friends, I believe they would ask questions like these:

  • Where is the diversity in retirement communities? Why are there no Black, Asian, Hispanic, or Gay, residents? Why don’t the campus demographics look more like the rest of America?
  • If I lived there, where would I make my huge sculptures and paintings?
  • How would I be able to build rooms onto my dwelling? I can’t live without building things!
  • Where would I rebuild my race cars and work on my motorcycles?
  • How could I start my new cottage industry and sell my products?
  • Where would my rock band practice for many hours every week?
  • How could I keep all of my animals and plants?
  • How could I have a garden and put up a pantry of canned and preserved foods?
  • The doors to the independent living apartments are locked at 8:00 pm! How am I going to have a night life and bring guests home if I can’t get in after 8:00 pm? I’m NOT a child!
  • What if I want to host a seminar or symposium or a big family reunion or a political rally or a church event and have lots of guests for a whole week?
  • Can my spouse and I stay together even after our medical needs diverge?
  • Will my same-sex spouse and I be accepted in this retirement community?
  • I haven’t saved enough money for retirement. Do you have any options for me?
  • How can I retain control and autonomy over my own life all the way to the end and be allowed to die the way I want to die? I insist on the most fulfilling death possible for me.
  • Can I stay at home with access to increased healthcare and other services?
  • I don’t want to live in an “old folks home,” but I know I’m going to need some kind of help. What are my options? Aren’t there any other models of eldercare that I can consider?

Potential Next Steps and an Offer

As previously advertised, this letter contains lots of questions and not many answers. However, aren’t some of the solutions implied in the questions? I think they are. And if you pose these kinds of questions to a diverse group of stakeholders – your own administrators, staff, independent contractors, suppliers, residents, their families, prospective customers, and outside experts – in a multi-day ideation session, you will begin to hear some innovative concepts for new and exciting approaches to eldercare.

This is clearly beyond the scope of your current survey, but if you are interested in taking a next step toward exploring new forms and approaches to your products and services for the future, my brother and I have been offering those kinds of ideation programs to Fortune 500 companies and other institutions for well over 25 years, and we would be glad to be of service. Some of our team would stay out of content to facilitate the innovation session, and others would sit with the participants and offer ideas to add to the mix. Of course, your decision-makers would make the final selection of a set of ideas to develop for further consideration.

Finally, if your administration would like to discuss any of these questions, ideas and proposals further, please feel free to respond to this letter or give me a call. I wish you all the best in your survey. I am confident that current residents will respond very positively. The themes explored in this letter are primarily focused on how to appeal to future target markets.

Sincerely, — Kevin

Post Script: Two staff members acknowledged receiving my letter, but no further discussion of the letter was pursued. I continue to wonder, “Can’t we do better?”

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