Art by Helena CooperThe past several years have led me farther and farther away from the pulse of activity relating to culture change in LTC. Although there is a part of me that misses being deeply involved, watching from the sidelines has given me a unique perspective on what is happening in the movement. I see an honest and earnest desire to declare victory in our struggle but, as long as we continue to segregate and institutionalize people who are ill, who live with cognitive impairment or who are frail– our work will be far from done.
Over the past two decades this struggle has introduced me to extraordinary people, people who continue to inspire me with their love, their energy, their creativity and their persistence. I have always felt honored to be in their presence. These people have and continue to fill my heart to the brim with gratitude and love. No one can deny that there has been progress in promoting a life worth living for those living AND working in LTC, but we have only begun to scratch the surface. The fact is that people are not meant to live and die among strangers. Surveys have repeatedly shown that a majority of Americans would prefer death to institutionalization.
Who deserves the blame for this injustice? No one person or organization can be held responsible for the mass institutionalization that has been visited on our elders over the past half century. The fault lies in cultural attitudes and bigoted assumptions about older people and, in fact, any group of individuals who are not seen as vibrant, active contributors to society. Our society sees people living with limitations as being less worthy and our culture pressures us to segregate them from the ordinary rhythms of daily life.
Although I have given years of my life to the effort to reform long-term care it now seems to me that the act of knocking on the doors of nursing homes and asking folks to embrace culture change in it’s many colors, shapes and forms is insufficient to the magnitude of the challenge we face. The problem is much bigger than we supposed and so our goals must also be BIGGER. Good people have poured years of their lives and blood, sweat and tears into the effort to change the culture of long-term care. Have we made a difference? Yes we have. But when the truth is told it becomes clear that we have impacted only a tiny fraction of the long-term care industry. Almost all American nursing homes continue to operate as institutions. Out of the 15,000 nursing homes across the country, in how many can you honestly say you would happily choose to live? Even if the answer is one, ten, a hundred, or a thousand, that is simply not good enough.
It’s time to take a close look at our impact and then ask some hard questions. Have we “raised the bar” in our field? I argue it is still not high enough. We know that there are still many institutions out there that have ignored the culture change movement all together. It is time to shift our focus to truly celebrating the value of every single living and breathing soul and honoring their right to a meaningful life as full members of our society.
There is much more work to be done and the question remains — are we in a position to fundamentally reform the vast majority of nursing homes (most often against their will)? I am gradually becoming convinced that the realization of our shared goals will require us to widen our gaze and create a broader coalition of people and organizations.
A better future beckons us, if we can hear its call. The future lies not with the institution or facility, but with the family and the community. It is in those domains that we will find our most lasting and meaningful success.
Jude,
You wrote: “…as long as we continue to segregate and institutionalize people who are ill, who live with cognitive impairment or who are frail– our work will be far from done.”
This is music to my ears. This is exactly my focus in my graduate gerontology work, and will also be the topic of my thesis. I would love to talk with you about this sometime if the opportunity ever arises.
Glenna Wilder
Marylhurst University – graduate gerontology student
Professional Guardian & Geriatric Care Manager
I worked for an Eden Home for eight years, but I needed to relocate two years ago. So I’ve been working last two years in a few other LTC homes that keep the old working standards, and I know the difference. All these two years I am experiencing the culture shock, and it is hard to adjust from better to worse. The tiny fraction is too tiny, we need REVOLUTION in the health-care industry.
Can’t wait til it’s better to best!
My husband is living with Dementia – possibly in the moderate to severe stage. Last year, when I could no longer realistically care for him at home, he went to live in a Medical Foster Home (MFH) sponsored by the VA. It is not ideal because after 60 years together, we are living apart. He is however, living with a compassionate and caring family and I see him often.
The foster home is about 30 minutes driving distance, one way, from my home and after a bitter winter that prevented visits, I decided I wanted him living closer and to have all services, day program, exercise programs etc under one roof – rather than the program I had pieced together. I did my research and on 16 June transferred him to a local nursing home that seemed to fill the bill. –On the morning of 21 June he became distressed and the week end staff did not know how to handle the situation. Paramedics and the police were called and he was taken to our local Psychiatric Hospital.
All this was unnecessary and disturbing to him and to us – in the extreme. Our daughter arrived on the scene and was able to ride in the ambulance with him to the hospital. He was discharged to her care. Back at the Nursing Home he was discharged to the family’ care Against Medical Advice. By 23 June he was back at the MFH. There was no way I would have left him at the nursing home.
Although He was not mistreated, he was in the care of people unskilled in caring for someone living with dementia. Having experienced this trauma with my husband and our local Nursing Home, I came away determined to broadcast the benefits of changing the culture of care….but how? and where to begin?
I agree with your post – much more work needs to be done. How do we “raise the bar” to reach the family and the community? When I talk about it with others – the acceptance and complacency is startling, yet I don’t know where to begin.
It is too late for my husband and for myself, yet I agree it needs to be done. Where do we start – How do we start to reach out to the family and the community?
I am so sad to read your story. I believe all of this could have been avoided and I say that with years of experience in nursing homes. People who do not want to be separated should never ever be separated. Your husband’s treatment as well as your families was a product of system upon system that are broken. Glad you found this website and that you are connected with caregivers and families who truly want to take these stories and work to end the madness.
This is a very moving story of love, loss and hope. I so wish I had the quick answer. I believe the best way begin is by continuing to have conversations. Increase awareness is your circle. Tell your story over and over again. Remind people that each of us wakes up every morning one day older. We will all be elders one day. If we challenge people to honestly think about how they want to be treated as they become elders we open the door to healthy, positive and, I believe, productive discussion. My best to you and your husband. He is lucky to have your love.
I find you words very helpful. Thank you.
What I so appreciate about Jude’s message here is that it is yet another reminder that changing the culture of care is a much bigger conversation than just what happens in a single living environment. Culture change touches all of us, no matter where we live. And to really have a significant impact on how we show up for each other in a caring community, we need to empower everyone, from the nursing home to the average neighborhood street and everything in between, to expect more. We cannot continue to “silo” care across the full continuum of care. The care in the nursing home impacts home care, which impacts care in the hospital, etc. Many hands make lighter work. Thank you for the rally cry, Jude. Yes, there is more work to do….
As Jude so eloquently points out, the people who have taken on the challenge of changing the culture of care for Elders and their care partners deserve our respect and deep appreciation. Sadly, though, we continue to be too few in number with too many of the 15,000 plus nursing homes across our country still running as institutions. This remains the larger issue that needs our attention.
The Eden Alternative has been dedicated for 20 years to working with our Eden Registry Members and other organizations willing to take on culture change. We uphold and honor this challenging work and believe it is the right thing to do, right now. Any effort to change the culture of care, wherever Elders live, is a vital part of creating a life worth living. Also a part of this vision is the work of our founders, Bill and Jude Thomas, and the other pioneers who are taking on the larger issue of ageism and segregation that dominate our societal views on aging. We all hold a piece of the truth in this essential work.
I hope that those who are doing the right thing today will support us in this larger arena to create a better tomorrow. We can certainly feel good about improving well-being for every individual we touch with our work now, but at the same time we can stretch and challenge ourselves, as Jude states, to envision and move toward a larger goal of restoring Elders to their rightful place in our society…living with us in true community. I believe this is the future we all want to see. Together, we are stronger.