http://bangordailynews.com/2011/07/25/health/long-term-blues-umaine-stud...
Last modified July 25, 2011, at 10:34 p.m.
WATERVILLE, Maine — Long tables were set up for a game of bingo last Friday morning when 44-year-old Kara Janes of Castine rolled her wheelchair into the sunlit activity room at the Lakewood Continuing Care Center.
Using her strong left arm and hand, Janes propelled the manual wheelchair across the polished tile floor. Her right hand lay useless in her lap. Oxygen tubing looped across her face. Although she was initially cheerful and sociable, it didn’t take long for her eyes to fill with tears as she struggled to describe her experience at the 105-bed nursing home.
“This is not in any way an evaluation of Lakewood. It’s my own emotional journey,” she said. “I told myself it wasn’t going to be the way everyone said it would be, but it is.”
In reality, Janes is in good health and does not need nursing home care.
She is a graduate student in social work at the University of Maine, who has elected to spend 10 days at Lakewood in order to build empathy for her clients and enrich her clinical understanding of the long-term care environment. Her placement is coordinated and evaluated through the “Learning by Living” project at the College of Osteopathic Medicine at the University of New England, which has campuses in Portland and Biddeford.
On Friday, midway through her stay, Janes stressed that the staff at Lakewood has been kind and competent. The facility itself is clean and safe. And her “diagnosis” — a stroke resulting in right-sided weakness and a case of pneumonia due to an impaired ability to swallow — is not real. Janes is due to be “discharged” later this week and will go home to her husband and children.
Nevertheless, Janes said she has felt lonely, bored and depressed at Lakewood. Stripped of her identity. Dehumanized. Degraded. And committed to changing the way Americans are treated as they age.
“I have this overwhelming sense of responsibility that I need to be the voice for the people who go through this day after day, month after month,” she said.
Although most of the Lakewood staff know her real identity, Janes has accepted no special privileges during her stay there. She has been fed a pureed diet. Woken in the night to be assisted onto the toilet. Lowered naked by a mechanical lift into a whirlpool tub.
“You lose your independence. You can’t think for yourself. Everything is done for you,” she said.
Janes declined to have any visitors during her stay — not even her immediate family — knowing that many nursing home residents go long periods without seeing a single familiar face from their earlier lives. On her second day at Lakewood, her own mother was hospitalized, she said, and she has received little additional information. She has missed her husband and children fiercely. She feels isolated from her real life.
“There is such a disconnect,” Janes said. “You don’t know … the ins and outs of the daily lives of your loved ones.”
Lakewood administrator Shannon Coro is not dismayed by Janes’ emotional account of her experience. Lakewood agreed to participate in the Learning by Living project in order to gain valuable feedback on its performance while supporting the education of professionals who, like Janes, aspire to working with the elderly, Coro said.
“We went into this [project] with our eyes open,” she said.
There is no question that many nursing home residents go through a period of sadness and disorientation when they transition from independent living into an institutional setting, she said, but high-quality nursing homes like Lakewood work hard to engage their residents and to build a sense of community.
There’s no place like home, but a busy in-house social calendar, regular shopping excursions and other “field trips” along with a cadre of dedicated volunteers help make Lakewood more livable, Coro said.
She noted that Janes, like most of the residents at Lakewood, has made choices about the care she gets. Residents have control over what time they get up in the morning, what they eat and what they wear — even whether to be nude or covered in the whirlpool bath, she said. They can choose to participate in organized activities or not.
“It takes time to get used to a new home,” Coro said. “This is what we do, and we do it well.”
Developed in 2006 at the University of New England, the “Learning by Living” project places students in long-term care settings in order to develop their empathy, self-knowledge and clinical skills. Program founder Marilyn Gugliucci, director of geriatrics education and research at the UNE College of Osteopathic Medicine, said 28 students in Maine, New York, Massachusetts, Ohio and Pennsylvania have participated to date. All of them, except Kara Janes, have been medical students.
Janes’ experience is not uncommon, Gugliucci said, although her particular professional training may have heightened her emotional response.
Midday through her stay, Janes was still “looking through her social-work persona,” Gugliucci said. “It takes a while to get past that to the essence of yourself.”
Students in the program typically experience several days of loneliness, homesickness and depression, hitting an emotional low on day four or five, Gugliucci said. After that, they most often come to terms with their new environment and find themselves part of a powerfully connected social community that cuts through age differences and defies stereotypes.
“Students agree this project helps you learn about yourself as a person,” she said, “and knowing who you are, you provide better care.”
Janes agreed that the experience of living at Lakewood, even for just a few days, will powerfully impact her professional practice.
“This should be part of everybody’s training — doctors, nurses, everybody,” she said. “I am surprised it hasn’t been required yet.”
This post hit home for me as my father has been in a nursing home for nearly 3 years.
Visiting him often I realize how seldom many of the other residents have visitors. He is on a secure ward as he suffers from Alzheimers and Dementia. He is also wheelchair bound now and relies on the staff for almost all of his needs. in spite of not being able to carry on a coherent conversation he still remembers my name and never fails to say "thank-you for coming". I send love to every resident on his floor as I pass them in the hall. They so want a smile or a pat on the arm. They love to hold my hand as they walk down the hall. My father was not vey demonstrative with his emotions during the years he was at home but he certainly holds on firmly to my hand and appreciates the smiles that are just for him.
As I view each face and observe the constant decline of vitality in each individual resident i cannot help but see myself in each face and embrace each heart in my own.
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ON “SEPARATENESS”
We enter into this world, connected to the physical source
of our existence, our mother, and surrounded by water,
a strong, flowing element of the physical universe.
We are not alone -
we are held by many and we reach out to all.
The physical cord no longer connects us to our “source”
but we will forever be connected
at a deeper level of our being,
as a reminder of the oneness of all creation.
We are not seen as “separate”
when we are in the infant stage of our development.
All people reach out to hold us
without thinking to ask us for permission. …
And that is as it should be,
in that we desire to experience and to express love
and we have no regard for boundaries or limitations.
As we grow physically,
we enter into the seeming reality of a world
which experiences separateness,
through the expression of the “individual”.
We learn to see ourselves apart from the universe
and separate from those around us.
We begin to strive to protect ourselves,
to keep things to ourselves and for ourselves.
Gradually we lose our sense of oneness with all.
This creates a deep loneliness
and a feeling of “unlovedness”. …
We work harder to achieve
the feeling of success and control in our lives,
only to find we keep pushing away from us
the true experience we so deeply desire
- complete love and knowing ourselves as one
with the Creator and all creation.
Then as we move into the final stage
of our physical experience,
many of us once again become dependent upon others
for our care in every way.
Once again we cannot choose who enters our room,
who changes our clothes,
who holds our hand,
who washes our face,
who feeds us or puts us to bed. …
We become reconnected with society
through our loss of “individualism”
and we feel like we have lost ourselves.
Nothing has prepared us for this stage
so we do not recognize our re-initiation into “oneness”.
Nothing has prepared society for this stage
so it does not recognize its role
in expressing this oneness.
Love is not given as freely as it is needed -
for we have been taught to be careful
and to express love only in certain ways.
Yet love is all there is and all that is needed
to recreate the awareness of the unity of all souls….
So as we prepare to leave our physical bodies
we can only hope to be free once again
to express and receive love unconditionally
in an exchange with all
who will recognize their oneness
with us and all.
Marcia Havaris
I read somewhere that the average life-expectancy for a nursing home resident is 3 years, 7 years if they have Alzheimer's.
Several year's ago, my dad's mind started slipping into Dementia and he could no longer care for himself. His doctor admitted him into the psyche ward of the local hospital "for his own good." I was then called upon to "do the right thing." I was emotionally torn when I put my dad in a nursing home (against his wishes). My dad knew his mind was slipping and he was in the process of drinking himself to death. (He was a long-time alcoholic and that's the way he wanted to go.) Looking back on it now, I think his choice would've been a more humane way out than being under nursing home "care". Who was I to deny him the right to determine his own death?
The nursing home staff restricted his smoking (his last and only pleasure) to one cigarette every two hours. They saw him as an inconvenience and treated him like a child. Because of his mental state, he was kept under lock and key. He lost any dignity he once had. I watched him decline, as they continued to prescribe more and more drugs and increase the dosages. The official cause of death was that he "stopped breathing." I thought, duh, I'd stop breathing too, if you gave me that much dope!
Years ago, people lived in nuclear families with 3 or more generations living under one roof. People took care of their own and their loved ones died at home. I had considered taking my father in, but circumstances at the time prevented me from doing so. I was a single parent and was already struggling to take care of my kids by myself.
Maybe one day, people will return to the old ways. To the days when we took care of each other. When people depended on their neighbors to get by. There was a strong sense of community. When it took a whole village to raise a child. When neighbors helped watch each other's kids and gladly shared what they had with one another. Because they knew it was reciprocal 'give and take' and it felt good. Then we won't need nursing homes anymore.
I have posted this article from a local Maine, USA newspaper (you realize Maine has less than 1.5 million people and is one the most poor states in the USA) because Maine is leading the way in changing the way the elderly and incapacitated (mental, physical emotional) are treated. This change is being led by those who are first wave and second wave Indigos-Rainbow children who are now adults. They are experiencing the system as it is to empower themselves to compassion and become a cataylst for change. Changing the way we view the elderly, the infirm, the incapacitated. The way we view aging--- I see the return of the Elder and the Crone. The seeing of each age of having its joys and strengths.
I also see the nuclear family structure changing to becoming more micro-community oriented where everyone works together in symbiotic harmony for the good of all individuals that are part of the whole.
In the future, I see the whole concept of nursing homes change to a community of people all working together with their gifts to create an environment of healing and love and compassion and personal integrity.
I bless you with Love, Noa and Marcia for sharing your personal stories.
Love--
Fairy