I long ago stopped making impossible New Year’s resolutions. I quit smoking when I was ready to quit (I think it was in September, no New Years involved); I’ve never succeeded at dieting at any time of year. Ditto exercise though I do swim regularly in the summer – still nothing to do with New Year’s resolve. But I am recommitting myself to something: improving the state of long term care in our community
When I was preparing to open my Elder Law practice, one of the things I did to get familiar with the issues elders face and the regulatory schemes that are associated with them, was to volunteer with our local “Ombudsman” program. In the Jefferson Planning District (5 counties: Albemarle/Charlottesville, Nelson, Fluvanna, Louisa and Greene), JABA is responsible for providing Ombudsmen in local nursing and Assisted Living facilities. You can read more about the federally mandated Ombudsman program here.
As a volunteer ombudsman, I was assigned to a local nursing home to visit with residents and talk to them about questions, concerns, problems or any issues they might have with the facility where they resided. As a neutral 3rd party we could try to help advocate and intercede on their behalf, often anonymously so that the staff could not “retaliate” against the patient or resident who “complained” about their care. In that capacity I met many residents and their family members as well as a large variety of the staff from housekeepers to executive directors. We solved problems whereever the problem lay.
But many problems were so intractable that there seemed to be no solution. Confounding and infuriating. Some residents seemed broken, miserable and unable to be helped. Many were depressed, some were suicidal.
One of those residents died earlier this year. I’m writing this blog post to honor her.
In my practice area (elder law) I lose clients all the time. Its to be expected when when you deal with the elderly. I always grieve for their passing, but I generally take it in stride as the natural order of things.. But Anita was different. She was not old. Well, not compared to most of my clients or the other residents of the nursing home.
Anita was in her late fifties, perhaps early sixties. Under normal circumstances one doesn’t find many people that young in nursing homes. But Anita was had suffered a traumatic brain injury some years earlier. After being in a coma for several months, she awoke to find herself on life support. Her condition improved and after she had undergone many rounds of reconstructive surgery, her horrific automobile accident left her alive, but unable to care for herself.By the time I met Anita, she had been in a nursing home for several years. When I first met her, she was able to wheel herself about in a wheelchair. By late spring of this year (almost two years later) she could barely move and needed to be lifted from bed to chair with a Hoyer lift (sort of a person-sized block and tackle used by nursing staff to save their backs from injury in hoisting patients who cannot transfer themselves in an out of beds, chairs, toilets etc.) Anita required the aid of two people to assist her on and off the toilet or was left in adult diapers. Her looks had been destroyed in the accident despite reconstructive surgery; almost all her teeth had had been removed as well. Her hair was either a tangle of uncombed knots, or cut so short she resembled Sinead O’Connor. She had barely a shred of dignity left and no desire to live. Perhaps the most heart breaking aspect of Anita’s story was when I learned that before her accident, Anita had worked a registered nurse. She was extremely smart and capable. She worked in ICU and knew all about trauma victims. She knew what good nursing care was supposed to be. And she knew she was never going to get it in the situation she was in.
I discovered that despite her injury, Anita’s mind was still plenty active. And she had a very sharp – if dark – wit. Regardless of the motor skill deficit and behavioral issues, she liked to read, especially science fiction. She also became an avid member of the “Science Club” which we created for another severely brain injured resident (this one by stroke) who’s scientific mind was clearly genius level (he was a nuclear engineer in a previous life). Anita kept right up with him. Otherwise her days were a dull hum of endless bingo and relentless daytime TV as it is in most nursing homes.
Anita had many issues related to her brain injury – some of them behavioral. Many people don’t know that brain injuries – from trauma, stroke or other reasons – can cause severe emotional, psychological and behavioral changes in addition to physical impairments.
Bloomberg News service recently published a powerful expose on the care of brain injured individuals in nursing homes and it is well worth a read. The article is Brain-Injured in Nursing Homes Without Care Giffords Had. Click on the link to read it.
We tried desperately to get Anita some much needed physical, speech, and nutritional therapy. We tried wheelchair yoga and other alternatives. The staff was willing to make an effort but the universe and Medicaid were not. The director of therapy told me plainly that they were not equipped to deal with brain trauma-injured patients who require much more specialized care than the average nursing home can accomodate.
I’m not criticizing the nursing home (although I think it and most others can do far better than they do with what they have). I understand that they really are not equipped to deal with brain injured residents’ needs in the way that they should be addressed. This is a giant gap in our healthcare structure. And another ugly stain on our national health system.
This is not relevant only to brain injuries. I had occasion to represent a family earlier this year with a severely disabled adult son. His disability was not a brain injury but a genetic condition with truly catostrophic symptoms that could not be managed at home. He too was being warehoused in a facility not equipped to deal with his (admittedly) very demanding needs. Indeed, the only available solution was to spring him from a state psychiatric hospital and to admit him to a nursing home! He is still with us and, because he is geographically closer to people who can check on him and ensure that he is getting care that is up to snuff, his quality of life has improved somewhat.
I would like to honor Anita who died this past summer. Anita and all the other residents of long term care facilities that we lost prematurely in 2012. As I go into 2013, in her memory, I rededicate myself to continue to fight for improved long term care. Not just for seniors, but across the spectrum of our community.
I hope you will take note of the conditions we are warehousing these people in – our brothers, sisters, mothers and fathers – and put your shoulder to the wheel too.
Happy New Year to all.
