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Sunday, February 20, 2011

A Fate I Escaped

These last six months have been very hard. First, I was in the hospital and endured two bloody debridements. Second, I was on enforced bed rest and dependent upon my family to care for me for months. These two major events say nothing of the tremendous expense wound care has involved. The biggest expense was the purchase of a clinitron bed and the extended rental of a KCI wound vacuum. Even with all this I consider myself very lucky. I had a family that sacrificed and cared for me in my own home. For this, I am eternally grateful. But what I am most relieved about is that I am home and have been since I was released from the hospital. Accordingly, I am lucky times two because I escaped a nursing home. Most paralyzed people are not so lucky. Nursing homes are a necessary evil. Most such institutions are a place people go to die. Death in my estimation takes place long before the heart stops beating. Death in institutions is caused by inertia or lackthereof. The routine, the needs of the institution are paramount. No action takes place, indeed inaction is desired. Routine is serene and secure. People that rock the boat, ignore the routine are trouble. The routine is mind numbing if not deadly. What is worse, far more troubling, is that the age of people entering nursing homes is dropping. Paralyzed people often end up in nursing homes. Look at the history of the disability rights movement--some of the biggest advances originated in the halls of nursing home pushed by young people. Young people locked away and unable to have a social life. This is how the battle for mass transportation, specifically buses in Denver, started and spread across the country int he late 1970s.

The above thoughts came to mind when I read an article in the Houston Chronicle about the number of people with disabilities now living in nursing homes. According to the article, people age 31-64 have entered nursing homes at a higher rate than those 65 or older. People under 65 now constitute 14% of the nursing home population. I find this figure stunning, shocking in fact. Why do people under 65 end up in a nursing home? Simple: money. Most people cannot afford home care services. Young people end up in nursing homes because of traumatic injuries while others are institutionalized because they have chronic conditions. Enduring life in a nursing home at a young age is for me unimaginable. I have surely struggled since I have been stuck in bed and isolated. However my struggles pale in comparison to a person my age that finds himself or herself in a nursing home. I find it hard to fathom why we do not rely more on home based care. It is a far more humane way to live. One can maintain a level of dignity the best institution in the world cannot provide. I think it is not in dispute that community based long term care is the ideal. However this ideal is not well funded, long waiting lists are common in most states and the nursing home industry yields great clout within political circles. We as a people should be outraged. We should demand appropriate home based care that is not only available but affordable. No such demand exists. Sure groups like ADAPT forcefully push for community based care but how many Americans even know ADAPT exists. Sadly, not many. Part of the problem is that people do not want to consider much less seriously think of life with a disability. Like it not though most of us who live long enough will have to cope with some sort of disabling condition. What is also not considered is the social isolation that is often associated with disability. Why are people with a disability isolated? American society both socially and practically is not designed to be inclusive. Stigma is still attached to disability in spite pf the fact the ADA was passed 20 years ago.

I will be the first person to admit the social plight of people with a disability is markedly better than it was 30 years ago when I was paralyzed. This is a far cry from saying I am considered equal to my fellow Americans that wake up in the morning and stand up. Wheelchair use and disability in general remains a quasi tragedy in the estimation of most people. See my last post about Mr. Lakeman int he NY Daily News to see how this message is delivered in a routine everyday fashion. It is not hard for me to conclude we can reduce the number of people, young and old alike, in nursing homes if we valued the elderly and people with disabilities. The fact is we do not value disabled lives or the lives of the elderly. If we did, adequate social supports would exist. Supports that would have made my fear of a nursing home a thing of the past.


Becs said...

I had an acquaintance who had ALS. About two years after his diagnosis, he was quadriplegic, being cared for at home by his aging parents and various home health care aids.

He told me at one point that he wanted to go into a nursing home. I knew he didn't understand about the deadening routine of a nursing home, that his internet time, his waking and sleeping time would all be dictated by the convenience of the nursing home staff.

It was a relief when he changed his mind and decided to remain at home.

Assiya said...

I am glad to hear that you are starting to be able to leave the house again.

It is terrifying the hear that the average age of people in nursing homes is decreasing. And the ways in which some/many nursing homes keep their patients "easy to manage" is just as scary.

Carl Thompson said...

I'm glad you escaped! Nursing homes do not sound like a very good place to be.

Eric Fischer said...

There are two trends in society that are worrying to me and fall into the realm of care: one is that traditional societies where the parents or even grandparents live together because they are in need of assistence does not exist if indeed it ever did like in traditional far-eastern societies. Apparently the disengagement from parents, manifesting in stuffing them into 'old poeples' homes is absolutely necessary for society to 'advance', become bigger, better, richer, more complex. How can I possibly take care of my parents, it will interfere with my career!

Secondly the case in Canada (see Claire's blog) about a Hospital deciding a child has had enough and time to let her die, which has happened in England before (and let's not forget the land of euthanizing severely health compromised babies: The Netherlands) IS the slippery slope William. Next will be you in a nursing home where it is decided you no longer have quality of life. Dear Lord, "Logan's Run" anyone?

william Peace said...

Becs, I can understand how a person may feel compelled to enter a nursing home. When I first got home and was still pretty sick and overwhelmed I felt it might be easier for my family if I went into an institution. Thankfully they were forcefully opposed to the idea.
Assiya, It is a joy to get out of the house. It puts a smile on my face a mile long. As for nursing homes, easy to manage means compliant. And all sorts of chemicals, medications, are used to insure that compliance. It is hard to fathom how people who do this live with themselves.
Carl, Nursing homes are necessary evil. Sometime family or friends cannot provide the support for loved ones. But they are places to be avoided at all costs.
Eric, As always you bring up interesting points. I wonder to what degree nursing homes are an American phenomenon. And yes, a slippery slope exists and rears it head on a regular basis. Amazing tome how quickly the slippery slope argument is dismissed or rationalized by health care professionals.

Unknown said...

William, I have been reading your blogs and I am totally amazed at how things hit so close to home for me. I'm a C5-6-7 quad, going on ten years now. I'm at a crossroads in my life, at a point to where I am facing going into a nursing home. I dont know if I can do that. My quality of life has done nothing but deminish over the past ten years, and isolation from my own family has really hurt. I dont want to make this a lengthy comment, it takes so much effort just to type this. But you certainly have my total attention, and I yell "yeah!" as I read your blog. I am seriously thinking of taking the VSED way out. I'm in my mid fifties, and I truly believe my best days are behind me. I have held out with false hope all these years actually thinking one day I would wake up able to function as a normal person again. Its not going to happen, and I am tired of living this way. I am sure my family will think I'm crazy. But seeing how they stopped inviting me to family functions like christmas, thanksgiving, birthdays and yes even not telling me of my grandmothers death so I could attend her funeral. I'm tired of feeling sub human, a "chore" to be taken care of. I feel so guilty as my sons and daughter take time away from their families to care for me. Take care my friend :-)