There are many variables that contribute to the rising numbers of ‘too young’ men and women in nursing homes, but systems of elder care just aren't ready for those aging with conditions like cerebral palsy, spinal cord injury, autism or Asperger's or diseases like Multiple Sclerosis, Parkinson’s and so on.
Many seniors with since birth or long term disabilities, not yet of the typical nursing home age, have had full and productive lives, attended university, worked in a fulfilling career, married, had children, raised a family — all those things that everyone one else does. We’ve had to work out strategies very early on to accomodate our challenges but with the passage of time it gets more and more exhausting by virtue of the nature of our physical conditions or our mental capacities or our emotional wellness to keep on going. Time for a new plan.
Those of us living with disability who are out in the world on a daily basis doing all those ‘normal’ things have a whole host of issues not shared by our peers with disability who were cared for at home by parents who are now aging; aging out of their ability to keep up with the challenges of looking after a 50 or even a 60 year old son or daughter with disability. For them, when home with Mom and Dad or sibling caregiver is no longer an option, they become part of the nursing home stream. Levels of cognition vary, so that many may not worry or wonder about where they are so long as they have food and drink. Food is the great equaliser.
Nursing homes aren’t always the best choice when social stimulation is what was in place during Mom and Dad’s care. In the nursing home setting, there’s the risk of relegating the profoundly disabled younger person into a bed — it’s convenient, and they’re safe. But are they really?
If we’re going to focus on humanity and humaneness, we need more communities/homes modeled after L’Arche, founded in 1964, or The Boston Home, in Boston, Massachusetts, founded in 1881.
Today, in the Boston Home, politically correct terminology replaces the Dickensian labels, and the programs and services offered are more in keeping with inclusion and treating individuals as real people with real feelings, not just as patients to be ‘cared for’, in the clinical/medical sense.
Today, the home offers long-term to end of life care for adults with a range of disabling conditions that preclude independent living. The average age of residents is 58 and the residents are not defined by their disabilities. They’re people first.
Likewise, the L'Arche Community is another way for adults with disabilities to be safe and cared for in environments that meet their daily needs. Founded by Jean Vanier, a renowned philosopher, theologian and humanitarian, L’Arche has, with compassionate care, served the needs of the intellectually disabled for decades.
The Boston Home and L’Arche are but two examples of alternatives to long term care of the young and middle-aged and aging adults with disability, but there needs to be more such places and sufficient staff and volunteers to keep them going, especially given the reality that our senior population is growing in number and part of that population have needs above and beyond the typical aging person.
Imagine being 25 years old living with cerebral palsy and realising that the only place for you to live is a nursing home because it’s architecturally accessible and close to services you utilise on a daily basis - like going to university.
In nursing homes there are agitated patients with self-control issues, so a profoundly physically challenged person with cerebral palsy cannot defend herself against bites and hair pulling and punching. There has to be something else. There needs to be something else.
Even if the care and services of the home are perfect, there is a psychological toll to being decades younger than your peers. Unlike older residents, a young person may not be as stimulated with bingo games and crossword puzzles. Another missing link is meaningful conversation with peers. Then there’s the relationship experience with a potential romantic interest. Access to those quality of life necessities for the younger set are not easily found in a nursing home environment.
For me, though, adherence to scheduled meals would be a problem as would be a significant portion of the menu offerings. I would not be a good nursing home candidate before the age of 90! Perhaps if I was appointed social director or menu planner, I might survive. I’m all about the food!
Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca
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