In a recent commentary I addressed the issue of mental health and emotional wellness and how lack of it affects every aspect of life.
As I age with disability, I think of parents, some of whom are entering their 9th decade, still caring for senior/adult children with challenges to full participation ‘in the world’; a son or daughter who is 50, 60, even nearing 70! I cannot begin to imagine the stress — aging parents coping with their own frailty of both physical and mental health while worrying and wondering about what’s to become of their adult child whose independent living was challenged by disabilities. Like their grown up son or daughter, they’ve become medically fragile yet they press on. In their view, however well intentioned, there’s no one who can better care for their child.
So entrenched in that belief, they ridge against the very thought of accepting full-time or even part-time in home care, or God forbid any suggestion that their son or daughter go into full time nursing home care. Sometimes, the elderly parent is on track for nursing home residency but balks as there is no one to care for Jack. No one to care for Jill. Cities across our great country would benefit from expanded group homes similar to those developed by Jean Vanier with the L’Arche communities — perhaps a campus of group homes for adults with various types of disabilities from minimal to profound, still part of the larger community, but arranged in a way that makes delivery of services and care more time and cost efficient, enhancing their access to community interaction.
The typical group home settings popular in the 70s still work today and are often staffed with volunteers or students taking courses specific to working with and for those with special needs; full-time ‘house parents’ are on site. The ongoing relationships developed allow for personal growth across the ages. A blend of that type of care along with the campus-like accommodations we see today would lend themselves well to geriatric parents perhaps letting go more easily, knowing that their child would be safe and well, thriving an environment with those who are, in lots of ways, like him.
Given that persons with disability do make significant contributions to the economy, and in that regard are no different than the ‘mainstream’, we must ensure that their unique needs are addressed in ways that never devalue them as people. We are living longer and with that comes a need to redesign the elder care landscape to include the challenges of a range of conditions, particularly those that impact mobility.
Imagine, if you can, having to plan every single waking moment around the needs of your profoundly disabled child, every day in every way for10 years, 20 years, 40 years, 60 years. I don’t have to see you to know that your head is spinning and you have that ‘OMG’ expression on your face.
The various system of care have got to get on the same page sooner rather than later. Seniors aren’t getting any younger and their adult children with challenges to independent living are often beset with health concerns over and above their initial presenting condition. As example, a 65 year old non-ambulatory son living with fully involved quadriplegic cerebral palsy may also have a heart condition, be prone to lung infections, at risk for pressure sores that take weeks or even months to heal. Long-term hospitalisations would not be the best course given the risk of acquiring an air-borne infection. So the geriatric Mom or Dad, as caregiver, is physically and emotionally taxed; from dispensing medications, wound care, turning their child several times a day to take weight off pressure sensitive skin and so on. Sometimes, the home is not sufficiently equipped with devices that would contribute to ease of undertaking all that’s involved in the ‘nursing care’ component of allowing an adult with disability to ‘age in place’ with Mom and Dad, or sometimes just one parent alone, usually Mom.
Perhaps several of the government’s strategizing sessions should address the issues surrounding the elderly/geriatric person with disability and what’s really going on behind closed doors. Far too often persons in crisis won’t always ask for what they need or want to improve quality of life. That being so, it’s up to us to ask the questions. After all, what affect them impacts all of us.
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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