“We must be willing to let go of the life we have planned, so as to have the life that is waiting for us.” These words of E.M. Forster resonated as I watched the documentary about Linda Rondstadt, whose music I continue enjoy decades after she came on the scene.
Ronstadt made the decision not to take the medication used to treat the Parkinson’s disease with which she was diagnosed in 2013, though she’d been symptomatic for several years, noticing changes in her voice as far back as 2000. The drugs she was prescribed caused nausea and vertigo, which is a risk one takes in trying to to tailor a regimen of currently popular medications to treat conditions that alter physical, emotional and mental health.
Unfortunately, drugs used to Parkinson’s and cerebral palsy often have side effects that significantly impact daily life, setting the stage for a life that is not as enjoyable as it could and would be without being too sedated/medicated. Like Ms. Rondstadt, I am not a shut-in. I prefer to think of myself as ‘snuggled in’, particularly in winter months, when mobility is hampered by ice and snow.
Ms. Rondstadt and I also have another thing in common — we have to pick our battles, deciding what we want to accomplish on any given day. Living in our worlds is exhausting. Make no mistake about that. She’s advantaged by having access to lots of hands on help with the day to day, while here at Chez Rockwell, I do most on my own, under the watchful eyes of two aging canines. If I fall down and go boom, who are they gonna call?
The diagnosis of progressive supranuclear palsy, a severe form of Parkinsonism with brain wasting, ultimately found its way into Ms. Rondstadt’s medical profile. My eldest sister, who passed away in 2012, lived with PSP during the last several years of her life and cost of her care was significant. PSP is a cruel disease. In many respects, she was far more disabled than I ever was. Thankfully, my healthy lifestyle has contributed to my continued independent living.
As we chart a course for what’s to come in 2020, it is my hope that the medical community, from doctors and nurses to providers of at home care adjust their vision to include the critical need of support for caregivers who happen to be related to the person requiring extra attention and assistance. It’s no easy task being the spouse, partner or parent of a person living with disability, particularly for parents raising children with special needs. It’s expensive. Very often, the costs associated with caregiving come out of the ‘family pot’, compromising the financial health of the rest of the household. When children age out of systems of care that were subsidized, it falls upon parents and families to pick up the slack, so they often have to cut back in other areas of daily living. If there are other children in the home, their accustomed lifestyle is often the first to get cut. Not fair.
Our government needs to rethink what caregiving really is and that paying family members who provide care is one very significant way they can let its citizens know that they are of value and their lives matter. The physicial, emotional, mental and financial cost of caregiving is significant and in the end it’s counter-productive when what a family member is doing to help another is actually hurting themselves. No winners. A monthly allowance provided to each family who currently provides home care to a family member who cannot look after his own needs due to illness, condition or disease, would go a long way to reducing the overall burden on systems across the board. Think about it. Do the math. Many countries around the world have developed schemes that provide familial caregiver allowances.
As well, the government must be mindful of one key point. In reality, there’s no such thing as government funded; it’s tax payer funded. People are only asking for what they rightfully deserve as contributors to the government pot that assists everyone. You’re seeing the logic, right?
Caregivers are exhausted and they don’t often reach out, isolating themselves to the point where no one outside their daily world has a full appreciation for what’s really going on behind closed doors. The daily routine of caregiving, day in and day out for years, for decades, takes a toll. Financial packages available to families in need is the right thing to do if our society hopes to flourish into this coming decade and beyond.
As the days of 2020 start rolling out, perhaps all those local, provincial and national programs of health and wellness support will stand on common ground and finally DO the right thing for those who need a hand up. It’s time.
Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her geriatric Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca
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