Wednesday, March 21, 2018

Aging in place with a since birth disability has its challenges


       Decades ago, cerebral palsy was considered a ‘children’s disease’. Today there are many living with the disorder reaching ages into the 70s and 80s. Cerebral palsy is not a disease at all but a fixed neurological insult with the secondary implications often setting the stage for outcomes, day by day, week by week, and year by year. By clinical diagnosis I ‘have’ spastic diplegic cerebral palsy, affecting the legs and concurrently the spine. Implications of aging have been making inroads for several decades, with spinal stenosis, osteoarthritis of the thoracic spine, degenerative disc disease and fibromyalgia being notable among them. Then there’s the wonky vision and quirky heart. 

Seniors such as I, growing old with cerebral palsy, may face a variety of challenges, many of which can be mitigated with the help of professional in-home caregivers. With proper supports, we are able to age in place in safety and in comfort. Comfort and familiarity with spaces is critical to someone like me who has spent decades fine-tuning skills to function independently — from moving a vacuum cleaner from one room to another to carrying a bucket of water without sloshing it all over the place.

We’re not unlike our age appropriate peers with regard to growing old, sharing many of the same issues. As example, I have been coping with increased pain in the knees, hips, neck and back — for me, spasticity management is critical so that my daily routines aren’t compromised by pain-induced stumbles or falls. So far so good, and ‘doctor drug’ free.

Decreased mobility often contributes to the higher risk of falls as does diminished bone density and muscle strength. We who are aging with since birth mobility disorders often have to reassess how we will conduct the business of our lives should we need to use devices and aides like canes, crutches, walkers, wheelchairs or mobility scooters. It’s important to have conversations with your primary care physician to formalize a plan of in-home care. I know I would benefit from daily physiotherapy, drawing on the regimen that was undertaken with me when I was a small child. Restoring muscle memory and tweaking patterned movement would allow me to stay on top of things as I age in place, on my own, home alone.

I’m fortunate, while living on my own, to be able to prepare meals and maintain my home with regard to daily and weekly housecleaning, relying on outside help very infrequently.

Proper nutrition is an issue for the aging person, particularly those who live alone  without benefit of frequent visitors, whether family, friends or neighbours. Bulk cooking and baking has been part of my MO for decades and it’s not likely to change. Perhaps seniors in your world might consider organising baking and cooking parties and share the stews, pot pies, soups and salads of their labours. It would be an ideal way to ensure healthy eating on a daily basis. As well, pooling resources reduces costs and that’s always a good thing.

Seniors with pre-existing disability may need more supports available to stave off the beast of depression that tends to invade the emotional spaces of the aging person, as isolation is a significant concern for seniors who live on their own without daily or frequent access to family or friends to ‘check in’. For the senior with disability beyond the implications of aging and what that means in terms of health and wellness, there’s the reality that social connection tends to diminish with age and it’s not always by choice. 

Aging in place can present a few unique challenges for older adults. Some require only part-time assistance with housework or meal preparation, while others are living with serious illnesses and benefit more significantly from receiving live-in home care. Care plans are based on individual needs.

It’s critical for the aging person to accept the reality that the body does experience wear and tear, joints do ache, balance does change and more care and attention has to be taken. The aging person must also accept that the living spaces may need modifications to ensure ongoing personal safety. 

In many ways, I’m at an adavantage, having come into the world with challenges to mobility that impact how and where I can live safely. Adapting my square peg existence to the round hole world has been a lifelong adventure with lots of interesting and often amusing experiences. So long as I can ‘walk this way’ without slamming into the refrigerator, life is good.



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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