As a senior, aging home alone with multiple disabilities, including since birth cerebral palsy, I have developed an expansive ‘tool kit’ to meet the daily challenges of aging in place safely and well. To be uprightly mobile at the age of 70 is testament to the reality that what I’m doing is working; I have a network of friends who, as they are able, assist me with those things I cannot do on my own. I’m all about reciprocity.
Emotional unwellness, mental illness, mental instability, emotional instability - label after label after label with all having a common underpinning — a thinking, feeling, flesh and blood human being in crisis. Also in crisis are those near and dear to the one trapped in a ‘cage’ where he may see no escape - rather like the hamster on the wheel going nowhere fast.
This is often the plight of parents, very often the mother, with emotions raw from years of frustration, as they cared for disabled children, from infancy through adulthood — ‘What will happen to John when I am no longer able to care for him?’ What will happen to my child when I am dead? Who will look after him the way that I did, making sure he will be well and happy?’
Lots of questions with many possible solutions, but none may suit Mom. That’s why it’s so important to have a well thought out daily plan outlining everything about her son and his day. What he likes, what he doesn’t like. Listening and hearing with respect is critical.
There’s been a lot of discussion, along with many recent newspaper reports of plans to meet the needs of seniors in care. What about senior/elderly parents caring for adult children with disability who require care 24 hours a day, 7 days a week, year after year. Both the carer and the cared for are at risk. They and their needs are sometimes inextricably joined and with proper supports, both could stay in the family home, continuing to be comforted with the familiar.
A mother of 80, without ready access to familial connection, trying to ‘do it all’ for her profoundly involved 57 year old child often chooses to isolate herself so that no one will fully get to see what’s going on because she is afraid. You would be, too!
The adult son will always be her child and she doesn’t want anyone to see that she’s failing. What she may perceive as failing is not at all the case. What she’s experiencing is the not unexpected consequences of pushing herself beyond her limits of physical, mental and emotional tolerance. In not allowing others in to see, to avoid feeling bulldozed or intruded upon, it is near impossible to gauge her real needs and the needs of her adult child.
Frankly, a mother who has demonstrated that degree of commitment to caring for an adult with disability to ensure that he doesn’t ‘end up’ in care has to be applauded for staying the course when perhaps they shouldn’t have. Mom must not be made to feel that her child with disability is being abandoned if a discussion is broached about having him live in a special care home or a nursing home.
Those responsible for developing nursing home care plans for the ‘differently able’ need to engage in town hall meetings so that they get real sense of what goes on behind closed doors in the family homes within that community and be respectful of the wishes of elderly parents when it comes to adults with disability. Sometimes, the ‘systems’ across this province and others are not fully aware of just how many adults with disability are being cared for by elderly parents. Learning about them before a catastrophic event alters their living arrangement is critical. The needs of caregiver are equally as important as those of the cared for. Visiting clinicians often see and will note concerns but they can’t do it all.
The family doctor must take care not to be heavy handed with advice about ‘what to do with John’. When mother and child are treated as a single ‘case’, with a view to having them both transition into ‘special care’, things may be easier. The family dynamic may stay somewhat intact and Mom is more willing to comply with new ways of doing things.
It may not always be possible to meet all the daily needs of the adult with disability going into care but the critical ones, in my view, would be those that involve physiotherapy, occupational therapy, and possibly speech therapy, taking into account personal preferences of the client. Maintaining the familiar with regard to physical activities of the day will, in large measure, ensure stable emotional and mental wellness.
An adult with disability being cared for by Mom, Dad or a sibling has a routine that has been ‘set in stone’ for years; as example, certain food preferences, twice daily physiotherapy, favourite television programs like to be watched, favourite music. In fact, lots of adult children with disability like to be read to. Will those things be carried on in the nursing home environment? To suddenly abandon them will cause no end of frustration.
Compassionate care enhances quality of life within community. A win-win.
Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, a boisterous Havanese. She can be reached via email at: Carla MacInnis Rockwell
This is a huge issue and I was very happy to see your blog to raise these important practical concerns which are a reality for so many families dealing with serious disabilities. Supporting and learning to be as independent as possible is of course important for a good quality of life but so is having a good plan for dealing with future care realities. NB has the second highest rate of disability in Canada and also an aging population affecting both the parent caregivers and the aging sons and daughters needing care. We need a much better system of resources and direct support to these families and to provide better options for transition planning for any care requirements due to that disability. Thanks for contributing to an important debate Carla. Cheers!
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