My youngest brother lived with rheumatoid arthritis for 44 of his 65 years. After a teaching career in western Canada, Michael and his young family moved back home to Bath, NB, purchasing an older house; their children were able to visit with our parents who lived in Bath for decades, growing a family that counted 8 children. I am #7. Never did I imagine that Michael would die so young, taken by a disease that chewed away at his life, beginning when he was in university.
I had always been aware of the reality that RA shortened life by at least 10 years by virtue of the toll it took on every part of the body; from profound disability with diminished function of hands and feet, to issues related to chewing and swallowing to heart and lung function deficiencies. Nonetheless, his death was a shock. Like many such diseases, RA holds the entire family prisoner.
As is typical of those with mobility challenges that affected stepping, lifting of feet, climbing, reaching, sitting to standing and vice-versa, the physical landscape in Michael’s home was changed gradually to accommodate decline in physical abilities in the passage of time, in advance of them actually being part of daily life.
Most useful to him were his adjustable bed, walk-in tub and a stair climber seat, which allowed safe access to the upstairs where the bedrooms are. Gosh, I could use one of those in my home. Better yet, a slim elevator to get downstairs to the den to maintain my role as keeper of the winter flame. Planning for the costs of disability has to be well thought out so that the person living with the daily challenges has everything in place that will make the home user-friendly in every way. Consulting with a physiotherapist and occupational therapist is necessary with a home visit recommended so they can review room by room what may be necessary, from wall light switches to style of door handles and floor surfaces.
As difficult as it is to think about what will be while coping with the ‘what is’ of a condition like rheumatoid arthritis, it’s necessary to be realistic about the future and with that the physical, emotional and financial costs associated with living with disability. Those costs attach to all family members as they and how they live their own lives is impacted by the person actually waking up each morning with the impact of RA lurking in the body, waiting to tumble out and wreak havoc.
Architectural accessibility is expensive and it’s often recommended that home owners address the most critical spaces first; kitchen and bathroom, focusing on safety which include accessible tub/shower, grab/safety bars, hardware for drawers and doors that are user-friendly with one who has little or no grip strength or can no longer flex fingers.
Canada Mortgage and Housing’s Homeowner Repair Program is a mechanism available for persons with disability to help with costs associated with making a primary residence accessible and safe. I encourage anyone who has accessibility needs that go beyond their financial ability to pay to get in touch with CMHC to determine if you qualify. A representative will visit the home and go over what should/could be done and take you through the process of application. Also part of their consideration is if a structure on the property of the home owner is being modified to accommodate a senior relative. A garden suite is an example of such consideration. Living with restrictions to mobility created by diseases like Rheumatoid Arthritis can be somewhat mitigated by enhancing long-term living spaces. Safety in the home reduces likelihood of nursing home admission that might be viewed as ‘too soon’ by the person affected by challenges to daily living and it may take just a few inexpensive modifications to alleviate concerns of home alone safety of the person living with disability. A home is an investment beyond the dollar value attached to a building; it’s an investment in memories of a life well lived in spite of health concerns.
Aging in place and freedom of choice contributes to positive self-esteem with regard to how one lives in his home. We all need that.
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 carmacrockwell@xplornet.ca
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