Originally published in Express Woman, December 18, 2016
I returned to Trinidad from the USA where I was working as an occupational therapist in a skilled nursing facility catering to rehabilitation of elderly patients. I selected this practice area because I specifically wanted to work with older people. Both my parents were older people and I was raised with their example of a hard-working and self-sacrificing older generation. In the US, I provided therapy services in hospitals after conditions such as stroke, open-heart surgery, and hip fractures which are common diagnoses for occupational therapists to treat. I also worked in innovative medical and social Adult Day programmes for people with dementia that allowed them to continue to live in their own homes.
I enjoyed my job, but I returned home, with my husband, in 2003 because my 82-year old father had suffered collapsed lungs, and as we later found out, was dying from lung cancer. My sisters and I, all living abroad, made adjustments to our lives and navigated returning to Trinidad to support our parents. It turned out our father had spent three months in the earlier part of the year caring single-handedly for our 79-year old mother. She had fallen while carrying a basket of laundry down some steps and suffered a broken arm and a hairline pelvic fracture. While she was ably cared for by their family doctor in the acute phase, it was only in what would normally be considered the rehabilitation phase that the real challenges took their toll. Her pelvic pain limited her ability to walk and our father was taxed with providing all of her mobility, basic self-care, bathing, and dressing needs himself. Being proud, he never let on to the extent of her needs for support. He also never let on about her worsening memory loss.
At 82 years of age and with emphysema our father had suddenly become a 24-hour caregiver for the better part of three months. That is, until his own health suffered. There were no occupational therapists in Trinidad to do home visits, nor any skilled nursing facilities or even hospitals providing in-patient occupational therapy at that time. Our parents did not know they should have had rehabilitation help. They did not know where they could turn to for help so they did what they thought was best.
In time, my mother grew stronger and resumed some of her activities, but then one day one of my father’s lungs collapsed. This was a sign of his lung cancer and the start of his downward spiral which led to my return to Trinidad. I was lucky enough to see him recover and adjust to living pretty well, although dependent on a portable oxygen tank.
He re-introduced me to Trinidad and supported me in my new roles working as an occupational therapist and a disability rights advocate. He whole-heartedly and even physically supported my involvement with the Trinidad and Tobago Chapter of Disabled People International under the presidency of the late George Daniel. This time lasted for six months.
I was angry for a long time afterwards about the fragmented system that offered superficial and inadequate medical and social care for my parents, ordinary but vulnerable, elderly people. I was appalled that this seemed to be the norm. Where were the social workers? The home care nurses? The adult day services? Why was everything out-of-pocket fee-for-service? What happened to people who didn’t have insurance to cover the enormous costs?
In the year after my father’s death, my mother was diagnosed with Alzheimer’s Disease. We struggled between keeping her feeling secure in her familiar home environment and making the changes necessary to ensure her safety. We tried to figure out how to help her cope with her grief in her lucid moments, find some pleasure in her forgetful moments and we tolerated her rage in her fearful moments.
In Trinidad and Tobago, children, the elderly and people with disabilities of all ages in-between require roughly 250 occupational therapists to meet their needs adequately. With three other occupational therapists, I co-founded the Trinidad and Tobago Occupational Therapy Association (TTOTA). In my private practice, I was dogged about falls prevention.
I later started the first therapeutic adult day center in the country staffed by occupational therapy practitioners, running a therapeutic programme in an accessible and purpose-designed building. It was a joy for me to see my mother thrive there.
I am forever grateful that I had a great team and my occupational therapy skills benefited my mother, as well as others, exactly at the time when she needed it. However, I learned, in some instances the hard way, not to try to do it all.
I have since taken the long view on this problem of inadequate numbers of occupational therapists available to serve this country’s under-served populations. My area of work is now in academia preparing the future generation of competent and compassionate occupational therapists for this enormous task.
Over the last three years I’ve been working on establishing the Master of Science in Occupational Therapy at the University of the Southern Caribbean (USC). Thanks to the collaborative efforts between USC, TTOTA, and the World Federation of Occupational Therapists in September 2016 we launched the first masters degree programme in occupational therapy in the Caribbean.
USC is now accepting applications for the second cohort for September 2017! It is my hope that within the next ten years we will have enough qualified occupational therapists in this country so that no one’s elderly or younger loved ones will ever have to struggle alone in the face of common, treatable conditions.
I hope that my story encourages anyone else out there who may be struggling with the challenges that come with being a caregiver, to find ways to keep going.
The production of the Lioness series, highlighting the experiences of 12 mothers, is supported by Cause an Effect, Angostura Limited, First Citizens Bank and A Very Special Disabilities Forum.