57 years of caregiving - and counting!

How many parents get to play Santa Claus for 57 years? My husband, Bud, and I had two children, Janie and Robbie. My caregiver and Santa roles started with Robbie’s birth in 1953. He was a Down syndrome baby - in those days called ‘mongoloid’. We were told he probably would not survive, but after six weeks he was well enough to come home. My doctor advised us to let him go directly to a care facility and have another child right away. We rejected that advice. Throughout that first winter he was fed every two hours and by spring  - although still very tiny - seemed reasonably healthy. On our first venture out of Toronto to visit a friend, Robbie developed a breathing problem. I called our doctor who advised us to drive back to Hospital for Sick Children and he would alert them of our coming. We were speeding of course, and were stopped by police, but on hearing our predicament they arranged for a police escort right to the door of Sick Kids. Scary, scary ride!

This was the first of many hospital visits throughout a two-year period to treat inflammation of his windpipe. I’d call Sick Children’s and a tiny oxygen tent would be waiting. Dr. Uchida was conducting research on Down’s children and Robbie was in her study group. She told me I was wise not to have another child because statistics show that a woman who has given birth to one Down’s child has a 1 in 20 probability of having another. Incidentally, when my granddaughter graduated from the B.Sc. Nursing program at McMaster University, Dr. Uchida, who had moved from Toronto but continued her research, was honoured for her work with Down syndrome children. Robbie’s childhood days were fun family times except for our concern about schooling. There were no integrated classes in those days - he was transported by cab to the Rotary School on Yonge St. south of Hwy.401 for half-day classes. The Association for Retarded Children operated this facility. A few name changes later they are now known as ‘Community Living Toronto’, and provide varied supports for children with intellectual disabilities and their families. During Robbie’s early teen years we gave the ‘Ontario Hospital’ later “Ontario Regional Centre” in Orillia a try, but we were a close knit family and decided this was not a long-term solution we cared to pursue.

At eighteen he was accepted at the Harry Foster Training Centre, a facility run by Community Living Toronto and he was soon ready to tackle work at a ‘sheltered workshop’ (now Etobicoke Training Services). He loved it there and worked for 23 years, until he developed a debilitating condition, which was diagnosed as a combination of osteo and rheumatoid arthritis. For a spell he couldn’t even walk – medications for the arthritis were destroying muscle tissue. He retired when his hands became so deformed and painful that he could not accomplish even simple tasks. I had been working at Canadian Red Cross Society and retired after those same 23 years. Incidentally, Community Living Toronto now has a wonderful programme that keeps aging clients, like Robbie, occupied with crafts and music in a social setting.

Bud had occasionally been admitted to Sunnybrook Hospital for treatment of war wounds. In 1996 he suffered two heart attacks - resulting in his undergoing quadruple cardiac by-pass. While in the rehabilitation programme he regressed and required angioplasty. Around that time he also required cataract surgery. The first operation was successful, but the second eye worsened when he suffered a small stroke during the operation. He still had his license but no longer felt comfortable driving - so guess who had to do it!

In 2000 Robbie was diagnosed with a duodenal obstruction. After 10 weeks in one hospital he was referred to St. Michael’s where a surgeon was operating laproscopically on similar cases. The operation, a gastric jejunostomy, was a success initially, but the problem returned within a few months. Trips to the Emergency Dept. became routine - he’d be rehydrated over a spell of two or three days and released. At one visit an O.R. doctor practically accused us of abusing the system, questioning why we’d continue to bring him in since nothing could be done. He now weighed a mere 72 lbs. and I stubbornly refused to leave the hospital until the surgeon had seen him. He agreed that only another operation would solve the problem. Robbie was admitted and fed through a tube for two weeks to ready him for surgery. They requested I be in the operating room while he was anaesthetized (the O.R. nurse told me later she had expected me to faint). A twist of the intestine at the site of the first surgery was found to be the problem and a reux-en-y - (a y-type bypass) - was performed. He recovered slowly and since then requires small amounts of pureed foods, given often, as his digestive system is slowed. He had also lost all his teeth due to an infection. During all these hospital stays I would stay with him days and Bud would cover the nights. One nurse was particularly helpful - when she saw our name come up she would arrange a rollaway bed for Bud.

I’d asked for help and was referred to Surrey Place, where medical professionals help children and adults living with developmental disabilities. They offer a range of services, from assessment, diagnosis, and family counselling. Robbie was assessed as being at preschool level intellectually. His hearing was impaired and aids prescribed. He was to wear them for two hours at a time, but he was sneaky and kept moving the clock forward. It turned out to be a futile exercise and I gave up in frustration. They also encouraged me to apply for Special Services at Home funding to help with activities to lessen his isolation. CCAC also allowed us three hours twice a week (a P.S.W. from Pro-Home Health Services) to bathe and attend to Robbie as my old back was creaking and groaning. It also allowed time for shopping. The same support worker is still involved today - ten years later – amazing service! Meanwhile - Janie and her husband had lived in Thornhill most of their married life but now their children were grown so they moved back to Etobicoke. Her mother-in-law now needed care - she had COPD and Shogren’s disease and had suffered a serious fall so they moved together to a condo just up the street. That move was a boon as Janie, though only four years older, had always played the role of a second mother to Robbie and was now close by in case of emergencies, and they were many. She has also helped in the Santa role over the years.

Through blood tests ordered by Bud’s cardiologist a problem showed up and further tests confirmed he had colon cancer, which had spread to the liver - with no accompanying symptoms. Because he was a veteran and under care occasionally at Sunnybrook Hospital for his service related injuries - he chose to go there for chemotherapy. Friends and neighbours pitched in to care for Robbie while I drove Bud to Sunnybrook for treatment. On one occasion I needed to arrange five different sitters to cover a particularly long day of testing etc. Veterans Affairs then took an active role in his care and I found that if we had only asked they would have arranged his transport as well. They provided equipment at home to make life easier, a wheelchair, walker, and commode (which he refused to use). He would announce  “You are going to help me to the bathroom, Betty” not “Will you?” He was a heavy man and I was obliged to call Emergency Services a number of times when he did fall. They were wonderful as were the doctors and nurses, technicians and volunteers. After a year chemotherapy was no longer effective and was stopped. We had discussed our options and decided on palliative care at home, although we did as DVA suggested and submitted an application to their Palliative Care Unit - in the event I could not handle his care.   

In Sept. 2006 a doctor from the Grace Hospital Palliative Care unit started visiting - what a great programme! We were assured that whatever could be done in a hospital setting could be done in the home. Our 60th.wedding anniversary was coming up in October and Bud’s goal was to be well enough to have a celebration - which we did. We had to request a couch for Robbie as his neck was now excruciatingly painful - he was on morphine and lying down most of the time to lessen the strain (to this day he still does).

The Red Cross Meals On Wheels programme was very helpful - I ordered frozen meals - regular for Bud, pureed for Robbie – delivered once a week to reheat as needed. The doctor visited at least once a week for nine months, and as Bud’s health deteriorated I was guided through ways to keep him comfortable. During his last few weeks CCAC allowed me extra help. A personal support worker (S.R.T. Med-Staff) and a nurse (Spectrum Health care) would help. Latterly sleep deprivation was my most pressing problem. The agency could not supply night-time relief but could from 6 -12 p.m. They provided care for Bud during the evening hours while I fed Robbie and got him off to bed. I often wondered if all these services had been coordinated through one service provider, might it have been more economical and more effective?

Our minister (from Graceview Presbyterian Church) was another great support - he joined us for breakfast every Wednesday morning. Bud was just as emphatic about his visits as about using the commode. “See you for breakfast next Wednesday”, he would announce - not “Will you come?” The poor man could hardly refuse. DVA had assessed the need for a hospital bed in April but not followed through with delivery so Bud was moved to Robbie’s hospital bed and Robbie moved into my room. On the weekend before he died the bed finally arrived but by then he was too ill to use it. He died on May 24th seven months after our anniversary party.

My caregiving days are seemingly to become even more complex. Robbie has very recently been diagnosed with Alzheimer’s disease. Down syndrome patients have a higher incidence of the disease and at an earlier age than is the norm. This is likely to be an intense caregiver role; he is hallucinating and, being non-verbal, can’t communicate what he is seeing or with whom he is interacting - but the agitation he displays tells me these encounters are not pleasant. He hides his clothes and comb etc. so ‘they’ can’t have them. I’ve contacted Surrey Place again and Robbie has had a consultation with a psychiatrist and medication has been prescribed to lessen his distress. The Alzheimer’s Society has also sent me relevant information that will be useful going forward.

Our lives take strange turns. I would have dearly loved to be a nurse, but the expense of training in Scotland ruled it out (I was the oldest of seven children). I’ve probably had as much experience as most nurses (the palliative care nurse called me her role model). I pray I will have the strength to meet this latest caregiving task – perhaps the most challenging of all! I confess I can't do it alone (one of the hardest things for me to admit). If we are fortunate we get a great deal of help from family and friends – at other times from agencies - whether private or through CCAC. I am so grateful for these superb services and am sure help will be available  - again!