Dr. Christopher Bird

Today is National Caregiver's Day in Canada, a day to celebrate and acknowledge the hard work of countless people across the country and the world who sacrifice their time, money, and sometimes even their families and careers to look after the elderly and the disabled. 

As many of you already know, this is an issue that I feel quite strongly about and have been very vocal about. When I was 21 years old my father had a stroke, and between nine years of looking after him and then several more years when my mother and brother needed help later on, I have spent the better part of eighteen years as a fulltime unpaid caregiver. And while some people choose to do this thankless task, I was never given a choice in the matter. 

However the intention of this article is not to rehash those horrible years, or to express self-pity, but rather to provide the general public a better understanding of just what being a caregiver entails. I have talked with many people over the years who envision something where the patient is self-sufficient, but needs a little help walking down the stairs or perhaps needs someone to run to the store occasionally for groceries and supplies. And I am sure that for many caregivers that is true. But not always.

Of course a full review of all the troubles that caregivers face would extend into hundreds of pages, and is therefore far to extensive for this simple article. However I would like to present a few examples from my own experiences, to give some idea of what caregivers go through:

• On December 16, 1998 we were told by hospital staff that they had unilaterally decided that my father would be spending Christmas at home with my mother and me. His doctor, his physiotherapist, and the head nurse all agreed that it would be impossible for him to go home. Their manager overruled them. My father required 24 hour care, which would have to be provided solely by the two of us because there was no home support available. We spent Christmas night and morning just moving him around and our own holiday was forfeited because of hospital demands.
• The occupational therapist handling my father`s case decided she wanted to see my parents` home. She declared that the entire front yard and gardens would have to be paved over, a fence removed, the doors widened, and the stairs replaced with a ramp. However the building code did not permit a ramp where the stairs were, due to the steepness of the land. So the OT declared that the entire yard would have to be re-graded. And since the stairs were enclosed in a finished porch, she ordered the porch torn down and rebuilt to suit a ramp. And since the stairs were the only access to the basement, a new stairwell would have to be built by removing one bedroom. And the only bathroom would have to be renovated for his sole usage, and no one else`s. In the end, with my parents` having no income, the OT listed tens of thousands of dollars worth of mandatory renovations. And as she was leaving she mentioned that the hospital manager had declared that my father would be arriving in 36 hours so all renovations would have to be completed by then.
• On December 28, 1998 the social worker arranged for my father to go into a carehome within the month, because it was clear to him that my mother had her own health problems and clearly could not manage being a fulltime caregiver. However a few days later someone else in the hospital cancelled the carehome because they said it might be too upsetting for my father. We were never consulted.
• On February 6, 1999 we were told that my father would be in a carehome within two weeks, but we had to take him home for those two weeks. Two weeks later they said they had meant two months. Two months later it was changed to six months. When the six month date arrived, they said we must have misunderstood because once a patient goes home they are home permanently.
• Every time my father had a medical appointment of any kind, I had to lift him and his wheelchair up and down a flight of stairs. At the time he weighed well over 300lbs. When I told staff I could no longer do it as he was causing me injuries, they told me that my frail elderly mother should be helping to lift him.
• When my mother complained to hospital staff that she could no longer manage caring for my father, a physiotherapist got mad at her and told it was her duty and she would just have to work out more and get stronger.
• Over the years I have had great job offers in three different cities. However in each of those case, a member of the hospital staff learned I was planning to leave my father and interfered with my plans, twice going so far as to phone my prospective landlord and cancel my rental application. I know it sounds bizarre, but I assure you it did happen.
• At one point I had a tooth knocked out when my father punched me. I tried to get him into respite care for a couple of days while I got it repaired, but the hospital said that it was elective surgery and therefore not considered enough of an emergency to move him into care for even those two days.
• In 2005 my parent`s physician told my mother he didn`t want to deal with my father anymore, and so he would not be their doctor anymore. I suspect that he did not want to treat someone with ongoing medical problems. From that time on my parents` had no physician.
• In 2006 my father told hospital staff that he had a collection of handguns and intended to murder my mother and I. The ER nurse phoned my mother just after midnight and told her she would have to take him home right then in spite of the threats. She refused, and a few minutes later the ER doctor phoned her and hollered at her that she was not allowed to refuse to take a patient home in the middle of the night, even if he was threatening her with a gun. After my father died we found his gun and several dozen rounds of ammunition.
• After a public tantrum in 2006 that had my father hauled away to the hospital, I also told staff in great detail how my father had taken to punching and head butting his wife when I was not home. I told them how he had destroyed our lives. My mother was preparing to file divorce papers to get out of the nightmare of caregiving. And yet the hospital staff completely ignored our pleas and without our consent my father sent back yet again with no support for the family.
• When this nightmare started, I was a straight A award winning student with an offer of a dream job in Edmonton, and countless people telling me they expected me to go on to great things in my chosen field. Nine years later I was just barely surviving, and will probably never get my life or my career back completely. And yet hospital staff continued to tell me that my parents` were still on the wait list for a carehome and that I just had to be patient.