Writing letters to Santa

Barb and El, Photo Credit Unknown.

I met Barb in the early days of my caregiving journey. 

We sat in a local coffee shop chatting and it was the first time I had spoke with someone who had been caring for their sibling with a disability over a long period of time. As I listened to her tell her story, I realized for the first time that my caregiving journey was not going to be a short-term gig. In that moment my entire world shifted. . 

Since meeting Barb I have considered her an important mentor. She had such compassion for her sister. She was an impressive innovator, figuring out creative ways to arrange care for her sister Eleanor. She also realized her own dreams while being a caregiver. 

I wrote Barb’s story as part of project I was doing. It is a story of resilience, tenacity and endurance. It impacted me deeply and so Barb has agreed that I can shared it again. 

Sadly, Eleanor died in August 2019. 

Barb has moved to Australia. We message each other occasionally but I think of her often 💙.

Barb and Eleanor

My sister Eleanor has just celebrated her 70th birthday. Many people will tell you Eleanor is very charming. She was always active, capable and game for anything. 

Except for ten years at the Rideau Regional Centre, Eleanor lived most of her life with our father and stepmother. She adored her father and felt he was her pal. They went bowling together, to McDonald's for supper once a week and to church. When our father died in 1987, she wasn’t as much sad as she was overwhelmed by the question of who would take care of her. She always had surprising insight.

Our stepmother Jean was really close to Eleanor. While our dad had been the boss, our stepmother helped her with social outings, learning and street skills, like using buses on her own. Jean took over Eleanor’s care after our father died until she had a stroke and moved into long-term care 13 years later. That is when Eleanor came to live with me. 

This was a very confusing time for Eleanor. Even though Jean was in long-term care, she still felt that she was Eleanor’s primary caregiver and would direct her life from the facility. Now, Eleanor had two people as primary caregivers and many times what I thought was best for Eleanor, Jean did not. Eleanor didn’t cope well at that time and frankly neither did I. I was running everywhere looking after everyone and not able to properly direct Eleanor’s care. It was a time of much confusion and stress. 

When Jean first became ill, Eleanor would visit, and a social worker noticed Eleanor was having a very difficult time. I asked the social worker if she could please give Eleanor some counselling to help her adjust. She counselled her for about six months; it really helped and eventually restored some balance to our life. Jean died in 2005. 

I used to lead a perfectly normal, adult, single life. I might even say it was totally self-centered and self-directed. I lived in Australia for 40 years. I had a home there and was a teacher in a local school but I still weaved Eleanor into my life. When Eleanor was living with Jean, I would come back to Canada and bring Eleanor back to Australia for me for three months at a time every two years. She had a special room in my house. It wasn’t hard to integrate Eleanor into our community. They welcomed and included her when she visited. Our good friend, Cheryl, was especially supportive. She gave Eleanor a volunteer job at the school library. After Jean passed away, we would live in Canada for six months and in Australia for six months. I kept our houses going in both countries.

I have always been good at networking. I never forget who people are and what they can do. Also, I don’t feel any kind of ownership over Eleanor, meaning that if anyone expressed an interest in getting to know Eleanor I would say, “Sure, that’s great”. As a result, Eleanor has enjoyed many friendships. 

I have enjoyed being Eleanor’s caregiver. We were great travel buddies, good companions and we are very close. Eleanor is very chatty and would get wholeheartedly involved in whatever we were doing. She was self-motivated to do jobs: she would automatically sweep the kitchen and patio, fold the laundry and help cut up vegetables. I never felt that Eleanor was a burden to me or the life I was leading. I was able to adapt situations to suit our needs. 

Eleanor used to complain that her back hurt and would say, “I am getting old.” I used to just treat it lightly and tell her that I was getting old too! But one day she stopped saying “I am getting old” and I realized that she had indeed become old. She was having trouble with her daily activities and needed a wheelchair to get around. Our last trip to Australia together was two years ago.

 Eleanor losing ground was a shock to me. I had no vision of how this was going to play out. I had no vision of her being physically disabled. For me, it was really sad but, in a way, Eleanor loved it. Using a wheelchair was a relief for her. We finally received a lot of home support and Eleanor – someone who has always loved attention – now gets 40 hours a week of one-on-one attention from the people who support her.

Life today is actually a piece of cake compared to when Eleanor was so active and busy. I have been very tired from always thinking for two, looking for resources, supporting her need for stimulation and independence. I am now enjoying the many hours of support she has from others. 

What has made the biggest difference for me and for Eleanor’s life has been my ability to seek opportunities. I would invite friends to join us in our activities and we would all do things together. It was wonderful for me too. I just had to adapt things so she would be okay. Inclusion worked both ways for us – it gave me a busy social life and it helped Eleanor develop a large network. But there are no free lunches in this world: I would go overboard looking after the friends that were included in our life and put a lot of energy into building and maintaining relationships. 

Through word of mouth, I would find a young person who, in exchange for cheap rent, would be both a companion to Eleanor while we were in Canada and a house sitter for the six months we were in Australia. All kinds of people came into our life looking for accommodation or house sitting and they gave back much more than they received, often more. Some of the people who stayed with us are still part of our lives today. 

Insistence and persistence have made a difference in how I have dealt with support services. I feel that social services were indifferent towards my requests and I had to badger them. I wrote, called, emailed, asked to speak to the supervisor. One time I even threatened the staff of the Ontario Disability Support Program with involving my lawyer. Writing letters to these people is like writing a letter to Santa Claus. You never know if it has been received. I tried for seven years to increase Eleanor’s individualized funding, so she could have money to participate in the community. Yet only when Eleanor’s health changed dramatically did we finally receive the increase we needed.

I am now a senior and, because I have so much help, I can actually stop struggling and enjoy a bit of my retirement. When I think back, I don’t know how I have managed to look after Eleanor all these years with limited financial resources and my commitment to a life of going back and forth from Australia. In some ways, it has taken a toll. We definitely had difficult times, especially in the earlier years. The saying “Care for the carer” used to make me bristly but in the end I learned that I can only do so much – and I am doing my best. You are first and you have to learn that. This took me longer than average to learn.