Last week was really busy. Wednesday evening I played soccer. Thursday evening I attended a play with my youngest son and husband. On Friday I ate my fill of spaghetti at our sons’ school’s annual spaghetti supper. After dinner I watched our eldest play in the alumni basketball game. On Sunday my husband and I shared soft baked pretzels while watching our local OHL team beat North Bay. This upcoming weekend I will be away for an annual retreat of “special needs” moms.
There was a time in my caregiving journey where one of those outings in a six month period would have been a rare treat that required significant planning. Multiple outings in the span of a few days were as rare as a winning lottery ticket. It just didn’t happen. EVER. A weekend away usually required making a respite request at least four months in advance – so forget spontanaiety. An evening outing required organizing a caregiver and planning for contingencies – which inevitably seemed to happen. If I knew that I had a few activities on the horizon, say a weekend retreat AND a family wedding or gathering, I often had to choose between the two activities because of caregiving and respite restrictions. Remaining behind to manage Matthew’s care while others in my family attended events, and continued on with their lives, was a common theme.
I lived with these limitations for years.
While the first ten years of Matthew’s life was mostly a chaotic blur of caregiving and little else, there are a few significant memories that stand out. One particular memory involves Canada Day fireworks. We are fortunate to live walking distance from a fantastic local display of fireworks planned annually for July 1. One particular Canada Day we had friends over for a barbecue and then planned to walk to the nearby open field that offered a great view of the fireworks. As it turned out Matthew was having a lousy evening and as the evening progressed it became patently obvious that he was not going to be “up to” attending the fireworks. So as dusk settled on our neighbourhood I watched our friends, my husband, and my eldest and youngest sons, head off to the fireworks. I waved good-bye, walked back into the house, and burst into tears. By the time the group returned a couple of hours later my pity party had ended. I had planted a smile on my face and was settled in the chair next to Matthew’s bed drinking tea and reading a book. I don’t think the group ever knew how sad I was to miss the activity.
I don’t think it was missing the fireworks, per se, that really upset me as much as it felt like, once again, I was being left behind as I watched everyone else head off to have fun. Feeling left behind was a common theme during that stretch of my life. I often felt that everyone else in my world was heading out the door to live a full and adventurous life while I remained at home to provide care. I lived with the chronic feeling that both the years, and many of life’s opportunities, were passing me by never to be recaptured. While I loved Matthew and was devoted to his care, I struggled with regular feelings of resentment and almost constant feelings of isolation. It wasn’t a fun time.
Which is why I found myself on Sunday reflecting on the relative busy-ness of my life as I drove home from the OHL hockey game. This freedom to re-join a busy life is one of the great blessings that emerged as I was able to increasingly share Matthew’s care with others. Our new model of shared care with a local group home allows Matthew to live a vibrant and busy life, while allowing me some of the same opportunities.
The radical restriction of caregivers’ lives is one of the concerns that I think requires attention moving forward as we think more and more about how to ensure people with disabilities are fully included in community. While people with complex and severe disabilities live increasingly full and vibrant lives in the community, which is a wonderful and important development and I want nothing less for my son, we sometimes forget, that at times, inclusion comes at a very steep cost to their family caregivers who remain behind the scenes to facilitate that involvement. There are moments that I worry, that for extreme caregivers like me, it often becomes a sum zero game. As my son’s involvement in community increased, mine correspondingly and significantly decreased. I worry this is a common theme.
This isn’t okay. We need strategies that not only promote the full inclusion of people living with disabilities in our communities, but corresponding strategies, supports, and resources to ensure that inclusion doesn’t come at the cost of a family caregiver’s isolation. This means that things like respite services, home care supports, community supports, and so on, are vital resources that need to be generously offered to people living with disabilities and their caregivers. In cases of extreme caregiving I worry that caregivers will continue to be left behind as they wave good-bye to everyone else in their family. It means that in these “left-behind” situations, we’re still failing at inclusion. It just looks different.