My confession.

I wasn’t always on board with this co-housing idea. Two years ago, almost to the day, we entered a shared care model with a group home. We had been exploring co-housing with a few families in our community, but for many reasons it wasn’t the right time. Feeling we had few opportunities for an adult with Matthew’s complex needs, we entered a relationship with a local group home for children and adults with severe disabilities.

At the time I thought that this was the right way to proceed. Honestly, I thought it was the only way to proceed. My feelings were probably clouded by the fact that Matthew had just aged out of pediatric care and I was feeling burned out, hopeless, and a little desperate. I knew many families in my community who were struggling with the same challenge – how to find an appropriate and caring home for their loved-one with disabilities – and I wanted an answer for our family. I also knew that there were few good answers available in Ontario and that things were getting worse, not better. I was convinced I could work with a local group home and create a unique, cutting-edge approach to shared care for adults with disabilities. I figured we would gradually transition Matthew to full-time living at this home.

And we did. Make it work that is. At least to a point.

To be fair to this facility they did everything right. They worked with me. They listened to what I wanted. They allowed me to place my own workers in their facility so Matthew could have 1:1 care. The leadership team was excellent and did everything right. But in the end they were an institution and would always be an institution. And they were far away from our family home. That last part eventually became the deal breaker.

Rather than gradually transitioning Matthew TO this facility, over time I found myself organizing our care schedule so that Matthew spent less and less time at the home. Initially, Matthew spent time at the facility during the week, and spent weekends with us. By our second year exploring this shared-care model Matthew was only spending weekends at the home, and I no longer thought full-time placement at this facility was what I wanted for Matthew.

Which placed me firmly back at square one. The waiting list for any kind of long-term housing for an adult with disabilities is years long. And that is for any kind of housing. It may not be good quality housing. And here I had just said no to a good home with good people. It was hard not to panic and think I was making a mistake when I sent the email officially terminating Matthew’s bed at this home.

I also knew that I couldn’t sustain Matthew’s long-term care independently.

Truth be told, I don’t want to. I have been down that path and know how bad the burnout can be. I know that I am not the best caregiver, mother, partner, friend, or human being when I am that burned out. Trust me, ask my husband. That man is a saint for putting up with me. Nope. Returning Matthew to my full-time care would NOT a good long-term plan. Plus, it creates lots of complications if I can’t provide the care for any number of reasons – like that if that Mack truck hits me tomorrow.

I also know that it isn’t in Matthew’s best interests to concentrate his care in our home. Ultimately Matthew needs his own home, and a team of caregivers that aren’t his middle-aged parents who are beginning to talk about life with an empty nest. Heck, we’re looking forward to that empty nest. .

I also know that I need to begin to establish whatever this plan might be before a crisis hits. Too many families scramble to come up with adequate housing following something like an illness, death, divorce, or other family tragedy. Planning during a crisis often yields poor results.

Yet two years ago I had walked away from talks about co-housing because I honestly believed my son’s care was too complex to sustain in an independent, family-run community-based home. I truly believed we needed the infrastructure of a home with on-site nursing, and that anything different would not be in his best interest. The idea that we could create something that would actually WORK seemed daunting, even impossible. If I am being painfully honest, I didn’t have faith in myself, or my community, to make something more creative work.

I suppose I had to try the other option before I was ready to take the risk of creating our own home. I am glad I did. I learned a lot about what I wanted for Matthew. I learned that Matthew’s best life had little to do with things like policies, infrastructure and nursing care plans, and more to do with community and family. I discovered that while credentials are important, love and commitment to my son and his flourishing will always be the ultimate qualification. I also learned that I need to have a whole lot more faith in my own abilities and creativity, as well as my community’s. The support and encouragement I have received since sharing that we are exploring this new path has been overwhelming and unfailingly encouraging.

Published by extremecaregivingblog

Wife, mother, extreme caregiver, friend, knitter, soccer player.

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