I get it. It’s pretty easy to spend my time at the family cottage – seemingly endless days in the sunshine, great meals with friends and family, hours in the boat enjoying the fresh air. Deane and I are both at our happy place.
Nothing to complain about.
Amid all that pleasure, it’s the thoughts that I can’t avoid when I first wake up. The realization that in the midst of all that enjoyment is a full regime of medicine, g-tube feeding, diaper changing and all-terrain wheelchair pushing. It’s the awareness that soon this will be a full-time reality.
This is my 20-year-old son’s last summer break. Next year at this time, there will be nothing to which to return. Sure the summer will be the same: the two of us sorting out what to do day after day, but next September (2019) is the beginning of Deane’s adult life. He will have “aged out” of the system that has supported him for his first 21 years.
That means when we return from the cottage next summer, we are on our own to create a routine and schedule for Deane. For 18 years, we have leaned on a series of fantastic schools to provide Deane with a social environment which keeps him engaged, encourage him how to interact with the outside world and work to teach him to direct his own care which they provide for up to 6 hours a day. Now all of that falls to us.
It’s not that we can’t do it. We’re doing it now. We do it every weekend. It’s just that it is very time consuming. Not much else gets done.
And there is the question of the quality of life we can provide. Deane likes his television. In the summer, a ride in the boat is tempting enough to take him away from the big screen. In the city, there are fewer things he finds as appealing and those things, without school, involve our full-time participation. Again, not much else – regardless of how necessary – gets done.
So we have a year to find something to provide activities and engagement for Deane. What I hear as I wake up is a ticking clock – ticking very loudly.
If you want to understand more about this issue, here a couple of links on the issue of care for high-need adults:
CTVs W5 – “Growing up Scared”
CBCs White Coat, Black Art Town Hall – “Crisis in Care”
If you have any thoughts, ideas, inspiration or links or ideas on this or related issues, please reach out via this blog or social media. We are inviting as many people as possible on this journey.