…with my sweetie!
It’s been a year and a half since I’ve had consistent care for Becky. That has meant; no free time, no nights out, no weekends away, and pretty much no privacy. Where we go, Becky goes.
Becky finished full-time school in June 2010, and in August of the same year, she had a big blow up with her father and decided she didn’t want to see him again. Great! No day support and six weeks later, no weekend support either. She had spent at least one weekend a month with him since she was two, and suddenly it was gone. There were no easy answers. I had spent the previous winter trying to find a suitable day program for Becky in anticipation of the June cut-off, but we were just put on waiting lists. I also applied for extra funding for the programs, and was again put on a waiting list. School was free, day programs were not.
I had to give up my landscape design business to stay home full-time with Becky. I felt I had lost everything; my income, my life, my freedom. To cap it off, my Mom died at Christmas that year. I had to deal with my grief and Becky’s grief with no support. To say it was hard is like saying the Pope is religious. It’s a bit of an understatement.
I managed to hire a lady to work four hours on Saturdays, and for a while that was the only free time I had. Tom and I would run out of the house as the worker pulled into the driveway. We couldn’t often do frivolous things, but at least we were out together. The lady started showing up later and later, and finally didn’t show up at all, and that was the end of that.
Then, miracle of miracles, a spot came up at a day program three days a week. Yeah! All I had to do was arrange for an Occupational Therapy Assessment and then Becky could start. Well, most therapists don’t do this kind of assessment and the one lady that was recommended, returned my phone call from Alberta. She was on a speaking tour across Canada and wouldn’t be back for a month. No. Come on.
Then Becky’s wheelchair went haywire. See Three Wheelchairs and A Hummer parts 1,2, and 3. By the time we got to the assessment, Becky’s power chair was only lasting a couple of hours. I prayed it would last. It did. Then we had to wait for the Occupational Therapy report and Canada Post went on strike. Becky couldn’t start the day program without this in place. Did I mention the building for the day program had suffered a flood, so when we got there, all the flooring was ripped up and part of the walls were stripped, oh, and the air conditioning wasn’t working either and it was a really hot day. I had a vision of swimming through mud.
Becky finally started the program in mid-July, over a year since she finished school. The other great thing about the program, was that it was subsidized; and therefore, affordable. It took all the funding we had, plus some from our pockets to pay for the day support, so this meant no money to pay someone for night time or weekends.
The phone call in November, last year, telling me that Becky was approved for new funding was unbelievable. It has given us the opportunity to not only reverse the events of the previous eighteen months, but to move beyond them. Now that we have our first support person in place, it still seems unreal, but Tom and I finally have an evening to ourselves, and we are going to enjoy it. It will take us some time to get used to this new way of life, but I suspect we will adjust rather quickly.