Mood swings and home adaptations
Yesterday we had a home visit from the OT and a local OT responsible for the provision of equipment in the home. We have so far been supplied with a portable metal ramp and two commodes. The second one has feet that grip better and removable sides. They were here to advise us on how we could best adapt our home. As often can happen in informal settings something unexpected can come up. It transpired that staff at the hospital had already talked about Anita’s possible discharge and the fact that it’s not necessarily expected that she will walk before then! This was a body blow and not something I was ready to talk about in the context of a home visit.
One thing I have learned so far is that you never know how you are going to react to things. I have surprised myself many times so far as to how I have reacted to major events. There have been many times when I have felt a deep sense of calm and oneness with the world and yet I have had absolutely no control over myself whatsoever. This time though it was as if a switch was pulled in my mind that changed the track I had been on for the last 10 months.
That night I got more down than I’d ever been. I couldn’t get to sleep and as I talked to Anita the helplessness of the situation came down on me. For the first time ever I thought if we just went to sleep and didn’t wake up again it may not be that bad a thing. The downer didn’t last long but I have subsequently noticed that my easy going nature for the last 10 months has been replaced by a steely determination to improve things for Anita. I don’t sleep as well now and at times feel ill and exhausted but to be honest this is more in keeping with my usual personality. Given a cause to fight I become extremely driven. It’s not healthy and I am missing the easy going side but like I said earlier I am not in control. There is also an awful amount of stuff to sort so I need to get on with it.
With regard to the house adaptations various thing were talked about. The first thing is to remove the sofa bed from the lounge and install a single bed. This will help to transfer Anita and be higher off the ground when moving her. The portable ramp is heavy and hard work to keep moving it to the front and rear so a permanent ramp at the front of the house with decking in the rear will facilitate easier wheelchair movement. Bigger suggestions involve knocking out the porch wall so that the stairs can be made to come straight down so a stair lift can be fitted. The only problem being it’s a supporting wall. The bathroom which contains a bath would then need a complete overhaul. We had just got the house exactly the way we wanted it so none of this appeals. Another option is to convert our garage to a bedroom and wet/bathroom. It is very small but at the moment it would be the only way Anita could get a shower if she was home permanently.
Footnote: We had an informal assessment by the council to see if we would be eligible for a ‘disabled facilities grant’. This would mean they would help out with the cost of home adaptations. We couldn’t get any help because they look at joint income and anyone with any kind of normal salary has no chance. It does mean for us we have to think hard about any major works as we will get into debt.