Ray is home. I got him from the residential facility yesterday morning and remembering past times decided to make it a “do nothing” day.

He sat inside, we both sat out on the verandah for a while, then we had lunch. After lunch he went for his nap on his bed. He got up for his dinner, watched some tv and went back to bed. I fiddled with bits and pieces around in the house, did some ironing, went out and swept the paths and gathered up the leaves the wind had brought down, before coming inside and cooking dinner…my version of “nothing”.

Today we said goodbye to our favourite Carer. Jeff has been mentioned in a few blogs, he is a great person and a very professional carer. He is kind and attentive, speaks well to Ray, focuses on him and treats him with respect. Every move Jeff makes is to put Ray at ease. I wish there were many more workers like him. At one stage Jeff was our Tuesday and Thursday person but now, due to his own health problems, he has Thursdays off. We will miss Jeff as he has become a personal friend.

Ray is now going to Daycare twice a week so his new Carer Chris will do Monday and Thursday and I will shower him Tuesday, Wednesday and at the weekend. It doesn’t sound much but it takes more than thirty minutes to shower and dress Ray and by the time we have breakfast an hour and twenty minutes of the day is gone. This means I will have to be on time on Wednesdays when I have to be ready for the Daycare bus by 9.20am. On Monday the bus goes north not south so I will wait till the shower nurse is finished and drive him there and pick him back up at 2.30pm.

Ray will still have Ron on Friday mornings for three hours in-home respite but will no longer go to Scallywags twice a month as they require him to walk in. It is a pity Ray will lose touch with this group as they were his men friends, mates, co-conspirators, a replacement for all the mates who slowly, over the years, deserted him. We will still go to the once a month stroke support meetings though and hopefully stay to lunch with some of them and maintain some contact that way. That of course is not as good as belonging to an all-male group, sitting round, telling stories and laughing at each other’s jokes. The male company has been real bonus for Ray.

Because of these changes I may need to change my chat night. I have been on Tuesday nights ever since I started as a chat host 4 ½ years ago so it is a big move to make. But there is no sense in having time off if I spend it at home. I am going to designate Monday as “Me time” and not shop or go to the pharmacy or make appointments for Ray. I am going to work out a program of things to do for myself including swimming or gym. I would like to lose some weight and build some muscle again so I will walk on the fine days too.

I have been looking after Ray for a long time. We have done all the rehabilitation and where he would allow it we have followed up with exercises. Now with his foot problems his fitness is going and even a few steps see him wobbly and sweating. It is such a shame that he is losing all WE (me as the coach) achieved. Today Jeff walked him to the end of the verandah, looked at me and said: “Just back to your seat, mate, you can make it.” I just about burst into tears, it was so sad.

I guess when Ray comes home after being away I see him as he really is. Day by day and week by week I don’t really see the changes. I know I am coping okay or I am not coping okay according to the illnesses or increase in disabilities we are going through. Lots of BM’s making lots of laundry and cleaning = not coping, then when that eases back = coping. Lots of communication problems = not coping, some thoughtfulness and cooperation=coping. Caregivers will understand what I mean.

So it is onwards we go. I once commented on a blog who’s author called it “Onwards and Upwards” that onwards is as much as I can manage, upwards, pushing a wheelchair is simply “uphill against will”.