Ray and I went on a bus trip today. I thought it would be okay as it was with the church oldies ( youngest my age, oldest 93) and only for five hours so I figured Ray could last that long. The day started badly with an "accident" but not a huge clean-up so I was still okay, Ray was okay, my temper was intact. Ray was "hurrying" as best he could as he knew we were going out for the day.
I did prepare some thickened drink for Ray, enough for two drinks, found an old thermos flask, a tall cup with a sipper on it, a couple of straws and packed some extra clothes in a small bag in case of more "accidents". It was almost like those days when you packed the nappy bag for the kids but I kept reminding myself that this is just part of our "new normal" and not anything to get upset about.
Our shower nurse today was a woman I call the "lovely one" as "lovely" is her favourite expression. She is a real gusher but so sincere that despite any heavy clouds hanging over you she still manages to brighten your day. I wish there were more people like her. So she shooed me off to do my walk and I came back feeling so much better. Amazing what a twenty minute walk in the sunshine will do.
There was not much parking at church as there was a funeral on but we managed to get a spot, and yes, the driver was more than happy to take Ray's wheelchair and so a happy day ensued. We went to a little village that specialises in gift shops, you know the kind, one step up from junk but very bright and cheerful. Ray and I shared a table with another couple for lunch and everything was fine so that was another plus for the day. With a lot of shops only open Friday till Sunday until the next school holidays it was a little quiet but that was good for the oldies with not a lot of people around and the footpaths to ourselves.
Ray was very tired when we got home and went straight to have his afternoon nap but I was so pleased he had coped with the day. It makes it easier to look ahead to summer with more hope. I have been so worried about his condition and how I would cope taking him out in public etc that I think I have been overly pessimistic. Well I hope that is the case. So maybe I can accept a few invitations and take it one step at a time, one event at a time and see how he copes with eating out etc. I'm so pleased today was a small triumph.
Yesterday we had our emergency respite person to look after Ray while I went to the last class of my "Carer Connections" course. I had to do that as he cannot go back to Daycare until his "health issues" have been re-assesed! She was just there as a minder as so didn't shower him or give him exercises. She did seem to connect with him though and he was okay with her being there with him. I stopped on the way home and picked up a birthday cake and a few "extras" so Trev, Ray and I had a nice dinner and dessert after. Ray was pleased with the phone calls etc he got throughout the day ( eight friends and family members remembered his birthday) so it was a happy day for him. He also got some birthday cards in the mail today which put a smile on his face.
It is hard as Ray's health deteriorates to see a good life ahead, but I am sure there are plenty of good times ahead of us. I keep telling myself I can only live one day at a time, not to anticipate problems, to enjoy the little things that amuse me, to find joy in a sunny day etc. Sometimes I can take that self-talk and it makes my day bright, but sometimes it just plain rings hollow in my ears. But it is all true. I have to live as happily as I can. It may not be happy ever after but it is happy for as long as it lasts.
I know some people reading my blogs will think I am a bit of a "sad sack" or maybe frequently down or depressed but really it is not like that. We all only get the one life and we each do the best we can with it. I often wish there was a road map for stroke survivors and their caregivers so we could see what is ahed. But I suspect it is better that we just be content to live one day at a time.