I've been following the thread expressing the difficulties of living with invisible deficits and now Stu's new thread of wishing that you weren't carrying visible deficits that cause some embarrassment and make you the butt of awkward comments. Frankly I wish none of this had happened at all. Ok, ok, I would have missed out on you all as friends and supporters, I would have still been working and living in my own small revolving sphere but somedays I'd trade it all for ONE NORMAL DAY!!!
I guess my blogs of late have sometimes expressed crudely how I feel about some of the new deficits that are appearing as a result of Ray's mixture of stroke damage and dementia. The BM problem is not going to go away so I just have to get used to it. But now there is the return of another old problem - left side peripheral vision loss is causing bumps and falls. So Ray is often bleeding from scrapes on his left side arm or leg as he continues to lean to the left and bump himself again door frames, projecting shelves, table corners etc. This also means I must walk close to his side again, not just walk off and do my own thing. This time I took the groceries in to the house while Ray was walking along the back patio and he had another fall. He needs me back walking close beside him. I need to walk a little bit behind, a little to the left.
The future looks none too bright some days so after a few discussions with friends which always seems to end in them saying: "I think it is time for you to place Ray now." I have decided to shut up and just keep doing what I am doing for as long as I can. I tried to book some respite today but the place Ray usually goes is booked until December. I don't want to book him in somewhere else but may have to if I find my frustration, stress, anxiety on his behalf etc is building up to the dangerous level. It is my fault because last week I was supposed to get back to the co-ordinator about two weeks respite for him in September but didn't because I had other things on my mind. Mea Culpa!
The family came on Sunday for lunch. We'd picked up Tori on Saturday for her promised "sleepover at Granmas" for the school holiday break and as it was the last weekend thought we had better make good our promise. She is a delight to have. She works on a program in her mind and sentences start: "For my next thing Granma..." and so Saturday slipped by with no trouble. Sunday she came to Sunday school and was the sole pupil. So she got a lot of attention from the super and me as I was the "helper" this week. She was attentive and asked the sensible questions so I was pleased she had been there. Basically her parents are not religious but they know we are and makes the concession that she can go to Sunday school while she is here, which she loves.
Even though she was the only pupil we did the full lesson, read the reading, told the story, did the art work as an illustration. She did it all, asking the right questions as she went. Then at the end of the service we went into the church. The minister always asks the Sunday School kids to come up and tell the congregation what they had done. Tori was ready, she knew the story and the teaching from it. So up on the platform she went. The minister asked her a couple of questions but she became tongue-tied, all she could do was look at him with saucer eyes and nod or shake her head. It was a classic appearance. Luckily he took it with good humour and said to the congregation: "I guess we'll just have to take her word for it , she seems to know what she did." The congregation chuckled and clapped and back she came to me very proud of what she had done. It is good when our shortcomings are treated with kindness, I wish it was that way everywhere.
I wish... all kinds of things. I wish Ray and I could have our planned retirement, the trip around Australia in the camper, those other overseas holidays we had planned. Ray without the strokes would have been kept busy helping the kids renovate their homes, he was always a Mr. Fixit. I would have had more time for the community work I always did both in the church and in the secular comittees and organizations I belonged to. With a full superannuation pension we would have had plenty of money to live with moderate luxury. No more scrimping and scraping to get the things we needed.
But wishing won't make it so. We have to live with the realities, in my case of Ray's slowly deteriorating abilities and my increasing involvement in his care. I still think we live a worthwhile life, I just think it is mighty different from the one we had planned. And that is a way forward for us in a way. I was listening to an interview with a man who had, in his middle years, become an alcoholic. He eventually dried out and became a mentor for alcoholics. He said he had to go through the experience in order to be of use to a lot of people, people he would never have helped if he hadn't gone through the experience of being an alcoholic himself. I can understand that. We, caregivers and survivors on this site, have by our experiences, earned the right to speak of them. In doing this we can hold out our hands to people we would not otherwise have had contact with. We can in this way elevate the experiences to worthwhile life lessons.
I guess I will never stop making my wishes but I will know that is all that they are and that no amount of invested time will make them any more real. I have to move forward, day-by-day, week-by-week, month-by-month etc I have to live this life I have been given. I can do it with a good will or a poor me attitude. I can do my best or turn over my responsibilities to others. It is my choice. So tomorrow, as today, I will once again choose to look after Ray.