the waiting game
For the last few days I have been trying to make some decisions about what is best for Ray. I have seen several social workers and looked at what he needs to come home etc. I have had a new toilet put into our bathroom and discussed with our son whether it would be feasible for him to move back in with his family so he could help with Ray. That would be a major shakeup for all of us, fitting five people into a very small three bedroom house. All in all I have done everything I thought I needed to do. Now I just need to relax and let whatever will happen, happen.
I’ve noticed lately on here the cries for help often include the phrase “what will I do now?” The answer is often simple…wait. We all need to give our brain a chance to heal if we are a survivor, our minds a chance to sort things out if we are a caregiver. Some things you just can’t hurry. It is a bit like having a baby - about half way through we would like the process to be over, finished, the baby out, our lives back to normal. Ha! Ha! As if that is ever going to happen!
So tonight I pledged once more to just look after Ray as best I can, no program, no schedules apart from those we have to make for medical appointments etc. We will just live out our lives one day at a time with him home in the home we share, the house he built. It is a lovely thought, whether it is a practical one or not remains to be seen and whether it can be lived out which is more to the point.
Today I had an interview with the social worker to get the care lined up. She noted all of Ray’s conditions, past and present, his long battle with strokes and diabetes over the past twenty one years. She had a picture of Ray as he was, as he is now and then she interviewed him. Now the findings go to her boss who makes the final decision, she says I will hear from her by the end of next week. Ray is hopefully to go to the Transitional Care Unit and get some more intensive therapy.
Isn’t it strange that so much of this is out of our control? One person decides this, another person decides that - doctors, specialists, social workers, therapists all have input into what happens. We always find ourselves on one waiting list after another. We have dates to stop and start physio, medical procedures scheduled, blood work due etc. Nothing we can do can alter the outcome and yet it is our life that it affects? In this case it is how Ray progresses that affects if I can care for him adequately or not. I wonder how we got on before so many other people were in charge of our lives?
For me it is time to move ahead, getting things ready for Ray to come home. The present therapists tell me that I will not know what I need until Ray’s discharge, as we don’t know what he will get back. It is like after the 1999 strokes with other people doing what they can, me doing the waiting. The problem is that life has moved twelve years on since then and now it is ageing as well as diabetes, strokes AND dementia we are dealing with. Ray isn’t the fit young man he was when he had the 1999 strokes, nor am I that younger woman easily dealing with all the problems involved.
Today I went to a funeral, the person was in their mid-70’s and died of cancer, he was whimsical, had a real sense of humor. The church was packed with people from a lot of different walks of life, which is how it should be. He had lived well. At the end of the funeral which was pretty solemn we walked out to Perry Como singing “Catch a Falling Star” I know the words as it was one of Mum’s favourites, she had that album of Perry Como’s and one of Dean Martin’s long playing albums as her cheer up music so we heard it frequently. The song finishes up with the words “save it for a rainy day” which seemed so appropriate with the rain falling down in bucket loads outside. Maybe I will make that Mum’s last song too. She really loved it.
Mum’s room mate died this morning, the lady who had just had her 104th birthday on Monday. That is a long life. She had shingles recently and said she was finished with life and wanted to die. Mum had shingles 20 something years ago and said the same thing then, it is a painful disease. So next week I will have to go to another funeral as she was from our church too. I guess we lose a lot of our oldies in winter.
It is a bit eerie being on my own for so long with Ray away. The wind is whistling around the house and the rain is falling down and it is all muddy and slushy and just the opposite of summer here. I wish you could send me another sunny day as I hate the gray, dull days of winter. I told you all when you were complaining in January that I would say the same thing in July.
Thanks for listening to my sad sack stories the past few weeks. I know there is nothing anyone can do about all of this, as I said – it is a waiting game.