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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.


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Sue: Playing this waiting game is very hard. I am playing it too. Wait and see--wait and see. Or "lets cross that bridge when we get to it". My thoughts are with you. Love and prayers. Shirley

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You know the drill. Wait and be patient. You are prepared and ready for any eventuality.


Let's see what the deciders decide.


Let's see what your son and family decide.


I do pray for you and Ray. It is funny how life is revolved around our loved ones.


What to do with all this time on our own.?? Just wait and be patient.



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As the great poet said,


“Time is too slow for those who wait, too swift for those who fear, too long for those who grieve, too short for those who rejoice, but for those who love, time is eternity.”




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Sue: well things are snail-pacing forward. You took care of the bathroom. Just look around the house, you have been dealing with this stroke thing long enough to know what might have to be done. I am pleased that you are still positive about Ray being able to come home, at least for a while. You have not shut the door on that. Just see how he does in Transition.


You do so miss him and worry about him. I don't know what you pay for nurses's aides there, but see what will be paid for and look at the budget. You may be able to do some time privately, rather than have to move in with family. If you find Ray is pretty much settled in for the night at bedtime, have someone come in or Trev or Edie, to help you with wash up change into night clothes, pad on his bed, Texas catheter; help him into bed however that pans out-you are off duty until morning (schedule all his pills around his "up" times, so you do not have to awaken him)-then hopefully paid-for AM help to get him out of bed, showered, dressed and into his chair. All may well we doable, but can only consider options until you see how Transition goes.


In the meantime honey, and I know this is a rough time of year for you, please do consider some special things for you: get a physical, if you haven't had one this year; Mammo and Gyn. Hairdresser. On bad days, you like to cook and bake, get some stuff into the freezer for back up. Also consider how you can cut down on outside work, come Spring and if Ray comes home: pots for the veranda, less actual flower-veggie beds. Rearrange your books so you can have some reading material for Ray, or for you to read to Ray. Lastly I want to to buy a new nightie. Figure something Spring into Summer and pack it away for that first special night. Get the car tuned up.


You will get through this, you know that. Just try to fill some time so you are not always dwelling on the sit and wait and what if's. You know I am thinking and praying for both of you. Debbie

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Sue, I agree with everyone's post above. Take care of yourself and do what you can now. I hope you get the help you need. Yes, I remember that Perry Como song "Catch a Falling Star". Now, I will have it in my head all day. LOL I will pray for you and Ray both.


Take care,



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I haven't been online in several weeks and just read some of your past blogs. I know that saying I'm sorry for what you're going through doesn't help much. It seems our whole lives have been out of control since we started down this path with those that we love so much. We all take different paths but we're pretty much on the same road that stroke has sent us down. I think of you often and know that you will make it through this. Ditto to what everyone else has said, use this time to take care of yourself and get some "me" time.



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