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stone walls


swilkinson

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" Stone walls do not a prison make,

Nor four grey walls a cell"

 

~~Author unknown~~

 

I've been thinking, well that was what I do in the night when I don't sleep. I've been thinking about my life without Ray. He is still in hospital and will be for another week. AAARRRGGGH!! How long will this continue? Anyway I have been thinking about what I have been doing for the past six weeks and think mostly I have been waiting, waiting for Ray to come home, waiting for people to ring me back, waiting until it is time to go down and visit him.

 

Ray has been home with me for seven and a half years. He came home in September 1999 after 4 1/2 months in hospital after having two major strokes four weeks apart. I spent every day just about with him in hospital, rehab etc so that I could be his cheerleader and ensure that I knew exactly what was going on all the time. This time I have had a few days off as boredom sets in very easily for him, he gets tired very quickly and I think he feels he is better alone a lot of the time. That is a slow change that has happened over the seven years, partly because he needs to have a lot of quiet time to heal and partly now because of the dementia.

 

This leaves me with a lot of time on my hands which I use doing handicrafts of various kinds, coming here to Strokenet and doing housework and whatever else needs my attention around the house. I thought that while Ray was in hospital I would feel freer but it doesn't seem to have worked out like that, I think because he is always hovering at the back of my mind. It is impossible to recapture that care-free pre-stroke lightheartedness I was once famous for.

 

In our lives prior to Ray's major strokes some of my friends thought that I was a bit of a clown. I always treated life as a bit of a joke. I could always see the bright side of life. For some people I was "Susie Sunshine" and being thought of as "religious" as well they found me a bit hard to take. I guess the years of caregiving have whacked that out of me. I still have a sense of humour but it is more basic now, the flights of fancy rarely happen. Even without Ray alongside this seems to be the case.

 

I think I've built myself a prison cell. It is a large roomy comfy one but at best that is what it is. I have freedom of a kind yet I don't know how to use it. I think that is the case with some of the survivors here as well as some of the caregivers I have met in other support groups. They too have a large roomy prison cell called "home". They all spend a good proportion of their lives in the caregiving role and use some of their downtime wistfully thinking of all those things they could just do if they were free but don't know how to unlock the door and get out of there.

 

I am going to see if I can get some counselling on this issue. Ray will be home next week and my life will resume the caregiver role. I may or may not get further help, I may or may not get some respite. I may or may not be able to resume some sort of life outside of the caregiving role.

 

This is not supposed to be a down-beat, depressing idea. This is supposed to motivate me to go back a step and look at the life I live as a caregiver and see if I can improve on that. Please don't say "never mind, things will get better" I am sure they will. I know it is hard sometimes to see what is before you and not be depressed but life is always a challenge. What we make of it is really up to us.

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"I've been thinking about my life without Ray."

 

Sue,

 

That line really struck a cord with me today. A few days ago I went into a micro-mini depression for a few hours wondering that exact thing about what my life without Don would be like. He's been my best friend for so many years and he knows me better than anyone on earth. I can't imagine how lonely that will be without him, assuming I go first. Of course, there is no way of knowing who will go first. That point was driven home to me today at speech class. One of the speech client's spouse was gone and I asked about her. The spouse just found out that his caregiver has cancer EVERYWHERE and isn't expected to life 3 months!

 

I hope I haven't added to your depressed idea. I hope you can find that counseling you're looking for. It's not an easy time for you, with Ray's health the way it is. The future can be so uncertain...but isn't that the way it has always been? We just didn't know it was as uncertain as it really was.

 

Jean

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Jean, Ray and I have been together going on for forty years. We don't have a lot of interests in common but we have our kids and grandkids to distract us. We used to have a large number of family and friends who have been there fo us in the past, not so much so now.

 

Much of the time we are together. He is now my constant companion. He is an essential part of my life. That should start again next week but I wonder how long for? It is the "unknowing" that is playing on my mind at present.

 

Thanks for understanding where I am coming from.

 

Sue.

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Sue:

 

yesterday I watched Oprah show and she was interviewing journalist family where journalist got hurt in Iraq 4 years ago, 1 sentence hit the cord with me was the spouse fearing worst for her hubby was travelling to germany with her friend, and her friend told her whatever the outcome you will be okay. I just want to tell you same thing, why worrying about your future, when we don't even know our today, just have faith in God, and whatever will happen, it will be okay, and you will do great

 

Asha

 

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Hi Sue, We don't always have control of what life throws our way. It is not a bad thing to look ahead.

 

I know with caregiving, you get locked into daily duties and routines, the world pretty much revolves around the one you are careing for. Comfort, foot, entertainment, etc..... We get pretty well set and used to these routines. When we don't have them we are a bit lost.. on what to do now?

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Had some time out with my grandkids today, went after lunch and had a play with Alex ( 8 months old) then picked up Tori from school and took her to swimming lessons while her Mum went to the airport to pick up her Dad who had been interstate for a job interview. Boy, it was such a good feeling playing with those two little people.

 

Asha, thanks for your advice. I do have to remember my future is not in my control and that whatever happens there are good times ahead. I just am not focussing on the good times at the moment. I must try not to get bogged down in the detail of life but look at the bigger picture. As soon as Ray is back home I will look at including some grandchildren's activities in our routine. They may be leaving to go interstate but we will cross that bridge when we come to it.

 

Thanks for your replies. I know I must seem a bit of a sad sack at the moment but this too will pass.

 

Sue.

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