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In our lives we talk to many people. Some responses are very trivial, like exchanging words with strangers, some are very deep and meaningful like sharing with a loved one the thoughts from the deep recesses of our heart. It is a sharing that is precious, meaningful and RARE.


Part of the problem with our modern life is that we now share with everyone some of the deep meaningful messages when we should instead be sharing the words of exchange. I am thinking of Facebook here of course. I put up my status, "Ray is still in hospital, no progress for a week". All the people on my friend list see it. Then some comment and all the people on their friend list see it. The ones who are curious then click on my name to see who Sue is and who Ray is. That means a lot of strangers are reading about me.


Recently I was aware that this is happening with my Strokenet connections too. A cousin emailed me about a blog I had written. She had put information I had given her together, figured out I was "hostsue" on Strokenet and found my blog. Okay it is public as I want people to benefit from it, so it is not an invasion of privacy or anything like that. I was just surprised and aware once more that we have a lot of witnesses to our lives that we are not aware of, more so since the coming of Facebook and Twitter. So we have to factor that into our communications.


I have had some problems with the hospital staff. I had a loud difference of opinion (okay, argument) with the social worker at the smaller hospital Ray was in before this readmission. Some of the argument has been passed down from various witnesses, mainly nurses and therapists, to the present ones. This is leading to a lot of conflicting information circulating. For instance one of the social workers said: "I believe you said Ray will never go to XXX hospital again?" No, I did not say that. One of the participants in the arguments did say she hoped she would never see us back again, but the social worker would have to go back to her and ask what she meant by that remark.


Words have the same impact as stones thrown into a pond, you throw a stone, you get the impact point plus ripples. So now I am experiencing the ripples of a past argument and no doubt being judged on that basis. I am no longer that nice carer I am something of a "dragon lady" now. This in turn will impact on the decisions made about Ray and on his behalf. That was something I certainly didn't think of at the time when I was loudly voicing my opinion.


As you can see on the previous blogs this hospitalization has really impacted on me. I think the continuing strokes challenge my trust in myself as a caregiver and my trust in the medical profession as a whole. It certainly has challenged my concept of the hospital as a place that provides appropriate care. Maybe my past encounters with the system were the exception not the rule as I thought he had excellent care and the concern was on him getting better, getting stronger and getting home. He was always stable before he was sent home and I had no hesitation in taking him back home.


In these times of unpleasant economic realities underspending is encouraged because of budget restrictions due to world recession etc etc. This time there doesn't seem to be an emphasis on care and rehabilitation for someone like Ray but care, comfort and early discharge, either into a facility or back home again. This is a problem as quick and easy solution Ray is not. And slow rehab, which is what he needs, is too costly. So chances are he will be discharged early again, an economic necessity. I am hoping I am up to that challenge.


I need always now to be mindful that unseen witnesses are recording some of what I do. Without being self-focused and paranoid we all need to be aware of this.


I remember in my girlhood an old ,old friend showed me a sampler she has made as a girl in Victorian times. It said:


"Be careful of the words you say.

Make sure they're soft and sweet.

You never know from day to day,

Which words you'll have to eat."


Author unknown.


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Thanks for your words of wisdom once again Sue!


And right at this time I wonder and worry that words I said may be impacting someone in ways I certainly never would have wanted.



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Sue: I am so sorry. This is such a hard time for both you and Ray. You know what he needs, all of us here certainly know what Ray needs and yet the professionals taking care of Ray seem not to get it. Sometimes you just want to say Please give this a shot, just for a while and see where it takes us.


Thing is honey, yes we must be careful and conscious of our medical spending, but an empty bed brings in no income. That is how our Administrator looks at it. We are getting cases that we have never had to deal with, but now have to adjust, get in-services, call in our pros to learn how to take care of these clients. But his beds are full. And to his credit, he is most aware of "bad" experiences and that knowledge getting out in the public. Our community is much larger than yours, yet one or two clients who have had "bad" experiences can do a world of damage.


We do not have social workers, but nurse case managers who are at their wit's ends, but I have never heard one of them say anything like that to a patient or to a family member. And we have a lot of repeat business.


Personally, that should not be your worry. It is horrible that staff is arguing with you. It really is a matter of dollars and cents when you get down to it. What is paid for by Ray's insurance and how are you delivering it?

Bruce did not qualify for the SubAcute hospital that specializes in Stroke. I do not know why and I probably could have fought it, but he was entitled by his insurance for some in=patient Rehab and I made sure he got it. But again, we have more choices here in New England.


You are exhausted, stressed and so worried for your Ray. I know if you could afford a full time PT at home, you would get him out of there tomorrow. Please do not do that. Neither of you are ready. Just try to hang in there and fight the best fight you can. Sometimes the Dragon Lady has to appear, but that is not your norm. Know I am thinking and praying for you and Ray. Debbie

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