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too much time to think



We are back in a holding pattern again. Ray is happy enough lying in bed in a surgical ward in our major hospital. He gets food and his bed changed and a little attention from the nurses. I don’t think he likes it as much as the little hospital locally as there is no-one wheeling him out into the courtyard to get some sun on his feet, no-one bringing him magazines to keep him amused. The little hospital is more in nursing home mode as most people are waiting to go on to the nursing home and where he is now is a proper hospital set up for acute care so there is a big difference.


I feel such a failure at bringing Ray home. He was signed off as able to do the walking and the standing needed for a shower etc but only took a few steps here. I showered him by myself on Thursday a week ago using a shower chair and the high arm walker. I took him to the wedding on Saturday in the wheelchair and he was okay.


The day after the wedding the staff said he was tired so he stayed in bed on Sunday. I learned to change him etc on Sunday afternoon. He was fine on Monday and seemed to be okay with coming home on Tuesday. But then on Tuesday here at home on the second transfer to the bathroom he slumped, bent at the knees and could not stand back up again – a mobility breakdown. I had him resting on my knees and managed to lower him to the ground, which saved him from falling. You can do that kind of thing once, not over and over. In the end I did call the ambulance, what else can you do?


I wish I knew how he could build his strength and stamina back up. The therapy staffs at both hospitals only walk their patients once a day, in the morning while they are fresh. There is no way a wife can walk a patient because of the health and safety issues. So although I would like him walked more often there is no way that can be done.


One of the ambulance officers said that for some long term patients hospital seems safe and when the patient leaves they have some anxiety and have another turn of some kind. Maybe that is what happened to Ray, he simply lost his confidence with being home. I am not sure how I can address that issue except that Trev said he will stay here for 24 hours next time and give Ray a kind of settling in period.


I think two out of three of my children now think Ray should be in a care facility. It is their concern for me that makes them see life that way. I know I am so good at telling others to look after themselves and here I am saying that I would sacrifice everything for Ray to stay in his home a little longer. It is such a big emotional issue “putting your loved on into care”. The theory is good but the actual doing it is very hard.


I had to put Mum into care to give Ray the attention he needed after stroke number four in 2001 and now I am facing putting him into care because he is too needy for one person to look after. It is such a hard thing to do. One thing I have been doing is looking at lifting aides as I thought maybe without having to walk to the bathroom etc I would be able to manage Ray at home. It is fairly exacting work though picking someone up and moving them through the house on a hoyer lifter or some such. I can use the wheelchair without a problem but he has to be able to stand for a few minutes.


Unless he gets stronger I really can't do this any more so if he can't relearn to stand and to walk confidently I will have to find him a nursing home placement. How sad would that be. I know every day people are making that decision, it is just one I hoped I would never have to make.


Of course Ray has been severely disabled for some time now. I guess I just fail to see him as he really is. Not surprising as we have been married for 43 years and to me he will always be the blue eyed boy who could waltz me round the floor effortlessly, smiling and talking in that smooth way. Now we are both passing from middle age into old age and neither of us spry or supple anymore. One of the physiotherapists told me I need to go home and think about looking after my own needs for a while. As I’ve been a caregiver for the past twelve years that is a hard call.


Even if I decide I can bring Ray home for a while I know he will not be able to help a lot with his own care so I think our time together is limited. Hopefully we will still have some good times though. If I can get some reliable care into place it will look easier to handle.


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Oh Sue I do not know how you have done it for 12 years. It has been 2 for me and we just celebrated our 43rd anniversary yesterday. Jack can do nothing for himself except eat and watch tv.

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Sue: please do not feel like a failure. I find you so brave and determined. There was no one going to tell you to have Ray placed. You wanted to make that decision based on your own knowledge and understanding. I only hope I have that determination if and when I may have to make that decision.


Bruce is WC bound, but almost independent with his transfers. Big difference. Ray may not even realize or understand his own role in all of this.


A high walker is tough to maneuver when the person is steady on their feet and understands their part in the movement. I do so wish he would qualify for some good, aggressive In-patient therapy, but then I think, cognitively is he up to it. And then personally, does he need to go through that again, after all this time?


The ambulance driver had a good point. And maybe that was the case. I have discharged a lot of patients who ended up in the ER the same day, for that very reason.


Sue, on one of his good days, when he is right there with you. Ask him-Ray, have you had enough? I applaud your children in their support, both with any decision you make and their willingness to help out as needed. And no you can not spend the rest of your days pushing a hoyer around. I did it for two months-it is horrible. His saving feat would be good safe transfers, with help; bed to WC and back, WC to shower chair and back, WC to car and back. That would be a start and I don't mean you dragging him over.


Please know that you and Ray and your whole family are in my thoughts and prayers. Debbie

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You have done a tremendous job. yes,that decision is a hard one. i do not know what i will do When and if I am faced with that.


Keep throwing ideas around. You do need to take care of yourself.


That is advice that we all know.


i will keep you and Ray in my prayers.



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I just want to say that you are Ray are in my thoughts and prayers. This is such a difficult and heart wrenching situation and I pray that God will help you in whatever decision you make.


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