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adapting to the new situation



This weekend was a turning point in a way. On Fathers Day Ray had a visit from three people, Trev, Lucas and myself. We all came in the one car. As a present we brought Ray a thick shake which he was able to drink with some minor coughing and that was our celebration. We bought Lucas a kids meal and he ate that while Ray ate his lunch so I guess you could say we had a meal together. No big backyard barbecue, no family gathering, no little ones running around or bringing gifts for "dear Pa".


Trev, Edie, Lucas and I went to Hog's Breath cafe at night and celebrated Trev's first official Fathers Day. Shirley had been here Tuesday to Friday that week so I guess she thought that was enough and Steve and family didn't bother to get in touch at all, so I guess that branch of the family don't know how to cope or considers the relationship over now. How very sad if Ray is no longer considered Steve's Dad.


This week the Aged Care Assessment Team (part of the Department of Health) will ring me with care homes they think are suitable to meet Ray's needs. Unless you are self-funding you don't look for your own nursing home. We will have a contributing amount to pay based on our income and assets as we are unable to pay the full amount needed. Until that is organised we pay a higher daily rate. Just as well we saved for a rainy day because those storm clouds are rolling in. We will also pay for his medications and in most nursing homes other extras such as haircuts and podiatry, clothing labels, pharmacy goods and a whole lot of other things we take for granted in our own home environment.


I am not doing all this as stoically as I'd like. Mostly I can speak to people without crying but answer either flippantly or with tears when the serious subject of placement comes up. I don't want to do it but have to as even with Trev's help I cannot do around-the-clock two person assist care. It is the end of one journey and the beginning of another for Ray and I. I will no longer be the hands-on caregiver. I will still be a wife and life partner and carer, I will still be the good friend if that is all there is to be. I will just not have control of his care any more.


It is hard for me as a caregiver of twelve years to do this. Twelve years ago, on 3rd September 1999 with fear and trembling and wondering how I would ever cope, I brought Ray back home from Woy Woy Rehabilitation Unit. He had had the two major strokes in Bendigo, one on 19th April, another on the 10th of May and had so many things happen to him arising from that that it took six weeks there and another three months at Woy Woy to recover enough to come home. Then he had in-home rehab, OT, PT and speech therapy for the next twelve months - a long recovery but a successful one.


This time he has had 13 weeks in hospital and "slow rehab" and is really worse now than when he went in. I think this is because he has had maybe a slight heart attack as the man in the next bed a week after he went back into hospital on 9th August after the failed discharge talked about the fuss during the night when "they worked on him" so I would say that was either a seizure or a heart attack. No report to me about it so I'll never know.


Tomorrow I need to look at two more nursing homes with a view to placing him for respite and later into permanent care if my first two choices of care homes do not become available. It is a long process and I doubt I will be over it for a while yet. Financially it will mean we will use our savings, Ray's retirement fund and possibly some of mine so that is hard too. But whatever will be will be. I am glad I have been frugal and had the money put by to do it.


So mentally right now I am a mess. I never thought I would get to this point. I had hoped that Ray would be with me for the years ahead and one day, an old, old man, would succumb to death as we all do. It feels like failure, it feels like retribution, it feels like the death of a relationship. I know that is "over the top" but that is how it feels. And some of you, having been in this position or knowing you will one day be in this position know that too.


I want to thank you all for your prayers. I know we all prayed that Ray would be able to come home here again but honestly I know now that that is not to be. I just want to find him somewhere safe to live out his days, somewhere I can feel safe visiting him and hopefully somewhere the family will visit him also. At the moment I am not really hopeful of that.


Please continue to pray for us both, for courage and resolution for me and understanding of the situation for him and a good outcome for us both.


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Dear Sue,


You will still be Ray's caregiver, just not the same type of caregiver as in the past. You will still need to make sure that he is as clean and healthy as possible in a facility. Mostly you'll make sure that he is safe. Your caregiving never stops because you love him and you'll never stop worrying for his health and well being.


I know this is very, very difficult for you. You mention how difficult it was the first time. All "first times" are scary and difficult. You don't always have to be brave and stoic. You've been through a lot and you're allowed to be scared and feel lost and alone. You'll always have this wonderful group of people at StrokeNet supporting you!


God bless you and Ray. I will keep both of you in my prayers.


Mary Jo

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you & Ray will be in my thoughts and prayers. I understand what you are going through is monumental right now, but believe that whatever is going to happen in your life is for your own good & though you are not able to see what Good is going to come out of this, but trust on God, he knows whole story & things will work out for your family.



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I can't possibly understand what you are going through. I can't imagine the heart-break, second-guessing, the anxiety. Only know that I am thinking and praying for both of you and your family. Debbie

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I feel a bit awkward and humbled to be here since you don't know me yet but what you are going through touched me so deeply. I want to say that you and Ray will be in my thoughts and prayers. I admire your courage and I pray your anguish eases quickly.


Please reach out to us any time you need for as long as you need. You matter.


Red Riot


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My prayers are ongoing for Ray and for you Sue. That's the one thing that brings us all together no matter how far apart we are in different countries. I feel ever how it happens it's for the better in all our cases when God is in the mix. We can't do it ourselves!


Just a thought...Would the same facility your Mum is in work for Ray too? I was thinking it is closer to your house in driving times and gas.


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Fred, Ray is to have respite in one facility with a view to going into the one Mum is in. They will both be part of the same excellent care then.


I know this will all work out the way it is meant to. All change is difficult and this particularly so as after twelve years of full-time caregiving it is now out of my hands.


It was so hard to admit that others were right and no, I cannot do 24 hour, around-the-clock care by myself or even with Trev's help without there being another person to relieve us so we can sleep, eat, have a shower.


That is what around-the-clock care does in a nursing home, provide staff who work and go home again, a caregiver cannot do that.



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Dear Sue; I have been following your sentiments regularly altho' haven't responded much. I am sorry this day has come when you have to change Ray's "home" but I definitley feel it is the right decision. It was bound to come sooner or later and better now than to wait until you hurt yourself trying to do too much for him. I will continue to bless you and Ray. I hope he adjusts as well as when my mom went into assisted living. For her, she blossomed for quite a while and some quality of life before she succummed to Alzheimers. I'll be thinking of you. Hugs, Leah

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Im sorry this cannot be easy possibly one of the biggest things to happen to you. When they told me Mickey could not come home--it was surreal. It only made sense to me when they said he would be safer there and of course they are right. You are in my prayers.

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My prayers are with you Sue. This has got to be a very hard time for you and letting go of being Ray's caregiver is not what this is all all. You will make sure that things are right and that Ray care is the best. Give Ray higs and kisses everyday, and take a walk and take care of yourself too. :hug:

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