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not much progress


swilkinson

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There is not much progress to report. There are two opinions about where Ray is right now – one is that he should have been sent to a place with more aggressive physio, the other is that he may not be able to do physio at all until the pain from the arm goes as he is still protective of it. One opinion I can handle, two I find confusing. Where he is now is a little 30 bed former cottage hospital now used as a convalescent home or a waiting place for those going into a nursing home. The good news is today one older lady returned to her own home so Ray can too.

 

I did see the treating doctor today and he questioned me quite extensively about how we function at home, how much extra care I think Ray will need, how I will go about ensuring that I have that in place (social worker’s job actually) and how long I feel that I will be able to continue to look after him. In most cases I said I have managed before and could do so again except that I will need much more help now.

 

It has been great having Shirley and family here, and having them visit Ray has been good too as it helps him to widen the responses. He is still not conversing, answering mostly with a yes or no answer, sometimes just falling asleep while we are speaking to him. I understand why the staff doesn’t see why I want him home but I figure as long as I have help to bathe him he can sleep just as well here as there.

 

I don’t think he is depressed so much as he is resigned to how he is now and incapable or unwilling to make the effort to change the state he is in. I am willing to give that time to change but how tired I get and how long I will be able to continue on with being a 24 hour caregiver I do not know.

 

Yesterday Shirley and I went to get the Enduring Guardianship papers drawn up, it is a sad task but by putting myself there too I don’t feel as if I am doing something wrong, it is just like taking out insurance, it protects us both for when we can no longer make our own decisions. Unhappily I have to make Ray’s decisions anyway. Shirley is also my Power of Attorney if anything happens to radically incapacitate me. When I tripped and hit my head and almost knocked myself out I thought it wise to make sure someone else could make decisions in my place if needed.

 

Mum is in a locked-down situation as one of her roommates aged 104 has shingles! I can’t go see her until her room comes out of quarantine. It is such a pity as Shirley goes home tomorrow and she only saw Mum once instead of a few times as she had hoped. Mum is so frail but somehow her heart keeps beating and she keeps living and breathing. Not that I’d have it any other way, when it is her time she will go.

 

If you passed me in the street right now you probably wouldn’t recognise me as I had my hair permed today. Instead of it being smooth and elegant I now look as if I have a fuzzball where my hair should be but I know it will settle down and in four weeks time will look good in the wedding photos. I do want to make that day perfect for Trev and Eddie, they have been so supportive of us they deserve the very best.

 

My job now is just to ensure that Ray as Trevor’s Dad is there sitting beside me in the chapel. I hope it is a sunny winter day like today preferably without a wind and maybe a hint of spring in the air. We were married on July 27th and everyone said it was a warm day for winter with a perfect blue sky etc so I hope it is the same for their wedding too. The little bridesmaids etc are all becoming quite excited. Christopher tried on his suit on Tuesday so we saw both him and Trevor looking very handsome. Christopher will partner Tori and Lucas will escort Naomi so all family. I guess some of us will shed a little tear eh?

 

Thanks to all who are praying for us, it is really appreciated. It is a hard journey, and one that caregivers take alongside the survivor. I think I worry more than Ray does as he has clean sheets, regular meals, someone looking after him 24 hours a day and I just have the worry of it all. I think our family as well as the hospital staff is very skeptical about the cost of caregiving someone with as many deficits as Ray has now. It is reasonable in my mind to give it another try but for how long? Who knows?

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Sue,

I am with you. I do think that I would give it a try again. You are either worrying that things are getting done at the nursing home or you can be at home and know that they are getting done.

 

Somehow I feel that everybody feels better at home. But, yes it is hard on the caretaker. As long as the caretaker can hang on then you are OK.

 

I pray that things get better and you get more help.

 

I do worry about you.

 

Ruth

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Sue:

 

you are strong woman & love Ray dearly to hang on in this difficult journey by his side & wants to bring him home. I am so proud & honored to know you. I guess good people like you & my hubby strengthen me to believe in goodness of human heart. you both will be in my thoughts & prayers for easy journey ahead in your life.

 

Asha

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Sue, We both know how sporatic recovery can be. Sometimes sleeping a lot is a really good sign. I would think that would make bringing him home easier as well. My difficulties with Dick were from him getting aggressive. He has had those sleepy times and life was smoother then. I'm so glad that you have your family with you during this time. It helps not feeling like you are all alone. Your wedding plans must bring a smile as well. So much to look forward to.

Ruth

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Sue: I agree with you and would suggest that you mention to the Doc, you just want to see Ray with one therapist, if even for just one session. You want to observe, not be visible to Ray. With your years of experience, you are going to know, in your heart, where you both are. What Ray's possible outcomes will be with therapy in the home or as Outpatient. You are not new to all this.

 

I am so glad Shirley is there with you and Trev. As a family, you get all the legal stuff in place, everyone on the same page. Shirley and Trev advise you as to what they can handle in the event you can not and you explain to them what you would like. Then just move on to the big doings! Trev and Edie's wedding and a big day for one and all.

 

I was posting on FB about "institutionalization". That is Ray accepting where he is, their routine, his routine, what he expects, meals at a certain time. For an alert and oriented, short term patient this is not good, they will back slide. For one of our stroke (brain impaired) patients that is not so such a bad thing. If with dementia or alzheimers, organic brain, dense stroke; this can be a positive. They accept and often relish their routines and schedules. Often function better-life is structured, can be depended upon. They are comfortable and suffer less stress as they know what the day brings. There are trade offs to both. Personally, with all that you have experienced and dealt with, a few hours with a professional PT, with you in the bac ground is going to tell you exactly what answers you are seeking. Love and prayers, Debbie

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I agree with Debbie. You need more answers

 

and input from the therapists etc.

 

Your positive,

 

CAN-DO attitude and HEART OF GOLD

 

may be blinding you to the

 

realities of having Ray home

 

now. If he falls, can you lift

 

him up, all by yourself?

 

Rachel

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