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blue on a gray day



This is a grumbly kind of blog. The skies are gray the day is cold and I feel blue. I went into the hospital yesterday to see the physiotherapist who has been working with Ray, she had gone somewhere else (she also works in the community rehab team) so I couldn’t see her. Nor could I see Ray as he had gone to have an xray of the humerus to see if it had healed enough for him to do more walking etc than he has been doing.


I went into to see Ray later and he wasn’t talking to me. He was sitting up in bed with his eyes firmly closed ignoring me. I guess he had been taken to the hospital, wheeled somewhere until it was his turn to be xrayed, returned to the same spot until it was time to come back to his present place. All without being able to eat or drink or even asked about anything he may have needed. With his present lack of initiating speech I guess that is hard on him. If I had been notified I could have gone in and kept him company. He is now officially listed as having aphasia.


Today I again tried to see the physiotherapist again, this time she was away on a course and will be for the rest of the week! So I have no way of knowing how Ray is doing in respect to standing up, walking a few steps and sitting down. I feel as if I have been left out of the loop again. This is in a hospital plastered with signs asking: “Are you a Carer? We value you!” sure they do.


So I asked the nursing staff if someone could measure Ray and let me have a waist measurement. I need to know what size clothes he will fit into for the wedding, which is less than four weeks away now. I have access to a couple os suits that may fit him. I don’t think he will be able to do much but a hired wheelchair taxi to the service venue; a taxi to the lunch venue and a taxi home or back to the hospital is what we are planning. An expensive solution but I doubt they will have him to the stage where he can bend down and sit on the car seat. That will have to come in the home stage if there is one.


You can tell that I am beginning to lose hope now. I keep asking for prayer and I am praying for a miracle. I spend my time cheering Ray on, talking to the staff about how this all might be accomplished. The staff are very non-committal and I am getting strange looks and I think that in the end someone will be appointed to have a serious talk with me and that will be the end of my planning to get him home. I hope that I am wrong but no-one is telling me anything positive and Ray himself is just sitting, watching tv, eating, having a nap, no signs that he is enthusiastic about doing some exercise to make it possible for him to come home.


I might be a little vulnerable today as I had an upset tummy last night and didn’t get much sleep. I shouldn’t be worrying….well maybe I am, sub-consciously because I am trying to remain positive and picture him home here with me. It is a big ask, coming from so many negatives, the stroke, the chest infection, the broken arm – to being strong enough to come home again. I do have faith it can happen but so much depends on others, the therapists and on Ray himself.


Like all caregivers I am aware that so many people are worse off than Ray and I are. We do have some assets, like a roof over our heads, a small income, the advantage of medical treatment through Medicare. Though of course due to our budget restrictions we are not able to pay for private care or the equipment we will need to bring Ray home. I will hire equipment and hope that it is for a short time, until Ray gets his strength back.


I am praying for a miracle, I always do, for me and for others. Not a mighty big miracle just the sort that will see Ray making steady progress and result in him coming home once more. And I do mean once as I can see this re-occurring further down the track. Ray is not strong and although I will try to keep him from having falls I know that he can “fall into space” when he is right beside me. So his being here at home will be a day-to-day thing. One day at a time, one hour at a time, one minute at a time.


Sorry for this “sad sack” kind of post but it is where I am at – here at home alone and so sick of being forever a lady-in-waiting.


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Hey Sue, You are allowed to have a "grumbly" kind of blog cause there are just those kinds of days (or sometimes weeks)and we have all got to get through them. Knowing that we are all facing the same sorta struggles can be very helpful.

Don't give up the dream of bringing Ray home until YOU decide it is time. I was Ordered to put Dick in a nursing home 5 years before I did. I was right and "they" were wrong and we had 5 more years to enjoy together. I also challenge the idea that the less our guys can do the more they need to be in full-time care. One of the reasons that Dick must be in care is because he can still do things which make him difficult at times. I have cared for him when he was bed-ridden and that was frankly much easier. We have all ready done all the crappy jobs so there are no surprises. As long as YOU feel you can do it you can.


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Sue, I'm praying with you long distance and you know?...I feel God is not ready for Ray, his mansion is not finished yet! I have those same kind of days/nights too, it's common I think.


Those kinds of signs are all over the VA facility saying "We care and give blue ribbon service to our veterans." I haven't figured out what that care is yet cause I don't get it!


Maybe the hospital can get their act together soon, he can get better and come back home to you! I'm praying asking God to work in Ray's life!

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Sue: I am so sorry. Please accept a big long distance hug, because that is all I can give. I am surprised the facility sent him out, without a caregiver and not notifying you. If something had happened to him off the property without notifying you, they could be held legally liable. You might want to mention that at some point.


Part of your upset, I am sure, was thinking of him in that situation, alone and what he was feeling. No wonder you had stomach trouble.


When you go tomorrow, ask to read therapy's notes in his chart. Not the same as talking to them, but you might get a feel of what he is doing. And please do ask for the written xray report. Don't take a verbal, you want to read it for yourself. If you need help, message me. But with Ray's fracture history, I am sure you will know what you are reading. If you see that healing is going well, ask to talk to his Doc and ask what steps up he will be ordering for Ray's therapy when the therapist returns. Get it in motion now.


Honey, I know you want him to be well presented at the Wedding. He was always a Beau Geste and you have maintained that for him for years. But please keep in mind it will be a short stay, Trev and Edie will be thrilled and just his presence will be important. A dress shirt, tie and pants that fit will be fine.


You feel you are losing him cognitively and you are probably right. Institutionalization is a horrible thing. Just to see the life sucked out, day by day. You do not feel it is time for that for him. So you will rise up tomorrow, get your game face on and go fight the good battle. Until you give it a shot, no matter for one day, week, month or hour, your heart will not rest easy until you are proven wrong. I am right there with you, so know you both are in my prayers and thoughts. Debbie

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Of course you are entitled to a grumbly sort of day! It is so hard for me to remember that it is winter there when I am roasting here, 98 and no rain in sight! But, we all know God gives us only what we can handle - weatherwise and health-wise. No where is it said that we could handle it easily; that's why we caregivers have to speak up and make our presence known.


If it were up to the hospitals and nurses, I'm sure some, if not most, would rather our loved ones were in "institutions" where they could be "dealt" with. As Debbie said, tomorrow put on your best face, request and then demand to see reports and charts. No one can tell a nurse, doctor, or therapist how their patient is doing better than the patient's caregiver.


I'm sorry that Ray had to go through all that by himself; I will keep both of you in my prayers. Kathy

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I believe in miracles ...I will pray for that for you and Ray. I like you....do expect the unbelievable. Just a little something to get Ray home.


You know that it takes times to recover from a stroke. The mind is funny that way. Cognition!! It takes time for Ray to respond to therapy and to you. He needs to rest.


I know that you will get Ray to the wedding on time... This is exciting!


Yes, a day at a time, a minute at a time... Bless what time we have together.


You and Ray are in my prayers.



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Believe in Miracles they happen everyday. Here's a big hug :hug: from me to you. You are aloud to come here an vent that is what you teach each of us so do it, it helps you clear you heart and mind.

Hope that you are feeling better and that you get some of that old lady kick butt thing going when you get to the hospital next. Stand in the hall and tell anyone that will listen that YOU ARE A CARER AND HAVE BEEN FOR LONGER THEN ANYONE ELSE HERE NOW. Make someone listen to you and get the information that you want and need, you have rights too.

As always you and Ray are in my prayer. :please: take care of yourself. Sally

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