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a gloomy blog


swilkinson

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This morning I found it difficult to get out of bed. Not like me as I usually spring up and out, ready for the day. Twelve years of caregiving and always the alarm went off and I was up! Of late I have the alarm on the morning news and just lay back and listen to the headlines for a while. I know that I am stalling but it seems as if this is a part of my life now.

 

I find the nights the hardest to cope with. In the day I am busy, outside in the garden, inside the house tidying, sorting out and trying to get the house to where Trev and family can move in. In the middle of the day I am with Ray, supervising his lunch, reading to him in the courtyard, taking him for a walk in his wheelchair. I talk to the staff and know most of them by name now. I talk to the other women who come in daily as I do and we form an informal support group. I know I look at them and think “if she can, I can” and I am sure they look at me and feel the same.

 

At night, after the evening meal, I watch television for a while, come on the computer, phone one of my old friends, knit, sew and crochet, anything to hold the darkness at bay. But I still sometimes wake up from where I went to sleep in my armchair crying over the fact that I cannot bring Ray home again. I know it in my reasoned daytime mind but at night my mind says: “where is my husband, he should be home here with me”.

 

We have been back here in our own house since 1984 and I seem to have accumulated a lot of memories, well junk really, and as I sit and sort it out it is so hard to throw any of it away. The old school reports, postcards from friends, old magazines with that recipe or article I wanted to keep. I did it with Mum’s house when she moved into care and it took me six weeks. Now I am throwing away so many memories. I know in a way this is a preliminary to moving Trev and family in but somehow it seems more like throwing away the past Ray and I shared. Yep, I am a pack rat for sure.

 

I know I cannot bring Ray home again. So far I have not even taken him out in the car. He cannot stand up and hold his own weight, cannot walk, cannot....so many things. And I know this is our new reality and I have to accept that. At the home they move him with a Stand-Aide and it takes two of them to maneuver him into bed. I keep thinking that if I had the boys with me we could move him between us. I never had this problem with Mum when she went into care as her problems were old age and Alzheimer’s but she could still walk so I just put her in the car and drove her away from the home for a few hours. I cannot do this with Ray.

 

Ruth, I have just read your blog, had a cry and decided to be brave and put down some of what I am thinking in words for everyone to see. It is not a pretty blog, a bit raw and confronting, It makes me uncomfortable just writing it. I am hoping by doing so that I will see it for what it is – my reality.

 

I am often where you are now. I am still not reconciled to the fact that Ray is in a nursing home and I cannot bring him home. I am still getting used to going in there with my "smiley face" on and being bright and breezy with the staff and taking him out into the sunlight etc. I know this is not what I want to do, I want to bring him home, go on with our lives but logistically it cannot be done. I would never be able to afford the extra pairs of hands I would need to bring home a man who needs three people to take him to the bathroom, shower him etc. I hate the reality of all that.

 

I read the other blogs on here and wonder how some of the people like Sarah, and Missy, Steve Mallory’s wife can care for their very disabled loved one in their own home as they do. I think my stumbling block is that Ray is both physically and mentally affected by his stroke. He has no logic and no process thinking, so even if I say: “right foot forward Ray, now I will swing the left foot forward, now you swing the right” he cannot follow that instruction. So he is unable to do anything to help himself or to help me help him.

 

I’m sorry, those of you who are not at this stage yet, to cast these gloomy thoughts in here. Just remember that it is mine and Ray’s story, twelve years on from a couple of major strokes and not everyone’s story. I remember the ending of one of my favorite TV series, which went something like: ”There are xxx millions stories in this city, this has been just one of them”. The next blog will be more cheerful, I promise.

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You know? Life isn't always cheerful and all isn't always sunshine and lollipops--and I will be here for all of it. Right now your life is like that and I am glad you are able to talk it out. I hope if you need to you do it again rather than the cheer you promised.

 

Just be you with all the things you feel--good,bad and/or ugly. I wish I could do more than tell you that I care and give you a cyber hug but I hope you know in my heart it is just as real.

 

Jamie

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Your reflections are beautiful in their sadness, honesty and circumstances. No need to be chipper on my account. I do wish I had something more for you though.

Lisa

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Lisa: that was perfect.

 

Sue, please also remember that medically Ray is not ready to come home. Until the heart and seizure issues are resolved, he would be in the ER several times a week, subjected to that and an entire new and complicated regime with the hospital.

 

For now, you grieve for what was and is. Know you, Ray and your whole family are in my thoughts. Debbie

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Sue

This is what blogging is all about getting your feelings out and sometimes when we write our minds wrap around things a little better.

Come here and do what you have to do for yourself we don't need a fake Sue and you don't have to waste your engery on trying to be cheerful when you are not, your journey right now sucks and I wish I could do something to help you out.

Know that you have many friends here and we all love you and feel your pain so blog what you feel. Get it off your chest.

As always you and Ray are in my prayers Sally

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HI SUE , you must remember sue you are still a wonderful cargiverand ray knows that you have simply made sure that ray is in a better place until ray is then able to come home to be with you once again, and then you will be happy and you know as munch as you will want it to be happy and gay life isn"t always like that there is usually alot of choice had to be made some bad some good but it is all for the best care that ray can get for the time being untill ray can get better, all the best to you sue , i will be praying for you that there is better days ahead for ray and for you sue god bless you sue, and god bless you ray

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Sue,

I love your musings. Honest and blunt. Yes, that is what I need.

 

You write from the heart and I can learn so much from that. I know that it is difficult to learn the new today. Change is what the new life is about. Trev and family will bring all sorts of new life.

 

William told me that he hates change. I said that is what you feel....but change is life.

 

Take care and keep cleaning out the house. I like you keep too many things.

 

Ruth

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Sue,

 

I really wish I was a bit more able to take a flight to Australia with the wife for a vacation there. Just getting to visit with Ray and you would mean so, so much to me at a time like this.

You are such a strong woman, mother and wife! I bet you got a lot of how you are from your mum who was and still is a strong woman in her own right. I fully understand your temperament on a daily basis from what I experienced in two years from the caring I got from my wife. You are a true blessing for every member of your family!

 

You have done all you can do as one woman and wife as care giver for Ray. He is not alone just not at his house and we all understand and continue to pray for Ray and his health status.

Fred!

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"Women of the world unite to cry in their blogs." "At least you guys know that there is someone else out in the world caring for you. You may have never met but you know they care because they are crying for you."

These are the words of my 18 year old daughter who was with me as I read your blog. I thought them beautiful and quickly typed them out to save for this reply.

 

Sue, you have written so many wonderful blogs and given sage advice but this is the best you have ever written. Painful, yes. But so so real and touching. I did cry. I understand that hollow spot in the middle of you; the mid-night tears; the pain of sorting through memories called "stuff"; searching for a reason to get out of bed in the morning. I want to make it better for you and me, for Ray and Dick but I can't.

 

You will want to be sure to take care of yourself. Depression is common and some folks can use the added umph of medication or counselling. Staying busy is good. Don't push the tears back inside though. They can be like a cleansing rain. There are times we have to put the smiling face on for ourselves and for others but never never feel you have to deny your feelings, especially here. If we cannot take you where you are, shame on us.

 

The forced movement to make changes to get ready for Trev to move in may be a life saver. I have been getting rid of things more gradually. It is amazing how important silly little momentos seem. But I have found those things can drag me down if I hang on to them too long. Sometimes taking a picture is good enough to save the memories while we regain space.

 

Things will never be the same again but just like it did after strokes, we manage eventually to find that "new normal." You will feel like smiling and laughing again. You will still have good times with Ray. Last night was the first time I was able to drive myself to see Dick in over a month. He had one of those rare moments of lucid thought and we laughed together for almost an hour. It happens! In the meanwhile, as Elyssa said, "...you know they care because they are crying for you."

Ruth

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