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ups and downs


swilkinson

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Sometimes we’re up sometimes we’re down. Oh yes, oh yes. It is getting that way, back on the roller coaster again. Not that we are always in pain, sad, exhausted, worried sick etc but that some part of the day it is so.

 

It is Ray who is in pain, bad pain, almost crying pain. He moves slowly, like a very old man, he needs help to get out of bed and he needs me to push him in the wheelchair as he can’t walk. He sits in the car and sighs and groans and clutches his left leg. And I do not know what to do.

 

Today he had another kind of scan. The radiographer kept coming back with questions: “When did Ray damage his back, when did he break his ribs, when did he break his hip, when did he break his pelvis, did he break it in two places or one?” I felt as if I had brought in an accident victim or a broken old man. It made me feel guilty, as if there was something I could have done about it all, like taking better care of him or something.

 

Maybe I should call an ambulance every time he falls but how can I tell when he needs an ambulance and when it is okay for us to assist him up if he can’t tell me if he is in pain or not? I don’t want to keep sending him off to hospital because I know it would not be long before a gerontologist or a specialist of some sort told me I couldn’t take him home because he is beyond living at home now.

 

I am not a burnt-out carer I am a worried wife. I have a husband who has so many things wrong with him now that it is difficult to sort out what is the dementia, what is the diabetes, what is the fall damage etc. Ray says his little toe is on fire, that it makes his leg shake, that his backache is so bad it is worse than what anybody else has experienced. BUT when he sees the doctor it is all fine and okay, yes, he has had pain but it is not that bad.

 

I don’t care if we never go to another specialist, or have another x-ray, or see inside another pharmacy. I want a fairy godmother with a nice 2010 version of the magic wand to flick that down, say the magic words and MAKE IT ALL GO AWAY!

 

And then Mum has had maybe a couple more TIAs in the past month and so is sleepy again and not responding to my visits and I feel down about that too as I love her and want her to have a peaceful decline and death rather than so many little strokes. She is a survivor though, in so many ways, a really tough little person.

 

But there are also ups, for me at least. On Tuesday night my Lions Club honored me by making me “Lion of the Year”. I say it is because of me looking after one (sick) Lion all these years, they said it is because I fulfill the Lions Club ethics and ideals. Either way it was so wonderful to get the award. I was puzzling out who this nice person the President was speaking about was and then he said “awarded to Lion Sue Wilkinson” and I was so amazed I was speechless and my dinner neighbour had to prod me and say: “Up you go then” to get me to walk up and receive the plaque.

 

I sent out some very excited emails as soon as I got home from the dinner and I am still getting congratulatory messages about that and the Bishop’s Certificate and it is really good to have some positive news to tell instead of all the negative new that is part of our present journey.

 

Sometimes it feels as if the good times come at a price. And I can understand why people cherish those quiet, dull, ordinary days when nothing much happens either good or bad and life just goes on. Because I value them to and hope we come to another pleasant plateau like that soon.

 

I have just spoken to John, the stroke survivor who runs Ray's Scallywags group to tell him of Ray's condition. He said he will be sad if Ray can't come for a while as he knows how much Ray enjoys this group. But if he can't come for a few months that is okay too, to give it time and see how it goes. Falls and other complications do cause members to drop out and that is an inevitable part of life. I just hope that this set-back is a temporary one for Ray.

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It sounds like Ray is very lucky to have you. You deserve more than an award. Much of what you wrote here resonates with me.

 

Despite my own health issues, I have had 2 grandparents die slowly of alzheimers disease and the subsequent complications. While we did what we could, it was never really close to being enough and I don't know if there is an "enough" to certain situations like these.

 

Someone told me once that there is healing in realizing there is purpose in our experiencing pain. Not pain that we bring upon ourselves but the pain over which we have no control and that we choose to suffer through. I believe this.

 

It seems like the rollercoaster isn't even fair, providing far more downs than ups. I hope there is some way you can somehow have more ups than downs.

 

Tony

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Sue:

 

I am hso sorry about Ray's declining health. I hope and pray you find good doctor and solution to Ray's health. Pain is no fun. Congratulations on your Lion of the year Award. you earned it deserved it. life is rollercoaster, I wish you many up rides than down. view from top is much better.

 

hugs,

Asha

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Sue,

I love reading your blogs. You write so well. From the heart. I know that it is sad to watch Ray's progression. It would be very confusing to have to figure out what is wrong. The docs can't even do that. You cannot second guess the condition. I wish that i had that magic wand to make everything better. If i had one wish..it wouldn't be for money..it would be to make everybody whole and healthy and without pain or fear. This is a pipe dream. In our second life this is what will await us.

;In the meantime..ride that rollercoaster. Life is an ever changing journey.

 

Ruth

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how-d,i will remeber your husband in my prayrs,i live in constant pain too.It can change every thing about a person.I also wish for magic words, seeing my wife go through this,and being her caregiver has helped make me stronge agin,i can tell by your words you are strong too!Keep the fathe,Big A.

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Sue: Again congratulations on the Lion of the Year. Well deserved and certainly well earned. I am so sorry that Ray is further declining. With the dementia and diabetes any doctor is going to go the conservative route with any care, especially pain medication. Give him anything he has ordered for pain on time, not as needed. Try keeping him dosed around the clock, smallest dose ordered. Obviously heat or ice, whatever works and stretching. I know you know all this but since it is so difficult to tell what is caused by what, sometimes going back to square one helps us to sort some stuff out. You know why they act that way with docs: afraid they'll get taken away and also the old school=docs meant hospital and death. As far as the falls, we do the best we can. I know Bruce's last one should have had stitches but when it finally clotted over and I kept it clean and dry, it healed up fine. And I hope that specialist was nice enough to tell you how old the breaks were so you weren't beating yourself up about something that happened last week. Funny Kira must have sensed I was writing to you, she just cuddled up on my lap, so she sends her best and wants you not to worry too much. The toe thing I would have said was probably diabetic neuropathy, but not so if it also affects the leg. One day at a time and lay back a bit. Find a position he is comfortable in for a while and when that is no longer any good, try another. If it is the pelvis that is the real issue, sitting then going to stand is going to be very difficult until some healing is done. And weight bearing will be next to impossible. Best of luck and keep up the good fight. Thinking of you every day, Debbie

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I am sorry you are going through so much. There is not much that can be said that can help ease your situation. I know you would rather have a "quiet, ordinary time where nothing much happens", but since that isn't possible right now, I'm glad the Lion's Club gave you a reason to smile. There isn't enough recognition in the world to equal what you truely deserve.

 

Kristen

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Sue, The ever present question seems to be; Are we doing enough? Truth is that most caregivers give above and beyond and that is certainly true with you. Relish the awards and certificates and time together.

Ruth

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Sue ~ thanks for sharing your thoughts. I can only imagine how difficult life is for you right now - we must keep plodding along, treasuring the few bright moments, like your award. Julie

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