• entries
    812
  • comments
    3,772
  • views
    232,178

An award for caring


swilkinson

1,185 views

Ray and I joined the WAGS (Working Age Group for Stroke) in August 2006. Ray had already joined the weekly at that time discussion and lunch group for men called Scallywags and was enjoying the male company. When a man has a stroke and has to stay home with his partner he can really miss the kind of company he found by working so Ray really enjoyed meeting with the other Scallywags. I just enjoyed the time to myself as at that time I didn’t have carers coming in and Ray and I were together 24/7.

 

I’ve blogged a lot about WAGS over the years, the meetings, the personalities, the Women’s Weekends, the Carers Dinners and Lunches. The people of WAGS have been a big part of our lives. It has been our “real life” support group. Ray hasn’t been to Scallywags much this year. He has had so many things happen to him and although he can’t walk at all now his mobility has not been good all year. We have only been to a couple of meetings too and I haven’t been to any of the luncheons.

 

Despite our absence our friends there have not forgotten us and decided to nominate me for “Carer of the Year”, an award handed out at the Stroke Olympics held north of us at Newcastle each October. Ray and I have never been to one but the reports we have had back have been glowing as our caregivers and survivors come back with medals for scrabble, putting, darts, croquet and a dozen or more simple sports. Everyone says it is a great fun day.

 

On Wednesday night I got a call to say I had been awarded “Carer of the Year” for supporting other carers both locally and internationally through my work here on Strokenet. I was amazed and humbled as I am sure there were many people more worthy of the award than I am. So on Thursday the secretary of the WAGS group and her husband delivered a trophy, mine for a year and an inscribed glass plinth which I get to keep. I was really overcome by receiving it. It is not something you think about when you are a caregiver that some organization will award you for what you do out of love.

 

So it is down to the amazing people here that I got this award. Without your support and encouragement I doubt I would have been able to keep going looking after Ray for as long as I did. You all know how sterile life can become and how burnout hangs over us all like a little black cloud? Well the support of all of you allowed me on many occasions to ignore the cloud and wait for the sunshine to come out again.

 

I’ve told Ray about the award but I doubt he took the information in. Even the news that we are to become grandparents again in June seems not to have been stored. Trevor told him once and I’ve told him a few times but he still seems not to remember. I don’t think his memory works on much now. He is a dear soul, my soulmate, and I visit, sit with him in his room, in the common rooms and in the sun out in the courtyard. I read to him, help him have lunch, even help feed him when he seems too tired to hang onto the spoon or fork which is happening more and more now. But I know he will not even remember I have been there some days.

 

If I seem a bit sad these days, I am. It is taking a lot of time for me to reconcile myself to this parting of the ways, this separation due to illness. The finality of it is cruel. I am here sitting in front of my computer but he is not just in the next room gently snoring, he is miles away. After 43 years it is not death that has parted us but stroke damage and dementia. And of course I know I am not alone in this as I see the sad farewells in the nursing home every visit as one goes “home” and one stays behind to be taken care of by others.

 

Why did the last stroke take so much from Ray? Why didn’t he recover 80% of what he lost as he has with some of the others? Or is recovery of 80% less and less likely to happen? I try to keep optimistic, to keep praying and visualising him well but it doesn’t seem to be working this time. All I am asking is for him to be well, to survive this weekend without another seizure, to be able to hold a conversation, to give me a smile, much the same as I was wishing for Mum a few years ago. It seems such a little to ask.

 

But never fear acceptance will finally come as it has so many times before. With each change comes some challenges, a struggle to rationalise, an attempt to philosophise and in the end an acceptance of the new reality, the “new normal”. We all have to go through the process, survivors and caregivers, each of us fighting to keep back from the edge of depression and the black hole that will swallow us up.

 

I get by with a little help from my friends...as usual.

12 Comments


Recommended Comments

Sue:

 

I can understand your pain, I wish I had some magic wand to make it disappear all your heartbreak & sorrow, but since I don't have that one. I will pray for your strength & pray that you get accetance to this new situation sooner without any heartaches.

 

hugs,

Asha

Link to comment

Sue Congratulations on your Carer of the Year award. :cheer: You certainly deserve it!

 

I wish Larry could join an organization where he could meet others like himself and enjoy the companionship. He misses his co-workers and the exchange he had with them everyday. Today at the new rehab location/facility he spotted someone he worked with 20 yrs ago. I walked over and told the man and he instantly remembered Larry. He came over after his therapy to talk. That was a nice for Larry.

 

I hope Ray will remain stable and continue to get better.

 

Julie

Link to comment

Sue you are caregiver of the world to us here on this site. Praying for you and Ray. You are never very far from my thoughts and prayer these last few weeks wish I could be close to you and hug you and have a nice cup of tea and quite talk. Stay strong Sally

Link to comment

Sue,

Congratulations!! You are the perfect recipient. what a caregiver and inspiration to the rest of us you are.

 

I do feel your grief. We have so much to grieve over. Each change is a good bye to what we are used to.

 

I do want to thank you for all that you have shared with me. You are so truthful and write to discriptively.

 

I will keep you and Ray in my prayers. Please continue to take care of yourself.

 

Ruth

Link to comment

Sue: Congratulations! What an honor. Of course all of us here know you deserve it, but so nice when others recognize it. Terrific. We need a pix of the trophy of course. Maybe your new ID for a year?

 

This came at a good time. You needed some encouragement and light. A pick-me-up, so to speak. Just an acknowledgement of all the good you do for us and for so many others. Well done and Hip Hip Hooray! Debbie

Link to comment

Sue:

 

I am estatic that a caregiver, of your caliber, was awarded 'Caregiver of the Year', for the advice that you provide locally and internationally, through your 'volunteering' on Stroke Network. Wait, that's where we are now. Great.

 

Now, young lady, the other day you were questioning where you 'fit in' as a caregiver and being a Caregiver Chatroom Host, :chat: being that you had to place Ray in a nursing home. I really enjoy reading your blogs, reading how you are always offering advice, sharing your struggles and successes.

 

Having won this award, it just reinforces how valuable you are to stroke caregivers and others. I would suggest that you take a 'leave of absence', evaluate your feelings. I've done that in the past, and I realized that I was appreciated here, and needed, and I couldn't 'just walk away'.

 

But, I also wanted to 'echo' all the other comments and say :You-Rock: :Clap-Hands: :Clap-Hands: :Clap-Hands: :Clap-Hands:

Link to comment

Sue:

 

:congrats: for award I second denny's thoughts, you are valuable resource for caregivers & survivors alike no matter what stage of caregiving you are in.

 

Asha

Link to comment

Sue,

You have been questioning yourself and your roll as Chat host. Hope you can see that you are still needed for the wisdom achieved through years of caregiving. On the flip side, I agree that there is a need for support for those of us who are in a different roll. Those whose loved ones have been placed in a nursing facility, or even those who have passed the point where improvement is no longer something we can hope for, we need to bond together and support each other through this next stage in the game. I think you possibly may be in the best position to spearhead such a branch.

Ruth

Link to comment
Guest hostwill

Posted

SUE,

congratulations on your award.You are a great caregiver and chat host,I'm sorry you didn't get the 80% improvement for Ray that you wanted. I believe the Lord is in control and I pray He brings you comfort during these trials you are going through.You're in my prayers always and we here at Stroke net are glad to have you and appreciate all you do.

-Will

Link to comment
Guest
Add a comment...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.