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A Constant Cloud of Concern 
Started by KathCull_admin
03 Jan 2015, 6:23 PM

 

The idea for this thread started with some words from Oldbat,” I'm sure there are some people who would consider that I have it "easy" because Karl's in a home.  But that ain't necessarily so.  He calls several times a day, I'm in touch with his assorted care-givers frequently, and I still have to run all the errands for things he needs, kleenex,wheel trans tickets, etc.  And there is always that big, black "Pigpen" (remember Peanuts?!) cloud of concern hanging over my head.  I have virtually no control over how he's being treated, etc., etc. and I can't give him the many hugs and frequent reassurance he needs.”

What clouds hang or have hung over your head?

 

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Reply by jorola
04 Jan 2015, 8:40 AM

I hate that cloud. Just saying.

Mick has been doing very well and on the road to remission...but how long will that last? when lung cancer strikes back, it strikes hard and fast. Everytime he coughs, sleeps more, seems weak, hell even when the dog acts differently around him, my "cancer radar" starts binging like the one you get when you leave the car door open. Hate that binging too btw.

What exhausts me is that I know this will never go away. He is only 41. Statistically speaking his chances of growing old beside me are very slim. I try to only focus on today but it is so much harder that it seems. But i do not want to waste time either worrying about it. I have good days, I have bad days.

It's my new life. C'est la vive.
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Reply by Wingman
28 Jan 2015, 2:16 AM

WI have a heavy cloud. I do much in a day- work two jobs to allow myself independance. I am on my own.
My dearest friend has been given a grave prognosis. She is my biggest fan...my grandest supporter, my best friend.
She underwent radnt for throat cancer and I was her wingman. This past fall has introduced mets to the lungs and a harsh chemo schedule. I remain her wingman....she is my biggest fan and grandest supporter...and I love her.
 I am afraid everyday......in every place I go....in my morning to my night..that she is dying. Chemo started last fall and while I understand the side effects can be harsh....I have a dark cloud over my every moment that says she may be dying. She is now so weak and fatigued, taking in no calories with extreme loss of body mass... 
 There is a break in the tx due to an inability to tolerate...although xrays show tumour response....but these days seem to continue poorly...with no relief and no improvement. She pushes herself every day to plan and get out..her limitations are astounding. While she inspires me to live in the day...I do so with a dark cloud tuat I can not shake. I feel ashamed by this....I am by her side always for everything I can do.....and it is easy to do anything and everything I can for her....and I can easily be a pillar when I am with her....but outside of that....I carry a cloud..WM

 
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Reply by KathCull_admin
28 Jan 2015, 3:49 AM

Welcome to our community Wingman. I am glad you found us. I know you will find that the members of our community like Jorola, Oldbat, Nouce, Jimmie and others will understand your sadness and the cloud you carry – many are carrying similar clouds.  

I have always liked the term ‘wingman’ – a true, warm and protective kind of friendship. But that depth of friendship means you carry her in your heart – as you say whether you are with her or not – and so carry her struggles, your fears – that constant cloud. Do you find the cloud a little less oppressive when you are with her – almost as though her presence reassures you?
 

Your friend sounds like a wonderful, courageous woman. How did you meet?  Are you able to talk with her about the sadness you feel at her illness? 
 

Please keep writing - we are here to support you.

Katherine 

 

 

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Reply by Tian
28 Jan 2015, 1:17 PM

Dear Wingman

Of course you carry a cloud. Watching a loved one suffer in order to stay alive can be the worst feeling that one can have. But rather than seeing you as ashamed by your cloud-carrying I see you as a strong, devoted friend doing whatever is necessary to help her recover. You are both going through hell but you are each doing what you need to do and I have great admiration for the two of you. Emotions can run riot at a time like this but feeling shame seems to be out of place. Your friend seems great and you seem to be her equal. Best wishes and please let us know what happens.

Tian 
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Reply by EastCoastPEI
28 Jan 2015, 8:45 PM

Jorola said it best " I try to only focus on today but it is so much harder that it seems." 

 That cloud .. that invisible dark heavy cloud ..sometimes literal..sometimes figurative.. but always powerful.  Even on good days, it's there hiding at the end of a good thought.. then, a return to worry.  

I've known it all too well..  

our friend, parent, sibling is suffering..and it sucks.. of course there is a dark cloud.  

I find there is good balance in acknowledging it, letting it do its thing, and then telling it to <insert not so nice words here> and not letting it control me... 




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Reply by Wingman
28 Jan 2015, 11:08 PM

Thank you all for your thoughts. We all carry a burden. I do feel shame because my thoughts make ke feel weak...and I have lived my life only strong. I feel there is no place for weakness in this battle we face...and especially not mine, as this is not about me. At times I feel guilt that I feel she is coping better than I..
Kathcall....to answer your questions, we met through a common love we have...started talkimg and have just never stopped. We talk morning, noon and night about how she is feeling on this day and I am most at ease when I can improve this day for her...and in these times there is no cloud.  While we share everything about these days...I do not share this cloud. Her spirit and determination is like none I have ever known.  She uses every ounce of energy to continue to do everything as she has...I have no right to tarnish that. She thinks nothing but positive and it would he unforgivable to bring negative to the table. That.cannot be my role. She has no family, I love her and I will always remain Wingman.

I have been ready from the start to take this on...and don't get me wrong...I am absolutely still..in every and all aspects of it, and so I suppose what I also am is thankful for this little spot to talk out loud.
WM
 
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Reply by NatR
01 Feb 2015, 3:46 PM

Hello Wingman,

You are already welcomed to this forum.  You are a pretty amazing person.  I would love to have a wingman in life.  So many of us dont.  When there is a sickness, a wingman is vital.

Your friend is so lucky to have you - your support and strength is important.
The fact that you found this forum and are writing to us in No Way means that you are less a wingman...less a caregiver, less a supporter.  In fact...the fact that you reached out means that you are In for the long haul, that you are going to be there for your friend, and that you need a little boost yourself to keep strong.  That is what the Hospice forum is for.

You have no need to feel guilt or in any way that you are letting your friend down by talking freely here.  This is what you need to keep going.  listening ears, some comforting words, and people who have already travelled the path you are on.

I hope you will feel free to write anytime you need to, any question, any thoughts, any worries...you can say it all here.  We are here for you....so you can be there for your friend and partner.  You are a wonderful person to do this.  Thank you for finding us.
Keep sending notes when you can.
Support and encouragement without judgement is what the forum is about.
Sending you strength for today..
Best wishes,
natR 
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Reply by Razz
21 Jun 2015, 2:38 PM

It doesn't look like there will be a break in the "weather" soon for me.  

The question(s) I wonder about everyday is if I'm making the right choices for my mother's care.  I've been following my "gut instincts" so far and they have proven to be the correct ones at the time.  That doesn't mean that I'm not always second guessing myself - it's hard to trust our thoughts and feelings.  

Razz  
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Reply by EastCoastPEI
21 Jun 2015, 2:50 PM

Oh that all sounds so familiar. The constant second guessing... The constant self evaluation of "AM I doing the best for my mother? But am I also taking care of me?" ... It's tough.. And really you don't be satisfied with the answer anyway ...we always feel a tug of war pul in both directions..

Even in hindsight I look back and wonder  ...should I have taken more time off? Should I have continued to work and not incur more debt. Etc etc. 

Like you said, your gut instincts have been right so far... Keep listening to yourself...

Take care

 
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