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#1 annkd

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Posted 30 August 2010 - 05:25 AM

My husband is leaving our marriage after 17 years. As I have read and gone to support groups and listened, I know that some people just can't step up to the plate to be caregivers. It was pulling teeth to get him to participate and when he did he sat in the back of the rooms and didn't talk to anyone. Over the almost 8 years since my diagnosis I watched the decline of his ability to participate in my care. I'm exhausted and so completely sad. I understand that someday things will seem brighter but right now that is difficult to fathom. I reach out to all my sclerodermians - thanks for all the support this site provides!

Ann

#2 scampie5

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Posted 30 August 2010 - 06:03 AM

Hi I am so sorry to hear your news. It must be very difficult for you both. I lost a lot of friends when I told them I was ill, maybe they thought it was catching. A couple of friends did come back and said they were sorry they just didn't know what to do or say. When I was well I was a carer of the elderly and understand how difficult it can be and 2 years ago cared for my mum and then my father in law. I found this harder than looking after people I didn't now, when you care for some one other than family once work is over we just go home and forget about it until next day, however with family we don't do this. I have on 2 occasions asked my husband if he would rather I moved out and live on my own as there is so much for him to do. He still works full time and does all house work etc. I can cook dinner but very little else, I have all day to prepare this. Hopefully you and your husband can remain friends and it may be easier for him to help you if that makes sense. I hope you have some good friends and family around you and there's always the message board and chat room. I always say if I get knocked down then pick myself up and start again not always easy but we have to keep going.

You take care,

Lynn xx

#3 Sandy B

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Posted 30 August 2010 - 07:26 AM

Hi Ann,

I am so very sorry for the sadness and pain you must be feeling right now. My son goes back to uni in two days and I know how utterly miserable I feel at him going away, but I will be seeing him again soon and I know it is not for ever. I cannot imagine the pain you must be feeling having a loved one walk away from you, at a time when you need them most. Like you said, some people just can't step up to the mark, but it doesn't make it any easier for you and I think it is incredibly brave of you to be so accepting of his inability.

I sincerely hope you have close friends and family there to give you support and encouragement, to help you through this very difficult time and to give you warm and gentle hugs whenever you need them.

Take care, my thoughts are with you.

Sandy B

#4 Amanda Thorpe

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Posted 30 August 2010 - 07:52 AM

Hello Ann

I am so sorry this has happened. Time brings perspective and all that but right now you must feel hurt and let down. There's nothing you could have done differently to prevent this as you have no control over being ill.

Please keep posting because I know many here will want to give you the support they can.

Take care.
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#5 Shelley Ensz

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Posted 30 August 2010 - 07:59 AM

Hi Ann,

I'm very sorry to hear that, for both of you. I'm sending some extra warm hugs your way. :emoticon-hug:
Warm Hugs,

Shelley Ensz
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#6 enjoytheride

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Posted 30 August 2010 - 11:28 AM

This is such a sad time for you- I'm so sorry.

From what you said, he has had his own issues for some time. It's hard to think about it this way but maybe you can find better balance without having to drag him along.

To lose someone when you're healthy is hard so I fully understand how hard this is for you when you add the uncertainty of such an illness. You have such a right to feel disappointment and sadness.
(((hugs)))

#7 janey

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Posted 30 August 2010 - 03:55 PM

Ann,
I am so sad to read what you are going through and have been going through for so many years. The fact that you have been able to deal with the disease and the weak support system, just shows your strength. You will be able to pull through. We all know that, but we also know that you need some time to be sad. You are entitled, so please pamper yourself for awhile, cry when you want, but please throw in something every now and then that makes you laugh and makes your feel alive. We're here for you as you well know.
(((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))
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#8 janet905

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Posted 30 August 2010 - 05:41 PM

hi ann, I am so sorry you are going through such a difficult time. my heart goes out to you. I wanted to reply to this (i don't post often) because I have experienced "friends" that disappear and feelings of resentment and disappointment from my husband that totally caught me by surprise. like this illness is something we wanted!!! this is similar to the abuse we get from the physicians that tell us it is all in our heads or don't think we are really dealing with real pain. my significant other reminds me often how I have derailed our plans for the future. also is not too thrilled that we spend more money on health care because of my inconvenient illness. and I really feel lucky that he is usually a pretty good guy. I felt a little less alone after I read an article recently that talked about how many relationships go south after the illness or death of a child or family member or the chronic illness of a spouse. some people can't step up to the plate. they are the weak ones not us. but we suffer physically as well as mentally. I don't know what to say to ease your pain but I am angry that certain folks don't realize that they were lucky to be a part of your life. they will be the unlucky ones in the long run. the shoe will probably be on the other foot one day. venting helps!

#9 Joelf

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Posted 31 August 2010 - 03:00 AM

Hallo Ann

I am so very sorry to read your post; it's difficult enough to come to terms with your illness, let alone without the support of your husband. :(

I do hope you have other supportive members of your family & friends to help you through this very difficult time.

I'm thinking of you & sending :emoticon-hug: :emoticon-hug:

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#10 miocean

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Posted 31 August 2010 - 03:46 AM

I am so sorry you are losing a relationship after 17 years. When my father was dying from lung cancer, my mother just couldn't handle it, and his sister had to come to take care of him. Illness is difficult for others to deal with. They don't know what to say or do and may resent the burden it places on them. I'm thinking of you.

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#11 annkd

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Posted 31 August 2010 - 04:12 AM

Thank you so much for your kind words. I think I'm still in the "shock" stage. It is difficult to got through the paces you need to go through - like finding an attorney and/or mediator, insurance issues, etc. when you are in the shock stage. How do people do this? I suppose the answer is one day at a time. What a mess, eh! Anyway I wanted to let you know how much I appreciate you all and I'll keep you posted on this new journey. Hugs, Ann

#12 Jeannie McClelland

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Posted 31 August 2010 - 04:15 AM

Oh Ann, how awful for you and what lousy timing~ I don't know what to say except all of us here think the world of you and are saddened by this further blow. I think what you are going through is what all of us dread.

I lost a dear friend to cancer in March. Her husband went to no doctor's appointments, no treatment sessions, no tests, no nothing. He wouldn't even read a list of medications to help her sort out what she should take when with the result that one terrible weekend she went without any pain medication whatsoever. I thought (as did her sisters) that he must not love her and was a selfish, uncaring so-and-so. As the months have passed since her death, I've come to realize he did love her, he just could not face the illness, what she was going through, and the prospect of life without her. He'd always been the cared-for one and the role reversal was more than he could handle. Because her sisters and friends took up the slack of housekeeping and care-giving, he was able to 'be there' but also to be totally dis-engaged. If he'd had to deal with things alone or her illness had gone on longer, I believe he would have bolted.

I think lots of us adopt a motto to help us along. Mine is: "Life is not about waiting until the storm is over, it's about learning to dance in the rain." I know you'll learn to dance in the rain.

Warm hugs,
Jeannie McClelland
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#13 Sweet

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Posted 31 August 2010 - 11:43 AM

Oh Ann,
I am so sorry. I am at a loss for words. Actually I could think of a few choice words for HIM right now, but I'm sure I'm not allowed to say them on the forums. Please know we are thinking of you and I will be sending positive vibes your way honey. :flowers:
Warm and gentle hugs,

Pamela
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