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Support for partners

counselling and help

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16 replies to this topic

#1 Maz White

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Posted 09 May 2015 - 09:13 PM

Hi,

 

Is there any help out there in Brisbane for the partners out there who are, like me, watching their husband slowly die of lung and heart complications with Scleroderma?

 

He first noticed a problem with his fingers (Raynaud's) in 2003 and was diagnosed with Scleroderma in 2005.  It was progressing so slowly and he has lived life to the full but then 4 months ago his health declined steeply and now he is suffering so badly. 

 

It's bad for him but it is also hard for me watching him this way.  He doesn't want to live this way and why should he have to?  We have been married for 47 years and have no children.  What can I do?

 

Maz



#2 Shelley Ensz

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Posted 09 May 2015 - 09:45 PM

Hello Maz,

 

Welcome to Sclero Forums. I'm glad you found us, but sorry that your husband is so severely ill.  Our forums are for everyone in the world who are affected by scleroderma and related illnesses or symptoms, including spouses, caregivers, friends, family, and surviving loved ones.

 

You'll notice that we grapple with the entire range of issues here, from mild or even frivolous to downright serious end-of-life issues. So you've absolutely come to the right place for support. I'm so very sorry for your predicament. My heart goes out to you. I'm sending some extra hugs your way.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Joelf

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Posted 10 May 2015 - 09:47 AM

Hello Maz,

 

Welcome to these forums!

 

I'm very sorry to hear that your husband is so badly affected with Scleroderma and is so ill. As Shelley has said, we do offer support for you and your husband and I've included a link to our Caregiver Resources page, which I do hope you'll find helpful and informative.

 

I can understand how worried and anxious you must be feeling and now that you've found our forums and joined our community, I do hope that you'll continue to post for help and support and let us know how you and your husband are faring.

 

Kind regards,


Jo Frowde
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#4 judyt

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Posted 10 May 2015 - 07:59 PM

Hi Maz,

 

I am sorry your husband is so unwell.   Having been married 47 years is a geat achievement and it sounds as though you are a similar age to me. There is personal support where you live and I have sent you a personal message about that.

 

This is the best site for education, for yourself and your husband so keep posting and we will do what we can to support you.

 

Best wishes from this side of the globe

Judyt



#5 Maz White

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Posted 12 May 2015 - 09:43 PM

Thanks everyone for your replies and thoughts. I haven't replied before as I have been busy going in and spending the day with Geoff. Some days are good and some, like today, are bad.

 

The staff at the Price Charles Hospital are great and trying their best for Geoff.  BUT sometimes I think the drugs they are pumping into him cause side effects that make him feel worse. He wonders if it is all worth it when the end result is always going to be the same. 

 

When I have the time for myself I will chase up some support groups.

 

Once again ... many thanks

 

Maz



#6 Amanda Thorpe

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Posted 13 May 2015 - 04:06 AM

Hello Maz

 

I am sorry to hear this about your husband.

 

You say that the treatment won't help in the end, have they said that Geoff is now terminal? 

 

It's a hard balance to strike, when to medicate and when to stop and different for everyone. If that's were you guys are I am really sorry.

 

We have all probably talked about the quality vs quantity debate but it takes on a whole new meaning when where you're at really falls into only one category. 

 

Take care.


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#7 quiltfairy

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Posted 13 May 2015 - 05:52 PM

I just wanted to pop in and say welcome to our forms and bless you.

#8 Maz White

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Posted 18 June 2015 - 04:37 PM

Thanks for all your thoughts everyone.  Geoff chose to stop his meds as he was then on oxygen 24/7 and could only walk about 6 paces without getting oxygen depleted and distressed.  He had always  been an adventurous type and lived life to the full.  He said he couldn't live this way and asked for my blessing to stop the meds and leave.  He passed on the 10th June.  I miss him but and relieved he is no longer suffering.



#9 Shelley Ensz

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Posted 18 June 2015 - 06:12 PM

Dear Maz,

 

I am very sorry to hear that your husband has passed away.  My heart goes out to you. Please accept my condolences, and remember that we are *always* here for you.


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#10 Joelf

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Posted 18 June 2015 - 07:36 PM

Hi Maz,

I'm very sorry to hear about the recent loss of your husband and my thoughts are with you at this very difficult time.

My best wishes to you.


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#11 quiltfairy

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Posted 20 June 2015 - 07:55 AM

Hi Maz,

 

Welcome to the forms . I am very sorry for your loss and my thoughts go out to you and your family.

 

Please keep in contact with us at this time of your sorrow.

 

My best wishes are with you.



#12 miocean

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Posted 22 June 2015 - 12:51 PM

Dear Maz.

I am saddened to hear about what you and your husband have been through and am wishing you peace.

 

miocean


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#13 Amanda Thorpe

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Posted 28 June 2015 - 12:08 AM

Hello Maz

 

I am sorry to have just come upon this thread and even sadder to hear that your husband has now died. I am so very sorry.

 

Take care.


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#14 Shelley Ensz

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Posted 10 July 2015 - 04:34 AM

Dear Maz,

I'm thinking of you today and sending warm thoughts your way.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#15 maamen

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Posted 25 January 2016 - 07:39 PM

I am sorry about your loss; I just logged on today.

 

My wife and I have been married 43 years. She was diagnosed with it 4 years ago. I am just starting the search for any on-going clinical studies for drugs that might work. It is a very frustrating disease because you watch the deterioration in slow motion; each day is a tiny bit worse than the day before. It seems like there must be a data base for updated results. Wading through these forums is hit or miss depending upon the title the author used.

 

I had a cancer (thyroid) which prior to 2011 had no chemical cure. A special drug was developed in 2011; I joined the clinical study and I am part of the 60% success group. So I know that studies are necessary but until then, SSc requires raw data.



#16 Shelley Ensz

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Posted 26 January 2016 - 06:22 AM

Hi Maamen,

 

Welcome to Sclero Forums. I'm sorry your wife has scleroderma and send my best wishes to both of you. In order for her to get appropriate care and possible clinical trials, you would want to have her consult a listed scleroderma expert.

 

We have a huge sections on our main site for Scleroderma Treatments and Clinical Trials.  In addition, we have over 1,000 patient and caregiver stories (organized by type and by symptoms) from around the world which reveal the tremendous variety of symptoms and progression that can occur.

 

Most treatments depend on individual symptoms that someone is encountering. So you may also want to look up your wife's individual scleroderma symptoms, where we provide the very latest research plus handy tips for dealing with each one, as well as many scleroderma videos.

 

The best research you could possibly do for her would be to get her to a real expert in this disease, because it is so rare, and unique in its presentation, and treatment.

 

:hug-group:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#17 Joelf

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Posted 26 January 2016 - 06:31 AM

Hi Maamen,

 

Welcome to these forums!

 

I would echo Shelley's advice to consult a Scleroderma expert, as this complex disease does require specialist knowledge and expertise, to ensure that the correct treatment can be given.

 

Now that you've joined our community, I hope that you and your wife will benefit from the support and advice given by our members.

 

Kind regards,


Jo Frowde
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