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Living with Someone who has Scleroderma


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#1 Lost

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Posted 25 September 2008 - 09:06 AM

Feeling very lost and confused. I am living with my best friend who I love very much and I am watching her health slowly deteriorate and there is nothing I can do about it. I do all I can for her cooking shopping cleaning etc as it does not take much to exhaust her. She can no longer work and her quality of life is getting worse.

Yet on the other hand the for me my life is going so well for me that I feel guilty that I am having a good time of things. I wish I could swap places with her. I feel sometimes that I would rather stay at work than come home and look at the pain and sadness in her eyes. I do not know who to turn I sometimes feel like trying to explain how I feel to my wife but I do not want to burden her anymore than she already is. And I am feeling guilty just writing this on the forum. Hope some of you understand what I am rambling on about.

#2 Shelley Ensz

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Posted 25 September 2008 - 09:40 AM

Dear Lost,

I'm very sorry your wife has scleroderma and that you are having difficulty coping with it. As it happens, the feelings you are experiencing are quite common in caregivers. The important thing is to face the issues, like you are obviously doing in this post, and then look for positive ways to resolve them.

My husband and I are both caregivers to each other, so we experience things from both sides. We focus on doing everything we can to make each day special. Life can be delightfully happy and rewarding even in the presence of chronic and severe illness. However, it requires learning many new coping skills during the adjustment phases.

Please let go of your guilt for being healthy and for secretly wishing to stay at work, and so forth. Those are normal things that all caregivers experience. You said she is your best friend. For just one day, why not try to forget that she is ill and instead focus on one thing that can make today just a little bit happier for both of you?

For example, tonight, could you have dinner by candlelight, and put on some music that you both enjoy? One of the frustrations of being a caregiver is that we always wish we could make it just go away; and we can't. But, by focusing on ways that we can add joy to our lives, a little bit at a time, we all win.

Please let us know what nice, simple thing you found to brighten your wife's life today. And please give her an extra warm hug from me; she is truly blessed to have your love and caring, and as always, you will both make the best of the situation.
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 Amanda Thorpe

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Posted 25 September 2008 - 10:29 AM

Hello Lost

Your post is a real cry from the heart, I am so sorry for you and your wife, particularly at present for your emotional pain.

My husband is my best friend and carer. There was a period of months when I was totally dependant on him and it was a great relief to me that work was going well for him and that, my illness and its impact aside, his life was good. It was one less burden for me knowing that his work environment was a good one and he was getting some time away from my illness.

It's natural and understandable that you don't want to see your wife suffering but she is and so are you. You know she is and she knows you are. Rather than let guilt escalate and misunderstandings develop talk, both tell the other how each is feeling. Your wife may already have an idea how you are feeling and she may feel guilty herself for being ill and having to rely on you.

It sounds as if you are a loving couple and this being the case scleroderma is going to be no match for the two of you. Initially there is shock then comes the game plan as the two of you carve out a new life for the three of you. I know it is harder right now than you ever though life could be but it does get better.

Carers often get overlooked, no one ever asks my husband how he is, but you suffer as much as we do, just not physically.

I don't know what support there is for you locally but if there are any scleroderma groups it would help your wife to talk to other sufferers and maybe other carers for yourself.

You will get great support here on this forum so please continue to share with us as we want to support you and your wife.

If you want to talk to another carer send me a private message and I will pass it to my husband to answer. Your wife can email me direct if this helps.

Take care.

Amanda
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#4 Snowbird

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Posted 25 September 2008 - 11:51 AM

Hi Lost

You have come to the right place...we all understand this, some more than others only all to well. I can't offer any better advice than you have already received. Although it's difficult, just try to take one day at a time and as they said, put it to good use for both of you so that you can still enjoy some very special time together. I also hope in time that both of you make good use of this site...you will find it very supportive for each of your individual needs in it's very own right. Looking forward to hearing from you again.
Sending good wishes your way!

#5 Margaret

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Posted 25 September 2008 - 12:49 PM

Hi Lost ,

I am a caregiver, too, to my 20 years old special needs son who was diagnosed almost 2 years ago.......first with sine Sclero and, then, changed to UCTD. He was put on Plaquenil after 9 long months of 'wondering' what to do. You haven't said if your wife is under a doctor's care for her sclero. I hope she is getting the proper medical help because there are meds to make her life better. I, too, felt so guilty watching him suffer and I was the healthy one.

Take care, Everyone.
Margaret

#6 Lucy

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Posted 25 September 2008 - 01:08 PM

Lost
I can not help but cry when I read your post my situation sounds the same. My husband/best friend is my caregiver and my life has come down to sitting and lying down. That's pretty much it with small movements in between that tire me out. We use to just do everything. I have the best medical care but there is no stopping what is going on in my body. My appreciation for my husband is that he is strong and healthy and he is taking care of all the things I cannot without ever making one comment. This is the greatest gift he has given me, our house our kids our lives still move forward because of his stepping to the plate when I could not. Any pleasure he gets from work or our kids etc. I am grateful for because I cannot do much for him. Sadly, I do not want to do much to be honest, too much effort, but when I am lying down on the couch and he comes and sits with my feet on his lap and just holds them and talks to me about all that has gone on - this is now my greatest pleasure. Not sure if this helps you but I wanted to share with you from the sick partner's point of view.
Lucy
Diffused Scleroderma
Diagnosed Dec/06
First Sympton Nov/05

#7 razz

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Posted 25 September 2008 - 01:26 PM

Hi Lost,

I am sorry to hear your best friend and wife has scleroderma which has affected her quality of life. Caregivers play such an important part in each of our lives, without them we would not be here. I know personally I wouldn't be here. Don't feel guilty for enjoying moments of well-being or having a good time with friends. You need to replenish and boost your energy and good feelings to be able to give positive energy back to your wife. A sense of well-being promotes healing, is contagious and keeps depression at bay. When you take care of yourself, then you can continue to care for your wife. Amanda made a great suggestion for you to talk to her caregiving husband. You are always welcomed to come here and ask questions or information.

One suggestion I have for you is don't worry about keeping the house meticulous. Find recipes that are easy to whip up. If your wife is feeling too tired to go out, have a pajama day. On the weekend stay in your pajamas, lay out some blankets, pull out some board games and cards, cut up finger sandwichs, fruits and snacks and just lazy around for a day. Better yet, if the weather permits, have a backyard picnic. Set up a little campsite with a pitched tent, small campfire and picnic basket. It all depends on how much energy she has or how she's feeling whether she just wants to get out of the house. These are just ideas and I'm sure you have a few of your own. Just being there for her is so important. Many of us went through the fatigue phase and did improve through trial and error with different medications.

I hope your wife is getting good medical treatment and gets through this with noticeable improvements. Please also take care of yourself. You are doing a great job! The fact that you found us says that you care so much for your wife you researched the internet for information. We're here for you and your best friend! Keep us posted on her progress. (Welcome to our ISN family!)


Razz

:)
Live well, Laugh often, Love much

#8 GocartMoz

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Posted 25 September 2008 - 04:13 PM

Hello Lost,

My wife has been my caregiver ever since my diagnosis and all I can say is she has been my rock. It sounds like you are taking the same role with your wife. Although it might not seem like you are helping seeing the difficulties she has in dealing with this illness, I can tell you most assuredly that you are. I truly believe I would not be here if it were not for my wife. Being there for your wife is the greatest gift you can give her. You have nothing to feel guilty about. I am certain your wife only wishes good things for you. Being a caregiver doesn't mean you can't enjoy your life. My hats off to you. To me, caregivers are the forgotten heroes in battling this illness. Good luck with everything.

#9 janey

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Posted 25 September 2008 - 04:52 PM

Dear Lost,
My heart goes out to you and your best friend. I too live with my best friend and as a result, I have made it through the worse parts of this disease only due to his constant support in every way. He went to doctor appointments with me, helped with the research and was always in touch with how I felt and responded accordingly. You've been given a lot of great advice from some of the best. I hope it helps.

Now I have some questions - what is being done to help slow the progression of your friend's disease? Is a scleroderma specialist in the picture? Are tests being done? Many of us have found that the patient has to be as aggressive as the disease in getting the proper care. Please make sure that your friend is getting the medical help needed. This disease can hit so fast and hard that it's easy to just give. Please don't let that happen.

I'm so glad that you have joined us. It's a great place for support and information.

Big hugs to you both
Janey Willis
ISN Support Specialist
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(Retired) ISN News Director
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International Scleroderma Network (ISN)

#10 barefut

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Posted 25 September 2008 - 05:35 PM

Dear Lost ~

What a wonderful person you are to care so deeply for your best friend. I know that she would not want you to be feeling guilty about enjoying your life. And please don't feel guilty about posting your feelings here. It goes to show just how committed you are to your wife.

Shelley had some wonderful advice. Take it, try it and let us know how it went. I am also curious, as Janey is, about the medical care yor wife is receiving. It is so important to find a scleroderma specialist.

Hopefully we can hear from your wife someday. Maybe she would enjoy meeting us. I know we would love to meet her.

#11 Sam

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Posted 26 September 2008 - 02:12 AM

Lost, I'm glad you found this site, you will never feel alone and we know how you are feeling, as most of them has mention it is normal to have those feeling as being a care giver. It is hard, I know. Is there a local meeting in your area, that would be a big help for you and your best friend. I think speaking to others care givers will be a help to you. And your best friend talking with others with scleroderma. Good luck and keep us posted on how you both are doing. Sam
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#12 Peggy

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Posted 26 September 2008 - 05:29 AM

Your wife is truly blessed to have you. For you to search out information is a testament on how much of a positive impact you are for her. This disease not only affects the one that gets it but the whole family. I am sure it's hard for you to watch what is happening to her and not be able to do anything about it. The fact that you are trying to make her everyday life normal and good is great. It's the little things that we aren't able to do ourself that someone sees and does it for them is worth so very much. The one frustration I have, and many others here, is how we aren't able to do what we used to do. There is a lot of guilt that goes with that and because you aren't letting her feel guilty because you are doing it is true love.

I used to ride harley with my husband and am no longer able to. But now I make sure he still goes riding as it's an escape for him but it's also something that he loves. You need to do that too.............you need to do things that are fun for you and an escape. It's OK for you to laugh or to have fun. You didn't give her this disease and she would want you to continue to live your life. You are still there for her but you need to keep your batteries charged.

My mom took care of my dad who had alzheimers. It aged her so terribly. The doctor explained to us as a family that she was living a 48 hour day................her 24 hours and my dad's 24 hours. There is only so long a person can do that before it wears them down. So do the things that make you happy. You are no good to her if you aren't 100%. There is no doubt in my mind that she feels loved and cared for.

This is a great site for you to continue to come to for support and advice. Everyone here is fantastic and I don't know what I'd do without them.

You are to be applauded and should be so proud of yourself in how you are handling this. You are human and love hurts. But love also is just being there and doing the loving things that makes every day a good day. It's the little things that count.

Warm hugs,

Peggy

#13 Lost

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Posted 26 September 2008 - 08:00 AM

Thank you all for your kind words of support.

My wife is recieving medical attention from a specialist but sadly most of the drugs disagree with her.
I have tried to talk to her about how I feel but find it hard and feel I am being selfish asking for her to understand my problems. I do know she is very grateful for all I do and does not begrudge me any moment of joy I can find and she is happy to see me happy. It is me being silly is what she would say.

I am also worried that she is giving up the fight and is turning to drink to numb the pain and torment.
This I believe is not helping our mental well being or more to the point her physical well being either. She has been advised to at least cut down her drinking by her doctor and her specialist and she knows that I am unhappy with her drinking so much and I have told her that I think she would probably feel better if she did not drink so much, but how can I say what she should or should not do, it is her that is ill not me.

How would I cope if I were as ill, with no prospect for improvement only gradual deterioration. Not sure I could cope any better than her. So who am I to criticize?

#14 Shelley Ensz

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Posted 26 September 2008 - 09:50 AM

Hi Lost,

Well, it looks as though you have several overlapping issues here. Please bear in mind that I have no medical training or mental health training, either; and that I may be wrong (I often am!) so research all this and review it with medical professionals. Also, please always feel free to correct me on any issue at all; I am always learning something new around here.

One thing I noticed from your last post is that perhaps your wife has a bit of a misimpression that scleroderma is always and inevitably progressive and fatal. Or, perhaps her specialist has advised you both that she is in the end stage of an irreversible complication, in which case, please ignore the rest of this.

As it happens, generally speaking, the natural course of the disease is to wax and wane, which means it may worsen and then perhaps even get better.

In fact, this natural course of improvement is so pervasive and often drastic that it makes it extremely hard to study potential treatments or cures for scleroderma. Invariably, in the small initial trials the patients and doctors are quite enthused as they watch symptoms suddenly and quite magically reversing! Then, when it gets to the larger trials, they often discover that the improvements were simply the natural course of the disease and that the drug had no effect. So, at any time, even without any treatment at all, any scleroderma patient might begin enjoying spontaneous improvements...which is a reason for all of us to cling to optimism and hope, for quite a long while.

The second issue is that you are quite right to be concerned about excessive alcohol use. Alcohol can both cause and worsen any or all of the symptoms of scleroderma, from heartburn to Raynaud's to intestinal issues. Nearly every medication used to treat scleroderma symptoms can interact poorly with alcohol; sometimes fatally. Thus, it is possible that alcoholism could actually be the more imminent threat to her health, happiness and well-being. Furthermore, it can just complicate the illness by causing hangovers (headaches, nauseau, vomiting, dehydration, irritability).

Just to make matters worse, alcohol is a depressant, which is known to lower levels of serotonin and norepinephrine, and it worsens the quality of sleep, making it more unrefreshing. Those of us who have chronic illness need all the uplifting things we can get -- we certainly don't need to indulge in anything that makes us less able to cope and to heal. Rather, we need to set in motion the habits and forces that will encourage and inspire healing -- such as happiness, laughter, joy, hobbies, relaxation, stress reduction, resting, healthy foods, a sensible physician-supervised exercise plan, and so forth.

Now, you will also find info on our main site to the effect that alcohol can be a vasodilator, which is a good thing for Raynaud's, in particular. But anything more than 1-2 drinks per day, or any drinks if they worsen other symptoms, probably defeats any possible benefit.

Since her drinking seems to be an issue for both you and her medical team, it will inevitably worsen if steps are not taken to intervene in the process. If she's truly in her very last days (on home stretch, so to speak) well, then, you may want to just let things be. But if there is hope for her to feel better or live longer or happier by facing and dealing with any addiction issues, then you might be doing her a disservice by just trying to put up with it.

So, realize that you have perhaps two separate but entertwined issues to deal with. There are some great sites and services for learning about addiction or alcoholism, and how they can be overcome. In particular, there is a huge difference between being a caregiver and being a co-dependent --and sadly, those roles can often and easily overlap, especially since life tends to just creep up on us, catching us unawares and unprepared for more complicated and difficult issues.

Regardless of how things develop, for you or for your wife, just remember, we are always here for you, and we always stand beside 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.

#15 Nina

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Posted 26 September 2008 - 10:11 AM

Dear Lost ~
It sounds like you only want what is best for your dear wife. You sound like you are doing all that is possible, sadly at times that does not seem like enough. I understand ~ in fact everyone on this forum understands. In one way or another we have all experienced most of what we read. I do not have a caregiver, I envy those that have wonderful caring, understanding individuals that support them. For this reason, I come here to read and share ~ for now, that is all the caregiving I need.
Please continue to visit us here and use this forum to help with your own concerns. It's vital that you take care of YOU. You are a special person. I apologize but I've lost my train of thought ~ too much going on around me...
Thanks for coming, sharing and please come back. And tell you wife she can get on any time she likes.
Much love,
Nina (DE)

#16 Lost

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Posted 26 September 2008 - 10:15 AM

I feel that my Wife has got years of life left in her albeit not very comfortable or easy and I am convinced that she is doing herself more harm than good and have tried to talk to her about it I think deep down she knows I am right.
I know from smoking and giving up that to stop any addiction you have to want to stop. I tried many different methods from hipnosis to patches and in the end there was a time in my life when I felt that I did not want to smoke any more and gave up quite easily. The thing is She has no reason as far as she is concerned to give up.

#17 razz

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Posted 26 September 2008 - 05:30 PM

Dear Lost,

Has your wife been referred to therapy to help her sort out her feelings? Scleroderma affects everyone physically and psychologically. There are resources available to help her and yourself in dealing with these ongoing changes. Unfortunately, if she's turned to drinking, that can complicate an already difficult situation. If your wife is willing to speak to anyone about her fears and uncertainties, we would be glad to help her. She can personal message me anytime and I would gladly listen to her. Speaking from my own personal experience I also went into a deep depression where it felt like nothing mattered any more. Have you spoken to her doctors regarding your wife's state of mind? We do have links dealing with depression and coping with scleroderma. In the meantime, do keep us posted and don't let your wife give up. I will hope that she comes out of her depression soon and realize she has so much to live for. You are a great friend and husband!

Razz

Just a note, if your wife doesn't feel up to communicating with us, then maybe she can read our comments and see that she is not alone. We are here for her!
Live well, Laugh often, Love much

#18 Amanda Thorpe

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Posted 27 September 2008 - 01:12 PM

Dear Lost

Alcohol in the mix makes things more difficult as you already know. Did your wife drink heavy prior to being ill/diagnosed or did it start after? If before then the diagnosis has given her a reason and permission to drink to excess guilt free but is not the cause of the drinking. That cause was already there. If the drinking began in response to the diagnosis it may still be a sympton rather than a problem in its own right.

My husband and carer has some 35 years experience as a well respected (awarded by the Queen) addiction counsellor. The offer to speak to him on all topics is available, just title the email to me Private and it will be read by him only.

Keep posting and take care.

Amanda
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#19 smac0719

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Posted 28 September 2008 - 12:39 PM

Lost,

I am sorry to hear what you are going through, but hope you are finding some support and help here. My wish is that you are able to talk to your friend and that she is willing to get some help soon.

Peace and blessings
I may have Scleroderma, but Scleroderma doesn't have me!