Scleroderma... prayers needed....

[Cinderella Fan]

When I heard about this forum, I thought it would be the best place to let out my vent to a audience with compassion. I am not dealing with a child who is sick, or even a parent. Sometimes I feel very helpless in a fight that is not my own, but I feel as if the weight of this disease has been placed on my shoulders, and much of the time, I don't feel strong enough to bear it...

My father-in-law has Diffuse Scleroderma. Not many people, mostly all of them women, have this disease, and this type is extremely rare. He started developing the symptoms in December, and was diagnosed in May of 2006. Since then, he has developed fibrosis of the lungs, kidneys, and liver. He has partial paralysis of his lower intestines, which as you can imagine, leaves his rather sick.

Now, he is on a TPN line (feeding tubes do not work on Sclerodera patients). The drs say there is no reason why he says he can't swallow, all of his tests are great for his age and disease. But, he is refusing to eat or get out of bed. Now, he is in Congestive Heart failure. The amount of fluid surrounding his heart and lungs is reaching a measurement in pints.

I am in charge of his medical care. My DF's mother is a heart patient as well. I adminaster his TPN, I take care of him 20 hours a day. Most of the time, like today, it gets to be pretty overwhelming.

Please, just keep me and my family in your prayers....

 

[Mackey Mouse]

Oh Angela... I just read this and thought the caretakers work so hard with their loved ones.....sometimes with not a lot of support, and it seems you have your hands full...

I wonder if they just give up, the doctors say there is no reason he cannot swallow, but I imagine he does not want to eat as it makes him ill....and now to add congestive heart failure on top of it, well my heart goes out to you..

Please know we are here for you if you need a hug or just want to vent, please do...your family is in my prayers.....make sure you take care of you too....

 

[StephMK]

Aw, sending you a huge hug. It sounds like you are under an enormous amount of stress. I see that you're getting married - Congrats! While it's a happy event, there is still a level of stress involved in the planning stage. That plus FT care for 1-2 seriously ill people is a large load to bear. Are you able to get any help in care? In home nursing to give you a break? You need to take care of yourself too.

*hugs* I hope things get better for you.

 

[Cinderella Fan]

I want to thank you both for your kind words and prayers. It is with the support of others that we are able to get through this.

Today was a pretty good day - DFIL got out of bed for about 3 hours total (which is 3 more than yesterday ). He has asked that I not put him in a "monkey suit" for this wedding , which is what he would have said before he got sick. Today, he seemed more like his old self. I miss that.

He is talking about what he wants for dinner tomorrow night, which I am grateful for. Hopefully he will feel like eating for the expensive dinner I have planned for with this wedding....

Again, thank you for everything....

 

[Mackey Mouse]

I am so glad to hear that he had a good day......you know those good days are a blessing and we take them and run with them......Enjoy him when is feeling good and talking like his old self... Please know that you can come here anytime you need to vent and we will be here for that support for you as well as the support system you already have in place...

 

[Cinderella Fan]

Today is a bad day, as was yesterday. It seems as if we take 2 steps forward with him, then 12 steps back. I don't know what to do anymore. I pray and pray that this will be over soon, however it my be, but I feel like such a horrible person for asking God for relief. I try to be there for BG and his mom, but I don't know how much longer we can all do this for him.

I feel like I cry all the time... I don't speak to my father anymore, so he is the only father I have any more. I don't feel like I am doing anything to help him, I just feel so helpless to help BG and his Mom through this.

I am the type of person that likes to be in control (go figure, I think most of us DISer's are ) but I can't control what this disease is doing to him. And it is killing me.

Please, just keep my family in your prayers. Right now, I feel like that is the only thing that will help me.

 

[Mackey Mouse]

Angela.....hugs to you tonight, I know it was a bad day but maybe tomorrow will bring good things....It is so hard to watch someone suffer and feel helpless, I have been there myself with my Mom and it was so hard I could barely stand it. But I did stand it and when the time came, I made the right decisions for her and miss her everyday.

Just try to take it as it comes....deep breathing and know that it is not in your hands.....you are doing the best you can, but this is out of your hands.. Hugs..

 

[Cinderella Fan]

Marsha, I want to tell you how much your kind words have meant to me. They pulled me out of a dark spot, and for that I am eternally greatful....

Unfortunately, my father-in-law passed away yesterday from kidney failure, which is not uncommon with Scleroderma. I want to thank you all so much for your thoughts and prayers, they have helped me get through this, and I have passed them on to DF. He sends is gratitude as well.

Please keep us in your thoughts and prayers during this time....

Thank you all so much...

 

[Mackey Mouse]

Angela.. I just read this.. I am so sorry for your loss.....I am glad that you did have those good days with him before his passing. God Bless him, you and your family during these next days....

Please know that if you need some hugs, come back here anytime, we will be here for you. Know that you did a wonderful job taking care of him and he is in a better place now with no more suffering..

 

[safetymom]

Angela, I am so sorry to hear about your father in law. I will keep you all in my prayers.

 

[disneydeb]

angela, i am so sorry for your loss, today is the first day i saw this forum , i was reading your comments about feeling like a horrible person for praying for this to be over soon, let me assure you i am a nurse in a nursing home and i deal with death and familys all the time and you are not a horrible person, watching a love one die is a terrible experience and it is perfectly normal to feel helpless, the last 46 hours of my mothers death i felt the same way, when i talk to familys in the nursing home that have love ones that have suffered, when we say were sorry many of them say it is a relief, no more suffering, the patients dont want to be suffering either, i i dont know what your reglious values are but i always tell my patients familys that god doesnt take anyone before thir time, the best we as nurses can do is keep patients pain free, and comfortable, so again my condolences and i'll keep you in my prayers.

 

[Cinderella Fan]

Thank you all so much, again, for all of your kinds words. It means so much to me that you have kept our family in your prayers.

I appreciate you all more than you will ever know....

 

[GoofyBaby]

Angela,

I just found this thread and I can't imagine how you managed to hold it together taking care of you FIL around the clock and planning a wedding. I am so very sorry for your loss and I will keep you and your family in my prayers. Here's a great big for you. You did an absolutely beautiful thing in taking care of him - what a generous and loving heart you have.