New CAL Here...Hello

tomslady · 08-01-2012, 05:41 AM

Hi Everyone! I'm new here and can't express enough how glad I am to find all of you. My sweet man (fiancee) was diagnosed Dec 2011 and has progressed since then to a PWC with no use of arms, hands or legs. I have felt so completely alone until now. I think I stayed in denial until this past month and now I'm going from crying my heart out to anger. To see every day what this disease does and there's nothing we can do makes me sick. I know all of you understands these crazy whirlwind of emotions we all go through when others just don't. I'm so scared, frightened is more like it. I also have this huge guilty feeling of not doing enough even when I do everything I know to do for him (feeding, bathing, dressing, everything) but I still feel so consumed with guilt and fear.
I'm sorry for sounding like a lunatic. I just haven't had anyone to talk to. I tried talking to my doctors but all they could tell me was how I've done everything and to think about putting him in a nursing home. NO!

joni51 · 08-01-2012, 06:41 AM

Hello Tomslady. We are from Alabama too

Sorry about your Fiance, and his fast progression. Great family here with lots of understanding and Hugs..

WellsRuby · 08-01-2012, 08:09 AM

Hello, and sorry that you have to be here. I have gone through all the emotions several times and will many times more. All you can do is be there for him like you are and come here for yourself. This is a great family to get support from and so much information as you need it.

panguinjen · 08-01-2012, 08:14 AM

Hi Tomslady,
Welcome to the place none of us want to be, you'll meet the best people here. I can't tell you how often this has helped me and helped my husband...

Jen

hjlindley · 08-01-2012, 08:19 AM

Our emotional rollercoaster is a shared one. I forget what I can't do anymore then get angry when I can't do it. We will help you any way we can. Vent away, my dear. WE all understand

HelenL · 08-01-2012, 12:17 PM

Hi tomslady, is his family involved with his care at all? If not, they should be, and in a major way. You can't do this without a network of friends and family, along with the professionals. Have you been in touch with ALSA and MDA? Is he a veteran? So many questions... sorry.

Anger is part of the grieving process... we've all been there unfortunately. This forum is a lifeline to me, and has helped me get through the last couple of years. I hope you stay on here, and that your fiance's progression slows down. Good luck.

skipper66 · 08-01-2012, 01:00 PM

Hi Tomslady,
Welcome to this site. The people on here have been beyond helpful and understanding. If you have any questions feel free to ask on here. Everyone on here is more then willing to help each other out when they can. You are doing a great job caring for him but I think you need to get some additional outside help as well. You need to take care of yourself too. You might try Hospice because ALS members can join right away even if they survive for 20 years. Stay strong and vent on here anytime. I will be praying for you. Kim

vzandt · 08-01-2012, 05:31 PM

Hi Tomslady. Welcome to our family. The emotional rollercoster sucks. The guilt and fear we all.have felt. Just know we r here for you.

poppy62 · 08-01-2012, 06:32 PM

HI Tomslady,
This forum and all the wonderful people here have been a godsend for me..

lpcarr · 08-01-2012, 08:55 PM

Hi tomslady, everyone has said it so well. The guilt and fear are overwelming. All cals feel that way. Stay with us. I am fairly new myself and have learned so much. Get some help and take care of yourself too. Prayers to you and Tom.

notgivnup · 08-02-2012, 04:01 AM

Welcome tomslady, So sorry to hear about your fiancee', all your feelings we can relate to. I am not a caretaker but think you have it tougher than we pals. Vent away we all do that also. We are a family and are here for each other. {{HUG}}

scotslassie · 08-02-2012, 12:14 PM

Hello Tomslady. You don't sound like a lunatic at all. Everything you said was very familiar. This is a great forum and you will find lots of help, support and information here. I wish I had found these folks a lot sooner than I did. They have helped me through some very difficult times. All the best to you.

cruzkelly39 · 08-02-2012, 12:47 PM

hello everyone... me too new here

Louie_in_SF · 08-02-2012, 01:23 PM

I have lived with major medical issues since age 25 due to a serious industrial accident in Alaska ... from the standpoint of a patient, I urge you to make sure you ask your fiancee (over and over if necessary) what HE wants before you put yourself through all the guilt and trauma ... some people thrive on being nurtured and others are smothered by it ... make sure you keep your focus on what's best for him and you will feel much better, as well ...

cervus · 08-02-2012, 03:23 PM

You're not behaving like a lunatic. Although we all do everything we can, feeling helpless because ultimately there's nothing more we can do, is natural I think. You are doing an amazing job. Live, laugh and love each other and everyday while you're still together physically. Leave no words left unsaid. Sorry you both are going through this. Yasmin.