For those who love and have lost their pals

[Jellycat]

Hello friends,

Thanks to this forum family I remained sane whilst my pals was living with als. I continue to come here and hope I can contribute something from time to time to pals and cals out there.

As some of you know my pals died in June. It seems to me that for cals, part of living with als is learning how to live after the death of the one we love. I wish it wasn't like that but it is.

I thought it might be good for those wanting to post about the time after to have a spot of their own on the site and suggested this to David, who has set it up. I guess now we need to see if anyone else feels like me and wants to use it.

The reason I thought it might be good to have a space on the forum was that not everyone may want to look at this section. I know for instance when my pals was alive I only visited the in memoriam section when it concerned someone I had come to know. Anything else was too painful. I don't want to foist this part of the cals journey on anyone. ( I still can't manage the DIHA - I think those of you who contribute so much there are saints!)

For the moment the section is called 'past caregivers (cals)' but I know if there's a better name out there that is changeable.

So, what do you think?

 

[momofsixkids60]

Avril,

When I saw that you were the one that wanted this section, I sat here trying to figure out how to give you a "tribute?", per say?! I'm not sure that came out the way it sounds. So I was glad you started.

After the passing of your mother; I thought, what's next?, does she pick up where she left off?, did she have a life before ALS crept in?, how does one move on?.

Believe me, there's a million more questions I could think of! I even asked you out of concern. This was one trip you hadn't included in your journey of life. And I left you to heal; sending a note once in a while.

Today, I want to thank you for being one of the BEST DARN CALS there ever was. You were not only a Cals, but also an extended Cals to each and everyone of us, diagnosed or not. You allowed us into your home where you shared your rollercoaster of a ride, and for that I am thankful.

I know you didn't intend this forum to be a "pat on the back, job well done" and this is not my intentions. I just want to thank you for giving of yourself to every person that has posted here. I believe everyone here will agree with you,, that this forum is long overdue!

Much Love to You Avril,

Kimbejly

 

[bytheseadana]

My husband (ex)now was diagnosed with bulbar and then ftd, he treated me terribly. I was able to take time off from work for 2 years to care for him 24 hours a day but he continued to berate me. I ended up with a nervous breakdown in the hospital and he tells me he doesn't want me to come home and never wants to ever see me again. Next thing you know he's serving me with divorce papers. So after 4 years of marriage our divorce was final. I never got to see him again and all my belongings are at the house and have been without since March of 2011. I can hardly function, im on so much meds and don't know how to go on. I feel so ugly and angry. Taking one moment at a time trying to remember to breathe. How do you go on?

Any words of wisdom,
Dana

 

[Jellycat]

Wow Kimberly, thanks. I have so appreciated all those who've checked in on me. I haven't said much because I haven't felt able but I've been here, reading many posts.

I did have a life before ALS and am lucky enough to have gotten back my job - I left to look after mum in 2009 when she needed me- but it's not a picking up where I left off. Nothing is the same inside me even if things look the same to my colleagues. I sometimes feel like I'm living in a surreal other world.

Dana, I cannot believe how hard you've had it. I'm so sorry. No words of wisdom. Breathing deeply & taking it a day at a time sounds good. Staying present to what's happening inside you. I've been down the cul de sac of regrets and of avoidance of my feelings-you know keeping busy, doing other things, not talking about it, staying in bed, staring out the window for hours etc. It doesn't help but sometimes it's all I can do still. On a good day I can stay a bit with the loneliness or sadness or anger or whatever and know its ok to feel that way. That makes a difference. What's helped you get this far?

Avril

 

[tammyg]

Bytheseadana, wow, i am so sorry you had to go through this. It sound like you gave it all, and I mean all to him and got kicked in the gut. You are not ugly, from your picture I would say quite pretty, and a beautiful person on the inside with a heart as big as a house. I am so sorry he became so bitter. You are a special person to put up with it for so long.
If that what he wants, don't let it hold you back, it's time to start living again. Stay strong, "You Rock"

 

[tammyg]

With this thread, wow what a great idea. I think you always think about what you did not do and wish you would have. I remember the night before my dad died, he went to a wake for a friend, me and my daughter stopped by about 8:30, I went to Walmart and got dad a mouth guard (Bulbar and teeth breaking from uncontrolled grinding) His house only had a little light and looked like they (him and girlfriend) were settled down. We sat in the car and I told my daughter , he might already be in bed, we will come up tomorrow. He passed at 2 am. I wish we would have knocked................

 

[Jellycat]

I'm glad you like the idea Tammy. Hopefully others will post here too. I missed a chance to see my dad the day he died. I was kicking myself for a long time...

 

[Miss]

Dana,

You aren't alone. I know a CALS whose husband did the same thing after 20 years of marriage with 4 children at home. FTD can be as monsterous as ALS. The additional hell it adds to the disease can be unbearable. My heart goes out to you.

Avril,

I have thought numerous times that there should be a sight for CALS that have lost their PALS, especially after reading some of Becky's post after the loss of Jason. Thanks for getting it going.

 

[Atsugi]

Dana: Extreme CALS abuse

My husband (ex)now was diagnosed with bulbar and then ftd, he treated me terribly. I was able to take time off from work for 2 years to care for him 24 hours a day but he continued to berate me. I ended up with a nervous breakdown in the hospital and he tells me he doesn't want me to come home and never wants to ever see me again. Next thing you know he's serving me with divorce papers. So after 4 years of marriage our divorce was final. I never got to see him again and all my belongings are at the house and have been without since March of 2011. I can hardly function, im on so much meds and don't know how to go on. I feel so ugly and angry. Taking one moment at a time trying to remember to breathe. How do you go on?

Any words of wisdom,
Dana

DANA, I wish I could say something that would help. I'll try to stumble through.
I'm not a PALS. I was a very good CALS. My PALS was a gem. I expect I'll be taking meds for a long time. I've cried at least a little nearly every day for five months.

You asked about similar experiences.
But there aren't any that even come close.

Several women have said their PALS were abusing them emotionally, one PALS said his girlfriend packed up and left upon his diagnosis, and I personally know a woman whose PALS drove her to tears routinely, partly because he was, um, intimately demanding but never appreciating.

Honestly, though, I don't think anyone has had anything so horrible and unfair as that which happened to you.

We men don't suffer in silence very well, I guess. I know I don't. Frankly, I've never had to live without a supportive woman by my side until now. It is not easy, on many levels. My 16-year-old boy and I get along well, but my 14-year-old girl is really the supportive one in our new, 3-person family. It's definitely in the X chromosome. Maybe the Y chromosome is a broken X!

I'm a vet. Some of my brother warriors lived in the woods for a decade after coming back. Many are purposefully homeless. Many can't leave the house because they just CAN'T. That's PTSD.

You, my fellow CALS, might very well have PTSD. Seriously. Group therapy. Or just write. Write here, it's safe and I hope supportive.

His ALS is not your disease, and it shouldn't be your problem. He's chosen to suffer alone. Let him have his wish. You did your best. You did great! Now it's time to recover, and join the world again. Someone else needs you and will appreciate you.

May I suggest walking unannounced into a lawyer's office (I'd choose a woman lawyer) and see if the lawyer and the sheriff might be able to retrieve your stuff. This is actually a relatively routine procedure for cops to do.

There's another practical remedy that deserves some consideration. I know this pales by comparison, but somehow I think the principle might be the same. When my fiancee dumped me for another man (in the 1990s), I called her up and told her to write me a check for $2000 for keeping her dog in my care. Surprisingly, that simple victory made me feel better.

So ask a lawyer to pursue a tort action for actual damages, pain and suffering. You don't have to be there, just let the lawyers handle it. You might find some comfort in that.

As a 20-year military man, I'm much more familiar with military terms, so here goes: You already fought that war. You were shot and nearly killed. So patch your wounds, bury the dead, get some R&R, give yourself a medal, and (again, as we soldiers say to each other) welcome back from The Shit.

I wish you the best, Dana. Hope you're able to get back in the saddle. You're definitely intelligent, attractive, and have proven your ability to love someone through the hardest of times. You have a lot going for you, and it would be a shame (but certainly understandable) if your bad experiences got in the way of a happy life. You surely deserve happiness, and I hope you find it. -- Mike

 

[Katie C]

Dana... you need to find yourself an attorney. Was he diagnosed with FTD before he filed for divorce? You live in California m'dear... half of everything is yours. Atsugi is right about the PTSD. I know I do.. see above at the flashback. Creepy! FTD patients are abusive.. they have no inhibition, no remorse, and they can be very mean. Did you actually sign the divorce papers? If so I have to WHY?! If not.. get yourself an attorney.. sit down with her/him and explain the whole FTD issue and move forward from there. In the meantime, do take care of yourself and your emotional issues... they are VERY real.