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mrsmason

New member
Joined
Dec 26, 2011
Messages
4
Reason
CALS
Country
US
State
MI
City
Oakland township
My life has been sped up by 35 years. Im making decisions that I shouldnt have to make right now... Social Security, retirements, etc. My husband was diagnosed with bulbar ALS in May. I am only 34 years old. I am going to have to live a long time alone. Will my three year old remember her dad? Will my five year old? Who will walk my girls down the aisle? I feel so guilty feeling so bad for myself. Im supposed ot be the strong one. I totally went overboard on Christmas presents for my girls because I feel so badly about them losing their dad.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Poor guy, you've got him dead and buried already. Sounds like you need some counselling.

AL.
 

mrsmason

New member
Joined
Dec 26, 2011
Messages
4
Reason
CALS
Country
US
State
MI
City
Oakland township
Wow. That was really harsh. Ill be leaving this forum now. Thanks for NOTHING.
 

trfogey

Very helpful member
Joined
Jan 31, 2008
Messages
2,017
Reason
PALS
Diagnosis
07/2007
Country
US
State
NC
City
Raleigh
Sometimes, the truth is harsh, as you discovered in May. We're not here to kiss your behind and softsoap everything for you. We're here to give you the information that you need to know. And Al's comment was lesson #1 -- PALS and CALS see the world differently. I have to admit -- my initial reaction was similar to Al's. Others will chime in as the day passes.

Here's lesson #2 -- don't borrow tomorrow's trouble today. As you've discovered, there are lots of things that need be taken care of and your ability to prioritize will make the most significant difference in how things go for you, your husband, and your children. The wiser you are in spending your time and energy, the better off all of you will be.

You've had your cry about who's going to walk your daughters down the aisle -- something that's not likely to happen for at least fifteen years. That was a moment of self-indulgence. I don't get the impression that it made you feel any better. That's the kind of thing you'll want to push off to a distant future date, because it saps your morale in the present and doesn't need to be considered now. The fewer moments like this that you have, the better the morale of your whole household will be.

Sorry you have to be here. Please consider letting your husband know about this forum because he needs the resources here as much as you do.
 

mrsmason

New member
Joined
Dec 26, 2011
Messages
4
Reason
CALS
Country
US
State
MI
City
Oakland township
trfogey,

Thank you for explaining the purpose of the forum. Apparently I had the wrong impression about the forum. It is entitled a "support" group and I most certainly did not expect a hostile reply to my very first post. Anyway, I don't think this is the place for me and hopefully soon I can figure out how to deactivate my account, although I'm afraid to ask for help with that...
 

trfogey

Very helpful member
Joined
Jan 31, 2008
Messages
2,017
Reason
PALS
Diagnosis
07/2007
Country
US
State
NC
City
Raleigh
Give us a few days and look around some more before you leave us. Sometimes, it's better to lurk and not post when feelings are a bit raw. Besides, someone will likely be along in the next few hours to chastise Al (and probably me too) and give you more of what you were looking for. We can be a fractious bunch and an acquired taste, but you won't find better or more knowledgeable people -- people that have walked or are walking the road you're on -- anyplace else.

By the way, the guy that made that post is the guy to ask to get your account deactivated.
 

Jellycat

Distinguished member
Joined
Jul 3, 2010
Messages
443
Reason
Lost a loved one
Country
IRL
State
Dublin
City
Dublin
Ok here's how I see it. The feelings I hear in your post, guilt, fear, worry are, I think, pretty normal given the situation. What cals has not felt them? I hope they dont dominate for you though 'cause theres a whole lot of living to be done too.

I believe those feelings can pass through us more easily if we make an effort not to feed them too much. Some thoughts, like you mentioned your pals not being around to walk your daughter down the aisle, are going to come with super sad feelings, so why think about it now. As the AA adage goes 'Keep it in the day'.

I did lots of worrying while my pals was alive but it added nothing to her quality of life or mine. She had a great way of focusing on what she had and could do rather than on the losses and what she couldn't do. She's still teaching me really.

I hope you do give the forum a try. I got most all of my best info and support here. I hope you'll find what you need too.
 

HelenL

Very helpful member
Joined
Dec 17, 2010
Messages
1,583
Reason
PALS
Country
US
State
MA
City
Southborough
mrsmason, all three who have answered you have made excellent points... yes, you can vent on this forum, but don't stay there. Life is for the living, and your hubby is here, right now. Make your plans as you have to, especially depending on his progression. But look into the clinical trials, go for the trip of the lifetime, if he's got bulbar, start banking his voice, or at least start videotaping him talking to his daughters for the future. They will remember him if you keep him in their lives, not stuck off in a bedroom and they have to "stay quiet" and "not bother Daddy" type of attitude. I have 3 children, and when told that I had ALS (and I was by myself at the time thank you very much to that neuro!), I immediately thought to myself that I have to have at least 10 years to grow them up. Hopefully a lot more.

BTW, Al may seem harsh, but he made his point, and he's a great guy... so feel sorry for yourself and your kids, but then say "it is what it is" and I choose to LIVE with ALS than be dying from it.

I hope you decide to stay, and btw, you're invited to the Come for Tea thread, where we all choose to talk about virtually everything BUT the elephant in the room.

Merry Christmas.
 

susanf

Senior member
Joined
May 26, 2011
Messages
647
Reason
PALS
Diagnosis
06/2011
Country
US
State
fl
City
Palm Harbor
Hello and sorry about your husband. Many of us have kids here just like you. I have a 12 year old but there are some here with infants. Life is unpredictable whether is ALS or getting in your car and getting killed by a drunk. This forum has been a life saver for me. You'll get answers here no doctor will ever tell you. Like Helen said join us at the tea thread. It's a bunch of pals and cals that get together daily and chat. We tea ladies like to think of our glass as half full.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
I'm sorry if my post seemed harsh but your post was all about you. No mention of the fears and struggles he is facing . It affects the whole family. It just seemed so one sided, I felt I had to say something. I hope one comment you don't like scares you away. The road you are about to about to travel is a lot scarier. It's comforting to have friends along for the ride.

AL.
 

heymom05

Active member
Joined
Oct 20, 2010
Messages
92
Reason
CALS
Diagnosis
09/2010
Country
US
State
LA
City
Lafayette
Yeah, but in the caregivers forum, it can be about us. Everything else in our life is about ours PALS. Why do PALS het to judge us in the caregivers forum?
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
We do not tell anyone where they can post or can not post. I usually read every post on every forum to see what is going on. If I want to put in my 2 cents worth I should be able to. You can't tell me that this is the only place you post.

AL.
 

Felica

Distinguished member
Joined
Nov 15, 2011
Messages
116
Diagnosis
06/2011
Country
US
State
Al
City
Gardendale

trfogey

Very helpful member
Joined
Jan 31, 2008
Messages
2,017
Reason
PALS
Diagnosis
07/2007
Country
US
State
NC
City
Raleigh
Yeah, but in the caregivers forum, it can be about us. Everything else in our life is about ours PALS. Why do PALS het to judge us in the caregivers forum?

Feel free to start your own board for caregivers only.

Just curious -- have you ever showed your PALS this website? If not, why not? Doesn't he/she deserve support too?
 

Katie C

Very helpful member
Joined
Aug 1, 2009
Messages
1,560
Reason
Lost a loved one
Diagnosis
07/2009
Country
US
State
CA
City
San Jose
Mrsmason... see if you can find an ALSA support group in your area. Many of them spend at least part of their meetings split into separate PALS and CALS groups so you can feel free to safely vent those feelings you wish you didn't have.. including the "What about ME!?" feelings which are very valid. Your feelings are your feelings, not good or bad, they just "are"... it's what you do with them and how you act on them.

For the record... your post said to me that your are spending a lot of time worrying about your girls. Kids are resiliant. But right now you are grieving dreams... a life you would have had, a life your girls would have had. That is why ALS is called a family disease. I do agree that getting yourself some counselling and/or some depression or anxiety medication could be very helpful. And please don't give up on the board. There are really a lot of very understanding, compassionate people here who want to listen and want to help.

For the record: Glen never saw this site. I talked about it to/in front of him. He didn't care. Literally. Not "oh that's nice honey" but "yeah, so what." The PALS that are on this site are by and large a caring, compassionate, informative group of people. Sadly, not all PALS are that way.
 
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