Can somebody tell me?

[dian_na]

Manage same as you, one day at a time, one problem at a time. And for me I will have to manage me later ain't time for that

 

[Jason's Dream]

I couldn't agree more on the "no friends" and family absolutely do not know what it is like to be a caregiver to a PALS, to watch your sweetheart slowly slip away from you, to constantly be reinventing the wheel as you search for new answers in how to make things better and how to better take care of your PALS. What really gets my goat, is when I try to talk to someone reguarding Jason's stupid family, or our latest hurdle in the progression of disease, they automatically either:

A) Know exactly what to do and how to help your PALS and talk at you like "why didn't you come up this or try that"? As if we haven't tried anything at all, or already tried what they are now suggesting, because they all of the sudden know ALL THE ANSWERS.

B) Try to make you a saint, which part of me thinks these words are cop out words, because they don't know what to say, andall they are really thinking is, what a crappy hand life dealt you, sucks to be you, type of thing.

C) Admonish me over my behavior in what or how I think, and certainly it couldn't be that bad, and how I should be the "bigger" person, etc. Y'all haven't walked a mile in my shoes, so don't even begin to think you have a clue in what a deal with on a daily basis, and yes, it really is THAT BAD. Ugh!

 

[stellfox]

I have to agree with all of the above that mostly everyone except family and a very few friends just disappear. My Dad who had many friends and had 10 months of life after being diagnosed who was taken care of at home after a peg and a vent had very few visitors, they were perhaps shocked at what he looked like and the inability to communicate increased their uneasyness. My Mom and my 4 siblings and I had 24x7 care with 2 of us on duty at all times. I am in awe of anyone that can do it alone. My Dad after onset of this disease remembered his grandfather's illness as ALS in the symptoms being similar--blood tests revealed --SOD1--A4V. My dad died in Oct of 2008-- My younger brother with first symptoms 2/2009---diagnosed 6/2009--died 3/2010-- he was 48--- another cared for by just family. my younger sister's first symptpms 5/2010--positive ALS diagnosis 6/2010--SOD1--A4V-- Died --2/2010---- Cared for at home by just 3 of us remaining siblings and our mother..... Alas I have tested positive for SOD1-A4V-- no symptoms as yet. The PALS I do beleive know how much their caregivers have sacrificed and how much we love them perhaps some day it will be better. My hat is off to all of you -- Angels you are!

 

[AKjo]

Welcome to the forum, stellfox. It sounds like with your experiences with your family, you probably know more about ALS than most of the rest of us! What a heartbreaking disease, yet there is a calm, matter of fact tone to your message. Hopefully your symptoms will NEVER surface, and you will escape this nasty disease. Please chime in and share your advice and expertise - I, for one, have a lot to learn, and this forum is a fantastic source of all kinds of information. Thanks for being there for your family - YOU are the angel in their lives!

 

[stellfox]

Thanks for the welcome, I have often wondered if a comment from me would be helpful to some but have also wondered if the truth (in my experiences) would be too much to handle for some. Often the comments of the doctors and nurses and other professionals were the same as yours as in knowing too much about this disease. So far the most knowledgeable professional about care-giving at home and the source of the best information for us has been Mary Beth Guise of ALS-TDI, she often returned my calls for help and posts regularly. But most of all I hope that you all will cherish every day with each other and put it all into perspective, we have the gift of some time and can look back and say you weathered the crisis together and did the best you could do whether it is at home or in the hospital or nursing home, some may say that this mainly fatal disease is without it's champions but for each of us we are champions in what we can do!

 

[Katie C]

Dear Becca.... Please let me know the location of the person that caused you to write reason C above. I've been itchin' to B==== slap someone and that person sounds like the perfect target!

I had to laugh the other day. My late mother-in-law's estate still isn't settled, so I finally sicked my attorney on the brothers in law who apparently have phones that don't dial out and gps units in their car that can't find one of the largest cities in California. It seems they didn't want to go through attorneys so they could maintain "good family relations." Oooookayyyyyyy.

 

[Barbie]

stellfox--what a hand you have been dealt. I feel for you and am impressed with your strength of character. stay strong.

 

[brooksea]

stellfox, you can let it all hang out here! If you have something new that we haven't heard, maybe we should hear it. Don't hold back. It sounds as if you may have a lot to say.

fALS has to be a very cruel joke on mankind. I'm sorry.

 

[brooksea]

So, Mr. Party Animal has sent me 3 emails regarding his get together. His last was a real treasure, entitled XX's Party, referring to my husband! This is now a party for my husband? He had copied ALL friends. He wanted to get a head count of who would be attending. Friends started responding to the email and I got a copy of each one. An hour later he calls me and tries to be funny about whether I would be there. I was already so pissed that I didn't mince any words. I told him I had things to deal with and I would find a way to get my husband to the party, but I would not be going. (Mind you, XX's sister lives 3 houses down and is dating this guy). That's when he told me not to worry they would get XX to the party, but he wanted me there, too. I told him our son is having issues that I thought I had taken care of, but apparently I haven't. So, I really have to take care of the situation. I was very stern.

I hate being *****y with people, but don't fricking PUSH me over the edge.

 

[brooksea]

OK. He emailed me and then called today. He told me I didn't sound as bad as I did the other day and asked if my husband is doing better. This guy is a hound! He again tried to persuade me to come to his party and told me about each wife that would be there. (I could care less, have any of them called me? NO! Not o n e. ) I then told him once again about our son and gave him more detail.

His answer: "You can bring him too and we can discipline him! I used to be a father and still am. You know what I mean? I know what you are going through."

NO HE DOES NOT! :evil:

 

[dian_na]

CJ, I think this guy is really trying to reach out to your husband and sincerely don't know how. I think I would copy your first post to us, tweak it some. Try to be humble in what they could help with, his care is more and all these chores have to be done and your son going to a party isn't appealing however if some of his friends could stop by and spend some time with him perhaps do a couple chores like cut the grass.
From what you type he's a drinker prolly lives for the next party thats his lifestyle, he don't know how to behave any other way. I think I would try to turn this into something useful. You know my situation, I wish her friends would call, none of them bother to do anything except Mariann M. who once a quarter stands over mom weeping of how horid this desease is, I never know to stop her or thank her for comming she's so depressing.
Also is your son creative? Maybe he can work his charm into running the schedule for these old buddys,

Just a thought of how neat it could be if it'd work out that way.

 

[brooksea]

Yes, that would be great! Thank you.

But, when I told him that I thought his (worthless sack of s#!*) younger brother was going to take him, he told me otherwise. "Your neighbors (that live next door to SIL) down the road will pick him up and bring him home. After all, why should his brother have to go all the way out to where you live and bring him here and back?"

Well, because he IS HIS BROTHER!

But, I understand the logistics. But not the LOVE?

 

[dian_na]

I sincerely hope things work out for you CJ, I know it sucks.

 

[TomsSIL]

My husband and I are relatively new to this world, but we can already see what you mean. The man my brother-in-law lives with (who is also his step-father) is a lazy piece of garbage who won't lift a finger to help. My 9 yr. old daughter took Tom's soup cans to the trash because they were piling up on the table. Why couldn't the stepfather do it? He's a real piece of work. So, the roomie won't help, neither will the older brother, the nephews or the other SIL. Friends don't stop by because they "don't want to see him getting a tube feeding," as if we do it 24/7. They don't want to be patient enough to listen to him talk. It's sad for him that his closest friends don't stop by. He has us - my kids are trying to keep him interested in things and talk to him several times a day. It's just kind of crazy. No one understands what it's like and God knows they aren't about to find out!:-x