selfish or supportive?

[swmn]

So My dear friend continues to deteriorate with ALS. He is our school principal whome many of us adore for his vision and guidance. I am quite close to him and his wife - doing everything I can to simplify their lives - I don't want to lose my mentor's leadership any sooner than I have to. I do believe that by running our high school, he continues to focus his energy on something other than his physical struggles. He also guides all who surround him - kids and adults- realize a very different perspective on life. He is now using a conversion van and tomorrow will be his first day in school with his fitted chair. He tires quickly, his lung capacity is quite low. I want him to stay as long as he physically can, but wonder if I am pushing him to do something that he is ready to let go of but I think the school leadership gives him a reason to get up every morning. I have read other PALS who post regarding "Pain" factors that do not go away... he has not shared this kind of symptom - though I know cramps continue to take turns throughout his body....He just has so much to offer, and I don't want to see him go- am I being selfish - to urge him to stay? I am fully willing to drive him to work & home when he no longer can transfer - He seems to enjoy his job - dispite the petty discussions he must confront... My hope is by his continued involvement, he will slow the progress of ALS.

 

[swmn]

thanks anyway

I understand that maybe my lack of significance has been validated by all you who feel your frustrations and confusion are more time worthy- so maybe i'm not THE most important person in my friend's care. B:shock:ut hey - I understand that maybe I should shut up and not ask for opinions since he is ONLY a friend who I deeply care about - sure - I don't have the big weighty questions - but I want to help w/o being in the way - and I'm gutsy enough to ask you people... thanks anyway - but I guess this sight isnt for people like me. Good luck to you all from all the people who care - that you choose to not let in... :shock: a lot of people want to help.

 

[CindyM]

Hey Swmn. What's up? Did somebody PM you with a bad message or something? I understand nobody answered right away but I wouldn't take that personally. It is a long weekend and PALS (People living with ALS) and their CALS (People caring for people living with ALS) always have a lot on their plates. It usually takes much longer to do normal things and something like a family dropping by on a Monday holiday can throw a monkey wrench into the works.

This site is for anybody who is affected by ALS, as you are, and your concerns are legimate, so don't fret. I'd offer advice myself but nothing much comes to mind, except to keep offering support and keep trying to walk that delicate line that you are on because at some point this family will need all the help they can get, even if they seem to be doing fine right now. Regards, Cindy

 

[Steve100]

This place does get VERY quiet on weekends

 

[hboyajian]

I have been here today, since I have the day off, and my PALS passed away last December. Sometimes it takes me some thinking time to put an answer into words, but I have been pondering the issue of continuing working when diagnosed with a terminal illness. It really depends on the individual, like so many other decisions. Some people NEED to continue working to support their families as long as they can. I would be in that category, I think. Some people WANT to continue working because their work is extremely important to them and their sense of self and responsibility in the world. Some people want to quit work if they can to do other things for themselves or with their families, while they still have the chance in this life. Some people have to quit working because they simply cannot physically do it anymore. If your friend is pushing himself physically farther than he really can, this could potentially exacerbate the progression of his illness. My father did this, and I saw him deteriorate quickly. He was in pain just trying to hold his head up and carry on. He did retire 2 years before he died, but the last 6 months of his working life was excruciating by the end of every day. He was not diagnosed with ALS at that time, and he loved his work and so had a really hard time leaving it to someone else. My dad retired at age 82 from his second profession (first he was a high school teacher, and then a small storekeeper and craftsperson) so I am not kidding.
Your friend has big decisions to make about his life, and it may be very hard since he has so many people depending on him. You should not pressure him in either direction based on your own wants and needs, but be a true friend and encourage him to do what in his heart he chooses to do.

 

[Gina]

Swmn,please dont feel rejected.I admire your spirit and willingness to help your friend.A lot of us on this site just wish we could have a friend like you whom we could turn to for help with the ones we are caring for.Being a primeary caregiver is often so overwhelming and we often feel so needy ourselves that we can become focused on support rather than the support others need.You are as important and welcome as any other member on this site.Try to take heart and be a little patient and you will see this forum will welcome you and give you the guidance and understanding you so desperately seek.I wish i had some answers for you but i think the only one who can answer these questions is your friend.Do you ask him all the questions you are asking us?God bless you for being so enthusiastic about helping your friend.....gina

 

[liz]

"Did somebody PM you with a bad message or something?"

If something like that happened, that would be terrible. Why would anybody do something like that?

Swmn - I hope this isn't true, but if it is please ignore whoever did that. Certainly, that person does not represent this forum's spirit of goodwill.

 

[swmn]

Thanks so much

so glad to read your supportive replies in the Forum-
I am very anxious regarding what to do to be helpful &supportive while not getting in the way - or persuade him to push on when he has become too physically comprimised.
I didn't know if I belonged here - not being a primary CALS. But I'd trade years of my own to give to him if I could.

Liz - your perspective on how working while confronting this disease really helped me step back and see the motives behind the chioces PALS must make for themselves. I know we will encounter some serious crossroads here very soon, as my friend makes his choices.

I hope all you CALS realize there are more helpers like "me" out there - they just maybe can't jump in and help spontaniously - a lot of people care and want to help.

Thanks - I'll let you know about his choices as they become more clear to me.

 

[liz]

swmn -

I consider some of my colleagues to be among my best supports in contending with this disease.

Liz

 

[nsmith555]

Swmn, I just wanted to say that I think it's a very unselfish thing to be such a support to a friend. As a friend, you are making a choice to help out your PALs - I'm sure he and his wife are very honored that you have chosen to do so.
God Bless You,
Nicki

 

[Al]

SWMM. One of the best things you can do for your friend is stay with him while his wife gets out to run errands or just do what she wants to do without worrying about him. If he's in a wheelchair and depending on what strength he has left for transferring he probably shouldn't be left alone. You didn't mention kids. My wife sure appreciates it when neighbors or friends call and say that they'll come from 1 till 4 on Sunday so she can get out for a while.
AL.

 

[swmn]

Thanks Al
I sure hope -once he gets to this stage of care - I am given the opportunity to stay with my friend while his wife gets out... - I'm afraid though - once he can no longer be alone, they will move away - to where their kids are. Sadly, their kids seem wrapped up in their own lives... I think my friends may be disappointed in the perceived help from their kids... - I really hope I'm wrong - but if the kids aren't going to be a help - I hope my family and I are given the opportunity to spend time with him.I just want to ensure his life is full. - I'm not judging his kids - but if he were my dad I'd be home a lot more! I think this is my selfish reason for wanting him to stay working - lots of people at work care so much about him.:-?

 

[hkohlman]

U R Wonderful

swmn you are a great friend I am glad you found this site we love to hear from people just like you. It gives us the strength to go day per day. I am a caregiver to my dad who is 65 years. I depend on my friends more then you can imagine. Bless you for caring so much. :-D

 

[brooksea]

swmn,

It's great that you are such a caring friend! My husband wishes he would have been allowed to continue working. I would say if he is in no danger of hurting himself while at school and if he enjoys what he's doing then stay employed.

You may have to impose yourself upon your friends when you see they have need, as they may not ask for help.

 

[swmn]

Assertive support

well this is where I began - I just jump in and help. They are pretty reserved people and I think they are taken back by some of the "Surprise support" they get from my family... Hopefully it isn't "Imposing" - but they aren't ones to ask! I'm wired to help and always have my radar up - watching for the opportunity to lift the burdon. Just hope I'm not overdoing it - it's harder for me to 'Not Help.' I don't know how I'll handle them leaving - knowing there could potentially be a big VOID. They'd be moving ~ 5 hours away When I read Delb's posts, my heart falls for him - if he were here, we'd help him.
This disease SUCKS and NO one deserves such a nasty deterioration / death. When I found out about my friend, I learned a lot about ALS and now It will always be the forfront of our "dontations." We did the ALS walk in MN and earned over $12K for research - " GO JOHNNY WALKERS!":mrgreen: I Pray for you all, But time for research / stemcell to get serious about addressing this!