Need to help someone

[Compass Rose]

I'd like to think this guy's intentions are good. Maybe he's feeling desperate and is looking for a brief escape, but feels guilty about it and is therefore offering to help. Maybe he feels a need to connect with other caregivers. Who knows what motivates a person?

Still, it would seem that his wife needs him most right now.

 

[jamiem]

HeartbrokeninNM,

I am much like your wife with bulbar als. I have a sister who lives in Albuquerque who knows several people there with ALS now that I have been diagnosed. I will ask her if she knows any that would gain some respite from your very generous offer. You can PM me if you like.

 

[KKay]

I think the point was missed. I do understand your need to help others, not as much as you want to be there for your wife but you do want to help others in some way. Maybe there is a family member or friend that needs your help. You may be searching for a family afflicted by ALS because you understand this pain so well. It is admirable and you should be applauded not criticized. My husbands condition has progressed to a point where he needs 24/7 care and attention. For all but maybe 2 - 4 hours (usually 2) a day it is me. I also help one of my dearest friends that is suffering with cancer and chemo treatments. I bring dinner to her and her family once a week (there is a group of us helping her). I know all to well the pain, fear and sadness that they bear each day. I am glad that there is something, however small that I can do to make their burden less. And it does make me feel good to do something for someone else. This does not take away from my husband or his care, he wants me to do this for our friend (actually he likes to pick out the menu!). And I can assure you neither of us will ever regret it.

 

[VoiceforLinda]

This post makes my heart sad. Be with your wife and dedicate yourself to helping others after she no longer needs you. You can't imagine how lonely it is to not be able to speak. You can't imagine the overwhelming fatigue that she feels just trying to breathe. She may be mobile, but she needs you.

 

[ottawa girl]

Dear Heartbroken,

When I initially read your post, I wasn't sure what to make of it. I am in the starting blocks at this marathon (still mobile & self sufficient) but I am absolutely thrilled that my husband now works at home, at great inconvenience to himself and his colleagues, several afternoons per week. He does this to keep me company thus ensuring that I'm not alone with my thoughts.

Then I realized, there is something you can do, from home, which would benefit ALL of us. Have you thought of organizing unique fundraising events? You appear to be an energetic and motivated person. You write beautifully and I suspect you are a gifted communicator (if given a chance). You could be our voice in New Mexico and beyond. While you would not be doing one on one personal care, fundraising and awareness campaigns would benefit thousands, including your dear wife and yourself. Plus you can do much of the legwork in the comfort of your Lazy-boy.

Maybe, just maybe, funds raised would lead to a cure and shut down this site!

 

[vzandt]

Elaine...your so smart

 

[mthapa]

I read your thread "need someone to help" where many people took it negatively. people can make their own view but you are trying to help someone who is facing more problem than you & we have to appreciate your feelings. if you couldn't find somebody in your area to help, i would like to request you to see little far & we can find many to ways to help people suffering from same reason as we all. but the difference is they r facing this problem in very difficult circumstances which most of us can't even imagine. I am going to post a thread about financial aspect of ALS soon, hopefully tomorrow or the day after.

humanitarian work doesn't have boundary. we can help needy people living any part of world. 100$ per month can help great deal to ease my life & there are lots of PALS & Caregivers who are facing extremely difficult financial situation like me or more than me. if we start to create a group of 10 people ready to help 10$ to ALS affected family every month, we can help a PALS. you can create a support group in your community beginning help someone need that & we can show a path to others too.

 

[HeartbrokenInNM]

I am shocked that my original generous offer was so maligned by several of you. The one I called an amazing idiot was the one who replied with the thinly-veiled expletive. Unfortunately, some others have tried hard to earn that label as well.

No one knows better than my wife and me what my wife needs right now. For the myopic responders here that chose to attack me, since she can still do most things for herself she refuses assistance of any kind. She knows that the time will come when she will have to be helped so until then she is admirably determined to maintain her independence as long as possible. Is that so incredibly difficult for some of you to understand?

This situation puts me in the unenviable position of feeling overwhelming compassion and a desire to do what I can and not being able to help her much for now. She herself has sought an opportunity to help those in worse shape than she is currently in and again no takers. What gives?

Well, despite the naysayers here and the lack of any real help, I have indeed found an opportunity to help a CALS. Until my wife needs and wants me here full time, I have the bandwidth and the compassion to help one less fortunate and will do so.

To those who understood my original post, thank you for your support. To the rest of you, I'll assume it is your individual circumstances that have made you so nasty and jaded and I'll try to forgive you all. It won't be easy, however. I've spent many hours reading these forums and don't recall seeing anyone viciously attacked -- let alone for trying to help others. Some of you really need to rethink your attitudes.

 

[brooksea]

HeartbrokenInNM, you are correct in assuming individual circumstances have made some nasty and jaded. For my part, I apologize. I'm still mourning my loss and the hole in my heart sometimes clouds my attitude.

Good luck to you and your wife.

 

[rerejina]

Thanks for sharing the info. Very Useful.

 

[HeartbrokenInNM]

Brooksea, apology accepted and allow me to offer my heartfelt condolences for your loss.

 

[skipper66]

I would like to apologize as well. My father needs assistance 24/7 so my judgement as well was probally jaded. I am so emotional with my dad having this terrible disease. I truly wish you and your wife well. Please accept my apology as well and my inappropiate post on your profile. Kim

 

[scotslassie]

Me too, please accept my apologies for jumping to conclusions. When my aunt was diagnosed I just wanted to gather her into my arms and keep her there forever. It wasn't to be and it wasn't what she wanted either, she wanted to make the most of her time left, and she did. She didn't want protected or treated like an invalid. I understand now. Best wishes to you both.

 

[HeartbrokenInNM]

Your apology is accepted as well. I wish you and your father the very best.

 

[Compass Rose]

Heartbroken, I'm sorry your intentions were so misconstrued. You sound like a very kind, caring person. I wish you and your wife peace and strength on this journey.