Need to help someone

[HeartbrokenInNM]

Hello wonderful people,

My wife began her journey with bulbar-onset ALS almost exactly 1 year ago. She can no longer speak or eat and breathing is difficult but being the amazing woman she is, she can still do many things for herself and doesn't require 24-hour-a-day attention -- yet.

I have spent many hours reading the painful stories that so many of you share but I am most struck by the caregivers that are essentially overwhelmed. Since I have some time before my wife needs me continuously I desperately want to to do the only other thing I can -- help out some stressed caregiver or a PALS themselves. I have offered my services to the local ALS chapter and have heard nothing. I have looked for other ALS-specific volunteer opportunities in my area and have found nothing. Surely someone in central New Mexico must be in need of some help. Companionship, grocery shopping, cooking, gardening, housework, computer programming, chauffeuring -- ANYTHING! I just want to help someone while I still have time and just can't find an opportunity.

Is there ANYONE out there that needs some help? Needs a break? Needs someone to talk to? Needs someone to lighten the load? Though my heart is permanently broken, I can still muster the caring and compassion to help others dealing with this horrible ailment. Why should it be so hard to find someone to help? If anyone has any suggestions, please let me know.

Thank you all and stay strong.

 

[mrsbeanfarmer]

Most people are wary of people they do not know or have not been introduced to. Try your county public health department, local hospital, etc. Sign up to be a personal care attendant at a hospice or something....just thoughts.
Also, people are so busy dealing w/the illness that sometimes a volunteer is something else they may feel that have to do and/or get ready for. You might try just reaching out and helping whoever is near to you that doesn't have the disease...good way to make new friends. Volunteer to be a big brother at your local Y or do something through your church as well. Also, don't forget your PAL needs things she may not request of you..sometimes it's just time spent doing nothing..but just being there. Bless you for wanting to be a blessing to others. I could use someone to repair a few things in my home or w/my computer, but, you are too far away....Put a sign up at a local store that you would like to volunteer to help others.

Hope these suggestions help in some way. I am always thankful when someone does something for our family that is totally unexpected. My son and daughter-n-law helped prepare our house this summer by putting in air conditioners. Talk about a life-saver--we had record heat this summer.

 

[brooksea]

You state "She can no longer speak or eat and breathing is difficult." HBN, you want to leave her to go help someone else? WTH?

"If anyone has any suggestions, please let me know." We do: Go Figure Yourself!

 

[panguinjen]

Dear Heartbroken,
What a generous offer you are making! I have to say that I'd be uncomfortable pulling you away from your wife. My husband is about the same place your wife is....I can't leave him; I admire your willingness to help others in such a tangible way...
There are many here who would love a break....thank you for offering!

Jen

 

[rachelg]

As a caregiver whos PALS is a lot further down the line than your wife (my husband also bulbar onset), I would say that though your offer of helping is lovely, really make the most of the "active" time you have together. Do all you can together, trips, holidays etc. Make good memories now.

Time goes fast - too fast and further down the road you may wish that you had spent every moment enjoying time together.

 

[vzandt]

Very sweet offer...but she needs you now.

 

[HeartbrokenInNM]

Wow, you are really an amazing idiot. I guess reading isn't your strong suit. Kindly don't bother replying. You will be ignored.

 

[HeartbrokenInNM]

Never mind folks. I'll seek some other way to help those in need.

 

[skipper66]

WTH! His wife needs him 24/7 in her condition. This is the craziest post I've read so far.

 

[seaside]

And you wonder why the phone don't ring?

 

[scotslassie]

I can't work it out myself. She can no longer speak or eat and breathing is difficult.... why do you not want to spend as much time as possible with your loved one at this stage? Especially at this stage, when she is still able to interact with you. Every moment spent together is precious, yet you want to go elsewhere and help a stranger. Concentrate all your energy and time into your "amazing woman". You don't know how much time you have left to be together. Later on down the line, trust me, you will regret every moment you were apart when you didn't need to be. No wonder you have had the replies you have, it is incomprehensible.

 

[scotslassie]

.....and who are you calling an amazing idiot? Pot, kettle black.

 

[Barbie]

I can't believe this guy just called us all idiots...wow.

 

[kiwisally]

Heartbroken, it just doesn't add up in the minds of those of us in similar situations, We just can't figure why you would want to leave your wife's side when she clearly needs you, if for no other reason than emotional support right now. Most of us in similar situations wish for more time with our loved ones and find ways to have just 10 more minutes time together and are not out looking for ways to spend it apart, no matter how noble the cause. When we know that 1 + 1 = 2 and someone comes along saying 1 + 1 = 5 we cant help but wonder how you came to that result. It just doesn't add up.
You already have someone to help. Your wife. Take another look, I feel sure there is something more you could do to make her last days more enjoyable. All the best to you both.

 

[rachelg]

Did I/We just get called "idiot"?

Perhaps I am insane but if we had our time again when my husband was still able to "do many things" - we would be out partying or in "partying" :wink:- he wouldnt let me leave his side whilst we were making the most of every single second. :roll: Ohhh if only we had that time again!