from fb ....

[MaxEidswick]

Jacqui Devine‎ALS We are in it together
20 hrs ·
Just want to write a note to those with ALS...
As a daughter of someone who had ALS, and as someone who helped reposition my dad, take him to the washroom, run or stop his feeding tube, rub his back, help shave him, cut his fingernails and toenails...
You are NOT a burden
My dad was always afraid of being a burden....all those things i did for him i wouldnt have done it any differently and for all of you dependent on your loved ones....PLEASE do not fear being a burden...you arent...you are loved and your loved ones are HONORED to help you in ANY way

 

[gooseberry]

Ditto that

 

[Atsugi]

I was thinking similar thoughts recently and should have posted it.

PALS are not a burden to those of us who love them. Sure, being a CALS is a difficult job, but never did I resent it. I was happy to take up the challenge, and proud to know I did well when it was all over.

 

[anderkling]

Thanks for sharing. I appreciate your thoughts on this topic. I do have those feelings of being a burden, especially now that I'm completely confined to a weelchair, and need help in other ways. Having to be dependent on others, particularly my CALS, is a challenge because up until months ago I was fiercely independent! And even though my CALS tells me I'm not a burden at all, it's only natural to have those feelings. I'm sure all other PALS understand this. We know we are a burden, but a burden our CALS are happy to bear, if we are fortunate enough to have loving and devoted CALS. My heart goes out to those who do not have close loved ones who take up the burden of caregiving. They have it the hardest of all, and need our prayers most of all. Love and appreciation to all our CALS who give of themselves so generously!
- Charlene

 

[affected]

I think it's understandable that PALS feel they are a burden, I'm sure I would battle those feelings.

As CALS no matter how exhausted we get, the person is never a burden. I know that no matter what heartbreak it was for me, if I had my time over I'd do it again in a snap!

 

[Mtzu]

Max,

Thanks for sharing this. Being a burden is truly my greatest fear on this journey. A fear that takes me to my darkest place. What you've shared helps in a huge way.

Michael

 

[KatB]

This is soooo helpful! I am breathing easier!
Kat

 

[tripete]

I appreciate all that is said here and the devotion of those who take care of us. That said, I am a burden. I was once a companion in a very active life style. I was suppose to be until we where both old. Now because of this b1tch of a disease every decision is based on how long I can move or breath.

About 4 years ago my wife and I where sitting in a restaurant for breakfast. There was a VERY old couple a few tables away that when they came in it was very obvious that the husband was in pain with every movement. The waitress brought them only one menu and the wife was going to get up and go get another for herself. Her husband would have nothing to due with that. He got up, again in obvious pain, and went and got her the menu. This struck me as how much he loved her that he would take care of her even as it caused him pain, even in the little things.

I had always planned on being this way. I was to take care of her not hurt her emotionally as she watches me "dissolve" in front of her. Am I a burden YES. Will she do it because she loves me like all of you do, YES. But, it should not have to be this way.

In my first post here I said ALS Sucks, each day I see how badly it does more and more.

 

[chally]

i read this post as my wife(cals) is making a ensure cocktail for me. i believe her when she says it's her pleasure to help me in any way she can. i don't need guilt over this just love her as i can as she loves me. i think for us it's really that simple. got to let go and accept. S%$T happens! one love chally

 

[tripete]

No Guilt, just sad reality.

 

[Green Queen]

A few times I have given Wayne 'permission' to leave. At the moment, I have no idea where this is all leading, so for him and the kids to go through all this because of me just doesn't seem fair. He won't ever leave me, I knew that when I suggested it, and as for my beautiful children...I (already am) will be very proud of the caring, well adjusted adults they will become.
I don't feel a burden quite yet, but as I am not terminal, I feel I will be a burden and continue to be one for a very long time...
God bless, Janelle x

 

[MaxEidswick]

>Being a burden is truly my greatest fear on this journey.

me 2

 

[Jeanau]

Me 3!

I shared this post with my husband last night. He told me that he wishes he was the one who had ALS. I was touched by his generosity of spirit, until he told me that he wished it was him because he couldn't cook, and he'll miss my cooking. We both laughed, but it was good we shared our concerns about being a burden with each other. Again...thanks for sharing this!

 

[maryhahnward]

I was thinking similar thoughts recently and should have posted it.

PALS are not a burden to those of us who love them. Sure, being a CALS is a difficult job, but never did I resent it. I was happy to take up the challenge, and proud to know I did well when it was all over.

I'm with you Mike. I hope at the end, in the end, I've given him comfort, kindness, and enduring love. He's never been a burden, never will be.

 

[affected]

I was always very careful to separate my husband Chris from the disease. This was one of the keys for me.

ALS SUCKS. The disease causes both PALS and CALS incredible heartache as we lose all our dreams. But the PERSON is not a burden. There is a burden of care for each CALS, yes that's true. There is a burden of pain, suffering and loss for the PALS that's true too.

Not one PALS here chose to have this disease, it happened, it's part of life so unfortunately.

Please PALS separate yourselves from the disease, you the person are NOT a burden, ALS is a burden and both PALS and CALS bear it, and if they can do that together then they remember what is most important. Life isn't fair IIWII but love is the important bit.