My husband wants to die,

[vltsra]

Dear Fay,

I understand how frightening this is for both of you. It is so hard to see our loved ones suffer and not really be able to help them. I would ask him if he might consider an antidepressant, and perhaps he can see a third party who can explain to him why the feeding tube might help, if only for medications. Perhaps the antidepressant would be a good first step and would help both of you immensely. Thinking of you Fay.

V

 

[skipper66]

I tried to delete my post. But, it wouldn't come off. Also, I was giving strictly my opinion on how I was seeing the situation. I shouldn't have been jumped all over. Some people on here are very intelligent but seem to get on a little bit of a high horse too and they know everything. Which I hate to tell them they sure as hell don't.

 

[Dave K]

Dear Fay,

Many of us have been where you are. There is no "right" thing to do except to respect his wishes and offer comfort and hope. When my wife would say she'd had enough and I was uncertain if it was really a cry for help, here is what I said and did:

First and foremost, I said to her, “No matter what you decide to do, I will always be with you and will never leave your side.”

Next, I said, “I need you to know that caring for you is not too much of a burden for me. Yes, it is very hard, but it is not too much for me to care for you, and I know you would do the same for me. I will do whatever I can to help you make the best of things.”

Finally, I said, “What you are talking about is a very individual decision that I can’t make for you. No matter what you decide, I will support you. And it’s perfectly okay with me if you change your mind, because I will always support you.”

I tried to emphasize that her life had value despite her serious disability, that she was not alone in this, that I would support whatever choice she makes, and that she should not be concerned about the effect her choice has on me or anyone else.

Also, she was much more comfortable after she got her feeding tube.

 

[FayRay]

My heart goes out to you, you are amazing and so supportive with an impossible task. Thanks for your support xo

 

[scaredwifetx]

Fay, my thoughts have been on your post today and you. I am so glad you shared and reached out.

What I also know, is that this disease takes all the rights and wrongs out of the equation. There are no rights or wrongs with our PALS choice of quality of life. Its different for everyone just like the progression.

I remember the first two weeks of our diagnosis. Steve wanted out and could not see any other choice. Hes now 17 months post diagnosis and has learned to accept the losses because he has found peace. He is actually teaching us about positivity and endurance. I would never have believed it...had you told me 17 months ago.

We know and accept that the life choice is totally up to him. He knows we are there for him and will be by his side through it all. He had told us that he feels safe in our care.

This disease is a thief in the night and is so hard on us all. I hope and pray that all our PALS find peace but I know there's a lot of different definitions. My thoughts are with you both.

 

[affected]

Fay how are you doing now?

 

[pdcraig]

Hi Fay,
I hope things are a bit calmer. I know how frightening and frustrating it can be for the both of you. We've all had that powerless feeling.
You noted that your husband had had prodisc c 2 level vertebral replacement through front of neck and that the increased trouble swallowing and speaking followed that. These are ALS symptoms, but they are also possible/known complications of the surgery. The only reason I mention it is, it may make a difference in how to treat or manage it.
My own PALS had problems swallowing and breathing after diagnosis was confirmed but it was from anxiety not ALS at that point. Getting that under control helped. After he was diagnosed, everything was an ALS symptom even when it wasn't yet.
I've also had that want to end my life talk with my PALS and did exactly as Dave K did. Knowing I would support whatever he decided, that it was his decision, that he still has a measure of control was enough for now.
Remember you are not alone, we are always here to support you when you need it.
Paul