What do you say to your PALS when they say "I've had enough"?

[Dave K]

If you’re like me, your PALS has said this to you more than once. Shortly after her diagnosis, my PALS would sometimes say “take me to Oregon” or simply “I don’t want to live that way.” Later, there were occasions where she would say, in effect, “I want to make it this far and no farther.” Once she even started to discuss some more specific plans to hasten the end, but then had a change of heart. Each time, I have had to ask myself, “What should I say? What should I NOT say?” I feel pretty good about the choices I made, but I have never discussed this before and am interested in learning what others have done in these scenarios.

Here is what I have said and done, and also the things I have avoided saying:

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

Next, I say, “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 say, “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.”

And here are things that I NEVER say and prohibit others from saying to my PALS:

“I would completely understand if you wanted to commit suicide.” (Well-meaning, but very insulting to a disabled person.)

“Time to hang it up. A life like that isn’t worth living.” (The ultimate attack on a disabled person’s dignity.)

“You have the worst disease in the world.” (Very discouraging.)

“Caring for you is hurting me physically, emotionally, and financially.” (Insensitive and coercive.)

“Look at the bright side. Things could be worse.” (Insensitive and dismissive.)

“I would be devastated if you killed yourself? How could you think of hurting me like that?” (Insensitive and selfish.)

“Suicide is immoral.” (Alienating.)

In short, I try to emphasize that her life has value despite her serious disability, that she is not alone in this, that I will support whatever choice she makes, and that she should not be concerned about the effect her choice has on me or anyone else.

And I am very grateful that she is still with me and allows me to care for her. Her smile brightens up the darkest room.

 

[scaredwifetx]

I can't find words today but want you to know how special type post is. You are a wonderful Husband and i couldn't think of anything better to say.

 

[texastc]

Dave Your descriptions sound so very similar to mine. I, like you, told Tracy that I would willingly continue this care indefinitely...yes, it was hard but not impossible. When the day came that she had decided she was done...it broke my heart. But I understood, probably better than anyone except her, how hard it was and how tired she was. So tired.

But she was able to make her own decision...told the Dr.'s to make her comfortable... Hardest place I've ever been.

Easy for CALS to overlook how tired they are from the fight...

tc

 

[affected]

When Chris said to me - I will not go back into hospital for any reason because I am not going to die in there, I totally agreed with him. We both knew he was nearing the end. It had nothing to do with 'giving up', or even 'having enough'. This monster always wins and we both knew, despite his FTD, that our aim was for him to pass peacefully at home, not terrified in a busy hospital with staff who were clueless.

He passed away very peacefully at home with me 2 weeks later.

I couldn't agree more that our job as CALS is to stand behind whatever choices our PALS make.

 

[lgelb]

Dave, it is important to note that while some PALS may advance toward periodically and then retreat from the end of life, others only say it when they really mean it. If you know your PALS, you know the difference and are prepared to confirm/act accordingly.

As for all the offensive straw men you set up, I doubt they apply to really anyone here and to the extent they apply to anyone's visitors, I doubt most CALS here would allow any repetition. But it is always worth reminding ourselves that this is our PALS' last journey, most of all.

 

[affected]

I actually found that affirming with Chris that he had the worst disease in the world was a positive for him. It affirmed that what he was going through was truly the effing pits.

 

[Dave K]

If you know your PALS, you know the difference.

I honestly can't tell sometimes. Not long ago she seemed so serious and sufficiently detailed in her planning that she asked me to summon some friends and relatives to say goodbye, but when they arrived, she said she had no plans. It's like she's a feather on a fence post and the slightest breeze will affect which way she turns, which is why I try to be so very careful about what I say to her.

straw men you set up.

I don't understand what you mean by "straw men." These are all things I have heard people say and are not hypothetical or imagined.

 

[Atsugi]

Dave, I think it can't be done any better than what you're doing. You've got the best response in the world already.

 

[Narrowminded]

Dave I agree with everyone else here. What you are saying is the best that can be said.

Hugs,

Sue