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First a bit of background:
My father died of complications of ALS ten years ago
My mother died of complications of a stroke five years ago.
My wife died as a result of mixed dementia a year ago.
So I am familiar with caregiving.



Last week I was invited to a party for my cousin who is seven years younger than me. She has had ALS for about two years and is on continuous assisted breathing, power chair, blanket, etc.



I have seen this story before, but I was the caregiver. I knew how things would end, and all I could do was encourage to the bitter end.



What should I have said to my cousin during my turn to visit? All I knew to say was "I love you."
What would you have done?
Thanks

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Thank you all for your kind suggestions.
FYI, no I am not able to help with caregiving. She came across the country for this gathering. She is headed back to the east coast in a few days.

My concern was that I felt so hollow inside. I wanted to do something, anything, and yet I know there is nothing that can be done other than, as others have suggested, help with caregiving.

Once again, this forum rocks. Thank you all for your heartfelt concern.
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The same exact thing you did ! At this point I’m sure she knows what’s in her future and her prognosis. One of the most important things if not the most important thing when we are at the end of our life is to know that we are loved and cared for. Your answer was perfect you are a wonderful loving cousin God bless you💜
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There is nothing to say unless you take your ques from your cousin. If she wishes to talk about things, then be open to that. Hear her truth and her wishes. Don't negate her feelings by denying her truth. I would have said, yes, that I loved her, that I was so sorry she is going through all this. That I hoped for her comfort. I would ask her if there is anything you might do for her or anything she might want to discuss. Dying people vary as much as anyone else in whether or not they are in denial or accepting, and whether that changes daily or not.
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I'm not sure what you're asking here? Aside from telling your cousin that you love her, what sort of other things would you/should you have said to her? Knowing what you know about the dreadful end associated with ALS, are you thinking you should have suggested she end her life on her own terms vs. waiting to die by ALS causes? She obviously wants to live as evidenced by her choosing to be on a continuous assisted breathing device, right?

You can offer encouragement to a person dying with ALS, knowing full well that nothing will or can get better as the patient approaches death. My friend's husband died of ALS and it was so awful, that she's been unable to move on since he passed. And that was in 2011. He was unable to eat any food and she lost a lot of weight herself b/c he wasn't able to bear watching her eat while he couldn't. The whole scenario was shocking and horrible; in hindsight, I wonder what Joan would have to say about how her DH's life 'should have' ended vs. how it DID end, which was in the worst possible way: he starved to death.

If it were me with ALS, I would end my own life by overdosing pain medication rather than waiting to die at the hands of the disease. That's not to say I would've said such a thing to my cousin during a party, however.

What you say or don't say to the woman is a private matter; only you can know what feels right in your heart. Saying I love you is a heartfelt emotion, and unless she is asking you for advice as someone who's witnessed his father die of ALS, then you likely did the best thing by keeping it brief. Should she want advice from you, then that's another story.

It's a sad situation, as is all the loss you've experienced in your family over the past decade. Sending you a hug and my condolences for all of your grief.
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Nothing wrong with what you did, expressing your love is always kind. Can you go back and offer help to the caregivers? And I always told my mom’s visitors that she appreciated them simply holding her hand
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If you are up to it you can..
Offer to help, give caregivers she has a break.
If you have had ongoing contact with her continue the contact and keep it as "normal" as possible. Continue allowing her to do what she can for as long as she can. But help where and when needed.
If you do not have regular ongoing contact and this is a relative you see only on "family occasions" and you do not feel like you can emotionally get "more involved" then saying what you said is appropriate.

When you come down to it we are all dying..the difference is most of us do not have a visual of the way and how our end will come. So really greet each family member as if it might be the last time you see them. Ya just never know.
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Wow, so hard. I would think your loving words and kind and attentive presence probably said it all.
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