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
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.
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.
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.