What do you say when you can't say "It's going to be okay,"?

[Avocado]

Aw Jrzygrl.... Thank you for that. You are not alone either. It's no good and no fair and no one deserves it. And yet here we are. I hope you have something you can take comfort in. Hang in there!
Hugs

 

[Avocado]

Hi Sue,

Thanks so much. I appreciate your welcome. I feel so fortunate to have found this virtual place, and so impressed by how candid and honest and helpful everyone here is. I don't know if it's that friends drift away, or that I am drifting away from them. So many of course just don't really understand the whole picture- the emotion and the overwhelm and the busy-ness and the exhaustion... but how could they? I have a couple of friends to whom this has probably brought me closer, but a lot more who seem further away now. It's mostly me, I know. Sometimes just answering a text message seems so hard and literally might take me days. If people ring it often goes to voicemail. I'm just so often busy, or I don't feel like having to explain how hard it would be to get out for a coffee , much as I would like to. And yet it gets a little lonely sometimes too. Thanks for taking me in ��

Oh, I do hope the eye gaze thing comes though, and quickly. I'm happy for you and your PALS that it's been of benefit, and great to hear your pals uses it for Netflix and the like. I think regaining control of the home theatre would be a really good thing for mine, too.

Hugs back.

 

[Atsugi]

Hey, Avocado. Just between you and me...

I might have a way to get some better info on your PALS longevity. This is how I did it, and I'm glad I did.

Whenever we would visit a doctor, the doc would give the usual party line: 2-5 years. So, as we were beginning to leave the office at the end of the appointment, I would send my PALS ahead, and quickly "remember something" that I forgot in the doctor's office. Then privately, I would tell the doc: "I need to make plans. I am going to buy a house, or perhaps make major modifications for my PALS. So I really need to know if I should make such a big investment for her comfort." The doc put his head down, lowered his voice and said, "No. Don't do that. She won't last the rest of this year."

I'm really, really glad I got that honest advice.

 

[Narrowminded]

Tara like Mike, i too got some honest answers from Brian’s Dr when away from my PALS. The visit he spoke to Brian about venting and if he was interested, he told Brian to take his time. He pulled me aside after and said if he’s going to vent, he needs to do it quick as he could go at any time. That’s 7.5 years ago since he vented. Now i struggle with him telling me what his wishes are if he should become locked in.

All that to say, you could contact the Dr privately and see if you get a better answer.

Hugs,

Sue

 

[Avocado]

Mike and Sue, thank you so much for your comments and suggestions! My PALS next clinic visit is in about four weeks, so hopefully I can find a way to get a few moments alone with his doctor. It's a tough one though, isn't it? As much as I think it will be easier to know....I also kind of don't want to know. It's a no win situation, like everything else about this horrible disease.
In the lead up to Christmas last year, he told me he thought it would be his last Christmas. I tend to think if that is what he believes, there is a fair likelihood that he will be right. I think he has had enough and is giving up. I feel like he has progressed fairly significantly even since then.

 

[lgelb]

If your guy wants to know more about the future, Tara, he has the right to know as much as you. If you keep asking "if you were us" questions together at clinic, and reassuring staff that you prefer specificity, you will get an answer. It can be easier to say, is it reasonable to expect the current level of function...rather than asking about survival time, which some clinicians have antipathy toward.

That said, often P/CALS can answer the question themselves, at root. Progression is faster at the beginning and end, generally.

The five prognostic keys I see most often are nutrition, hydration, respiration, social interaction and ability to transfer, coupled, unsurprisingly, with positive expectations -- something to look forward to.

Best,
Laurie