The question that probably doesn't have an answer

[starente15]

How do you know when it's time to take a leave of absence from work to be there?

Since my return from visiting my parents two weeks ago I've gotten updates that my father's breathing is getting worse, he's using the bipap a lot more, and has stopped going out.

Hospice started on Tuesday and provided lorazepam and morphine, both of which he said he didn't want (he's afraid of becoming a zombie). Somehow my mother got him to take it that evening and he asked for it last night.

From what I know and have read, I know we're entering the end stage. His blood pressure is going up (the nurse said he's getting tired) and his voice is much weaker. My mother said today she's worried he's giving up because he sits with his head down and doesn't watch TV anymore either.

As usual, I'm giving myself a panic attack with the thoughts running through my head. I suspect I should just start planning to go within the next week or so.

 

[Nikki J]

You are right you can't tell but listen to your instinct. Do you have and are you planning to take your full allowance of FMLA? Did you use any yet? Have you done the paperwork yet?
But regardless if your heart says go do it

 

[Atsugi]

That's a very tough call. Hopefully the nurse on the scene is familiar with end stage patient care, and maybe can tell you when she thinks the end is near. Not an exact science by any means. Good luck.

 

[affected]

Like Nikki I would say go with your gut instinct as no one can tell you how long.

If he aspirates and develops pneumonia he could be gone tonight. If he uses his bipap and meds he could have months yet. Or anything in between.

His head hanging may be more muscle wastage than giving up of course.

If I were you, I would start talking to work about what leave you can take and make a date to start it that feels right in your heart. You won't regret spending a bit longer with him if he has longer than you think that's for sure!

 

[starente15]

Thanks everyone! I always appreciate your insight and support.

 

[lgelb]

One of the determinants of how long he has is how ready he is to go. For his comfort, I would certainly try to make sure there is enough support in his chair(s) and bed for his neck, and that he's tilted to the best position in the wheelchair, which often requires frequent adjustment.

If your mom is "worried" that he is giving up, she may be sending signals that she is not ready to let him go, which can complicate things. I would try to remind your mom that at this stage, it's about what your dad feels and wants, and whether in person or by phone, convey to your dad that you love him and are at peace (even if you're not). However hard it is for you and your mom, you will rest easier in the years ahead knowing that you gave your dad what he needs for physical and mental comfort.

Best,
Laurie

 

[cheerleader]

Laurie, you are always so wise. Just returned from a trip to my daughter's- and she reminded me that my hubby had probably held on long after he wanted to be released because of me- and the fact I wasn't ready to let him go. In retrospect, wish I had told him it was okay sooner but.......yes, it should always be about the PALS wishes.
Good luck, Star. You have certainly been a loving, caring and supportive child through all this. Please have no regrets and enjoy the now with your dad. Hugs. Donna