How do you know when the end is near?

[Maryl08]

My mom has been declining quickly in the last few months. Recently she's been unable to walk from her bedroom to the bathroom across the hall so we transport her in a chair. She's already started hospice which has been a great help. I have an awful feeling that the end is near. She's been getting much weaker and her body is not digesting her tube feeding formula like it was in the beginning. I hear her coughing in bed sometimes and am so afraid she will get pneumonia. She has bulbar onset and I've read that it normally progresses to the lungs much quicker. She refuses to use her bipap but says she hasn't had any shortness of breath.. Are there any signs that the end is near?

 

[lgelb]

Mary, in the circumstances you describe, your question is not easy to answer. As you know, she would probably cough less and expend less energy with BiPAP, whether she feels short of breath or not. But you haven't described anything that says more definitively that the end is near.

We always advise you to have said and done today what you would want to have done if the end came tomorrow. A hospice nurse [did you go with Evergreen or Providence?] may have a better feel for her day-to-day progression.

Best,
Laurie

 

[Maryl08]

Hi Laurie! We went with Providence because they would cover the riluzole and evergreen wouldn't.

 

[affected]

We all wish there was an easy to mark answer to this.

Some PALS do a steady decline and it becomes obvious that they enter an 'actively dying' stage. My Chris was like this, I knew in his last 4 days that his body was shutting down and we were at the end.

The first signal for me was that he actually asked for morphine and to go back to bed after his shower. I wasn't certain then, but as that day went along I 'knew'.

Some PALS however just go suddenly without any real obvious decline.

If there were to be signs it is usually things like, real depression in eating and drinking, lowered urine output with dark urine, blue extremities, total lethargy - sleeping or barely responsive most of the time, very shallow breathing.

I like what Laurie said - just live in the day, it may be the last, it may not, so just make the most of what you have.