Time for Hospice??

[KarstBoy]

Could use some experience based guidance.

My PALS, who is only 1 year & 2 months out from diagnosis, is beginning to have periods of difficult breathing which is making her a bit anxious. I'm wondering if it is time to call in hospice help or palliative care (?). She indicates that it is not related to mucus/saliva buildup in her lungs.

As mentioned in previous posts, she is bulbar onset in her mid 60's, is almost totally paralyzed with the exception of some weak movement in one hand, can't speak or swallow, has been tube fed for the last 4 months and neck muscles are nearing a state of complete paralysis.

 

[MJT]

I don't know the answer but I'll be thinking about you and her today.

 

[affected]

It really all depends on her wishes. If she does not want to use bipap to help her breathe, then she will need medications as the anxiety is because the breathing muscles are not coping and her body knows it.
Do you have a living will or advanced health directive to help you talk with her about her wishes?

 

[lgelb]

Most likely her BiPAP settings need adjustment. I will PM you.

 

[affected]

I couldn't remember if she is on bipap or not, my brain just doesn't hold enough detail anymore!
Bipaps need regular adjusting if the PALS is having rapid progression. Take control of being able to adjust as needed.

 

[vltsra]

Karstboy perhaps palliative care can help you as well. We have been using palliative care for more than a year now. We have a prescription for Ativan and low dose morphine that help my PALS with anxiety and breathing.

 

[Dot Nichols]

This is such a tough decision! We interviewed with Hospice last week, re: palliative care, knowing how supportive they are. On the day we would have signed on, the news came out that Canada had accepted a new ALS medication. The trials show that it seems to slow the disease progression (average 16 months) compared to Riluzole (average 2 months). The drug will be considered by the US FDA in September, so we decided to wait and see. Our Hospice made it very clear that if they accept him he could be taking no "curative" meds. Though I do not consider either of these to to be "curative", I would have to convince them, To be honest, I was very ready for the Hospice support and when his breathing becomes difficult, we will definitely ask for their help.

 

[ARCG]

We had hospice palliative care for two and a half years and it was very helpful. My husband especially liked the fact we did not have to go to the clinic anymore, it made a big difference in his quality of life.

Dot, I am interested in this medication you mentioned. I have a recently diagnosed acqauaintance who I was asked to offer support to and would like to research this for them.

 

[lgelb]

KarstBoy's wife's memorial thread is here.