My dad

[ctollar]

Today my dad, his name is Lloyd, admitted that he could no longer use his hands. We have been struggling with this since December. First the right hand now the left. The right hand took about 6-8 months to be completely unusuable. However, the left hand was completely fine until 2 weeks ago. With the onset of Hurricane Irma he lost all use of that hand. With his breathing status and bulbar onset of ALS it has been recommended on numerous occasions to call in hospice. We speak of his disease often, however, he does not want to talk "gloom and doom." How do I approach this with him when the doctors have already explained this is the most feasible option at this point? His breathing capacity was at 40% last August and I find him having air hunger almost daily now. I cannot believe the rate of progression in just a short time, even though I was told this may be the case from his pulmonary doctor as well as neurologist. Any advice would be greatly appreciated. I know that no one can accurately predict how this disease progresses but I would like feedback from those who have been where I am.

 

[lgelb]

He should not have air hunger w/ an FVC of 40% if his BiPAP is properly adjusted. Let me know if you want help with settings.

You will find numerous threads on hospice here -- use the search box up top. If he doesn't want to consider it at this point (it is just whatever services an agency chooses to provide, and he needs to have all the equipment he needs reimbursed before starting it, to avoid having to stop/start hospice due to Medicare rules), that is certainly his right. Not every PALS goes on it at all, and agencies vary a fair bit in quality and quantity of services provided. If it helps, it's a good thing, but it is never required.

 

[soonerwife]

Not sure about your dad's situation. Hospice has been suggested to us as well. I am interviewing two this weekend. My PALS doesn't want hospice yet but I am hoping it is going to give me additional help?!

Hospice doesn't necessarily mean the end. It's more about quality of life. One of the hospices I interviewed this weekend said they have had people of hospice for 2 years. Some even get better although we all know what ALS means.

Hope this helps?!