hopingforthebest
Distinguished member
- Joined
- Feb 20, 2007
- Messages
- 355
- Diagnosis
- 02/2007
- Country
- US
- State
- NJ
- City
- Mays Landing
My husbands last ALS clinic visit, his doctor suggested getting Hospice started.
His Vital Capacity number was at 24%. He is using the bipap machine when home more and of course all night for sleeping.
The doctor said Hospice is very helpful and not just for critical times but some patients are on Hospice even while still working. It can be helpful for caregiver.
My question is, anyone on Hospice for a long time period and if so, how long? Also,
24% Vital Capacity number seems to be the indicator of future breathing problems to come or can this improve?
He is also looking into disability, but unfortunately county he is employed with, does not offer to employees so it could take a good 6 months for federal.
So many issues to deal with that seem to cut in to quality time together.
Since his ALS was all upper body, I never ever thought about the diaphram being the
serious issue and that it what ALS is really all about. The use of limbs is not what takes the ALS patient.
Pray for a cure soon for all!
Tonight I feel so very sad.
His Vital Capacity number was at 24%. He is using the bipap machine when home more and of course all night for sleeping.
The doctor said Hospice is very helpful and not just for critical times but some patients are on Hospice even while still working. It can be helpful for caregiver.
My question is, anyone on Hospice for a long time period and if so, how long? Also,
24% Vital Capacity number seems to be the indicator of future breathing problems to come or can this improve?
He is also looking into disability, but unfortunately county he is employed with, does not offer to employees so it could take a good 6 months for federal.
So many issues to deal with that seem to cut in to quality time together.
Since his ALS was all upper body, I never ever thought about the diaphram being the
serious issue and that it what ALS is really all about. The use of limbs is not what takes the ALS patient.
Pray for a cure soon for all!
Tonight I feel so very sad.