Not sure how much more I can take

[MaxEidswick]

>I will also take this opportunity to salute and thank the wives, husbands, sons, daughters, mothers, fathers and friends who, like Gil, bear the weight of 24-hour days, 7-day weeks and the journey that ends but is never over

well said

 

[Jeanau]

A number of us care(d) for PALS who could not be left alone at all, often for years. Today was the summer solstice and I hope you found some light, if only in your fingertips when you touched your loved one.

Since there is still an hour left on Father's Day in this time zone, I will also take this opportunity to salute and thank the wives, husbands, sons, daughters, mothers, fathers and friends who, like Gil, bear the weight of 24-hour days, 7-day weeks and the journey that ends but is never over.

--Laurie

Beautifully stated Laurie...thank you!

 

[Loverly]

What about hospice?

 

[Janie H]

Hospice is coming to see me tomorrow, I hope it works out. Prays for you and your parents.

Janie

 

[GilWest]

What about hospice?

The ventilator precludes ALS patients from hospice care. Actually the hospices in my area will not even take bipap anymore. They will take O2 patients only. Do, however, check and see if the hospice company has a palliative care division. No company will provide 24-hour care for a vent patient without paying $35/hr or something like that.

 

[Loverly]

The ventilator precludes ALS patients from hospice care. Actually the hospices in my area will not even take bipap anymore. They will take O2 patients only. Do, however, check and see if the hospice company has a palliative care division. No company will provide 24-hour care for a vent patient without paying $35/hr or something like that.

Really? This seems extreme. Talk about adding insult to injury.

 

[Nikki J]

Mattb said his dad had hospice and they managed his terminal wean. Whether they only came on board to do this is not clear but he did not mention getting hospice help for this as an issue. There was someone else who spoke of hospice and vent too. Forget his name. And Santa Joe had hospice I am almost positive and did not do so for the purposes of handling a wean. It may be location specific

 

[GilWest]

Mattb said his dad had hospice and they managed his terminal wean. Whether they only came on board to do this is not clear but he did not mention getting hospice help for this as an issue. There was someone else who spoke of hospice and vent too. Forget his name. And Santa Joe had hospice I am almost positive and did not do so for the purposes of handling a wean. It may be location specific

I think that the bipap exclusion is fairly new. They would still take bipap a few years ago, but the rules changed sometime last year to my understanding. Hospice's mission is comfort for the infimed and the family, not the artificial extension of life. However, the staffing agency I called to get a ballpark of how much a nurse would cost is a true figure. BUT...there are many other caregivers who can be hired and trained that charge MUCH, MUCH less...

 

[Nikki J]

2 people I referenced were this year. All were vented. Who is giving you your information? I have heard of bipap being refused to be initiated during hospice but not having to be withdrawn on entry into hospice. I can find no discussion of this online. in general hospices have a fair amount of latitude in what they will cover. They get a certain amount to care for a diagnosis. They may especially if for profit have an incentive not to pay for certain things. If there is indeed a rule to exclude bipap patients from hospice this is a matter for advocacy. There are certainly people who if their bipap were withdrawn they would die extremely quickly

 

[Grumpy'sWife]

Nikki, we went through 4 hospice agencies before we found one that would take Grumpy, not because of the bipap but because of the feeding tube. They all made it very clear that they consider tube feeding beyond comfort care. Finally the hospice we have is associated with our local hospital. They were not on the list given to us by our VA social worker, in fact I didn't know they existed until someone in our local caregiver's group (not an ALS just general caregiver's) mentioned them to me. They have never dealt with an ALS patient but they have went out of there way to make sure we are comfortable. They even had our RT come into the office and meet with all the nurses to explain the Trilogy since none of them had ever seen one. Bipap was never mentioned but the feeding tube became a huge issue for us.
Just our experience,
Kaye

 

[Janie H]

Hospice had no problem with my trilogy vent,

I made too much for Medicaid, I got on something called extra help, a home health care facility and it made the difference
Upped the maximum amount that I could make, a caseworker comes every three months and calls once a month to see if I need anything, has saved me a lot of money.
Janie
Janie

 

[Barbie]

I can't believe that hospice would exclude grumpy because of a peg--that is not life extending unless the alternative is starvation. crazy.

 

[Mojoloco]

Becca was able to get into hospice because she has declined a peg tube and trach. She has a bi pap but doesn't use it because the only thing that she has left is speech and the bipap limits that and makes her feel claustrophobic. I don't know if not using it precludes her from hospice. She accepted a home health aide for help for me today so that is a big step for her. She has been laying on her back since November except for occasional excursions out and is very stiff. I will have to train the aide in the many ways that she can't be moved. The aide seems wonderful and they hit it off right away

 

[MaxEidswick]

> The aide seems wonderful and they hit it off right away

yea!

 

[lgelb]

Mojo, just wanted to remind you about the cloth mask available for BiPAP -- mouth is completely clear for speech and it's not as tight/hot as the silicone variety. It's called Sleepweaver.