Can I have some Cheese with my Whine?

[rcharlton]

Oh Barbie!

This is hardly a whine. You need help. You are amazing for how you have managed so far.

Sorry but your husband will just have to suck it up about being helped by other people. I resisted for a while too but it is really not that bad.

Problem is - how are you going to get the help you need?

Do you have access to a sociial worker?

This might be a bit of a stretch - but there are a number of people looking for an opportunity to volunteer - like nursing students. You might contact your local college and talk to them about it.

Take care

 

[schavez500]

What upsets me the most is that there are many people on medicaid with providers... Our tax dollars pay for the providers and some get 8 - 12 hours of hel and don't really need it. Here it sounds like you all have worked you entire life, paid taxes and you get no help from the government. Time for a change.

 

[notme]

I'm rather surprised the ALSA isn't helping you more When I contacted Courtney, she offered to come to the house immediately, and has offered again several times. (I'm in Orlando, too)

Can he apply for SSI or SSDI? There simply has to be some kind of help out there for you all. It's sad that you're not getting more support Can he apply for Medicaid? It sounds like your finances are in a place where aid should be available? If he has any insurance, won't they help with some in-home care?

I can understand he'd not want strangers--but he has to understand that you need help, too. I'm in Orlando, as I said--is there anything I can do to help?

 

[brooksea]

That's just it! Medicare won't provide home health, unless you have a specific need, such as wound care. Believe it or not, ALS isn't a specific need. So you have to have your own personal caregiver, who is most often a spouse, until it's time for hospice.

Sad, but true.