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campdiva

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May 26, 2011
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Loved one DX
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US
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Colorado
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Colorado
My dad is in the later part of ALS. He can only move his head and eyes (although it is getting more difficult for him to hold his head up straight) and his thumb and index finger on one hand (although this is getting more difficult).

How on earth do you find resources to pay for help in the home? My mom is taking care of him 99% of the time and it is getting harder and harder every day. A nursing home isn't an option at this point, he would rather pass on then go to a nursing home.

He isn't on a vent/bi-pap (just did a sleep study a few weeks ago and things are still ok there). He does have a feeding tube.

He has Medicare but they make about $300 a month too much to qualify for Medicaid or other government programs :(

Any suggestions?

Thanks!
 
HOSPICE!

Please have your mother look into hospice. Your dad would need his physician to write an order for hospice, but that should prove to be no problem. They will come out to your parents' home and provide relief for your mother, by sending out a nurse, nurse assistant, social worker and volunteers, etc... You may want to call different hospice agencies in your area to get an idea of what they may each provide. From what I've read it varies from area to area, so some may provide needed equipment and others may not.

As for the BiPap, pALS shouldn't have to do a sleep study. Medicare will pay for one with FVC below 50% (if I remember correctly). Call your local ALSA to see if they have a BiPap in the loaner closet.

Does he have a neck brace? Quite a few people on this forum are using one.

PS - "Hospice" may sound like everyone is giving up, but the programs have changed from years ago. So, research this option for your mother's sake.
 
Yes i agree hospice is your best answer. But if all else fails try to look into a nonprofit organization such and options for independence living... i know we have one called Georgia options (each state has their own) they may help with funding and I know some with also pay the primary caregiver for their time, in this case it would be your mother. Good luck and hopefully you find something that works for you guys!

Manda
 
Manda, could you tell me how this Georgia Options works? GA does not pay caregivers that are family members to care for their loved ones.

By the way, I'm curious about how you are involved with ALS?
 
I'm not 100% sure if GA options has the program yet but last I heard they are working on it. If I am wrong in this I’m completely sorry….

I use to work for Options for independent living in wisconsin and helped them develop their caregiver program, what it was is it allowed that patient to choose who they wanted as there caregiver instead of having someone unfamiliar come into their houses. It was so the patient would be more comfortable and there was no third wheel as we would say... unless needed of course. They would work with your insurance company or with Medicare/Medicaid and hire you though there system and you would be an independent caregiver. Ga options has worked with options for independent living in forming there program since it was a first of its kind, so like i said i don't know if its fully developed yet. If its not set up or ran the same way they still could give information and suggestions.

I'm involved with ALS because my uncle suffered from it and passed away when I was in high school. Also now i'm a nurse and caregiver and have delt with patients and their families in the past who have gone through everything that comes with this disease.
 
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