My father has ALS (Lou Gehrig's disease). I am his full time care taker, he lives in my home as of 7 months now this year. He does have Medical Insurance Medicare through AZ state. He is 56 years old. I'm concerned about what benefits we maybe missing out on. i.e. nursing/financial
Thanks!
Otherwise (in my experience) it is all private pay.
If you aren't already hooked into the MDA / ALS associations near you, do so immediately. The MDA Assoc provides transportation to MDA centers for quarterly visits with the doctor. (No charge). The ALS center near me had a 'loaner closet' where patients could borrow equipment that was needed. I watched my friend go through so many assistive devices in a short period of time and that made me understand the benefit of a loaner closet rather quickly.
I assume your Dad has filed for disability income through social security. Finally, some financial help comes in the form of volunteers or financial help for other than caregiving. Consider all of the friends/neighbors/co-workers/members of a church congregations, etc that your family knows. Be ready to give a suggestion (or two) when someone says 'I wish I could help'. You can respond: Actually it would be a huge help if you could come and spend an hour or two with Dad. That would give me time to do --- grocery shopping, a visit to my own doctor/dentist, etc. You might qualify to get some staples/non-perishables from a local food pantry. Then you use the money you saved by not buying those items to get more care for your Dad. If you can attend an ALS support group in your community, others may have some ideas that worked for them. Let us know if any of this helps. And I am sure others might be able to help too.
-If your dad is going to a special clinic there should be a social worker there. Bug him or her to give you a list of everything you can apply for...aide grants, local/county/state/fed assistance, etc. They'll also be able to provide you with phone numbers for the local loan closets that geewhiz suggested. Those are a life saver when it comes to equipment.
-Definitely get in contact with your local ALS chapter asap (again, like geewhiz said) and make use of the forum that cwillie suggested. I learned TONS from that forum and the chapter was a lifesaver more than once. Many of them offer grants to defray costs.
-https://des.az.gov/services/aging-and-adult/aging-and-disability-services/home-and-community-based-services
That's the link for AZ's Home & Community based services, which has a link to find a regional office and more importantly, CAREGIVER RESOURCES. Hook up with your local office to see what they can offer you based on your location/income/dad's diagnosis. For example, here in CT we have a Home Care program where based on income you pay a small portion (roughly 10-20%) of the cost of in-home caregivers for up to 30 hours a week.
-If it's not already in place, ask your dad's doctor for Medicaid covered home-care visits. It has to be re certified every 8 weeks but it will cover 1 RN visit, a couple short CNA visits, PT/OT and RT if he needs it. If nothing else it will give you some respite until you can get some other stuff.
I just rejoined this site so I don't know if there's PMing...if there is feel free to message me if you have any other questions, if not go ahead and ask on here. ALS sucks.
Two of the best things I found with hospice (for my dad, and now my grandmother...and of course this may be different depending who you go with if you choose to go this route now or in the future but I can't imagine too much different): 1, when you call them they come almost right away to get stuff set up and while of course you and your dad have to do some work with paperwork and such, it's not a challenge or a burden. 2, they're 24 hours. If something happens in the middle of the night and you need help, you call. Someone will be happy to come and help you. It doesn't even have to be an emergency, sometimes you're just too tired to do something on your own and you need an extra set of hands, or at that moment its just a little too much to handle. They've got your back.