ALS & caregiver financial options, any suggestions?
My wife & I were separated for 15 years, remained close friends but were never legally divorced. I was in Wyoming & she was in Colorado. December of 2016 she was diagnosed with ALS, Lou Gehrig’s disease. When I became aware I returned to Colorado to do all that I could to help her getting through this. I wasn’t aware of what ALS was but became committed to become her 24/7 caregiver. I quickly became aware of what a terrible disease ALS is and the impact it has on both of us. We are on pretty much a fixed income with no savings. She receives about $900 per month Social Security & $100 in a small retirement. Before I came back she was on Medicare and Medicaid. When I returned because we were legally still married, my SS at $1600 and my VA disability at $600 per month took our household income above the monthly $ guidelines for her to remain qualified for Medicaid. Now there are so many needs that are coming up that we are struggling to handle. She is progressing daily and our immediate need is a wheelchair ramp on our mobile home. Also bathroom modifications, power wheel chair or scooter Lift chair, and etc. I’m sure so much more that I’m not even aware of yet. This is all pretty overwhelming financially & seems most of the sources take so much time to get qualified, if at all. I am going to re-contact with Medicaid and Veterans to see if there is any help for a vet that is the caregiver. There are also some sources through our local ALS association. Just wanting to know if I’m on the right track or if anyone has suggestions that I may need to be aware of? Thank you
5 Answers
Popular Questions
Related Questions
- How do I handle sale of asset on Medicaid?
- My husband had been in a nursing home for 38 years and has been on Medicaid since then. He stands to inherit money from a sibling. Can we let it bypass us and go to our children?
- If my husband and his father just opened an account can my husband take his dad’s name off the account?
- Can Medicaid take my personal assets just because my mom added me to her bank account?
Best of luck to you both.
Our local MDA assoc. had a loaner closet that gave her access to much of the equipment at no cost. Alternatively, Medicare will pay for one wheel chair, so she should be able to get the power chair that way.
For a ramp and bathroom modifications, try a local 'habitat for humanity' group or paralyzed veterans group. They often help other citizens, especially if there aren't any vets in need of help at that moment.
Try your Goodwill/Salvation Army thrift centers for equipment/lift chairs, etc. You might also make a few calls to organizations that help those with their disease to see if they have any ideas. (I was trying to donate a hospital bed and called around to all of the groups in my area. Through that, I learned that a local church had a 'durable medical equipment' ministry. They collected and stored it and lent it out to those folks who needed it.)
Medicare will give your wife a hospital bed. Presumably, she is being seen at an ALS/MDA center. They will write a script for that.
Some houses of worship have volunteers that help those in need of errands or visiting with the affected patient while the caregiver gets his errands completed. check if neighbors can help too.
When I called local hospice agencies to see what services they offered (in anticipation of needing them) I learned that some of them considered ALS an immediate need diagnosis. My friend had a strong network so she didn't enroll in hospice until 3 months before she passed. BUT the one we chose had the biggest array of services -- including a volunteer who came to read to her and write out greeting cards for her to send to her friends.
Have a friend make the phone calls to agencies and groups. Actually, try nursing homes, assisted living facilities or continuing care communities for those lift chairs.
Keep us posted, ALS brings changing needs. their website also has helpful ideas alsdotorg. Finally, how kind of you to return to help her at this difficult time. Blessings on both of you.