I have gone to two meetings now with an elder care attorney. Today I called and made an appointment to meet with a disability attorney. These are smart meetings for me to be attending. The truth is that if my husband would die, my life gets complicated very quickly. I need a caregiver for all aspects of my life and right now my two main caregivers are my husband and my mother-in-law. I need a caregiver to help me be clean, dressed, and presentable in the power chair so that I can effectively parent my kids. Now more than ever, parenting is my priority. Take away the caregiver and I could be a pee soaked helpless lump.
So. To the attorneys we go. First I will need to apply for disability, then apply for a Medicaid waiver. A Medicaid waiver would pay for many hours a week of in-home caregiving for me. My mother-in-law, a retired RN, has been helping me for two years. She is a wonderful and kind person. It's a lot though, to have so much one-on-one time with my mother-in-law. Boundaries have become blurry.
Applying for disability and a Medicaid waiver is so much work. A lot of paper gathering and document producing; basically jumping through hoops. It's a big chore for anybody, but the majority of people are older and not in the prime of business ownership and raising children.
Also, all of our assets now have to be in only my husband's name. Everything. I know that it is only on paper, but it does feel a bit like I'm being stripped of a lot of things that I have spent the past 20 years working for. We have always been equals, joint bank accounts, joint ownership of everything. This is a tough hoop to jump through.
I have already learned a lot through this process. I'm confident that at the end of it all, it will have been worth it for the security and peace of mind that it will offer. But it also goes on my list of one more crappy thing multiple sclerosis has brought to my life.
