In December 2007, I finally realized how my mother's health was affected by my dad’s alzheimer’s. Since my parents have limited income, in January 2008 we began the process of applying for Medicaid in Arizona (ALTCCS). We hired an eldercare attorney ($6500 flat fee) to help us. The fee was worth it – they know the laws and we were able to protect enough assets for my mom to live on.

But the application process is tough. Every month my mother had to turn in a copy of every statement. The lawyers office gave us a new list of things to do every month: cash in insurance policies, take my dad’s name off joint accounts, add my name, open new accounts, close old accounts, transfer some money here and some money there. And every month we made copies of everything that had been done, and every account, and every bill, and sent it all to the lawyers for the government.

And then, too, I learned that my mother's "fun in life" consisted of watching QVC on TV & ordering any & everything. We had constant quarrels where she complained that she never would have applied for Medicaid if she'd known that people would tell her howto spend HER money. (The gov't wanted to know what every check she wrote was for...) But deep down she realized that we had to do this. Dad was so healthy except for the Alzheimer's!

After 8 months we found out that Dad had been approved. The last step was to “spend down” some of the remaining money. Mother bought a new car, and then transferred some money to me. I watched them “spend down” enough money that Dad would be fully eligible for a Medicaid paid for Alzheimer’s care unit on November 1, 2008. That’s when I halted the money spend down process. We’d take our chances with timing.

In early January 2009, my mother (age 81) told me she wished she would die so she could get relief from caring from my dad (age 85). So I called the Medicaid case officer and told him it was time to move Dad into a facility – what were the next steps? And would he send me a list of local facilities so I could visit them?

I was dismayed to learn that the potential facilities were all very far from my home and would require lots of freeway driving. I visited them and reluctantly chose a very nice place – 35 miles away. But I decided to call around locally just in case Dad’s case manager had missed some. He had! I learned that nearly all nursing care / extended care facilities have what they call a “memory care” wing for people with dementia and Alzheimer’s and other memory problems. There were 10 facilities within 8 miles of my home!

I visited them all, and I signed Dad up at a couple of places. But we lucked out with my first choice: only 6 miles from my home, and Dad was 1st on the list. There was no telling how long he would wait. It turned out to be only 5 weeks when we were notified that Dad’s name had come up on the list. So we started the next phase – getting Dad ready.

We labeled all of Dad’s clothing. I bought Dad a new recliner – a small wall-away chair with sturdy arms so he could get out of it easier. We didn’t tell Dad right away because we never know what he will remember – what detail he will obsess over. I got his room ready. I created photo montages of family members, and of his time in the Navy. We moved his chair and small pieces of furniture. When the day came, I took him to his room and explained this would be his new home. He was angry and didn’t understand. Why was he there? Where was Mother? Why did she get to stay in the house but he didn’t?

The staff told us to stay away and let him adjust. We stayed away for 2 weeks, and then began our visits. Poor Dad had felt abandoned. He was still angry and wanted to go home.

We agreed not to bring in a TV and DVD player for 4 weeks, so he would have a chance to get used to the place and perhaps join in the activities. He never joined in – his life at home had been watching TV & movies and he wouldn’t leave his room. I told the staff that it was his decision, and his life, and we should respect his choices.

Finally I ordered cable TV, and we brought in a DVD player and hooked everything up. I learned early on that leaving his DVDs in his room was a mistake; people in the wing “go shopping” and your belongings disappear. We lost 3 movies and two thermal coffee mugs that way. So I took them all home and at each visit, I bring in some for him to choose from. So we sit together and watch a movie or an old TV show. (Columbo is the current favorite.)

My mom has turned my dad’s care completely over to me. I’m the one who gets called when there is something wrong. And I receive the bills for anything beyond what Medicaid will pay (hair cuts, visits by podiatrist, cable TV, medicine co-pays, adult diapers, …)

I found a “calendar flip clock” that shows the date, day of the week, and time. And I make a list of all the baseball games on the TV each week. But Dad is getting worse. He can no longer turn on the TV by himself or change channels. The staff may or may not help him do this – it is an extra task for them. So I don’t expect it, but appreciate it when it happens.

Medicaid will only pay for a shared room. We were lucky that Dad didn’t have a roommate for the first 3 months. His roommate, Albert, ignores us and pretty much sleeps all day. So he and Dad are both there, but both of them mostly sleep and don’t interact at all. We did find out that Albert’s first language is Spanish. So today as I saw Alberto struggle with his bed covers, I went over to him asked him in Spanish if I could help him. He looked at me and said thank you. I plan to get out my Spanish dictionary and practice using phrases of daily living to ask him to come join us to watch a movie, can I help you do …, would you like …

I visit my dad three times a week, including a shorter visit on Fridays when my husband comes along. My dad doesn’t remember from one day to the next when I have come to visit. When I go on a trip to speak for pdplan4life, I make up an envelope for each day that I am gone (given to the staff to deliver), writing to Dad and telling him where I am and when I'll return to visit him again.

But as heartbreaking as this is, I truly cherish my visits with Dad. He is such a warm, caring person. I dread the day when he will no longer know me.