The Face of Early Onset Alzheimer's Disease: November 2012

I'm not certain that I've ever written two posts in two days on this blog, s0 here's a first. I wanted to write about the Medicaid hearing I had today. I had no idea when I appealed the decision of HHSC regarding the co-pay they expected for Billy, how it all worked. I'm still not certain, but I know much more now than I did before.

First of all, you don't go to a place for this hearing, you call a number that is given to you at a specific time on a specific date. You are given an access code to input when you call the number. The person hearing the appeal does not work for the entity of the department making Medicaid decisions. She works in the legal department of HHSC. The three of us had a conference call, and the hearing officer had allotted one hour for the appeal. We were asked to raise our right hands and swear to tell the truth. The representative from Medicaid was given the first turn to present her evidence. I was told to wait until the hearing officer gave me the go-ahead to ask questions. Between the hearing officer asking questions, and the rep from Medicaid presenting her evidence, I got to ask questions after about 45 minutes.

I know that I am far too verbose, and I really try to cut to the chase, but I felt a need to explain why I was asking to keep $500 a month of Billy's money. It will not surprise anyone who reads this blog regularly to know that Billy's case doesn't fit the "norm" for most Medicaid applications. In essence, I was allowed to ask ONE question, and we never really got an answer.

The evidence I sent by way of the case manager for Billy did not get to the Hearing Officer. The representative from Medicaid explained that Billy had been denied benefits at first because they did not have the Medical Necessity document that should have been submitted from the nursing home. At that point, I interjected that the document was in their system, but it had not been found because at some point in the beginning, Billy's social security number was put into the system wrong - it wasn't even close.

Without telling all the details of the hour long conference, I will just say that the hearing officer offered me an opportunity to get my evidence to her by December 3rd, and she would then determine if we needed to have another hearing. She gave me specific directions on how to send the information to her. I agreed to do that.

I feel like I understand better what to do now. The representative is not there to help me, and they are not eager to tell any mistakes they have made. I will gather my evidence, and I will make certain it is received by the correct person. The hearing officer did not have to do that for me today, and once again, God has intervened and given me an opportunity for do-overs!

I'll keep you posted, and as always, I appreciate your prayers.

I know I can't tell about an entire month in one post, but I can give snippets. Here are the highlights (lowlights) from October 17th (my last post) to today!

October....

I had several heart to heart talks with friends who know me, Billy, and the situation we've been in. I decided that I don't believe bringing Billy home is a good idea for him. He needs the constant medical attention he gets now, he needs the socialization, he needs a consistent schedule, and he needs me to be rested and able to cope. I allowed emotions to cloud my reason, and when I started thinking of all the things we would do at home, I knew it would be more than I could handle. I don't know if I could even get him into either of our showers. He needs the simple walk-in shower with a chair that the nursing home has. He needs to be there, and I need to make it happen. Thanks to my friends and family who helped me see the light.

PHIS had our annual costume social for our students. More students came to that than we've ever had...about 800, and in spite of the number, they were better behaved than ever before. Our PTA board got a really slow start this year, but when we got it all together - WOW! Awesome. This was held on a Friday night followed by our annual Memory Walk to END ALZ the next morning. I work with good friends, and that makes work so much fun!

The Memory Walk was fabulous this year. It was a very cool morning and may have been the last fall day we've had since. It's been unseasonably warm since that day. We had more than 30 people walk for Team BK, raised over $5000, and best of all, Billy came with us. I knew he couldn't make the entire walk, so I borrowed a wheelchair, and he rode all the way - except for when he fell out of the wheelchair because he randomly decided to stand up! No harm done. It was a special day having our nephew and one of Billy's long time friends since college push Billy in the wheelchair throughout the walk. Love our friends and family.

November thus far....

I went to Canton's first Monday for the first time ever...along with thousands of other folks who thought November would be a perfect time to go. It was crowded and really HOT, but I had a blast with friends and Shelley. You know...friends and family.
And speaking of family...the day after Canton, we all (my sister and her family, my sister-in-law and nephews, Shelley and Andrew, and me) struck out to Corsicana to load up my parents. It's been a process, but they are getting settled into their apartment.
The first day that Mom and Dad officially lived in their apartment, Leslie and I were on our way to Corsicana to get more of their items when my aunt called and said, "We've got a real bad situation here!" It's one of those phrases that I'm certain Leslie and I will repeat because it so aptly describes what is going on! Seems that Dad decided that he was ready to go back to Corsicana, and as mom stood at his car window trying to reason with him and tell him he is not to drive, my aunt and uncle drove up just to visit. Before all was said and done, the nurse and the marketing director, Marti, were all talking with dad. The nurse had my uncle pull his truck behind Dad, blocking him from leaving. Mom got in the passenger side and the marketing director got in the back seat, and they all chatted until Dad said he would come back in when he was ready. Mom was exhausted from it, and she went inside while Marti stayed in the backseat just shooting the breeze with Dad. After a while, he said he was ready to go back in. In the meantime, Mom had given my aunt her car keys, so she could take the car back to her house. Dad went back in, my aunt and uncle took the car to their house, and another crisis was averted. Family and new friends are there.
After about a week at the retirement center, Mom needed to buy some items at Walmart. I offered to take her, and Dad goes where Mom goes. Off we headed to Wally World with Mom trying to convince Dad to use a scooter in the store. He had his walker, and that was all he planned to use. My Facebook friends have read this story already, but indulge me. We lost Dad in Walmart, even though he shuffles with a walker, we lost him. I asked Mom to stay put while I looked over most of the store for Dad. I finally found him walking slowly from the entrance on the opposite side of the store where we saw him heading last. He was happy to see me, and I noticed he did not have his walker. I asked him where it was, and he told me he had no idea. I took him to Mom, and he promised to stay with her while I searched for the walker which I found at the Customer Service desk. Did I mention I've been in a boot for a bum toe for almost a month, and by that time, my foot was so sore! I am so thankful that Dad was okay. God watches over him when we lose him. So grateful.
School is sometimes a respite for me with the schedule I have, but we have had so many unusual situations this year. It's exhausting at times. Early this past week, I received a call that the mom of one of our sweet fifth graders died unexpectedly and suddenly after bringing her daughter to school that morning. I don't know all of the moms in our school - too many kids to know them all, but his mom we knew well because her daughter has a terminal illness that we've met about numerous times. She was involved in every moment of her daughter's life, and she did an amazing job keeping up with all the medical appointments, all the medications, and all that goes with having a chronically ill child that most likely will not get better. We all stopped in our tracks that day. No one ever expects a young mom with such great responsibility to be there one moment and not the next. I believe it will have an impact on our campus for some time. We are reminded of the importance of not taking anything for granted. The family is surrounded by family and friends, and I believe we all hugged our loved ones a bit tighter that night.
The next day I had surgery on my foot, a very minor surgery to straighten a hammer toe that appeared in early August and prevented me from wearing regular shoes. It was uncomfortable and really ugly, but the main reason I got it fixed was that I got a blister from wearing closed toed shoes, and the blister ulcerated and became infected. The doctor described it as the bone having a milliliter of skin covering it, and if the infection made it to the bone - adios to the toe. I'm rather fond of my toes when standing and walking, so I felt like the few days before Thanksgiving week would be a good time to have the surgery. Even though the surgery is really simple, I cannot walk or put weight on my toe for a full week. I am not graceful and never have been. I'm actually more clumsy than I used to be because my balance is poor - probably because of neuropathy in my feet. I have been loaned crutches (I actually ran into the wall with them), a knee scooter (so far no huge wrecks, but my knee and shin are incredibly sore), and now a wheel chair. I got out in public for the first time last night when I went to see Billy. He found it interesting when I wheeled in on the scooter. I really wanted to join my daughter in running errands today and getting some things done. I didn't make it very far. I am so fortunate to have only a week with no weight on my foot. I will not take my mobility for granted again. Tomorrow I will attempt to use the wheelchair without running into walls. It's not an easy thing to do when you're me.
Today, when we went to see Billy, he was in the dining area beside Walking Betty patting her and telling her it would be okay. Walking Betty no longer walks, and she HATES being in the wheelchair. She cannot get out because they have a tray attached to it, sort of like you would see on a high chair. I've seen her upset before, and she screams. Today, she was crying with huge tears, and Billy was trying to make her feel better. I had to fight my tears because it made me so sad. I hate Alzheimer's Disease.

It's been an unusually busy month. I am thankful to have a week off work, and although I hate being immobile, I needed to slow down a bit and rest. I have and will continue. Peace and love to all of you, and have a wonderful Thanksgiving as you count your blessings!

Pictures from the last month: