BEING DIFFERENT SOMETIMES STINKS!

Throughout the last several years, I have had many opportunities to hear how different our circumstance is, and I'm growing weary of it.  We all know by now that having Alzheimer's Disease in your 40s and 50s is not the norm - statistics say about 5% of all AD patients are diagnosed under the age of 65. Most Americans who have Early Onset AD qualify and receive Social Security Disability.  Not so with Billy. Billy paid many quarters into SS, and when (if) he turns 62, he will be able to draw some retirement, but because he taught school for the last 15 years that he was able to work, and the districts he taught for did not pay into Social Security, he does not qualify for SS Disability. If you are on SS Disability for two years, it's a pretty sure thing that you will then receive Medicare - no matter your age. Not so with Billy. Being on Medicare makes for a smoother transition onto Medicaid. But remember, Billy does not receive Medicare. So...Billy's income is what he gets from the Texas Teacher Retirement System's Disability Retirement. Out of the small amount he receives, TRS takes out over $300 for his insurance. I am happy that he has any income, and I am relieved that he has insurance. I'm disappointed that he does not have Medicare nor SS disability. But....I'm getting off topic. Back to how Billy is different. 

If you've followed my blog for a while, you most likely know that I applied for Billy to receive Medicaid, so that he can get the care he needs. I sent the application to Health and Human Services Commission (HHSC) at the end of March, and a decision is to be made within 45 days. I received a denial letter about 6 weeks later, stating that Billy did not qualify because they did not have a form ABCDEF that confirms the placement as a medical necessity. The nursing home was responsible for submitting said form, and I contacted them immediately. I was assured that the form had been submitted.  The financial director of the nursing home, Larry, has been in his position for close to 30 years and before this he had a similar role in the corporate office of the nursing home group.  He's been submitting the correct forms for years, and he was puzzled about HHSC's denial.  He began making phone calls to the caseworker who was someone new to the office (big turnover rate in the HHSC it seems). Days later, he found that at some point during the processing of Billy's application, his social security number was put into the system incorrectly. The number they had for him was completely off - not even transposed numbers. I was relieved that the error was found and could be corrected....eventually....after a long time. I don't know what is involved in correcting a social security number that has been recorded incorrectly, but it must be very complicated because it took at least three weeks to get it done. 

The process began again after the correction was made, and I was assured that I did not have to re-submit the application and 100 pages of documents again. A few more weeks went by - no word from HHSC. I called Larry again;  he had not heard anything either. A few more weeks passed, and I received a letter from HHSC on a Saturday that was dated the Monday before and supposedly mailed from Midland. It was due the following Thursday with a laundry list of documents they wanted. Some of the pages were duplicated. I called Larry, and he asked me to send him the documents. A few hours later, I found an email that Larry had copied to me where he addressed the case manager and his supervisor. I received a phone call from the case worker that afternoon. He apologized and blamed an automated system that requested the additional items. He did need a few more documents, and then he could make a determination on the case. It involved gathering about ten documents - four of which I had already submitted. One that he needed was a form stating that Billy had closed an annuity in 2009 soon after he retired. I'm sure we received the document in the mail in 2009, and I may even have it somewhere but locating it at home seemed impossible. I contacted the representative from the investment firm, and after sending her a copy of my Power of Attorney, I received the document. Another thing he wanted was a statement for each month, January-April 2012 to show the balance in Billy's savings account. I had sent those January through March with original application, and the balance remains less than $45. I emailed the documents to the case worker.  Two more weeks went by, and I got a call from Larry this past Wednesday. He had good news and not as good news.  Billy finally qualified for Medicaid services, and because our combined income is more than $2841 per month, I must pay $966.62 per month to the nursing home, which is basically $60 less than his monthly check. The $60 is to go for his incidental expenses. The amount owed is retroactive back to when Billy was placed. I will check this week to see if there is an appeals process on that type of decision. I have not yet received the official word from HHSC, but on Friday I received the bill from the nursing home. Larry told me that he had never had this happen, but as we all know, Billy's situation is different from most. 

I am not opposed to paying a portion of the nursing home bill because I should pay a portion.  He's my husband, and I am not destitute. However, the amount will be really tough to make. One of my frustrations is with the cumbersome process which is difficult to understand. I am a reasonably intelligent person with an education, and I needed help filling out the forms. A friend of mine applied for her mom around the same time, and her family hired a specialist to lead them through the process. His cost is $100 per hour, and I felt like I could surely manage which I did with Larry's assistance. But even Larry was puzzled by some of the questions and decisions made by HHSC. 

As always, I do not question that God is good and takes care of even the sparrows. I have been the recipient of God's grace on so many occasions, and this will work out. I wish this had an EASY button to go with the whole process. 

I must share some of the blessings since my last post. I received an email from one of Billy's former co-workers who taught with him at Lee High School in Midland. Steve had learned of Billy's disease from someone else, and he wanted to come visit Billy. What a special visit that was for Billy, and Steve plans to come periodically from Austin.  I know he remembered Steve, and as Steve mentioned, Billy still has his mischievous grin!  He told about a time when he (Steve) was making copies in the workroom, and Billy (BJ to his friends) gave him a giant wedgie.  As Steve described it, Billy pulled his underwear up over the back of his head.  As he told about it, Billy got that grin on his face that Steve knew well.  I love those times when I see a glimpse of the real Billy.  I got another look at it yesterday evening when we were driving somewhere after worship.  Billy is a little like a toddler in the car.  He can't leave the buttons alone. He turns off the air, turns up the volume, and when he started to pull the door handle, I sort of yelled, "Don't touch that!" He stopped, held up both his hands as though I had a gun, and looked at me with a look I've seen a million times - his eyes bugged out, his mouth turned up a bit on both sides as though to say, "Pardon me!" in Steve Martin style.  I laughed so hard, and told him how much he makes me laugh and always has. I am so thankful for those moments. They keep me going. 

Billy is heavily medicated right now. I don't know how I feel about it. I don't like that he gets agitated and uncomfortable, but I don't care for the way he's so out of it right now. I do believe he is not as agitated and volatile when he's getting changed. The only calls I got this week were during the week....once to tell me he had fallen, and once to discuss the increase in meds with me. I was really concerned about the falling because he doesn't fall, and that is a side effect of his meds. However, when I got there that evening, I found that it was a rolling stool that has no arms or back.  The staff uses that when they are feeding residents, and really anyone could have fallen off it. I was relieved. 

UPDATE FROM ABOVE:

I wrote the above post earlier today, and then I attended a Financial Seminar at church this evening. I was reminded that God is faithful (not that I forget), and we will get through this. I also checked the mail from yesterday. I had four envelopes from HHSC. Two different letters and forms that were duplicated. The first one I opened said essentially what Larry had already told me, but on the back it also has the Appeals Process.  I will start on that tomorrow. The other duplicated letter is one telling me that they need more documents before making the decision. Sounds familiar! This one wants copies of my income from January to April of this year. I had already sent them January through March. What a frustrating process this is. I guess I will ask about that tomorrow also.