TWO POSTS IN TWO DAYS!

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. 

What all can happen in one month?

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:

Billy's friend, Steve, visits.

Billy with Jonathan and Debra Hooper

Billy watches the Cowboys game and works a puzzle.

TEAM BK...Awesome!

Our Costume Social at school. Admin team dressed as Vampires.

End of Memory Walk with a potion of our team.

Memory Walk shirt back.

Billy at the end of Memory Walk.

Shirt designed by our son-in-law.

Good News and Mixed Feelings

First, the good news.  I've written about my parents recently.  My dad has been diagnosed with Lewy Body Disease (LBD), and my mom is fighting cancer. But that's really not the good news.

Lewy body disease is one of the most common causes of dementia in the elderly. Dementia is the loss of mental functions severe enough to affect normal activities and relationships. Lewy body disease happens when abnormal structures, called Lewy bodies, build up in areas of the brain. The disease may cause a wide range of symptoms, including

• Changes in alertness and attention
• Hallucinations
• Problems with movement and posture
• Muscle stiffness
• Confusion
• Loss of memory

Lewy body disease can be hard to diagnose, because Parkinson's disease and Alzheimer's disease cause similar symptoms. Scientists think that Lewy body disease might be related to these diseases, or that they sometimes happen together.
Lewy body disease usually begins between the ages of 50 and 85. The disease gets worse over time. There is no cure. Treatment focuses on drugs to help symptoms.

It's been difficult for my mom to care for my dad and work on getting healthy. My sister and her family, my sis-in-law and her boys live within a few miles of me, and we've wanted them to move here for at least five years.  So, here is the good news:  In less than three weeks, we will move them to an assisted living facility in nearby North Richland Hills.  While Mom doesn't require assisted living, Dad certainly does, and they want to stay together.  We are thrilled to have them close by, so we can see them often and help care for them.  It's a huge change for them moving from a three bedroom home they've lived in for forty years to a two bedroom apartment. I know they will have some ups and downs, and I pray for many more ups!  Mom will not have to be concerned about their meals, cleaning the house, having the yard done, etc. Please pray for a smooth transition for my parents. 

On the side of mixed feelings....Billy is not doing so well at the moment, and I'm not handling it so well either. When I went to see him Monday evening, he made a bee line to me, grabbed my hand and said, "Get me out of here!"  He was more articulate than usual. The other residents were still in the dining room eating, and Raymond (evening nurse) told me Billy had not eaten well, and they couldn't get him seated again. I took him over to his place, and he had eaten half of a grilled cheese sandwich and a few veggie sticks. He wouldn't eat any more sandwich, and he had not touched his soup. I fed him his mandarin oranges, and then he told me he was done. I walked him down the hall to the TV room and asked him how his day had been...."Terrible" was all I understood. Nothing else he said made sense. We sat for a bit, and he started talking again, and he said something about he wants to be with me.  Each time he says something like that, my heart sinks a little....or maybe a lot. It's a physical pain, and I fight the tears. I had to leave after about an hour and walked him back down to the dining area where Raymond was.  He told me he had noticed Billy being very down lately....saying he wasn't in the right place. He felt like Billy was depressed.  Before I left, I got a smile from Billy and felt a little better. 

I had a late parent meeting yesterday afternoon followed by an appointment at 6:30, so I wasn't able to see Billy last night.  I got there earlier today, and he was sad again and told me he wanted to go with me.  I had yet another meeting at school at 6:00 this evening, and Shelley got there as I was about to leave.  I wanted to talk with Raymond before I left, and he told me that after I left on Monday evening, he had taken his dinner break. When he returned, the aides were with Billy in his room and very concerned about him. Raymond felt that he was having an anxiety attack and sat with him for almost half an hour calming him.  Billy told him he was in the wrong place and needed to get home. Raymond and I discussed again that he seems depressed and he plans to mention that to the nurse practitioner who sees Billy weekly.

Shelley had stayed in the TV room tonight while I talked to Raymond, and she had not heard any of this. As I was leaving, she was taking Billy to the dining area to eat. By the time I got back to school, she was texting to tell me how sad Billy was, and she thought he was about to cry.  He doesn't do that....not since his disease has advanced. He also told her he didn't belong there and he needed to go home. 

This is new territory. I just told a friend this morning that I felt like Billy was almost better off now that he doesn't realize he has this illness.  He's happier.  And now this....it's almost like the weird day he had a moment of clarity a long while back. He doesn't typically articulate his feelings like he has the last several days. 

Since I received the Medicaid decision several weeks ago, and I was told I needed to pay almost $1000 monthly for his care, I've thought about the possibility of their Community Based Alternative (CBA) program. The first case manager who denied Billy's benefits told me that if and when he qualified for Medicaid, I should consider this. She said he could get the same level of care at home that he could get in a facility.  This a trend with Medicaid right now because it's much less costly for them.  If he is in the CBA program, we don't have to pay the $1000 monthly.  My first reaction was that I didn't know if I could handle Billy's care at home, but I've questioned that lately. Shelley and I can't handle having our hearts broken daily and know that he is so unhappy. Hence, the mixed emotions I'm having. 

I have a hearing with Medicaid services on November 20th, and I'm appealing the amount they want me to pay monthly.  If I could keep half of the amount, I would be able to make monthly payments on two of the major bills I owe for his past care - dental and daycare.  I have no idea how that will turn out or when I might know their decision. 

Maybe this time with Billy is for me to feel compelled to bring him home. Maybe it's not. I'm praying for wisdom and peace about my decision. I went back to my January posts, and I remember clearly the peace I had about placing Billy even though it was heart wrenching at the time. I wish God would hand me an Easy Button.

I'm including some photos of recent times with Billy....very recently he was in a silly mood, and I love those times.  Our sweet friend, Rhonda, was visiting from Midland this past weekend, and Billy was thrilled to see her, as was I.  Family and friends are such a blessing. 

Billy was silly this particular evening....love it!

He cracks up himself....still.

Sweet man.

We love when Rhonda comes to visit!

Please keep us in your prayers, as I know you do.  Hugs and kisses to all! 

I guess everybody can have a bad day once in a while....

I BEGAN THIS POST ON SEPTEMBER 24TH, AND THEN LIFE GOT TOO BUSY TO FINISH IT....
I got a late start on getting to the nursing home today. My plan was to leave school by 4:00, go see Billy, and make it to an appointment by 6:00. I left school at 4:45 instead, fought the traffic, and got to Billy at 5:20, and that left me little time to visit.  It's not that we sit and talk, but I hate rushing in and back out. He was seated and eating when I got there, so I sat by him while he ate. When he finished, we stood to walk down to the TV room. On the way, he was having to hold up his pants which were falling down. His belt was twisted and the buckle was turned backwards. I knew I had to leave quickly, so I did not fix them. I also noticed an odor and discovered he needed to be changed and wondered how long he had been that way. Again - no time.  The nurse had his hands full processing a new resident into the unit, and the two aides were feeding residents.  We sat down for a moment, and we talked for a few minutes. Billy had his leg crossed, and I noticed he had on a shoe that was not his and was about two sizes too large. I looked at the other foot, and he was wearing his own shoe.  

I'm not certain why I'm so bothered by the shoes, but I am. AD patients have enough issues getting around without wearing a shoe that's too big, trying to hold up his pants, and I'm sure you get the picture. 

I knew I had to leave, and I felt bad about leaving Billy so soon after I got there, and I felt guilty for not taking care of what he needed right then. On the way to my appointment, I thought about the fact that what I saw this evening is rare. Billy is nearly always neat and tidy with his own shoes on.  He's also clean nearly all the time, so I need to chalk this up to a busy and possibly bad day in the unit. 

The balance is off in the unit. Funny that a place where 18 patients with dementia reside has balance to begin with, but it does. When I saw that the resident new to the unit was a man, I knew that meant that one of the four men was no longer in the unit.  I had a bad feeling about that. When I looked in the room I saw that it was Donald who was missing. He's the one who was sweet on walking Betty a few months ago.  He was walking constantly at that time, and then about a month ago, I noticed a drastic change. He went into the hospital for two weeks. While he was there, he lost 20 pounds and stopped walking. It was a shock to see him when he returned. I talked to his wife soon after he returned, and she was just sick about the regression he had while in the hospital. As I was leaving this evening, I hoped that Donald had been moved to another room outside the unit.  That happens sometimes. I asked the charge nurse if Donald was still in the nursing home. She shook her head, and I knew he had passed. "When?" I asked her. This past weekend. I knew he had declined, but I didn't realize the end was so near. It's always sobering when one of the residents passes. Even though caregivers, family, and friends know that their loved one will be whole again upon death, those left here feel such an emptiness when that time comes. 

TODAY - OCTOBER 1, 2012
Since I wrote last, I've met the new guy in the unit.  He's elderly, extremely thin, and has an amazing head of thick gray hair.  He talks coherently, but says dementia-type things.  He told me he's known Billy since he was a baby, and he told me that he is in the heating and air conditioning business.  Last week, the woman who sits by Billy at the dinner table was telling one of the guys about her boyfriends who used to get her out of jail, and she said the jail is one of those for crazy people.  Then she pointed at the nurse, Raymond, who was feeding another resident at the table next to us.  "I met him while I was in there, and he does little jobs for me.  I give him a few bucks, and he helps me out." Raymond just grinned as he does most of the time.  Never a dull moment in the unit.  

We've had quite a bit of time with Billy lately, and he's  been much more alert. It's been nice to see him smile even though he's usually very quiet. For those who've known Billy since before he had AD, you know how unusual it's been for Billy to be quiet. Billy was funny most of the time...if he had a joke to crack, he could not resist. He also found it necessary to fill silence with words...sometimes funny and sometimes not so funny. I remember times when we were going to be with people who might not know him or appreciate his humor as much as others. I would tell him before we joined them to remember that silence could be golden and not to feel like he had to fill each moment with talk!  How I miss his talking and would love to hear it again. He talks now, but it's not the same. 

I don't allow myself to dwell on what was very often because sadness drains me, but sometimes I just have to acknowledge that I miss so much about Billy and what was a good marriage - not perfect because no such thing exists - but really good. He did things that drove me nuts, and I'm sure I may have made him a bit crazy at times, but overall, our love and understanding of each other grew stronger and deeper with each year and each experience - good or bad. We cheered each other on in whatever the endeavor. When Billy decided he wanted to pursue his dream of teaching history, we jumped in with both feet. He quit his job (very scary) as manager of Wolfe Nursery, got as many hours transferred from ACU as would be accepted, and took a full load each semester along with working at a local garden center as many hours as humanly possible evenings and weekends. He graduated suma cum laude with his bachelors degree and started immediately on his masters in Constitutional History.  He applied for and was chosen as one of two Texans for the James Madison Fellowship in 1997. He spent a summer at Georgetown University one summer and completed his degree at UT-Permian Basin while teaching and coaching.  Billy rarely acted or sounded like a brainiac, but he was very bright; his writing proved his talent and vocabulary was far beyond mine, and I was the writing teacher for years. When our kids needed to write anything for history, they called on their dad who was better than Google for naming resources. He could tell them what to write because he already knew it, and then they could back it up with the references he gave them. I miss that he was smarter than I am and could tell me the words to the clues in the NY Times crossword puzzle. I don't do them anymore because he's not here, and even though I was writing the words, we were doing the puzzle. Billy has always been my biggest supporter in my career. Even a few months ago, in the nursing home, he introduced me to one of the staff members. She asked him if he had been a teacher, and of course he replied, "I am a teacher, but she is a principal!" 

I miss much more about Billy, but I'm also thankful for what we still have....a loving man who may not remember all our names, but he knows his family, and he loves them so. 

It Comes from Jesus - No Doubt About It

So many of my wonderful supportive friends tell me they are amazed at my strength.  I am strong, and I handle things fairly well, but ALL of my strength comes through Jesus. I hope I've been faithful about telling everyone that, but it's quite possible I've not been. One of the many blessings I experience is worshiping each week with family and friends at the Hills Church of Christ in the Fort Worth area. God is so faithful about making certain the songs we sing and the preaching we hear is always perfect for me! This weekend was no exception, and I was reminded that Jesus makes it possible to bear all I do.  I feel pain, I shed tears, and my heart aches, but I can see that this is temporary. I can handle it because of God's grace - because of Jesus. What a wonderful gift! Because of Jesus, I'm not afraid. I know He provides. 

The staff at Lexington Place is great with Billy. The nurses watch him carefully, and they report anything new to the doctor or physician's assistant. The trend has been to try to correct his behaviors with medications, and recently, he's very disconnected to us. He falls asleep while eating, and I think he was asleep while standing at church last week. It's been noticeable to those who work with him daily also, so last week they started backing off of some of the really heave duty meds. I noticed a slight difference on Saturday night, but tonight he seemed so much better. He was more interactive and smiled more.  He talked a lot more - it didn't make a lot of sense, but it's still good to have him talk.  I am thankful for any glimpse of the Billy we know and love. As my friend, Delores, often says - God is good. 

It's time for our annual Memory Walk on October 27th. It's also time for me to begin raising funds for the Alzheimer's Association to continue research.  If you would like to give to the cause, you can click the link to the right that says, "Donate to me." It will take you to a site where you can scroll to the Donate button, and search for my page by my name - Kathy Knowles.  I thank you in advance for any donations, prayers, and walkers.  If you're nearby, join us that day!  Let's END ALZ! 

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. 

August Brings Aggression

It's hard to believe that we are so far into August! Teachers returned to school this past Monday, we had our Meet the Teacher Event last night with what seemed like record crowds, and our students show up on Monday. Seems like yesterday that we were closing out last year. It's also hard to believe the difference in Billy from last August to now. I know that last August it was getting more difficult to care for Billy. Our mornings began at 4:30, so we could leave the house at 6:00a.m. to meet Terry, the caregiver who met us half way to the Rose Cottage each morning. When I think through all of the blessings we've had throughout Billy's disease, Terry is a big one. She would meet us at a QuickTrip parking lot, take Billy for the day, and she stayed with him until I picked him up around 6:00p.m. That was a long day for both of them, I'm sure, and I am thankful for the lovely people who cared for Billy every day during the time he stayed at Rose Cottage. 

It has been nearly seven months since Billy came to live at Lexington Place. The first few weeks were so difficult, and I'm sure I cried every day when I left. As AD takes over Billy's brain, he understands less, and for several months, he was okay with us visiting and then leaving. Recently, he's gone back to wanting to leave with Shelley or me when we leave. It still breaks my heart when I tell him he has to stay, and he looks so disappointed. Last Saturday evening, he didn't do that, and it was easier, but I have to say it's still painful.  I rock along pretty well feeling in control of my emotions, and then I get on overload and I lose that control. I'm sure that stress plays a role in my emotions, too, but lately I really miss having Billy to talk to about all the things going on. He's been my husband for 31 years, and he was my best friend for five years before that. I've shared everything with him for 36 years, and I miss having my husband with me. 

If we could still share our thoughts and feelings, we would share in our complete happiness that Shelley has her first teaching job after working so hard to finish her degree.  He would enjoy watching sports with our son-in-law and our brother-in-law. He loved to joke around with Shawn, and he still wants to do that...he just doesn't know what to say. I would also talk to him about my parents, and their health issues. It's funny that Billy asks my how my dad is about once a week. I don't know if he senses something, or if it's completely random.  My dad is having health issues, and ironically, he has some of the same issues Billy has had with Alzheimer's.  Dad's neurologist feels that he has Lewy Body Disease which is like having Alzheimer's mixed with Parkinson's. I haven't written about Dad in many months because he got upset with me for writing about his Thanksgiving episode, but I have to share that because it's a huge part of our lives right now. My mom's cancer has become active again, and this past week she started chemo - again. This time, the doctors plan to shrink the tumor significantly and then remove it surgically. Mom's health is our first priority right now, and Dad's health is up there also. I find myself wanting to "fix" things, and then I'm quickly reminded that I can't. I can't make all their decisions and shouldn't. Your prayers are needed and appreciated. 

I got a call from Lexington Place this afternoon, and my heart always sinks a bit when I see that name on my ringing phone. They don't call to tell me how great he's been. I've mentioned before that the weekends are a challenge for Billy. He doesn't care for the weekend nurse, but he's been aggressive with the weekday nurses also lately. For several weeks now, the medical staff has been working on getting his meds to help him calm down, and at times he seems better, but he's had some violent episodes lately. That is not Billy's nature, but when the brain deteriorates, and he's faced with strong emotions, he goes into fight or flight mode - lately it's been fight. From what I could understand today, Billy got very upset when the nurse and two aides tried to change him. He doesn't do well with that many people doing that. I'm sure he feels like he's being ambushed.  I plan to talk with the nurse tomorrow in person and try to understand exactly what happened, but Billy ended up with a busted nose and a swollen cheek. He looks like he was in a bar fight. When I got there to pick him up for our usual Saturday evening outing, he had not been shaved and he had blood on his shirt, but he was calm. [His pants have been falling off of him (literally), so I took some smaller clothes for him. When Billy entered LP in January, he could wear waist sizes 38 and 40.  He now wears waist size 36, and I really don't remember him wearing that size since we married.  I'm not sure how much weight he's lost total, and he's certainly not underweight, but I hope he stabilizes soon.]  One of the aides and I got him shaved and cleaned up, and he did very well while we were out and about.  After we shaved him this evening, he looked in the mirror, saw his face, and said, "What happened here?!" He had no clue.   

I don't know the answer to making it better. I hate the thought of making him zombie-like to calm him down, and I hate that he's getting physically aggressive and coming out the loser.  He apologizes after he calms down, so it seems that he knows he did something wrong, but he also has Alzheimer's! 

I'm posting a series of pictures here that my sister took at Rosa's this evening.  I want to hang on to any part of Billy that I have, and when I look at these pictures, his eyes make me sad. He does still laugh and smile some, but we rarely capture it in a picture. 

I love that Billy still kisses me as often as he can! 

He thinks he's smiling in this picture. You can see how swollen his face is.
I have no idea what's going on with my toothy smile! It looks fake. 

We couldn't get him to look up because he was eating Connor's frosty!

Finally! A smile!

And by picture number 5, he was getting tired of it all. 

My heart has been heavy lately. My brain has known all along that Billy would get worse, and I tried to prepare myself, but actually living it is hard. I had a happy moment tonight when he sang at church.  I've not heard him sing in a long time, and for those who haven't known Billy for as long as others, Billy has a beautiful tenor voice. He sang with the praise team for years in our church in Midland, he sang in many weddings, and for many funerals. We sang Blessed Assurance at church this evening, and that is a hymn he has stored in that remaining long term memory. We typically sing contemporary songs which I love, but Billy has always liked the old hymns, and he can harmonize well.  I can hardly stand to think of him not being with me, but it will be a joyous time when Billy sings praises in Heaven. 

Sometimes I wait too long to write, and I end up with more to say than should be written in one post. I also struggle with brevity - I like words, and I love to use them. My apologies ahead of time for what should probably be two posts. The summer has afforded me some time to see friends that I don't see often, and I am so thankful for that. We lived in west Texas for twenty years before coming back to what we consider home - Fort Worth, Texas. Leaving the dry flat landscape of west Texas was not too difficult; leaving the friends we love like family was painful. I'm thankful for all our ways of communicating - cell phones, texts, Facebook, etc, but nothing replaces seeing, talking, and hugging those dear friends. Because it's a six hour trip one way, we don't have that luxury very often. 

Billy in the main dining room.

Our dear friends, Billy and Kathy Futrell...yes, we share names.
We could just say Billy and Kathy squared!

Billy Wayne, Billy Jack, and Kathy!
I can't forget Boo, their cute little Maltipoo! 

The last time our Midland friends saw Billy was March 2011, and I know how difficult it is to visit Billy now, and see him as the disease takes its toll. For a long time, Billy looked perfectly normal physically, and he followed most social norms, so unless  you spent much time with him, you had no idea of his Alzheimer's. The physical aspects of the disease are appearing with Billy - his eyes have lost their luster, he moves very slowly, and he struggles to communicate. He does talk, but he doesn't follow the same topic, and we usually have no idea what he has said. He's also started the quick repetition of a syllable or word like so many of the AD patients do. I remember his mom making alliterations with most of her sentences. She used to tell her kids they looked "clickety clack." From a scientific standpoint, I would like to know why those with this disease have some similar patterns of speech. I learned that when patients with dementia begin cursing after never doing that, it usually means the front right temporal lobe is damaged; that is where our forbidden words are stored. The brain is a fascinating organ created by God, and Alzheimer's is an evil force. 


The unit has a new resident who has changed the dynamics of the group, and I'm not sure if it's this man's influence or just that Billy is changing, but Billy has gone through some noticeable changes the last few weeks. He's combative when the staff tries to change him, and he's strong. I've helped with the process before, and I know he's confused about what is going on. He doesn't want people "messing" with him, and pushes them away. They've learned it's best to wait for him to calm down - then try again. Sometimes it takes half an hour for him to calm down, and I hate that he is wet or soiled during that time, but I also know it's best to wait for him to calm down. The last few weeks, he's been upset when we start to leave. He wants to go with us, and when we say no, he wants to know when we are returning. I nearly always say I'm coming back the next day, and he nearly always says, "That's a long time." He follows me to the door, and several times, he's tried to leave, and I have to hold the door so he won't get out. The last few evenings, though, he's been better about not getting upset. I am thankful for small things like that. 


I'm also thankful for my daughter and her strength through these rough patches. Our hearts are broken over Billy's disease, but we rely on God's bolstering, each other, family and friends, and so many who offer up prayers on our behalf. I'm amazed at Shelley's kindness and strength when she visits and cares for her dad. She's had to do some really tough things lately - like help change her dad's adult diaper. I know that all of us would do whatever we need to do for our parents who certainly did for us, but when your dad is so young, it really stinks. Shelley takes it in stride, tries to make him as comfortable as she can, and never looks back. Billy doesn't want his daughter to see him like that, so she takes his hands and holds them tight, looking him in the eye and telling him to look at her. That way the staff can do what they need to, and Shelley keeps him from fighting them and maintains his dignity. I've helped with the process also, and it is not an easy task. I'm thankful and proud of her ability to do that. She often feeds him his meals, and that's another labor of love. 


I mentioned the new person in the unit...he's a handful - constantly pacing and wanting OUT of the unit. He asks everyone nearby to help him get out. He's getting slightly better because I saw him sitting during a meal tonight. Last week, he ate chicken salad with his hands while standing over me - that was fun. I dodged the plops of chicken salad, and only ended up with some fruit cocktail on me. I'm amazed that his wife was able to keep him home for as long as she did. She said she would block the door with her body, so he couldn't get out of the house, but he got away one day. The police found him in a neighbor's house, and that helped her realize she had to get some help. She certainly has more tenacity than I do. 


Something really sweet has happened with the presence of the new man. I've mentioned walking Betty before - she's a tall thin woman probably in her 60s with beautiful thick silver hair. She walks up and down the hall, shows little emotion - happy or otherwise, and she rarely utters a sound. That has changed with the arrival of the new man. They are smitten with each other. He is gentle and tender with her, holds her hand, asks her how she is feeling, and she smiles. For months, I didn't know she was missing her front two teeth because she rarely opened her mouth. Shelley said they were walking down the hall holding hands yesterday, and Betty was glowing. I notice that when the new man's family visits, Betty sits in the TV room with them. It's wonderful to see her so happy. I know her son visits sporadically, but I don't know if she has any other family. 


It's very sweet to see, and I am happy they have some smiles during the day. Should Billy decide to love on another lady in the unit, someone will need to remind me that I thought it was sweet for Betty and the new man. I may not be as keen on Billy making another lady smile! Actually, Billy is sweet to all of the residents most of the time. The little ladies who can talk tell me what a sweet man he is. One of the ladies tonight brought him a half roll of toilet paper. He took it graciously, unrolled a few feet, and handed it to me. I have no idea why she brought it to him, why he took it, nor why he handed it to me; but the whole thing seemed normal to them. I'm also amazed at how the residents have conversations with each other. One will say something that really makes no sense, and another will respond with a comment that has nothing to do with what was said. They have the cadence of conversation among themselves with no real meaning, but it satisfies a need they have to interact. Very interesting to watch. 


Enough of my rambling and observations for now. I have much on my mind, and I appreciate an opportunity to share. My next post will come soon - ideas are percolating! Peace and love to all. Our God is an awesome God. 

HAPPY BIRTHDAY, BILLY!

This picture is from Billy's birthday last July 12 in 2011. 

This is Billy today - a notable difference, but we see it more in behaviors than in his looks, but the big smile from last year is not seen often. 

Billy and Shelley - our sweet daughter who loves her dad with all her heart. 

Today was Billy's 56th birthday. He had no idea what day it was, and each time I told him that it was his birthday, he was surprised. I picked him up for lunch, and we met Jonathan and Debra Hooper at a favorite restaurant in Fort Worth. Billy and Jonathan have been friends since their college days in the 70s, and the four of us have been friends since before we married. We've shared many meals together in the last 31 years, and today may have been the most unusual visit we've had.  Billy and Jonathan have always bantered, joked, and laughed about whatever the topic. Billy fell into the same type of banter when he saw Jonathan, but he can no longer verbalize what he's thinking, or maybe he's thinking in disjointed sentences. He wants to participate in conversations we are having when we are with friends, and he will say something to get our attention, and as soon as we all look to him for what he has to say, he either trails off, or he says something totally off the wall. Our typical reaction is to laugh, and that seems to work well because Billy has always been pretty funny, but the reality is - it's not all that funny. Alzheimer's Disease has made this 56 year old man seem like a ten year old when he's in social situations. I'm a big fan of keeping your sense of humor during all of this, but some days my humorous outlook wanes. 


I'm good at keeping up a positive front when I'm with Billy and others, but when I get home and stop all my busy stuff, I sometimes have my moments. My last post was about the bittersweet reminders of June, and as I was reading through it again, I realized that any month of the year will have reminders of happier times. Billy's birthday was today, and our son's birthday is in three days on the 15th - always another difficult reminder that we don't have him here. Through blogging, I've met several other women whose husbands have Alzheimer's Disease.  One of them, Karen from New York said not long ago that she had never shed as many tears for anything as she had over AD. Her husband was diagnosed at age 36, and passed away this past February at 47. Karen's two children were very young when they began this journey. Another friend is Delores, and her husband is in the last stages of AD, and even though the term sounds as though death is imminent, a person can live in the last stages for years. Billy's mom was in the final stages for 3-4 years. Delores has days when she is overwhelmed with missing her husband of 49 years, but she sees blessings in so many things that may seem trivial to others. My friend, Sandy from Pennsylvania, cares for her husband who is in the earlier stages than Billy, but she already feels the brunt of caregiving for a person with AD.  Sandy's husband is in his mid 40s, and they have two teenagers. All of us blog about our experiences and the unsolicited journey of this disease, and we all have rather different styles of sharing, but we have much in common - a disdain for Alzheimer's Disease, a strong faith in God, a firm belief in seeing our spouses healthy again, and we have moments of sadness and frustration.  I'm glad I'm not alone on this journey, but I hate that so many are effected by AD. 


I am not sad all the time - I can't be. I have blessings galore, and I am thankful for those. I am very thankful to have enjoyed a nice two weeks away from work, and I'll be ready to go back on Monday. I love getting ready for the new school year, and I get just as excited as I did twenty years ago. We have the dearest friends who walk this journey with us, and our family is always with us.  As Delores says in all of her posts....God is good. 

June

This pictures was made about a month ago. 

Experiences throughout our lives changes our perspective. For so many years, I enjoyed the month of June for many reasons. As a teacher, it was nice to close out the previous school year and know we had a breather before the next year. It usually meant traveling to see family or a brief vacation, Father's Day, our wedding anniversary, my nephew's birthday, and it often signaled a time I would teach a writing institute which I loved doing. 


Several of those events are still part of June, but my perspective on them has changed. I still enjoy that the school year has a beginning and an end. We still celebrate Father's Day in June, but it is a bittersweet celebration. I'm thrilled I still have my dad here to honor on Father's Day, and I know Shelley is happy to have her dad here for that day also, but she is more like a parent to him now. We brought Billy home for Father's Day, and my parents came to visit that day also. We had all of our family here - kids and everyone - and we had a nice simple lunch.  Billy seemed not to recognize this as the house we had lived in together.  Part of that may be due to our multiple moves in the last six years. Before moving here, we had lived in the same house for fifteen years. From what I understand, though, dementia patients often lose their way in homes they've lived in for many years. One of the residents in the unit at LP has been there for a few years, and she frequently asks where her room is. They only have nine rooms and one hallway, so it's not a tricky maze. All the residents' names are on their rooms except for Billy's because he kept taking it off. I found it in his pocket and various places, so I guess they finally gave up. 


Another June event is the anniversary of our son's death on June 6th.  It's been five years since he died, and the pain is more bearable than it was, but you never "get over" the death of your child, and I don't ever want to forget how important he was to us or others. It sort of sneaks up on me, but when it comes, it's amazing how many of the details come back. We do have some great memories of our son, even though he had some really troubled years. I'm thankful for the good memories and laughter Andrew brought into our lives, and I'm thankful he is at peace. 


June is the month Billy and I were married, and it's another day to think about what he doesn't remember. We've been married for 31 years now. When we married, we knew it was for life. We agreed that no matter what came up in our marriage, divorce would never be discussed, and it never was.  I don't remember ever being so unhappy with each other that we would want to part company. We could get very angry with each other, and we argued vehemently at times, but we could always work it out. 


I can now add that this June 2012 has become a month of Alzheimer's Disease taking over much more of Billy's brain. A friend asked me today how long we've been dealing with this. It's been a long time - I first started seeing red flags in the summer of 2001, but the decline was gradual over several years. In the last five years, since true diagnosis, I've seen gradual decline with a few big dips. This last dip has been profound. I've been able to cope through all of the disease, but this last dip has really gotten to me. I find myself feeling sadder and sadder when I visit Billy. I work hard to be upbeat and maintain a positive attitude when I'm with him. For some reason, it hit me harder tonight, and I could not hold back the tears as I visited him. He had no idea that I was upset. He talked and answered my questions, and very little of it made sense. Humor helps, and I can nearly always find it, but I couldn't tonight. One good thing for me is that he still tells me he loves me, and when I told him I loved him tonight, he said, "I love you more." He's said that to me for years. What a blessing. 


The bulleted list below gives a pretty accurate description of what we see with Billy right now. The only one that doesn't really describe Billy is the description of sleep. He sleeps well because he is medicated. The description comes from the Alzheimer's Association website. They describe AD as seven stages. No one really knows how long a person will spend in each stage - it's different for different people. The medical staff is wonderful about seeking answers. When they see a decline they look for infections or reactions to medications. Recent blood work shows that Billy is physically healthy - no infections. He continues to lose weight - almost 25 pounds since January, but he's still a very healthy weight. He eats well, but he walks most of the day. They are adjusting his medications and trying to find a schedule of meds that will help deter his anxiety and nervousness in the late afternoon and evenings. He wrings his hands often, shakes his leg when sitting, and has general anxiety in the evenings. 

Stage 6:

Severe cognitive decline (Moderately severe or mid-stage Alzheimer's disease) Memory continues to worsen, personality changes may take place and individuals need extensive help with daily activities. At this stage, individuals may: Lose awareness of recent experiences as well as of their surroundings Remember their own name but have difficulty with their personal history Remember: It is difficult to place a person with Alzheimer's in a specific stage as stages may overlap. Distinguish familiar and unfamiliar faces but have trouble remembering the name of a spouse or caregiver Need help dressing properly and may, without supervision, make mistakes such as putting pajamas over daytime clothes or shoes on the wrong feet Experience major changes in sleep patterns — sleeping during the day and becoming restless at night Need help handling details of toileting (for example, flushing the toilet, wiping or disposing of tissue properly) Have increasingly frequent trouble controlling their bladder or bowels Experience major personality and behavioral changes, including suspiciousness and delusions (such as believing that their caregiver is an impostor)or compulsive, repetitive behavior like hand-wringing or tissue shredding Tend to wander or become lost I write about my true feelings, but I want all who read this to know that I am okay. I may not be having the time of my life, but I am really doing well. My faith is stronger than ever, and the knowledge that what we have right now on this earth is temporary provides me peace and comfort. I will see my son again, and he will be healthy and praising God. I will be with my husband again - the original unaffected by Alzheimer's Disease husband. I sometimes allow myself to wonder why we are walking through this right now, and I say WE because I do not walk this journey alone. I have the most incredible family and friends who provide a support network for us, and they are just as affected by this as I.  I don't know why Billy has this disease when seemingly his cousins and siblings are not affected by it. He doesn't deserve to have it. Billy was/is not a perfect human being (only one of those walked the earth), but he is the best hearted, do anything he could for a friend or family member, caring, and funny guy I know. As we walk through the unit together on the way to the courtyard, Billy stops to hug or give a pat on the back to at least three of the elderly women who live in the unit. He has a very kind spirit - still. Another wonderful blessing.  I appreciate that you read this, and that you lift us up in prayer. Peace and love to you all. Let's enjoy July!