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.