Wednesday, October 17, 2012

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'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 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! 


  1. Kathy, I'm sorry.
    If I could interject - when Alzheimer's patients say they "want to go home" they don't actually mean "home" as you or I would. By "home' they mean that safe place, that place- or memory- where they remember feeling safe and loved. MIke would ALWAYS say he wanted to go home. I would always try to change the subject to get him off that topic because he was in fact home. Sometimes it would work, other times it wouldn't. AS for the Medicaid program, is that new? I never had anything like that when Mike was sick, or maybe it's just different in each state. WOuld you have a aide over-night. If not, that would be a big issue for you now that you're used to getting rest. Also bear in mind that aides often call in sick and just not show up. WOuld they have an immediate substitute to send in that case?
    Just some thoughts I would share from experience. Because we kept Mike at home for 11 years, these were the major issues we had. Good luck with the hearing. AS always, my prayers are with you.

  2. Oh Kathy,
    I'm so happy for you that your parents will be closer and your mom won't have so many worries and responsibilities. I pray they will adapt and enjoy their new home.

    Oh, my...... I so understand about how much it's easier when your loved one dosn't miss you.....etc. It's a two headed sword. I remember how I wanted David to remember me and yet I didn't want him to want to go home or miss me.

    Please know you're in my thoughts and prayers. It's not easy, but you can do it......