Today's post is different. A dear friend of mine, and so many others, has a new home in Heaven, and I know she has not stopped smiling since she arrived. She no longer has the pain and physical limitations she has had for some time due to cancer. One thing I've found to be true....knowing that someone has gone on to join the Lord and wouldn't want to come if they could does not diminish our pain when they leave. I've got a new hole in my heart because Shelley won't be posting on Facebook anymore. She won't send me an email to check on Billy or me. She won't Like my Facebook posts and blog anymore. My heart hurts, and I know her mom, brother, sister-in-law, and precious niece and nephew feel it more deeply than I. They were her world, and she was theirs.
I met Shelley when I was a very green first year assistant principal, and she was the fifth grade math teacher. We had a small campus with three fifth grade classrooms taught by Shelley, April, and Anna. What a blessed group of fifth graders we had! In the two years I was there, I grew to love the entire campus - students and teachers, but I was especially close to this group. Several of us who had worked at this campus at different times formed the Playground Committee, and met every few months to have dinner for the next several years.
Burnet Elementary Playground Committee Shelley is second from left on the second row.
Shelley was the type of teacher who knew her students beyond the classroom. She cared about their families and their lives. She knew if they played sports or took dance classes. She was busy most weekends attending sporting events of her students. She made no excuses for her students, and she didn't allow them to make excuses for themselves. They were in her class to learn math concepts, and she would ensure that happened. She held them all to high expectations, and they lived up to them. Nobody wanted to disappoint Ms. Reep. Shelley became a leader of teachers in her school district, and some of her students have become teachers because of Ms. Reep. She has been honored as a leader in education in the state of Texas.
In the midst of Shelley's battle with colon cancer, she was constantly concerned about others. She kept in touch about Billy's status, and when we made the decision to place him in a nursing home, she wrote my Shelley several times to check on how she was doing with this change. She kept up with her friends and how they were doing. No wallowing for Shelley. When she decided to stop treatment and enjoy a better quality of life, she traveled with her family and enjoyed everything she could with them. What wonderful memories this made for them, and what joy it brought to her.
Shelley taught us all through her life, through her illness, and through her last days on earth. I am better for knowing Shelley Reep, and I am honored to have called her friend and sister in Christ.
Every day is the same, and every day is different. Billy thrives on his routine, and the nursing home keeps a specific schedule for all of the residents particularly those in the Memory Unit. But Billy has a disease of the brain, and it changes daily. You never know what might happen in a day with any of the residents, and that triggers reactions from others. Billy has adjusted well, and he only takes Ativan when needed. That has been the goal since her entered the nursing home....he has other meds that regulate his behavior (if it can be regulated), and when his anxiety gets beyond comfortable for him or his caretakers, he is given Ativan. He usually takes it on the weekend because he is not fond of the weekend nurse. I'm not certain why he feels that way, but I can't change his mind. Another factor that is unpredictable is the time that Shelley, Andrew, or I will arrive to see him. At least one of us and many times all three of us sit with him during dinner in the evening. He begins looking for us around 3:30, and we never arrive before 4:45, and it's usually past 5:00.
I am pleased that the caretakers have changed his bathing schedule to weekday mornings. He is calmer in the morning, and he likes the staff during the week. He is resistant to shaving and help cleaning on the weekends. I have no problem with him not begin shaved, but when he needs to be cleaned and his underwear changed, I can't always be there. It's definitely easier on the weekends for me to get there, but even then it takes me 30 minutes to arrive. I'm praying he will grow accustomed to the weekend group, but I'm not certain how I can expedite that. I take him with me on Saturday afternoons and evenings, and I take him back around 8:00pm. By that time, he's calm and ready to prepare for bed.
In late March, Shelley and I attended the annual Alzheimer's Symposium for North Texas. It's held each March in Fort Worth, and it is excellent. The keynote speakers are always well versed in Alzheimer's Disease, and this year was no exception. We heard Heather McKay who is dementia care specialist and occupational therapist by trade. She teaches courses at the University of North Carolina, and she has her own company that assists caregivers tremendously. Most doctors speak of Alzheimer's Disease in three major stages with the first being Mild, then Moderate, and finally Severe. Within those three, they may break them down also, and
we are told that Billy is in the late Moderate stage.
Heather McKay shared with us the Levels of Cognitive Decline used by occupational therapists, and it's much more specific. It has five levels with Level 5 equating to Mild. When Shelley and I read through the levels, we could
immediately see that Billy falls into Level 3.
Level 3 –
Middle Loss - See It – Touch It – Take It – Taste It – Hunting & Gathering
Touches and handles almost anything that is visible.
Does not recognize other’s ownership – takes things, invades
space, gets ‘too close’
Can still walk around and go places – ‘gets into things’.
Language is poor and comprehension very limited - does take turns.
Responds to tone of voice, body language and facial expression.
Loses the ability to use tools and utensils during this level.
Does things because they feel good, look good, taste good –
refuses if they don’t.
Stops doing when it isn’t interesting anymore.
Can often imitate you some – But not always aware of you as a
person
We also began identifying where most of the other residents were. In the unit, they go down to Level 2, but as they become bed bound, they are moved. Billy touches everything, and most of the residents will move from room to room in the unit and pick up things from others' rooms. We label everything! He is beginning to have issues with his utensils, and he loses interest quickly. He does know his family, and he may not call us by the correct relation (sometimes he says I'm his mom), but he knows I'm family.
I'm posting a video of Billy, and I will post more as we go along. I focused on his behaviors while he waits for his dinner in the dining room. The staff starts taking the residents to the main dining room around 4:30, which creates a really long wait for most of them because dinner is served around 5:30. Billy doesn't go until one of us arrives, so if we are later than 5:15, he eats in the unit. When we get into the dining room, Billy begins his ritual at the table. I call it the Dance of the Silverware.
I had this post written early in the week, then I had to learn how to edit my video which took me hours (literally). I posted it on my blog earlier tonight,and somehow I erased my entire post. Very irritating! Even though I edited a lot of the video out, it may still be too long. I'll get the hang of it soon. I've only been a Mac user since August, and I have MUCH to learn. Now, I'm learning how to use iMovie, and it's awesome!
I look forward to posting more video of Billy and hopefully capturing some of his funnies. He is pretty funny at times. Pardon my Texas twang in the beginning and notice how Billy stirs his Dr. Pepper - his drink of choice. He often adds sugar or sweetener to his DP unless we stop him. At the end
of the video you will see an interesting use of his utensils!
As always, thank you for reading, for caring, and for praying. Peace and love to all.
Sometimes silence isn't so golden. I met Billy (BJ) Knowles when I was an eighteen year old freshman at Abilene Christian University. My friend, Karen, and I were hanging out in the band hall sort of hoping someone might offer us a ride to the annual band picnic that evening that was held every year at Dr. Traylor's ranch. Billy and his buddy Cy, offered us a ride, along with another freshman girl that I can't remember well. We piled into Cy's car, and Billy Jack never stopped talking and making us laugh on the way to the picnic. For the next two weeks, I ran into Billy Jack (BJ, Billy) anywhere I went on campus. I'm not sure if he was stalking me, or if I was just always on the alert looking for him. He finally asked me out a few weeks later, and he's made me laugh for the last 36 years. Karen, by the way, is my dear friend from high school who lives a half hour away and has placed her husband, George, in assisted living. George has Inclusion Body Myopathy and is on Hospice care. Karen and I have dinner once a month, and we talk non-stop the entire time. Amazing how our lives circle back in ways we never dreamed.
As AD has progressed, Billy has become less talkative, but he has days where he's more animated and almost silly. I like those days because he's happy. In the last week or so, Billy talks less and less. He's calm, and I know that is preferred over the high anxiety, but the quiet is deafening. He answers questions when asked, and he asks where I am if I'm not there, but he doesn't have conversations with me anymore. Shelley has taken it really hard because it's comforting that he talks and knows who we are. It may be his increased medication that has quieted him, and if so, it's a trade-off. Even though he got agitated and anxious, he did express himself. His affect is almost flat right now, and that makes us sad. He's surrounded by other residents with Alzheimer's every day, and it gives us more than a glimpse of his future. We also remember his mother's very long journey with AD. I didn't go to Lexington Place last night because of so much going on at school, and Shelley stayed with him through his dinner. She had a mini breakdown when she got home because she had to help him eat his dinner last night. He struggles with tremors sometimes, and then he's better on some days. All of it seems too much to bear at times, but God gives us strength.
Billy did have a rallying moment this last Saturday in a way that wasn't good. I received a call around 2:30 from the nurse in the unit. He told me that Mr. Billy was out of control, and that he had gotten out of the unit. He gave me a brief account of what had happened and asked if I would speak with Billy. I asked Billy what happened, and he said, "Nothing good." He's not able to retell events, but he can tell me if it was good or bad. He was so upset he couldn't talk to me, and I told the nurse to let him walk around and that I was on my way over. Sabash is the weekend nurse, and he had tried to give Billy Ativan to calm him when he became agitated, but he refused to take it. By the time I arrived about 40 minutes later, he was standing in the hall looking for me. He looked distressed and very relieved to see me. He had finally taken the Ativan about fifteen minutes before I got there, and he was completely calm about half way to our house. I got him showered and dressed for church, and he did well during church. One thing that seems to confuse him is communion that he's taken every week for close to forty years. He puts the small wafer in his mouth, but when the juice comes by, he's confused. Last week, I pointed at my mouth indicating that he was to drink it. He put the cup to my mouth, so I shook my head and touched his lips. He drank it then. After church we went to eat with friends, and he was in good humor, talking and laughing. We had no idea what he was talking about, but it's easy to laugh with someone who seems happy. He really did well until we walked back into the unit, and he saw the nurse. He leaned over to me and said, "I don't like that guy." Why not? "I'll have to tell you later." I don't expect that Billy will tell me why he doesn't like Sabash, and I doubt that he even knows. It's something he feels for some reason. I doubt Sabash has done anything bad to Billy. He probably does things differently than the weekday nurse that Billy spends five days with each week. Routine is so important to him, and he's out of his routine on the weekend. I don't really know.
The brain is intriguing and confusing and in control of everything. It's a fascinating organ, and I love learning about it, but now that Billy's brain is diseased, I'm learning firsthand how much a person's brain determines the quality of his life.
Tonight, Shelley and I spent more time trying to engage him in conversation, and he was better. Some of what he said made sense, and some of it did not. It was so good to see him smile and laugh. In spite of his moment of occasional rebellion and his lack of a filter when he speaks, Billy remains one of the nicest people I know. Our son-in-law dropped by this evening, and as he and Shelley were leaving, Billy looked at Andrew and said, "You look good for a change."
