I typically don't post twice in one week. Part of that is because I don't always have the energy, and sometimes it's because things don't change that quickly. Then sometimes, I get hit in the face by the changes that have been subtle on a daily basis, and my heart wrenches. Today was one of those days.
I had a Care Meeting for Billy today. The social worker, director of nursing, and activity director all met with me. They wanted Billy to join us, and I agreed. The activity director, also named Kathy, went to get him. As she brought him around the corner, I saw him being led by her. He walks so slowly now - like a very old man, and you have to pull him along. His gait seems normal and balance is okay. I have no idea why that has changed. Just part of this lovely disease. It's also hard to get him to sit down. It's a disconnect between his brain and legs, I think. He does finally sit down, but it's a big change from what it was.
The nurse explained to him that we were meeting to make sure he was comfortable and that all things were going well for him. He responded, but it didn't make a lot of sense. When prompted, he says he likes it there. He eats well, and yet he's lost almost 20 pounds since January 24th. We certainly are not concerned about him being too thin because he had some weight to spare, but I do hope his weight loss slows.
The hardest part for me to see is his inability to respond to questions well. The nurse asked him what he taught when he was a teacher, and he looked around for a moment, then he pointed at the table and said something about a green square. I said, "You taught history, and you really liked teaching US history the most." He nodded. And you know what he said...."I still do." A few minutes later, the social worker asked him his birthday. He looked at me, and I waited to see what he would say. He finally said, "Twelve, twelve, twelve." I told him that his birthday is on the twelfth, and I asked him if he knew the month. He thought for a moment and said Julie. I corrected him and confirmed that it is in July. He realized he had said it wrong, and he tried again, but he couldn't get the word July out.
The hardest part of the meeting was signing a DNR for him. I've tried to talk to Billy about this for a few years, and when I knew he could understand, he would say he wanted to think about it. Obviously, he cannot make those decisions for himself now. I feel strongly that if God decides to take him home, I will not stand in the way. I'm in no hurry, and the thought of Billy not being here is too hard to imagine. But in so many ways, he's not here now. His eyes have that far away look, and he knows to respond to questions, but many times he doesn't fully comprehend what he's being asked.
He does make us laugh still - intentionally sometimes. But it's often because he just says what pops in his head. Last week, we were at my sister-in-law's (Jerris') house for a graduation reception to honor my nephew, Cory. He just completed his bachelor's degree and plans to be a band director. Cory has been in DCI for several years in the summer, and we often watch dvds of his performances. Billy had just finished eating, and Jerris asked him if he would like to move to the living room and watch a dvd of Cory marching. Without a moment's hesitation, Billy said, "Not really, but I will." Jerris looked so surprised, and I just had to laugh. I looked at her and said, "no filter." We just had to laugh.
Wednesday, May 23, 2012
Saturday, May 19, 2012
Still a Teacher
Anyone in education knows that this time of year is busy, stressful, and exhausting. That would describe my last few weeks, although this past week offered enough time for me to see Billy each day. The week before was packed, and I didn't see him from Monday until Friday - a long time for him and for me.
This week was a good one for Billy also. He interacted with us each day, and he was usually happy. According to the nurses, he's had more anxiety than usual this past week and required more medication for it. By the time I saw him in the evenings, he was usually calm except for one night. He was worried or concerned, but he could never articulate what it was. When I spoke with the evening nurse, he said that one of the other residents had followed him around all afternoon, and that seemed to agitate him. It's so hard to communicate with him now, and that's frustrating. Our conversations are superficial at best, but it's always important to him that I know how much he cares for me.
In the last few months, several people at the nursing home have asked what career Billy had. He's always been there when they asked, and I would say, he was a teacher. Each time, Billy corrected me and said, "I still am." The same thing happened tonight as we had dinner with some long time friends. Billy has known them since he was a child, and we all ran around together as young married couples. We moved away from the area when our kids were very young, and after twenty years in another part of the state, we returned to this area. When we left the area, Billy was in management with a retail nursery that transferred him, and when we returned he had been teaching school for some time, and they asked him how long he had taught school. He was very quick to say, "I'm still teaching." I remember the time when Billy knew he had Alzheimer's, and it was so hard for him. He was angry and frustrated, and he really didn't believe he needed to quit teaching. We've reached a point where he doesn't know, and I think it's easier for him.
Billy's been living in the nursing home for almost four months, and in that time, his cognitive level has declined so much, but he's strangely happier. Several factors play into that I believe. His life is much more routine. He has a set schedule every day, and he doesn't have to be concerned about how he will get somewhere. No more riding the bus or being concerned about getting picked up. He also has constant medical supervision, and that has helped get his medications where they work more to his benefit. When he came to live here in January, he still had some grasp on reality, and as the disease progresses, he is less aware of reality. While that saddens me, it also relieves some of his anxiety.
I've not mentioned the financial side of this disease in a while. Billy was accepted into the nursing home on Medicaid Pending status which meant that the financial director of the home felt confident that Billy would definitely qualify for Medicaid benefits, and that when we could apply and he was accepted, the nursing home would be compensated for the time he's been there. The only part I would have to pay would be his applied income which is basically most of his annuity he receives from Teacher Retirement System of Texas. It's not much, but it has certainly helped make ends meet since the time he had to quit working. It helped with his daycare costs, but it didn't come close to covering it all. I turned in my portion of the Medicaid application along with required documentation in March. The nursing home financial director actually submitted the forms (as is the practice), and he submitted the information they are required to turn in. I received a call about six weeks later from the person who was processing the application. She told me that this was the only application she remembered processing that had all the documentation needed from the family - in our case it was 100 pages. However, the nursing home had not given them a form to document that Billy's entrance into the nursing home was a medical necessity. She had tried to reach the financial director to have that submitted and had been unable to do so. She was calling me to ask why Billy is not on Medicare. I got to tell the long story of why Billy's not on Medicare (or social security disability) AGAIN! Of course the VAST majority of residents in a nursing home - no matter the age - are on Medicare, and if you are on Medicare, the transition to Medicaid is basically showing you have financial need. Because Billy is under age 65 and does not receive Medicare, he must have this letter showing Medical Necessity. She told me that it appears that Billy does meet the financial qualifications for Medicaid benefits, but without the very important missing document, it would be denied. About a week later, I received a letter denying Billy Medicaid benefits. I can apply again, and if all the paperwork is correct, he should qualify. I have to fill out the application again (about 10 pages), but I do not have to submit the documentation again. I remain hopeful. Frustrated and weary - but hopeful.
This week was a good one for Billy also. He interacted with us each day, and he was usually happy. According to the nurses, he's had more anxiety than usual this past week and required more medication for it. By the time I saw him in the evenings, he was usually calm except for one night. He was worried or concerned, but he could never articulate what it was. When I spoke with the evening nurse, he said that one of the other residents had followed him around all afternoon, and that seemed to agitate him. It's so hard to communicate with him now, and that's frustrating. Our conversations are superficial at best, but it's always important to him that I know how much he cares for me.
In the last few months, several people at the nursing home have asked what career Billy had. He's always been there when they asked, and I would say, he was a teacher. Each time, Billy corrected me and said, "I still am." The same thing happened tonight as we had dinner with some long time friends. Billy has known them since he was a child, and we all ran around together as young married couples. We moved away from the area when our kids were very young, and after twenty years in another part of the state, we returned to this area. When we left the area, Billy was in management with a retail nursery that transferred him, and when we returned he had been teaching school for some time, and they asked him how long he had taught school. He was very quick to say, "I'm still teaching." I remember the time when Billy knew he had Alzheimer's, and it was so hard for him. He was angry and frustrated, and he really didn't believe he needed to quit teaching. We've reached a point where he doesn't know, and I think it's easier for him.
Billy's been living in the nursing home for almost four months, and in that time, his cognitive level has declined so much, but he's strangely happier. Several factors play into that I believe. His life is much more routine. He has a set schedule every day, and he doesn't have to be concerned about how he will get somewhere. No more riding the bus or being concerned about getting picked up. He also has constant medical supervision, and that has helped get his medications where they work more to his benefit. When he came to live here in January, he still had some grasp on reality, and as the disease progresses, he is less aware of reality. While that saddens me, it also relieves some of his anxiety.
I've not mentioned the financial side of this disease in a while. Billy was accepted into the nursing home on Medicaid Pending status which meant that the financial director of the home felt confident that Billy would definitely qualify for Medicaid benefits, and that when we could apply and he was accepted, the nursing home would be compensated for the time he's been there. The only part I would have to pay would be his applied income which is basically most of his annuity he receives from Teacher Retirement System of Texas. It's not much, but it has certainly helped make ends meet since the time he had to quit working. It helped with his daycare costs, but it didn't come close to covering it all. I turned in my portion of the Medicaid application along with required documentation in March. The nursing home financial director actually submitted the forms (as is the practice), and he submitted the information they are required to turn in. I received a call about six weeks later from the person who was processing the application. She told me that this was the only application she remembered processing that had all the documentation needed from the family - in our case it was 100 pages. However, the nursing home had not given them a form to document that Billy's entrance into the nursing home was a medical necessity. She had tried to reach the financial director to have that submitted and had been unable to do so. She was calling me to ask why Billy is not on Medicare. I got to tell the long story of why Billy's not on Medicare (or social security disability) AGAIN! Of course the VAST majority of residents in a nursing home - no matter the age - are on Medicare, and if you are on Medicare, the transition to Medicaid is basically showing you have financial need. Because Billy is under age 65 and does not receive Medicare, he must have this letter showing Medical Necessity. She told me that it appears that Billy does meet the financial qualifications for Medicaid benefits, but without the very important missing document, it would be denied. About a week later, I received a letter denying Billy Medicaid benefits. I can apply again, and if all the paperwork is correct, he should qualify. I have to fill out the application again (about 10 pages), but I do not have to submit the documentation again. I remain hopeful. Frustrated and weary - but hopeful.
Friday, May 4, 2012
ROLLER COASTER WEEK
What a week! One sign of a tough week is when you wake up on Wednesday thinking it should surely be Friday. The roller coaster with Billy started last Friday. I got to the nursing home too late to take him to the main dining room, so after he finished dinner, we sat in the little TV room for a while. He was unusually quiet and distant. He answered questions when I asked, but the answers made little sense. He batted at something in front of him, and I thought it must have been a gnat. I asked him what he was hitting at, and he said, "a magnet." I didn't respond to his comment but continued to sit with him and watch Everybody Loves Raymond. He doesn't laugh at all the right times anymore because he doesn't really engage in television, and if he does hear something funny, it doesn't seem to register for him. He swatted again, and I knew I hadn't seen anything. "Another magnet?" I asked. He shook his head and said, "cigar." This is new territory for me. I ignored the next swat.
One of the sweet little residents who talks non-stop in the same tone, smiles, and claps her hands, joined us like she does each evening. Billy usually just smiles and responds to her with a nod. That evening, he seemed annoyed with her, and he responded with something that made no sense, and he didn't smile at her. I left soon after because I really couldn't take it anymore.
I'm sure part of my sadness was from losing our friend, Shelley Reep, a few days earlier and putting my initial grief on hold. I'm pretty good at compartmentalizing my feelings. When I'm at school, we have enough going on that I can easily become engrossed in all that it entails, especially this time of year. Deadlines for so many reports and evaluations, homework for principals' meetings (boo!), closing out this year and planning for next year. The list goes on and on. After I get away and start thinking about life outside of school, it hits me that I have some things to deal with.
The next day, I was concerned about taking Billy to church because the previous week, he would just talk out, and Shelley and I would remind him to be quiet. This Saturday, though, he was fine. No talking out. After church, we went to my sister's to have supper all together - something we've not done in a long time. Billy was in rare form - silly is the best description I can think of for his behaviors. He made faces, he commented about most everything anyone said, and his comments were so completely off base, that we would laugh. More than once, I wanted to cry because it was so random, but like I said, I can compartmentalize for a while. The dam breaks later, though, and I feel that pain you feel when you know someone or something you have cherished is no more.
Something I've come to know in the last few years is that we get little previews of what is to come. I'll see a new behavior and think that maybe I didn't see it correctly. Maybe I'm reading too much into it. Then we'll have a few days where we don't see that behavior, but it usually comes back. Billy was in pretty good spirits Saturday through Monday. I had a meeting on Tuesday evening and couldn't get over to see him, so Shelley spent dinner with him. Later in the evening, she was really down about his his demeanor...she felt he was somewhat unresponsive and distant.
I know exactly what she's describing. Gary Reiswig wrote The Thousand Mile Stare, a book about his family where Familial Early Onset Alzheimer's Disease is prevalent. He describes how the family members get a look in their eyes as though they are a thousand miles away. I see it in those residents who are further along in their disease than Billy. They look in your direction, and they look right through you. Billy's eyes have been different for a few years now. His vision is fine, I'm sure, but when you see his eyes, they have a different gaze about them. We've had a preview of that distance a few times now. When we went on Wednesday, he was back to his happy silly self with dancing silverware, and he's been that way the rest of the week. But we've had our preview, and we know what is coming.
On a lighter side, the unit has three new residents - all women and all interesting and challenging in their own ways. God bless the sweet people who work with them for hours each day. I was reminded of how Billy has changed in the three months he's been there. He's so much calmer than he was, and he is so much less aware than he was. The disease marches on, and we cannot stop it. He still knows his family and close friends, and even though so much of what he says is nonsense, he says, "I love you," often and sincerely. Thank you, Lord, for that blessing.
Friday, April 27, 2012
In Honor of Shelley Reep
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.
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.
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.
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| 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.
Thursday, April 19, 2012
More Good Days than Bad
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.
Wednesday, April 4, 2012
You Look Good for a Change!
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."
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."
Tuesday, March 20, 2012
Spring
Spring has arrived in Texas, and it reminds me of so many things Billy did in the past during the spring. Billy was a nurseryman for many years, and he loved sharing what he knew about plants with friends and customers. His job with a retail nursery (Wolfe Nursery) took us to west Texas where we ended up staying for 20 years - first to Lubbock and then to Midland. I remember when he told me he was being transferred to Lubbock, and I said, "At least it's not Midland or Odessa!" God has such a great way of taking care of what we need, and he knew we needed to be with some of the best folks in the world - West Texans. I can't say that our time in Lubbock was our best, but in retrospect, it had a great deal to do with where we were in our lives. When we found out we were being transferred, we had a newborn preemie son, Andrew, and a three year old Shelley. We moved to Lubbock on Labor Day of 1986 which was the actual due date for Andrew who was already six weeks old by that time. I'm sure I was suffering from postpartum depression, but at that time, we just forged on through those times. Almost two years later, we were transferred to Midland where we would remain for the next 18 years. What a blessing that was! Some of our dearest friends are from Midland. Our spiritual lives developed a tremendous amount through relationships we had in Midland, and we raised our kids in Midland. I could write many more posts about our time in Midland, but I started down this path because of Spring.
Spring was incredibly busy in the nursery business, and Billy spent many hours at work during those days. He could never take off during my Spring Break from school because no one took vacation in the Spring. He was lucky if he got a day off. When he did have a free moment, he would work on a project at home. He loved making things for our yard - a pergola, an arbor, a water fall. He also loved planting up flower beds at church. He would work for hours and hours into the night on planting, so that the beds at church would look nice for Easter Sunday or some other special event. When he started teaching he was busy with sports in the spring - at first coaching them and later on attending games of his students. I used to say that Billy had to coach to support his teaching habit where many coaches teach, so they can coach. He took a job teaching middle school social studies and agreed to coach because that was the position - teacher/coach. He coached seventh grade girls' athletics, and he he had never coached anything except pee wee football for the YMCA. He did an adequate job coaching, and he did an excellent job making seventh grade girls feel important and special. One of his former students that he coached and taught sent me an email recently. She told me about some specific things he did that made her feel successful and needed by the team. When he no longer coached and moved on to teach high school, he would attend baseball and softball games of his students unless he was teaching night school. Billy was never afraid of work. More than once in our marriage he had three jobs - one full time and two part time jobs. Whatever it took to make ends meet, he was willing to do. When he quit working at the Wolfe, so he could attend college full time to complete his teaching degree, he took as many as 21 college hours and worked at a local nursery for 15-20 hours a week. He didn't sleep much, and if he ever got still, he dropped off. One night during our Care Group from church, one of the guys was praying, and all of a sudden, we heard Billy snore. I learned to sit beside him, so I could hold his hand and squeeze it if he started dozing. Another time, we were at the Futrells on a Friday night to watch a movie together. The movie had hardly started before Billy was snoring on the couch. Kathy got a blanket and covered him, and the rest of us enjoyed the movie and carried on as normal. With little sleep, tons of reading and papers to write, Billy maintained a 4.0 in his college work. He was smarter than I ever thought about being. He read voraciously and remembered whatever he read. He was a fabulous writer, and one of his professors gave him an A+ on one of his papers, noting that he NEVER gave anyone an A+.
As spring arrives, I look at my yard, and I miss Billy even more. I miss his vision, his knowledge, his company. I still see Billy every day, but I miss him so much. Emotionally and behaviorally, Billy is better. His sundowning is not as extreme, and he has many more "good" hours during a day than he has "bad." Cognitively, he's much worse. I was talking with his afternoon nurse and the psychiatric physician's assistant this afternoon, and we all see the same things. He makes sentences that we can mostly understand in the mornings, but by afternoon, he cannot finish sentences, and he struggles to tell us anything. I asked him recently if he remembered when we met. He didn't. How long we have been married? He guessed 15 years. It will be 31 in June. A friend asked him recently how old he is, and he said 41? Billy has always had some nervous energy, but he becomes so anxious at times that he just trembles all over. He's developed a tremor in his hands, and while he can still feed himself, he struggles to cut up meat. When I offer to help him, he always lets me do it. On Saturday I took him to see some of his friends at the Cottage. The nurse had called me last week to see how he was doing, and I told her I would bring him by. He remembered the faces, but I don't think he remembered a whole lot about all of his time there. He did remember where the restroom was at the Cottage, and he usually has to be led to the restroom at Lexington Place. For the most part, Billy is happy. He tells us that he likes it there. He says it's a nice place, and the people are really nice. He is treated well, and as is usually the case with Billy, he's well-liked. He has moments where he doesn't want to comply. He's not fond of being showered by them. One of the CNAs was trying to get him to undress for his shower one night, and he said, "I have a wife, you know!" When those things happen, they enlist my help the next evening, and we get him showered.
The best thing that happens everyday is that Billy lights up when he sees me. He is thrilled when I get there. He's also good about me leaving each evening. He walks me to the door, asks me when I'll be back, and gives me a kiss goodbye. I'm delighted, and my heart is broken at the same time.
Spring was incredibly busy in the nursery business, and Billy spent many hours at work during those days. He could never take off during my Spring Break from school because no one took vacation in the Spring. He was lucky if he got a day off. When he did have a free moment, he would work on a project at home. He loved making things for our yard - a pergola, an arbor, a water fall. He also loved planting up flower beds at church. He would work for hours and hours into the night on planting, so that the beds at church would look nice for Easter Sunday or some other special event. When he started teaching he was busy with sports in the spring - at first coaching them and later on attending games of his students. I used to say that Billy had to coach to support his teaching habit where many coaches teach, so they can coach. He took a job teaching middle school social studies and agreed to coach because that was the position - teacher/coach. He coached seventh grade girls' athletics, and he he had never coached anything except pee wee football for the YMCA. He did an adequate job coaching, and he did an excellent job making seventh grade girls feel important and special. One of his former students that he coached and taught sent me an email recently. She told me about some specific things he did that made her feel successful and needed by the team. When he no longer coached and moved on to teach high school, he would attend baseball and softball games of his students unless he was teaching night school. Billy was never afraid of work. More than once in our marriage he had three jobs - one full time and two part time jobs. Whatever it took to make ends meet, he was willing to do. When he quit working at the Wolfe, so he could attend college full time to complete his teaching degree, he took as many as 21 college hours and worked at a local nursery for 15-20 hours a week. He didn't sleep much, and if he ever got still, he dropped off. One night during our Care Group from church, one of the guys was praying, and all of a sudden, we heard Billy snore. I learned to sit beside him, so I could hold his hand and squeeze it if he started dozing. Another time, we were at the Futrells on a Friday night to watch a movie together. The movie had hardly started before Billy was snoring on the couch. Kathy got a blanket and covered him, and the rest of us enjoyed the movie and carried on as normal. With little sleep, tons of reading and papers to write, Billy maintained a 4.0 in his college work. He was smarter than I ever thought about being. He read voraciously and remembered whatever he read. He was a fabulous writer, and one of his professors gave him an A+ on one of his papers, noting that he NEVER gave anyone an A+.
As spring arrives, I look at my yard, and I miss Billy even more. I miss his vision, his knowledge, his company. I still see Billy every day, but I miss him so much. Emotionally and behaviorally, Billy is better. His sundowning is not as extreme, and he has many more "good" hours during a day than he has "bad." Cognitively, he's much worse. I was talking with his afternoon nurse and the psychiatric physician's assistant this afternoon, and we all see the same things. He makes sentences that we can mostly understand in the mornings, but by afternoon, he cannot finish sentences, and he struggles to tell us anything. I asked him recently if he remembered when we met. He didn't. How long we have been married? He guessed 15 years. It will be 31 in June. A friend asked him recently how old he is, and he said 41? Billy has always had some nervous energy, but he becomes so anxious at times that he just trembles all over. He's developed a tremor in his hands, and while he can still feed himself, he struggles to cut up meat. When I offer to help him, he always lets me do it. On Saturday I took him to see some of his friends at the Cottage. The nurse had called me last week to see how he was doing, and I told her I would bring him by. He remembered the faces, but I don't think he remembered a whole lot about all of his time there. He did remember where the restroom was at the Cottage, and he usually has to be led to the restroom at Lexington Place. For the most part, Billy is happy. He tells us that he likes it there. He says it's a nice place, and the people are really nice. He is treated well, and as is usually the case with Billy, he's well-liked. He has moments where he doesn't want to comply. He's not fond of being showered by them. One of the CNAs was trying to get him to undress for his shower one night, and he said, "I have a wife, you know!" When those things happen, they enlist my help the next evening, and we get him showered.
The best thing that happens everyday is that Billy lights up when he sees me. He is thrilled when I get there. He's also good about me leaving each evening. He walks me to the door, asks me when I'll be back, and gives me a kiss goodbye. I'm delighted, and my heart is broken at the same time.
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