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. 

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. 

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.  

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." 

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.

UPDATE ON MY MOM AND DAD

We received a great report from the oncologist today! Mom had two tumors in her abdomen (ovarian cancer but Mom had a total hysterectomy two years ago - another story for another day) when she began chemo treatments. The larger tumor was about 6cm in diameter. The scan from Monday showed that this tumor has now shrunk to 1cm. The other is gone! Praise God! She has two more rounds of chemo, and the doctor feels that will take care of what is left of this tumor. She has no new tumors, and we are thrilled. Chemo is getting rough as it does, but Mom is a tough lady. She's a prim, proper, gentle lady, but she is tough on the inside. She's my model for strength. 


My dad will see the neurologist tomorrow, and I'm anxious to hear about that visit. I wish I could attend all of their appointments, but it's just not possible. Please keep them in your prayers as you have.  We appreciate them and love you for caring. 


I sat with Billy while he ate his dinner tonight, and he looked around the dining room and said, "I like this place." 


Sweet dreams!

NO WEEPING, NO HURT OR PAIN...

The past week has been an emotional roller coaster for me. I've laughed a lot more than I've cried, but the tears have come readily, too. Billy is adjusting very well to his new place, and he is usually calm and happy.  He is always happy to see me, and he makes me feel so special every time I walk through the door of the place. He announces frequently that I am his wife, as though any of the workers haven't heard. He's also okay when I need to leave; he just needs to know when I'm coming back. 


He makes me laugh often - unintentionally - but he laughs with me. Everyday he tells me he's been really busy. He's told Shelley and me of many adventures he's had during the day....one day they were chasing and catching armadillos, and he asked me if I knew that their legs are only so big (holding up his thumb and forefinger to show me how long the average armadillo leg is). One day, he told me about the swimming meet they had, and how he had participated and did pretty well. Last week, we were visiting in the dining area of the unit, and Nelda, one of the residents came over to him and took his hand. She likes to hug him and kiss him on the cheek. She's probably between 75 and 80, and Billy held her hand, looked at me, and said, "This is my wife," indicating that Nelda is his wife. I said, "Oh, I thought I was your wife." Without missing a beat, he said, "I have two."  Tonight we were walking from the main dining room to the unit and took a shortcut through the courtyard. One of the CNAs was taking a smoke break, and Billy looked at her and said, "Can I have a joint, too?" Last night, a new man was at the table with us, and he didn't speak at all. He already sits with Bobby who says nothing after his initial greeting, and Billy felt the need to fill the sound space with comments. Most of what he said made no sense, but at one point, he looked at the new guy and said, "When I walked in here tonight this little dog came up and whizzed on my leg." I never know what he will say, and I'm pretty sure he doesn't know either. 


I'm amazed at how quickly he's losing skills. I notice it when he's eating. He gets confused on which utensil to use...a fork for soup, a spoon for a roll. He insists on using utensils when eating a sandwich. Tonight he was using a spoon to drink his Dr. Pepper. I took him to dinner on Friday night with Shelley and Andrew, and he starting eating the butter out of the container with his fork. The good news, though...he can feed himself. His hands tremble like a much older man, and I'm not certain if it's caused by the disease or his medication. He continues to have some anxiety during the day, and it's to the point that he has to have additional medication for that. The amount of time that he is anxious is greatly decreased from what it was, though. So far, he does well in church and acts appropriately. Karen, my friend whose husband is in assisted living and on hospice, told me she knew it was time to stop taking her husband to church when he started taking off his shirt during the service. 


Another friend of mine named Karen also, is a friend through shared experience. She lives on Long Island, and we met through Wellsphere and stay in touch via email, blogging, and Facebook. Her husband was 36 when he was diagnosed with Young Onset AD, and he passed last Tuesday. He is now among those who have become whole and healthy again in Heaven. I'm so sad for Karen and her children who miss Mike's earthly presence but who also know he now lives in a happier state. That knowledge makes it easier to bear, but it doesn't diminish the pain. So many are suffering from this disease, and it's not just people in their 60s, 70s, or 80s which, by the way, doesn't make it easier.  NO AGE should suffer through this disease, and no child should see her parent become a child.  


I am always uplifted during praise but emotional also. I love our worship service on Saturday evening, and so many songs have deep meaning to me after the losses our family has experienced the last five years. I miss my grandmother who was so wise, my mother-in-law who was strong and vibrant before Alzheimer's struck, my brother who lost his battle with colon cancer much too young, our son who lost his life through addiction to alcohol and drugs, and I miss each part of Billy that has disappeared. I cannot hold back the tears when we sing "Hold Me Now" by Hillsong...  


And sometimes, when the tears start, they don't stop for a while. I'm better now about allowing myself that time to grieve. A little of it is healthy, but I don't allow myself to stay there for long. God has entrusted me to be Billy's wife and caregiver. I am honored to do that, and I have to stay strong to do it. 


During the stress of major life events, I tend to compartmentalize my challenges. One of the challenges our family has faced the last several months is my mom's cancer. I wrote about it for a while, and I shared that my dad struggles with dementia. It became too difficult for me to write about, so I didn't. I do want to share that mom has completed six of eight chemo treatments, and her last scan showed that the tumors in her abdomen are shrinking. I will go with my parents to the oncologist this Wednesday morning to get the results of the scan my mom had today. Please pray with me for those tumors to be gone. Chemo has taken a toll on my mom and dad, but Mom has certainly been a trouper through it all.  What a blessing it would be if she were free from those tumors and no more chemo or surgery would be needed. God is bigger than cancer, and He can do it. My dad will go to the neurologist again this week, and I pray for intervention there as well. So many prayer warriors read this blog, and I ask you to pray for my parents. 


All is well for me. Spring Break is on the horizon, and my sister and I will be taking a trip together. I know Billy will be fine without me, but I will miss seeing him those few days, even though I need a break. Someone asked me today if I get lonely. I honestly don't have time to be lonely. I get home around 7 or 7:30, and the evening goes too quickly. God is always good, and I am at peace. 


Peace and love to all. 

How's it Going?

This is the question I'm most asked. How's it going?  How's Billy doing in his new place? The day I took Billy to Lexington Place on January 24th, I never dreamed that he would be doing so well in less than a month. The day that Shelley and I took him there and tried to explain the decision to him was horribly painful.  The pain was not quite as intense but comparable to the loss of our son in 2007. The pain was physical, and my heart hurt. Shelley and I cried and cried.


 My friend, Karen, who had to place her husband in assisted living over a year ago, had warned me that it would be awful. She also assured me that it would get easier. I wanted to believe that, but it just kept hurting. I would start questioning my decision, and then I would remember the challenges of caring for Billy and the very real lack of funds to continue paying (and owing) for daycare. The first evening we were leaving Billy, the director of nursing spent a while talking with us. She told me this would be more painful for Shelley and me than it was for Billy because he would forget. She was right about that. 


For the first time in a few years, Billy is calm nearly all day. Alzheimer's causes great anxiety and agitation for its victims. They pace, wring their hands, perspire, and worry in general. Sometimes they snap at others just because.  The good thing about Billy being at the new place is that he is observed by medical staff all day. He sees the doctor's PA every Monday, and he sees the psychologist's PA every Tuesday. They can adjust his meds as they see the need where before he lived there, he saw the doctor every 2-3 months. I could call the doctor, and her nurse would relay messages, then we would play phone tag for a while until we touched base again. Now, the PA can see him on Tuesday and start his new dose or new meds by the next dose. 


He eats his meals at the same time every day. He has activities that he can do. He's become the "helper" because he's not as advanced in his disease as most of the residents in that area. He helps put away trays, moves chairs, and visits with the residents. During meal time the staff puts music on instead of the television. So many AD patients have issues with eating, and they don't need the distraction of the television. One evening they were playing old time country and western, and Billy shared with the staff that Ernest Tubb was his second cousin, or as Billy says, his first cousin once removed. Billy's dad, Tommy Knowles, was Ernest Tubb's first cousin, and back in the 50s and early 60s when Ernest would come to Fort Worth to perform, he and Tommy would go out honky tonking.  Needless to say, Billy's mom was less than fond of old Ernest, but that's another story altogether! The staff got a kick out of Billy talking about cousin Ernest. I love that so many of the residents who hardly remember their own names can sing along with these old songs. Walking Betty rarely talks, but she smiles and sways to the music. Smoking Betty sings along. 


I go visit Billy every evening with very few exceptions.  Sometimes I have other obligations like school board, PTA, etc. Once a month, I go to dinner with Karen, and when I don't make it to Lexington, Shelley goes to visit.  She goes most evenings, too, but sometimes it's too much with her schedule. If we get there by 5:00, we take Billy to the main dining room, and he seems to enjoy that. Many evenings he's the only male resident who eats in there, and the little ladies love him because he smiles and greets them as though he's known them forever. I'm stopped frequently by staff members who tell me what a sweetheart Billy is. They are right, you know. Billy is one of the best people I know. He has a big heart, and he loves openly. I know the time may come when he has a glazed look in his eyes as so many of the AD residents have.  They don't seem to recognize anyone and struggle to communicate. That is hard for their loved ones, but they just keep on talking and loving on them remembering how they were. 


I can truly say that it's getting easier...I don't know if I can say it's better, but it is easier. There are times when I have moments of envy. I wish I could travel with my husband...we had great times when we took trips. I wish we could have a date night where he surprises me with dinner and a movie. I still remember the last time he brought me flowers, and I loved it.  He really couldn't remember why he had bought them for me...but it didn't matter; it was a beautiful surprise. I get over those moments pretty quickly when I think about the blessings we've had and still have. Billy still recognizes me, and he is always quick to tell me how much he loves me. He can still hold my hand and give me a hug and a kiss. The rate of his decline is less than some. Some with Early Onset decline so rapidly that they pass away in five years. Billy is pretty healthy other than this insidious disease. I've mentioned Karen several times in my posts, and her husband was put on Hospice about a month ago, and he's not expected to live for more than about six months. I'm thankful I'm not facing that at this time. 


I am blessed. 




Peace and love to all. 

I took Billy to Sonic for a hot fudge sundae this afternoon! We enjoyed a lovely Sunday afternoon.