August Brings Aggression

It's hard to believe that we are so far into August! Teachers returned to school this past Monday, we had our Meet the Teacher Event last night with what seemed like record crowds, and our students show up on Monday. Seems like yesterday that we were closing out last year. It's also hard to believe the difference in Billy from last August to now. I know that last August it was getting more difficult to care for Billy. Our mornings began at 4:30, so we could leave the house at 6:00a.m. to meet Terry, the caregiver who met us half way to the Rose Cottage each morning. When I think through all of the blessings we've had throughout Billy's disease, Terry is a big one. She would meet us at a QuickTrip parking lot, take Billy for the day, and she stayed with him until I picked him up around 6:00p.m. That was a long day for both of them, I'm sure, and I am thankful for the lovely people who cared for Billy every day during the time he stayed at Rose Cottage. 

It has been nearly seven months since Billy came to live at Lexington Place. The first few weeks were so difficult, and I'm sure I cried every day when I left. As AD takes over Billy's brain, he understands less, and for several months, he was okay with us visiting and then leaving. Recently, he's gone back to wanting to leave with Shelley or me when we leave. It still breaks my heart when I tell him he has to stay, and he looks so disappointed. Last Saturday evening, he didn't do that, and it was easier, but I have to say it's still painful.  I rock along pretty well feeling in control of my emotions, and then I get on overload and I lose that control. I'm sure that stress plays a role in my emotions, too, but lately I really miss having Billy to talk to about all the things going on. He's been my husband for 31 years, and he was my best friend for five years before that. I've shared everything with him for 36 years, and I miss having my husband with me. 

If we could still share our thoughts and feelings, we would share in our complete happiness that Shelley has her first teaching job after working so hard to finish her degree.  He would enjoy watching sports with our son-in-law and our brother-in-law. He loved to joke around with Shawn, and he still wants to do that...he just doesn't know what to say. I would also talk to him about my parents, and their health issues. It's funny that Billy asks my how my dad is about once a week. I don't know if he senses something, or if it's completely random.  My dad is having health issues, and ironically, he has some of the same issues Billy has had with Alzheimer's.  Dad's neurologist feels that he has Lewy Body Disease which is like having Alzheimer's mixed with Parkinson's. I haven't written about Dad in many months because he got upset with me for writing about his Thanksgiving episode, but I have to share that because it's a huge part of our lives right now. My mom's cancer has become active again, and this past week she started chemo - again. This time, the doctors plan to shrink the tumor significantly and then remove it surgically. Mom's health is our first priority right now, and Dad's health is up there also. I find myself wanting to "fix" things, and then I'm quickly reminded that I can't. I can't make all their decisions and shouldn't. Your prayers are needed and appreciated. 

I got a call from Lexington Place this afternoon, and my heart always sinks a bit when I see that name on my ringing phone. They don't call to tell me how great he's been. I've mentioned before that the weekends are a challenge for Billy. He doesn't care for the weekend nurse, but he's been aggressive with the weekday nurses also lately. For several weeks now, the medical staff has been working on getting his meds to help him calm down, and at times he seems better, but he's had some violent episodes lately. That is not Billy's nature, but when the brain deteriorates, and he's faced with strong emotions, he goes into fight or flight mode - lately it's been fight. From what I could understand today, Billy got very upset when the nurse and two aides tried to change him. He doesn't do well with that many people doing that. I'm sure he feels like he's being ambushed.  I plan to talk with the nurse tomorrow in person and try to understand exactly what happened, but Billy ended up with a busted nose and a swollen cheek. He looks like he was in a bar fight. When I got there to pick him up for our usual Saturday evening outing, he had not been shaved and he had blood on his shirt, but he was calm. [His pants have been falling off of him (literally), so I took some smaller clothes for him. When Billy entered LP in January, he could wear waist sizes 38 and 40.  He now wears waist size 36, and I really don't remember him wearing that size since we married.  I'm not sure how much weight he's lost total, and he's certainly not underweight, but I hope he stabilizes soon.]  One of the aides and I got him shaved and cleaned up, and he did very well while we were out and about.  After we shaved him this evening, he looked in the mirror, saw his face, and said, "What happened here?!" He had no clue.   

I don't know the answer to making it better. I hate the thought of making him zombie-like to calm him down, and I hate that he's getting physically aggressive and coming out the loser.  He apologizes after he calms down, so it seems that he knows he did something wrong, but he also has Alzheimer's! 

I'm posting a series of pictures here that my sister took at Rosa's this evening.  I want to hang on to any part of Billy that I have, and when I look at these pictures, his eyes make me sad. He does still laugh and smile some, but we rarely capture it in a picture. 

I love that Billy still kisses me as often as he can! 

He thinks he's smiling in this picture. You can see how swollen his face is.
I have no idea what's going on with my toothy smile! It looks fake. 

We couldn't get him to look up because he was eating Connor's frosty!

Finally! A smile!

And by picture number 5, he was getting tired of it all. 

My heart has been heavy lately. My brain has known all along that Billy would get worse, and I tried to prepare myself, but actually living it is hard. I had a happy moment tonight when he sang at church.  I've not heard him sing in a long time, and for those who haven't known Billy for as long as others, Billy has a beautiful tenor voice. He sang with the praise team for years in our church in Midland, he sang in many weddings, and for many funerals. We sang Blessed Assurance at church this evening, and that is a hymn he has stored in that remaining long term memory. We typically sing contemporary songs which I love, but Billy has always liked the old hymns, and he can harmonize well.  I can hardly stand to think of him not being with me, but it will be a joyous time when Billy sings praises in Heaven. 

Sometimes I wait too long to write, and I end up with more to say than should be written in one post. I also struggle with brevity - I like words, and I love to use them. My apologies ahead of time for what should probably be two posts. The summer has afforded me some time to see friends that I don't see often, and I am so thankful for that. We lived in west Texas for twenty years before coming back to what we consider home - Fort Worth, Texas. Leaving the dry flat landscape of west Texas was not too difficult; leaving the friends we love like family was painful. I'm thankful for all our ways of communicating - cell phones, texts, Facebook, etc, but nothing replaces seeing, talking, and hugging those dear friends. Because it's a six hour trip one way, we don't have that luxury very often. 

Billy in the main dining room.

Our dear friends, Billy and Kathy Futrell...yes, we share names.
We could just say Billy and Kathy squared!

Billy Wayne, Billy Jack, and Kathy!
I can't forget Boo, their cute little Maltipoo! 

The last time our Midland friends saw Billy was March 2011, and I know how difficult it is to visit Billy now, and see him as the disease takes its toll. For a long time, Billy looked perfectly normal physically, and he followed most social norms, so unless  you spent much time with him, you had no idea of his Alzheimer's. The physical aspects of the disease are appearing with Billy - his eyes have lost their luster, he moves very slowly, and he struggles to communicate. He does talk, but he doesn't follow the same topic, and we usually have no idea what he has said. He's also started the quick repetition of a syllable or word like so many of the AD patients do. I remember his mom making alliterations with most of her sentences. She used to tell her kids they looked "clickety clack." From a scientific standpoint, I would like to know why those with this disease have some similar patterns of speech. I learned that when patients with dementia begin cursing after never doing that, it usually means the front right temporal lobe is damaged; that is where our forbidden words are stored. The brain is a fascinating organ created by God, and Alzheimer's is an evil force. 


The unit has a new resident who has changed the dynamics of the group, and I'm not sure if it's this man's influence or just that Billy is changing, but Billy has gone through some noticeable changes the last few weeks. He's combative when the staff tries to change him, and he's strong. I've helped with the process before, and I know he's confused about what is going on. He doesn't want people "messing" with him, and pushes them away. They've learned it's best to wait for him to calm down - then try again. Sometimes it takes half an hour for him to calm down, and I hate that he is wet or soiled during that time, but I also know it's best to wait for him to calm down. The last few weeks, he's been upset when we start to leave. He wants to go with us, and when we say no, he wants to know when we are returning. I nearly always say I'm coming back the next day, and he nearly always says, "That's a long time." He follows me to the door, and several times, he's tried to leave, and I have to hold the door so he won't get out. The last few evenings, though, he's been better about not getting upset. I am thankful for small things like that. 


I'm also thankful for my daughter and her strength through these rough patches. Our hearts are broken over Billy's disease, but we rely on God's bolstering, each other, family and friends, and so many who offer up prayers on our behalf. I'm amazed at Shelley's kindness and strength when she visits and cares for her dad. She's had to do some really tough things lately - like help change her dad's adult diaper. I know that all of us would do whatever we need to do for our parents who certainly did for us, but when your dad is so young, it really stinks. Shelley takes it in stride, tries to make him as comfortable as she can, and never looks back. Billy doesn't want his daughter to see him like that, so she takes his hands and holds them tight, looking him in the eye and telling him to look at her. That way the staff can do what they need to, and Shelley keeps him from fighting them and maintains his dignity. I've helped with the process also, and it is not an easy task. I'm thankful and proud of her ability to do that. She often feeds him his meals, and that's another labor of love. 


I mentioned the new person in the unit...he's a handful - constantly pacing and wanting OUT of the unit. He asks everyone nearby to help him get out. He's getting slightly better because I saw him sitting during a meal tonight. Last week, he ate chicken salad with his hands while standing over me - that was fun. I dodged the plops of chicken salad, and only ended up with some fruit cocktail on me. I'm amazed that his wife was able to keep him home for as long as she did. She said she would block the door with her body, so he couldn't get out of the house, but he got away one day. The police found him in a neighbor's house, and that helped her realize she had to get some help. She certainly has more tenacity than I do. 


Something really sweet has happened with the presence of the new man. I've mentioned walking Betty before - she's a tall thin woman probably in her 60s with beautiful thick silver hair. She walks up and down the hall, shows little emotion - happy or otherwise, and she rarely utters a sound. That has changed with the arrival of the new man. They are smitten with each other. He is gentle and tender with her, holds her hand, asks her how she is feeling, and she smiles. For months, I didn't know she was missing her front two teeth because she rarely opened her mouth. Shelley said they were walking down the hall holding hands yesterday, and Betty was glowing. I notice that when the new man's family visits, Betty sits in the TV room with them. It's wonderful to see her so happy. I know her son visits sporadically, but I don't know if she has any other family. 


It's very sweet to see, and I am happy they have some smiles during the day. Should Billy decide to love on another lady in the unit, someone will need to remind me that I thought it was sweet for Betty and the new man. I may not be as keen on Billy making another lady smile! Actually, Billy is sweet to all of the residents most of the time. The little ladies who can talk tell me what a sweet man he is. One of the ladies tonight brought him a half roll of toilet paper. He took it graciously, unrolled a few feet, and handed it to me. I have no idea why she brought it to him, why he took it, nor why he handed it to me; but the whole thing seemed normal to them. I'm also amazed at how the residents have conversations with each other. One will say something that really makes no sense, and another will respond with a comment that has nothing to do with what was said. They have the cadence of conversation among themselves with no real meaning, but it satisfies a need they have to interact. Very interesting to watch. 


Enough of my rambling and observations for now. I have much on my mind, and I appreciate an opportunity to share. My next post will come soon - ideas are percolating! Peace and love to all. Our God is an awesome God. 

HAPPY BIRTHDAY, BILLY!

This picture is from Billy's birthday last July 12 in 2011. 

This is Billy today - a notable difference, but we see it more in behaviors than in his looks, but the big smile from last year is not seen often. 

Billy and Shelley - our sweet daughter who loves her dad with all her heart. 

Today was Billy's 56th birthday. He had no idea what day it was, and each time I told him that it was his birthday, he was surprised. I picked him up for lunch, and we met Jonathan and Debra Hooper at a favorite restaurant in Fort Worth. Billy and Jonathan have been friends since their college days in the 70s, and the four of us have been friends since before we married. We've shared many meals together in the last 31 years, and today may have been the most unusual visit we've had.  Billy and Jonathan have always bantered, joked, and laughed about whatever the topic. Billy fell into the same type of banter when he saw Jonathan, but he can no longer verbalize what he's thinking, or maybe he's thinking in disjointed sentences. He wants to participate in conversations we are having when we are with friends, and he will say something to get our attention, and as soon as we all look to him for what he has to say, he either trails off, or he says something totally off the wall. Our typical reaction is to laugh, and that seems to work well because Billy has always been pretty funny, but the reality is - it's not all that funny. Alzheimer's Disease has made this 56 year old man seem like a ten year old when he's in social situations. I'm a big fan of keeping your sense of humor during all of this, but some days my humorous outlook wanes. 


I'm good at keeping up a positive front when I'm with Billy and others, but when I get home and stop all my busy stuff, I sometimes have my moments. My last post was about the bittersweet reminders of June, and as I was reading through it again, I realized that any month of the year will have reminders of happier times. Billy's birthday was today, and our son's birthday is in three days on the 15th - always another difficult reminder that we don't have him here. Through blogging, I've met several other women whose husbands have Alzheimer's Disease.  One of them, Karen from New York said not long ago that she had never shed as many tears for anything as she had over AD. Her husband was diagnosed at age 36, and passed away this past February at 47. Karen's two children were very young when they began this journey. Another friend is Delores, and her husband is in the last stages of AD, and even though the term sounds as though death is imminent, a person can live in the last stages for years. Billy's mom was in the final stages for 3-4 years. Delores has days when she is overwhelmed with missing her husband of 49 years, but she sees blessings in so many things that may seem trivial to others. My friend, Sandy from Pennsylvania, cares for her husband who is in the earlier stages than Billy, but she already feels the brunt of caregiving for a person with AD.  Sandy's husband is in his mid 40s, and they have two teenagers. All of us blog about our experiences and the unsolicited journey of this disease, and we all have rather different styles of sharing, but we have much in common - a disdain for Alzheimer's Disease, a strong faith in God, a firm belief in seeing our spouses healthy again, and we have moments of sadness and frustration.  I'm glad I'm not alone on this journey, but I hate that so many are effected by AD. 


I am not sad all the time - I can't be. I have blessings galore, and I am thankful for those. I am very thankful to have enjoyed a nice two weeks away from work, and I'll be ready to go back on Monday. I love getting ready for the new school year, and I get just as excited as I did twenty years ago. We have the dearest friends who walk this journey with us, and our family is always with us.  As Delores says in all of her posts....God is good. 

June

This pictures was made about a month ago. 

Experiences throughout our lives changes our perspective. For so many years, I enjoyed the month of June for many reasons. As a teacher, it was nice to close out the previous school year and know we had a breather before the next year. It usually meant traveling to see family or a brief vacation, Father's Day, our wedding anniversary, my nephew's birthday, and it often signaled a time I would teach a writing institute which I loved doing. 


Several of those events are still part of June, but my perspective on them has changed. I still enjoy that the school year has a beginning and an end. We still celebrate Father's Day in June, but it is a bittersweet celebration. I'm thrilled I still have my dad here to honor on Father's Day, and I know Shelley is happy to have her dad here for that day also, but she is more like a parent to him now. We brought Billy home for Father's Day, and my parents came to visit that day also. We had all of our family here - kids and everyone - and we had a nice simple lunch.  Billy seemed not to recognize this as the house we had lived in together.  Part of that may be due to our multiple moves in the last six years. Before moving here, we had lived in the same house for fifteen years. From what I understand, though, dementia patients often lose their way in homes they've lived in for many years. One of the residents in the unit at LP has been there for a few years, and she frequently asks where her room is. They only have nine rooms and one hallway, so it's not a tricky maze. All the residents' names are on their rooms except for Billy's because he kept taking it off. I found it in his pocket and various places, so I guess they finally gave up. 


Another June event is the anniversary of our son's death on June 6th.  It's been five years since he died, and the pain is more bearable than it was, but you never "get over" the death of your child, and I don't ever want to forget how important he was to us or others. It sort of sneaks up on me, but when it comes, it's amazing how many of the details come back. We do have some great memories of our son, even though he had some really troubled years. I'm thankful for the good memories and laughter Andrew brought into our lives, and I'm thankful he is at peace. 


June is the month Billy and I were married, and it's another day to think about what he doesn't remember. We've been married for 31 years now. When we married, we knew it was for life. We agreed that no matter what came up in our marriage, divorce would never be discussed, and it never was.  I don't remember ever being so unhappy with each other that we would want to part company. We could get very angry with each other, and we argued vehemently at times, but we could always work it out. 


I can now add that this June 2012 has become a month of Alzheimer's Disease taking over much more of Billy's brain. A friend asked me today how long we've been dealing with this. It's been a long time - I first started seeing red flags in the summer of 2001, but the decline was gradual over several years. In the last five years, since true diagnosis, I've seen gradual decline with a few big dips. This last dip has been profound. I've been able to cope through all of the disease, but this last dip has really gotten to me. I find myself feeling sadder and sadder when I visit Billy. I work hard to be upbeat and maintain a positive attitude when I'm with him. For some reason, it hit me harder tonight, and I could not hold back the tears as I visited him. He had no idea that I was upset. He talked and answered my questions, and very little of it made sense. Humor helps, and I can nearly always find it, but I couldn't tonight. One good thing for me is that he still tells me he loves me, and when I told him I loved him tonight, he said, "I love you more." He's said that to me for years. What a blessing. 


The bulleted list below gives a pretty accurate description of what we see with Billy right now. The only one that doesn't really describe Billy is the description of sleep. He sleeps well because he is medicated. The description comes from the Alzheimer's Association website. They describe AD as seven stages. No one really knows how long a person will spend in each stage - it's different for different people. The medical staff is wonderful about seeking answers. When they see a decline they look for infections or reactions to medications. Recent blood work shows that Billy is physically healthy - no infections. He continues to lose weight - almost 25 pounds since January, but he's still a very healthy weight. He eats well, but he walks most of the day. They are adjusting his medications and trying to find a schedule of meds that will help deter his anxiety and nervousness in the late afternoon and evenings. He wrings his hands often, shakes his leg when sitting, and has general anxiety in the evenings. 

Stage 6:

Severe cognitive decline (Moderately severe or mid-stage Alzheimer's disease) Memory continues to worsen, personality changes may take place and individuals need extensive help with daily activities. At this stage, individuals may: Lose awareness of recent experiences as well as of their surroundings Remember their own name but have difficulty with their personal history Remember: It is difficult to place a person with Alzheimer's in a specific stage as stages may overlap. Distinguish familiar and unfamiliar faces but have trouble remembering the name of a spouse or caregiver Need help dressing properly and may, without supervision, make mistakes such as putting pajamas over daytime clothes or shoes on the wrong feet Experience major changes in sleep patterns — sleeping during the day and becoming restless at night Need help handling details of toileting (for example, flushing the toilet, wiping or disposing of tissue properly) Have increasingly frequent trouble controlling their bladder or bowels Experience major personality and behavioral changes, including suspiciousness and delusions (such as believing that their caregiver is an impostor)or compulsive, repetitive behavior like hand-wringing or tissue shredding Tend to wander or become lost I write about my true feelings, but I want all who read this to know that I am okay. I may not be having the time of my life, but I am really doing well. My faith is stronger than ever, and the knowledge that what we have right now on this earth is temporary provides me peace and comfort. I will see my son again, and he will be healthy and praising God. I will be with my husband again - the original unaffected by Alzheimer's Disease husband. I sometimes allow myself to wonder why we are walking through this right now, and I say WE because I do not walk this journey alone. I have the most incredible family and friends who provide a support network for us, and they are just as affected by this as I.  I don't know why Billy has this disease when seemingly his cousins and siblings are not affected by it. He doesn't deserve to have it. Billy was/is not a perfect human being (only one of those walked the earth), but he is the best hearted, do anything he could for a friend or family member, caring, and funny guy I know. As we walk through the unit together on the way to the courtyard, Billy stops to hug or give a pat on the back to at least three of the elderly women who live in the unit. He has a very kind spirit - still. Another wonderful blessing.  I appreciate that you read this, and that you lift us up in prayer. Peace and love to you all. Let's enjoy July!

FATHER'S DAY 2012

Billy has celebrated Father's Day for 28 years, since his first Father's Day in 1984. Shelley was born the August before, and he took parenthood in stride as well as anyone I had ever witnessed....and I had grown up with the best. I have a very special dad, and when my emotions can handle it, I'll post about just how special he is. Billy grew up without a father. His dad passed away when Billy was five years old, and he told me once that he thought a dad was someone who came to visit every other weekend and gave you a silver dollar. 

Billy's dad, Thomas Truitt Knowles, was one of five boys who lost both parents in a car wreck. They were taken in by their aunt and uncle (who happened to be the brother of Ernest Tubb's father, making Thomas and Ernest cousins) who raised them to adulthood. We know very little about the Knowles boys - just what Billy's Granny Tubb told him as he saw her sporadically over the years. Billy did go to visit her at length in her 90s to learn more about his father, and at some point during my unpacking, I hope to find the notes and recordings he took during the visit. Of the five boys, one lived past the age of 40 - Uncle Noble, and he actually had an interest in knowing more about Billy as an adult, but by the time Billy knew that, Uncle Noble was getting older and frail, and may have had dementia. I don't know the reason for the deaths of the other brothers, but Billy's dad died as a direct result of alcohol abuse - his granny told him that Tommy died from Alcohol Epilepsy. I googled the term, and I still don't know that it is a condition, but suffice it to say, he drank himself to an early grave. Billy's sister, Cindy, told us that when Ernest Tubb would come to town, he and Tommy would go out drinking and carousing, and their mom, Aleta, was less than fond of Ernest. While they were not divorced at his death, they were separated, and Billy didn't know his dad well. 

Aleta was a single mom of three children in the 60s - not common for a woman during that decade. She worked hard at a bank for most of Billy's growing up years, and while he remembers her dating some, she concentrated mostly on making a living and caring for her kids. She did remarry when Billy was a junior in college, and Billy grew to appreciate his stepdad, Bill, who had a big blustery personality and loved Aleta with all his heart. 

Billy was a natural from the birth of our kids, and I asked him how he learned about being a good dad. He had to think about it a while because he just did the right things, but when he thought back to it, he knew he had some positive influences, and he also knew that some things had been lacking when he grew up, and he didn't want his kids to miss out because of his absence. When Billy was in elementary school, a neighbor invited him to attend church with him - the Burleson church of Christ, which happened to be in the block behind Billy's house. He enjoyed going to church, and he continued to go and make friends and through the teaching he had at that church, he became a Christian. He could name many of the men in that church who influenced him positively, and his best friends in high school were from church. Ronnie Bryant and Buddy Davis were two he talked about many time, and he was in both of their weddings. Ronnie was in our wedding, and we still see Ronnie and his wife Paula, also a good friend of Billy's from high school, a few times a month. Ronnie's dad was a leader in the church, and Billy thought very highly of him. 

Our kids, Shelley and Andrew, loved doing things with their dad. I will never forget the time when they told me that Dad was the fun parent, and he was. I told them at the time that one of us had to be mature, and I guess it was me! My feelings were hurt a little, but I knew they were right. Billy placed time spent with them over doing chores or paying bills or whatever else might could wait. He worked on projects with them, took them to their practices, and rarely missed a game or a performance of either one. He was the parent willing to chaperone mission trips, band trips, etc. I was the one who didn't mind NOT going. He played pitch with them, helped them with batting (in spite of his left-handedness), and he worked on every Pine Derby car that Andrew ever made. He "helped" them with their science projects, and if they were writing a paper in history, he was better than the internet for information. He could help them pick a topic, tell them all about it, and find resources for them to use. History was his hobby, and his kids were his passion. He told me that he thought his mom had seen him march once in all his years of band. He didn't resent that at all - he knew she was doing the best she could do, but he wanted to be where his kids were. 

One special trip he took with Andrew each year when Drew was a teenager was the Warped Tour. As Andrew became more and more troubled, Billy would say he never should have taken him to the first one. I don't believe taking Andrew to the tour made his issues surface or become worse. I think taking him showed Andrew that his dad was supportive and willing to drive hours to sit in the summer heat for Andrew to enjoy seeing his favorite bands. Billy was not known for being a big spender or a person who planned ahead. More than once, Andrew and Billy spent the night in our van in the Walmart parking lot because he couldn't find a hotel under $200 a night. He saw no need to spend that kind of money when our van had a bed and Walmart had restrooms and a security guard in the parking lot. He would park between RVs, and they slept well.  If Shelley or I had been with him, we never would have done that, but he and Andrew could handle it. 

Billy and Shelley on Father's Day 2012

I despise what Alzheimer's has done to Billy, but I have no regrets about Billy's parenting. He has been a wonderful dad to his kids, and I believe Shelley and Andrew would reiterate that. He was not the perfect parent because none of us are, but he was and is a great dad. He still has his "Dad" moments as my son-in-law, Andrew, said today. When they are leaving from a visit with Billy, he still tells them to be careful. He and Shelley have had a little joke for years where he would say, "Be careful," and she would say, "Careless? Okay, I'll be careless." It started when she was an adolescent, and she would tell her dad to be careful. He would say that to her, and it's been part of their little banter for many years. Just another blessing that we can count. And I need to count them - I get really down sometimes when I see how much Billy has declined, but that can wait for another post, and by then, maybe I'll have a better outlook. Peace and love to you all. Happy Father's Day. 

Things Lost

I've debated with myself this week. How much reality do I want to share in this public forum? I've shared openly about many things, and I've kept some of the details private because they seem too personal. When I started this blog, I wanted to keep friends and family updated on Billy's condition, and I wanted to raise the awareness of Early Onset Alzheimer's Disease. The current term is Young Onset, and I think that is because some people confuse Early Onset with Early Stages, and the two are completely different. I know that I have raised the awareness of this disease for some, and in that in that vein, I share. 

So much is lost with Alzheimer's. At the beginning of this disease, memory loss was the most noticeable of the AD symptoms. As it progressed, Billy lost his confidence. He questioned his ability, but he also denied the severity of the issues he faced. Denial was one of his coping mechanisms. Along the way, he lost his career, his freedom to drive, and he lost his usually calm laid back nature. Although he did not lose friends, he lost the ability to maintain relationships. One of the hardest things to watch is your loved one lose his dignity. Those of us who love Billy (and we are many), overlook these things, but it's still a loss of dignity for him. The only thing that makes it bearable is that I don't think he realizes the extent of it all. When Billy entered the nursing home in late January, Billy could feed himself and he was continent. The nurses and aides assumed he was not, so they started having him wear pull-ups, but they quickly learned he didn't need them. 

It's been a little over four months since he moved in, and his anxiety is much better. He still begins getting somewhat agitated and uneasy between noon and 1:00pm, but the nurse gives him Ativan, he calms down considerably. Once in a while, he remains uneasy for the remainder of the day, but it's rare. While his emotional state has improve, his cognitive abilities have declined rapidly in that time. His speech is noticeably different. He still talks, but his conversations are limited. When I ask him what all he's done that day, he usually says, "Everything." He is able to feed himself, but he needs prompting and help with the utensils. Sometimes, we feed him, and he's fine with that, but I want him to do it for as long as he can. When he stays in the unit to eat, they feed him, and sometimes he won't eat well. When I take him to the dining room, Shelley or I will put the food on his fork or spoon, lay it on the plate, he eats it. We are usually the last ones to leave the dining room because this process takes a long time. I understand why the staff feeds him during the day. They don't have time to go through the process we do. If the food is put in front of him, and he's left to eat on his own, he gets up and leaves the table or he plays with his food and doesn't eat it. Eating is an important activity with AD, and the staff makes it a priority. Fortunately Billy has some extra pounds to keep him going, but he can't continue to lose weight at the rate he's been going. 

A few weeks ago, I noticed an odor that I thought was coming from Billy, but honestly, it's hard to tell when so many of the residents are incontinent. I am blessed/cursed with an incredible sense of smell, and I quickly learned that Billy was the culprit. He had no idea. I hoped it was just a random occurrence, but over the next week, he had several "accidents," and it was time for pull ups. Changing him is what I imagine wrestling an alligator would be without the danger. He gets confused about what is happening, and he doesn't understand simple commands. It is less than dignified for him. For the nursing home staff, it's no big deal, and it's part of the progression of the disease. The majority of the residents in the unit are incontinent. But for us, it's one more loss. It also poses a dilemma for taking him out. He does pretty well going to church with us on Saturday evening and then to eat with family or friends. Up until a few weeks ago, he could go to the restroom by himself, but he really cannot do that now. My friend, Karen, went through this with her husband. He needed assistance for a good while before placement in assisted living, and she grew to appreciate places that had family restrooms. I'm learning they are not plentiful, and when I asked about one at church, I found that they don't have one either. I guess I'll cross that old threshold or restroom door when I'm faced with it. 

I've also had to let go of doing his laundry. I've done his laundry each weekend because I'm particular about how it's done. I also know how mixed up the clothing gets even though all his items are labeled. I often come in to find him in someone's sweat pants that don't belong to him. Even when he has clean labeled clothing in his closet, someone dresses him in those. I like for Billy to look nice; that was always important to him, and doing is laundry ensured that his things were cleaned and spots treated. I can only do it once a week, though, and he has accidents almost daily. The first week after this issue started, I brought home his clothes and was bowled over by the odor. This week was some better, but he ran out of clothes, so I've let that go. The nursing home has staff that does the laundry daily, and they pick up clothing twice daily. I know they can do the laundry as well as I can....I just hate to let one more thing be out of my control.


This disease changes everything about the person who has it, and the people who love and care for them. I know people who pray God will take their loved one home when they've  been in the final stages for so long. I am not at that point yet, but I completely understand it. I am so thankful for what we do still have with Billy. He recognizes his family and close friends. He still laughs and often interacts - he may not make sense, but he does interact. He remains one of the nicest people around. He thanks everyone for anything they do for him, including changing him. In case I've not mentioned it in a while, I hate Alzheimer's Disease, but I will always love this man who is changed by it.


Peace and love to all of you.

Hard to See

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.