Thursday, June 28, 2012


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
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!

Sunday, June 17, 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. 

Sunday, June 3, 2012

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.