Thursday, November 24, 2011

An Interesting Week of Celebrations and Thanksgiving


Last Friday was an early release day for students followed by a wonderful potluck feast with faculty and staff followed by teacher staff development.  Since the next day was to be Shelley's official day of graduation from Louisiana Tech, I planned a little celebration at our home for that Friday evening.  I must explain the magnitude of this celebration because it was a long time coming!  I know that many young adults graduate with their bachelor's degrees frequently, but Shelley's graduation is extra special.  

Shelley graduated from high school in 2001 and like many of her classmates, she went off to college that first year.  She loved her freshman year at Abilene Christian University, and she worked out a way to study abroad in Uruguay during her sophomore year.  What a fabulous experience that was!  Shelley had the opportunity to experience so much of South America during that semester and completed 16 hours toward her degree.  The romantic atmosphere led to her eventual marriage to a young man she met on this study abroad.  They married after their junior year at ACU, and like most students who marry during their college years, they promised to finish their degrees right away.  However, both were somewhat immature, and when her husband joined the Air Force, he was away for training or deployments often.  Of the four years they were married, they lived together for about one and a half years.  After one of her husband's deployments, Shelley was faced with the death of her brother.  He died in June 2007, and her husband was deployed again in August.  In February, he called her one morning and said he wanted a divorce.  Even though they probably would have had the same outcome eventually, Shelley had no say in the matter.  This is the point where she lacked two classes to complete her degree, and she was faced with no income, a divorce, and she was still trying to handle her grief.  The classes she lacked were math classes, and she had struggled with math since third grade. 

Shelley had always been very close to my brother and his wife. During this tough time, we were watching my brother's struggle with stage four colon cancer, and in May of 2008, he was relieved of his pain while we experienced another loss in our family. This was another setback for Shelley - difficult to tackle those two classes of math when you're overwhelmed with grief.  By the next school year in August, Shelley had been hired by our school district as a special education aide.  She's worked hard and learned a great deal in this job, and she's also found her niche.  She loves working with special needs children, and she is a natural with them.  She also got back into having a social life, became involved in church activities, and met some of the greatest folks ever.  Through all of this, she met Andrew, who became her husband in July of 2010.  He loves the Lord, and he loves Shelley with all his heart.  He's provided  much needed stability and support for Shelley, and they've been great for each other. She also knew that in order to realize her goal of teaching, she had to complete her degree which meant facing those two math classes.  She found a university that provides online courses accepted by Louisiana Tech.  With a huge amount of support and help from my sister-in-law, Jerris, she finished the Algebra class in a month.  The next challenge was statistics, and one of my assistant principals, Roby, tutored her through that one.  

Shelley and my mom. 
Praise the Lord, Shelley has a degree which means she is back in her teacher certification program which means she is qualified to be hired as a teacher.  God is good.  We celebrated with a little party last Friday evening, and thus began our Thanksgiving Break.


Every few years, I have a hankering to fix a big Thanksgiving feast, and that hankering presented itself this year.  My parents would join us along with my sister and her family, and my sister-in-law and nephews.  Shelley and Andrew were to spend the day at his parents this year.  I love planning special meals like this, and I always make too much food, but we eat leftovers for days afterward.  I was really happy to have the week off to prepare, and my parents came on Wednesday before, so we could take Mom to be fitted for a wig.  She is rapidly losing her hair with her chemo treatments.

Mom and Dad got here Wednesday morning, and my sister, Leslie, joined us.  Our first slight challenge was getting my dad to let me drive them to downtown Fort Worth.  I've mentioned my dad's "memory issues" before, but we are beyond that at this point.  Dad has dementia, and while I have a lot to say about that, I'll proceed with the Thanksgiving story. After some discussion, I was allowed to drive, and off we went to the American Cancer Society where we found a lovely wig and hat for my mom.  From there I took them to Paris Coffee Shop for a yummy lunch, and we had a delightful time.  With each stop, my dad would hold out his hand for me to hand the keys back to him.  After lunch we went back to my house where Shelley was baking and preparing dinner for all of us that evening.  Dad was pleasant and joined in our conversations throughout the afternoon.  Later in the evening, when it was just Mom, Dad, Billy, and me, Dad asked Mom to come back to the bedroom.  I didn't pay a lot of attention to it, but a few minutes later, as he sat on the couch with me, he started going through his wallet.  He looked at my mom and said, "Are you coming?" This is the point where I realized that Dad was sundowning.  He does this pretty often, but Mom has little opportunity to tell me what is happening because Dad is always by her side.

Mom told him she was not going to leave, and Dad said he was going back to the hotel.  I tried to talk to him about how he had planned to stay the night - that was why he had packed his clothes and medicine. Dad went out to the car, and I followed him.  He was unreasonable, argumentative, and he was determined that he was leaving.  I managed to text my sister and told her to come right away.  She thought maybe bringing her little ones over would offer a diversion, so I got Dad back into the house by telling him that Claire and Connor were coming over to see him.  The diversion worked for 10 minutes maybe, and we were back at it.  Mom agreed to talk to Dad out in the car, and we kept checking to see if everything was okay.  Eventually, we heard a car door close, and Mom was headed back into the house.  We thought Dad was behind her when we heard his car starting, and he was leaving.  Dad depends on Mom to tell him how to get places.  He gets lost unless she tells him where to turn, and then sometimes, he argues with her and ignores what she says.  Mom assured us he would probably go around the block and come back, but my sister decided to follow him.  Mom said she would go, too, but by the time they got in the car and left, they couldn't see him.  At this point it was a little after 9:00 p.m.

We waited an hour, Mom called the police, and Leslie and I drove for about an hour looking for a needle in a haystack.  The police came to the house and took a report, and we waited.  Mom called her house constantly after about 2 hours.  The drive from our house to theirs usually takes 90 minutes, and that's where we assumed he was headed.  During all of this, Billy was very sweet and pretty calm.  God takes care of those things.  We settled in, Leslie went back to her house, and we went to bed.  Mom knew she wouldn't sleep much.  The officer who had taken the report was to call her back before he went off duty at 1:00 a.m. He called at 12:30 and again at 2:30, and Mom continued to call her house throughout the night.  

On Thanksgiving morning, Mom was up and dressed early.  I asked her what she wanted to do about lunch.  We could postpone, cancel, or just go on.  She felt we should go ahead and we would figure it out as we went.  She called the police again and was told a detective would be assigned to the case by the end of the day, and that person would make the decision on a Silver Alert.  She called the Corsicana police and made a report.  They went to the house to see if he might be there, and they called her back to say they found no one there.  I continued preparing lunch, but I had lost my motivation.  I sent texts to some of my close friends  and asked them to pray fervently for Dad's safety and his return home.  I asked God to keep him safe from all that can happen to an elderly man with dementia who trusts people to be good.  Through all of this my mom remained a pillar of strength, walking through each step, never breaking down.  Some people tell me that I am a strong woman, and I've had this type of example throughout my life.  I could write a book about my mom's strength and faith, and some day I hope to do that.  

Around 12:30, my mom made her regular call to the house, and my dad answered!  What a faithful God!  He told her he had been there for about 20 minutes, and I heard Mom tell him NOT to come get her.  We ate a quick huge lunch, and Leslie and I took Mom back to Corsicana with Mom calling Dad every half hour to make sure he stayed home.  When we got to the house, we sat down to talk to Dad for a while. Mom asked that we not get him upset again, so there was no mention of his need to stop driving.  Leslie and I went out to check the car for dents or cracks - nothing we could see. She found three maps that people had drawn for Dad at various places he had asked for help.  She looked at the caller id, and she found three numbers of people in the metroplex who had phoned their house.  Dad told us he was tired after driving for 15 hours.  He mentioned the other people who were with him - hallucinations or delusions.  He mentioned Austin (one map showed how to get back to Hwy. 281), Abilene (one map showed how to get from Weatherford to Corsicana), and he said he tried to call the house several times and Mom never answered.  She kept telling him that she was at my house, and it never seemed to register with him.  He had talked about the event he attended being really boring, and that everyone had to share the phone, so they only got a few seconds to talk.  I believe he did drive for 15 hours, and it looks like he went to Austin, back up to Weatherford (probably seeing signs that mentioned Abilene), and then back to the metroplex.  The phone calls from the metroplex were every half hour starting at 6:30 a.m.

There is no question about Dad's dementia being worse.  The question is what has to be done from this point.  My personality wants to take over, and I have to rein it in a bit.  Mom has to make these decisions.  She is overwhelmed with Dad's condition, a cancer diagnosis, and now dealing with the side effects of chemotherapy.  Dementia has affected Dad differently than it has Billy.  It's changed his good nature, and he's angry often.  Billy gets out of sorts, but he's pretty compliant. Please pray for clarity of decisions for my mom, for her strength and health, and for my dad.  

I apologize for the length of this post, but I couldn't abbreviate it.  I find it all important to define the state we are in.  Praise God for his protection and for getting Dad home safely.  I spoke to one of the men whose number we found on Mom and Dad's house phone.  He said he couldn't tell that Dad had dementia. Dad can still get through social situations like Billy can. Have I mentioned lately that I hate Alzheimer's, dementia, and all related diseases?  It steals the people we love.  

Thank you for caring, praying, and reading.  

Monday, November 14, 2011


In the season of giving thanks, I must take a moment to count my blessings. I am not thankful for Alzheimer's Disease, but I am thankful for so many kind people who have done so much for Billy and our family.  

When I faced the reality that Billy was getting worse, and he most likely had Alzheimer's, I was terrified about him losing his job.  Having never been financial wizards, I didn't know how we would make it on my salary alone...we had lived on two salaries through our entire marriage.  Did I forget that God promised to take care of us? Not really, but I have a really bad habit of handling things myself.  Billy did, indeed, have to quit working, and we've never gone without a meal, a roof over our heads, or a vehicle.  

Many people pray for us, and I feel those prayers.  In spite of the difficulty of dealing with AD, I am at peace that we will be taken care of.  When this journey begins, it's easy to feel hopeless and wonder how in the world things will work out.  I didn't imagine that Billy would agree to attending an adult daycare, but now, it is as routine as getting dressed every day. I had no clue what an adult daycare looked like as far as activities and caretakers, and I am so thankful for the people who love Billy and work with him every day. 

I am thankful for...

  •  family members and friends who care enough to read about Alzheimer's and become more knowledgeable, so they can communicate with Billy and help me in any way.
  • old friends who can still make Billy feel like he's the very same guy he always was.
  • those who wait patiently for him to get out the words he's trying to speak and then smile as though they have a clue what he said.
  • colleagues who listen to me talk about Billy and do all they can to make this journey easier.  They take up the slack when I can't keep it all together. 
  • people who have given in monetary ways, so I can pay for Billy's daycare or buy the medicine he needs or buy the gasoline to drive so often to take him and pick him each day.
  • for the various people who transport him through MITS in the afternoons and evenings...always with patience and a smile.
  • for Terry, the main caretaker who picks him up at 6:15 in the morning, and patiently deals with him until 5:00 in the evening.  
  • for our daughter, Shelley, who has taken every opportunity to learn more about how to be a caretaker and forged through the pain of seeing her dad go from her protector to someone who needs help fixing his plate. 
  • for our incredible son-in-law, who unselfishly spends time with Billy watching ballgames, follows him to the restroom when we are in restaurants, and always treats him with great respect.
  • for our small group from church who love us and provide a meal for us each week, so that my stress level is lessened.  
  • for my dear friend, Carol, who gives me a credit each month on, so that I have a book to listen to as I spend many hours in the car.
  • for our church and the way it ministers to so many, including me.
  • for our friends who have remained by us no matter how uncomfortable it might be.  It's not easy having a conversation with an Alzheimer's person. Thank you so much!
  • for our loving families who spend time with us, and provide some normalcy for me. 
  • for those who read this blog and raise their awareness and share it with others. 
  • for the privilege of caring for Billy.  God trusts me enough to take care of him, and I know He is with me all the way.
God bless you all as we spend Thanksgiving with our loved ones next week.  

Tuesday, November 8, 2011

National Alzheimer's Awareness Month

"...Alzheimer’s disease now stands as the only cause of death among the top 10 in the United States without a means to prevent, cure or even slow its progression."

Powerful statement.  True statement.  I attended a Caregivers Seminar last week with an expert in the field of dementia.  She addressed the gravity of an Alzheimer's diagnosis early in the session because she felt it had to be said, and she didn't want to end the day on that note.  Her words were that an Alzheimer's diagnosis is fatal. If a person does not die from another ailment, that person will die from Alzheimer's because the brain just quits on the body.  The lifespan after diagnosis is from 3-30 years, and those are not typically quality years. 

I apologize to those of you who read my Facebook posts as I repeat myself.   So many people are facing this disease, and not all of them are old and gray even though it's often referred to as the Gray Tsunami. Early or young onset is striking many people in their 40s and 50s, and tragically, it hits in the 30s for some.  Our speaker last week, said the youngest early onset patient she had worked with was 25. 

Be aware, and share your awareness with others.  Thanks to so many of you who read my blog, we raised over $1300 for research to end Alzheimer's Disease.  I will advocate with every opportunity because I don't want others to experience this loss. I'm posting a picture of Billy.  He still looks so young, and at 55, he should have so much ahead of him.  Actually, we should have so much ahead of us, but I don't allow myself to go there. Thank you for reading, praying, and remembering.  
Billy Knowles - Dallas Cowboys fan, Native Texan, Lover of Bluebell Ice Cream, Nicest Guy Alive, and victim of Young Onset Alzheimer's Disease.

Sunday, November 6, 2011

Been Awhile

My last post was October 17th, and I usually don't wait so long to write, but my abnormal life has been more abnormal than usual of late.  I did enjoy the most wonderful weekend with two of my closest friends back in October.  I've known Kathy and Rhonda since our youngest kids were about 2.  We all turned 50 within a few months of each other, and we had planned for a few years to do something special that year.  That was the year we lost our son, Andrew, and so many things happened.  Two years ago, we had it planned, I had my plane ticket, and then Billy got much worse, and I got sick.  Rhonda and Kathy went without me, and I grieved for a while!  I had decided that I couldn't be stopped this time, and thankfully, God worked things out for me to go. Shelley spent one night with her dad and got him on the bus to the Cottage the next morning.  Billy spent the weekend with his sister, Cindy, and I believe it was good for both of them.  He did very well with her, and I was so relieved and grateful.

The Shiny Girls Three
Rhonda Fletcher, Kathy Futrell, Kathy Knowles
Rhonda and her husband, Rick, have a beautiful home in the mountains of Ruidoso, NM, where we stayed.  To say it was fabulous would be an understatement.  The weather was perfect, the scenery was gorgeous, and my stress level was zero!  It was lovely, and I can hardly wait for another trip with these gals.

After many tests, my mom has been diagnosed with cancer of unknown origin, and after a group of various specialists met to discuss her tumors, the decision was made that surgery on the tumors is too risky.  She starts with chemo this next Wednesday, and her oncologist feels the tumors can be taken care of with chemo...not sure how many rounds, but they will begin with four rounds and then do another scan.  Our only real reference point for chemo treatment was my brother who was on chemo for the two and a half years he lived after diagnosis of stage four colon cancer.  It made him very ill at times; he dealt with neuropathy, cold sensitivity, and severe nausea at times.  I don't believe Mom's chemo will be as rough, but it's still unknown. 

Getting Mom well is our priority, while we also try to do what is best for my dad, but he is more than resistant.  Dad's health has declined tremendously in the last 14 months, and a large part of that decline is cognitive.  Since I've had some experience with cognitive issues in the last few years, I recognize some needs, but my mom has more than she can handle right now.  Please keep us all in your prayers as we sort through and prioritize what needs to be done.  For now, I've put my emotions on hold because I have too many decisions to make.

Shelley and I attended an awesome conference on caregiving last Friday.  The speaker/teacher was Teepa Snow who is by trade an occupational therapist and has 30 years of experience working with dementia patients.  We hung on every word she said, and she gave great suggestions on handling so many situations. The social worker and main caretaker from the Cottage were at the seminar, and at different times during breaks in the day, they came by to tell me they kept thinking of Billy in so many of the scenarios Teepa gave.  The challenge for me is to implement the techniques and make them automatic.  

Today was a particularly difficult day.  My sister and I had gone to my parents' yesterday to present some possible scenarios to my dad mostly, and it was a little stressful.  I wanted to do nothing today but stay home and try to catch up on some household chores.  Billy wakes up every morning wondering where we are going and what we'll be doing.  Even though I may tell him that we are staying home, it doesn't process.  After a few hours of the questions, we did go get a drink at McDonald's, and then we dropped by my sister's house.  I was hoping he might be somewhat content to watch the Cowboys game with my brother-in-law, and I went outside with my sister to push my niece and nephew on their swings.  Billy couldn't attend to the game...he came outside about 3 or 4 times to "see what I was doing."  He sticks like glue, and at one point during the day, I told him I had to go to the restroom.  In less than five minutes, I heard the front door open (not a good sound when he's alone), and a moment later, he was back in the house calling for me in a distressed tone.  I yelled that I was in the restroom and would be right there. He cannot remember from one moment to the next what I say. 

 With the pretty weather today, and knowing that bulk trash pickup is tomorrow morning, I had a strong desire to go through some boxes in the garage.  That was futile because my shadow accompanied me, and I got more frustrated.  I had asked Billy to allow me to work in the garage alone, but he doesn't understand that.  At one point, I snapped at him, and the look in his eyes made me ashamed of myself.  I realized that the garage can wait, and Billy needs me to be with him...even if it's just to sit and do nothing.  

Pray for me to be better at meeting Billy's needs and use the techniques I've learned.  Please keep my parents in your prayers as we work toward positive solutions for all the issues we are presented.  Thank you to all who read my blog...your prayers sustain me, and your thoughts and comments keep me sane.