Thursday, December 22, 2011

Keeping it real...

I'm not a fan of catch phrases, and I make an effort not to use them, but the title of this post says it well.  I've not written in a few weeks for several reasons.  Mostly, I've been too busy and too tired to write coherently when I finally have the time to write.  I've also hesitated to write because I haven't felt particularly positive lately, and I truly want to be positive.  And finally, I've struggled with articulating the reality of this disease...thinking that maybe if I just didn't put it in black and white, it might not be real.  But, I need to face the reality that this disease is marching spite of my trying not to see the decline in Billy.  

One of the many blessings I've received lately is to become reconnected with one of my good friends from high school and college.  Karen and I met when we were silly freshman girls in high school.  Her dad was our preacher in the church we attended, and we were good friends throughout high school.  We attended the same university and even roomed together for a semester.  After we graduated and went our separate ways, we sort of lost touch.  I knew she lived in this area, and we ran into each other several years ago at a Texas Rangers game, but we didn't really reconnect until Facebook made that so easy.  Karen read one of my blog posts one evening, and sent me a message saying it was like reading what she had been going through the past few years.  She had just placed her husband of 25 years in an assisted living facility.  We meet once a month for dinner and as much conversation as we can fit in.  Somehow it helps to know that she has been through these same issues, and she's still sane.  We were talking about the similarities of caring for a person with dementia and caring for a toddler.  With Alzheimer's, the skills just go in reverse, and like a toddler, you really can't let that person out of your sight.  Of course the big difference is that you teach your toddler, and eventually, they learn more and more.  The total opposite occurs with Alzheimer's...learning does not occur. I used to compare living with Billy to the Adam Sandler movie, 50 First Dates, but that doesn't ring so true anymore. It's not the same each day.  I realize that what he could do yesterday, he may not have a clue about today.  

We have a habit of eating dinner on our TV trays, and when I clean up the trays, Billy usually has lots of crumbs under his tray and chair.  This evening, he wanted to help clean it up.  I got the broom and dustpan, and he swept up the crumbs.  He got most of the crumbs into the dustpan, and then he just dumped them out on the floor again.  He struggled and struggled to get those crumbs on the dustpan, and I asked it I could help him. He was very quick to hand over the equipment, and I got it done.  On the other hand, I was so surprised a few minutes later when he realized the trash needed to be taken out, and he did that.  He also remembered where the liners were, got one, and put it in the can.  That amazed me because he rarely remembers where the liners are even though they remain in the same place.  

The biggest decline we see right now is Billy's anxiety and his lack of coping skills.  He's very quiet in the morning when I'm taking him to meet Terry, but if we go anywhere in the evening, he's nervous and irritable.  The drivers who bring him home in the evenings mention how nervous he is and how often he tells them how to get to his house.  Sadly, he doesn't always know how to get to our house. He argues about the direction I'm driving sometimes, and he tells me I should have turned before.  He warns me about stop signs about 2 blocks before I get to them. He grabs the handle above the side window, and he tells me to slow down. I'm really not that bad, but everything seems to be magnified to him.  My son-in-law is the most patient of all of us with Billy telling him he's going the wrong way, and giving him incorrect directions throughout any drive.  My daughter is the least patient, and I'm somewhere in between.  

About half (maybe less than that) of what he says is coherent and makes sense.  It may not fit into the current conversation, but it makes some sense.  The rest of what he says does not make sense.  He puts real words together, but we don't know what he's saying.  If he laughs, we laugh with him.  He often repeats the last word in his sentence as though it's just part of the cadence.  "I didn't want to go there anyway anyway." 

I fixed him a snack tonight, and he gave me a side hug and told me that I'm a great sister.  Sometimes, in the evening, he'll look at me from across the room, and ask, "Where's Kathy?"  I usually tell him that I am  Kathy, and he'll act like he meant the other Kathy - he has a sister named Kathy.  

Even though I've become accustomed to the madness, sometimes I hardly remember life before the Twilight Zone.  Those days when we had husband-wife conversations seem so long ago.  I miss having him as my partner and companion to laugh with and to just talk with. 

So that is the reality at the moment.  We will go to his sister's, Cindy's, on Christmas Eve, and he'll see his family that he sees once a year.  That should be interesting.  Christmas day will be spent with my family, and I plan to break up the day by coming home for a few hours.  I'll write about the holiday celebrations soon....praying for an unusually calm Billy on those days.  

Peace and blessings to all this season.  

Tuesday, December 6, 2011

Identify the Need

This past weekend was tough.  Billy's anxiety was beyond what I remember it ever being.  He started the day with pacing and questions, and doing everything quickly and jerkily (is that even a word?).  My patience was wearing very thin, and he sensed that, so along with anxiety, he was apologizing constantly which makes me feel guilty and irritates me at the same time.  His dependence on me increases weekly it seems.  He's forgotten how to turn the water to hot in the shower, so I get that started for him, or I just leave it running after I finish my shower.  He puts shaving cream on his face, picks up the razor, gets distracted, rinses off the shaving cream, and starts the whole process over again.  He turns the water on full blast and forgets to turn it off.  I put toothpaste on his toothbrush, and he does pretty well with brushing as he paces around the bedroom.  I put mousse in his hair for him because when he puts it on his hand, he can't remember if it's shaving cream or something else.  I hand him his deodorant, and he puts it under his arms.  I signal for him to put it in the drawer after that, or he puts it on his face. 

Today I took him to the dentist for a check-up with my own anxiety because Billy's teeth have always been bad. Many people with Alzheimer's have dental issues, and I've neglected that for Billy.  I've been so engrossed in dealing with the behaviors and the progression of the disease, I've just put the dentist on the back burner.  Not a good thing.  Billy has many cavities, including some underneath crowns.  He has an exposed root - don't know where that tooth is.  He needs root canals, crowns, extractions, and fillings. Insurance covers 50% up to $1000 a year.  The first procedure takes care of more than half of that.  Merry Christmas to the Knowles!  And the dentist mentioned his dire need for flossing and an oral rinse that is to be the last thing in his mouth at night.  That should be fun to add to the nightly ritual.  

When I reflect on the weekend, I know we had too much going on.  Friday night we had family at the house, and I'm sure he was as tired as anyone.  Saturday, we had something to attend in the morning, I needed to run errands, so he stayed with our son-in-law for a few hours in the afternoon, and that evening we went to a wedding.  This may be the last wedding I take him to. Social situations add anxiety for both of us.  Billy has lost his filter in many situations.  After the wedding ceremony, he looked at me and started to say something...."Do you think they have.....a...a...a...a place to pee?"  A bit crude, but he did get his message across.  We spend a lot of our time looking for restrooms no matter where we are.  This wedding was in a tent, and I was so thankful it was attached to a building that had a restroom.  He needed me to go with him, so off we went.  He was about the fourth person in line for the facility, so we had a few minutes to wait.  While we stood there he asked just about anyone who walked by if they knew where a restroom was. But he stammered around about it, so they would stop, and I would try to redirect him.  When we returned to our table, he introduced himself to the couple sitting next to us ... again. He ate his food, and when he finished, it was time to go somewhere else! It's sort of like he has severe Attention Deficit Disorder.  He's distracted easily, even in the middle of a sentence.  He'll start out talking about one topic, see something in his line of sight, and the sentence changes to that topic.   

When we attend social events, I spend a good amount of the time worrying about what he's going to say, whose clothing he'll point at and tell me something about it,  or he might just stare rudely.  His filter is broken or missing.  

As anxious as he was on Saturday, he was worse on Sunday.  He sat at the edge of his seat the entire day - just waiting to jump up anytime I got out of my seat or asking where we were going.  I did plan to attend a birthday party with my daughter while my son-in-law stayed at the house with Billy.  We went out for a late breakfast that morning, and when we started home, he kept saying he wanted to go to my sister's.  I assured him he could go there to watch the Dallas Cowboys game at 3:00. Andrew took him to my sister's around 2:00 because Billy was wanting to go so badly.  Around 3:45, I received a text message that my sister's house was Anxiety Central....could I please call and try to calm Billy.  I called and assured Billy I would be there by 4:30.  He called me at 4:00 to see what was taking me so long. 

I keep replaying things from the caregivers seminar I attended a few weeks back, and she kept saying that negative behaviors can indicate an unmet emotional or physical need.  This weekend, I tried to identify the need, and I truly couldn't identify a specific need.  He is a little less anxious when I'm with him, but it certainly doesn't go away completely.  He follows me around the house when I go from place to place, and that is just part of the disease.  I contacted the doctor on Monday, and she's making some changes with his medication to see if it helps.  I'm at that place where something has to change....I keep having thoughts that I can't keep doing this, and I don't really have too many choices.  Billy needs supervision and full time care like people receive in assisted living.  We don't have the means for that, and a skilled nursing home doesn't seems appropriate for him.  God is faithful and will provide relief and answers.  I need them. 

While listening the the young couple repeat their vows at the wedding we attended, I thought about our vows.  When you stand before God, friends, and relatives at a young age and promise to love and care for this person until death, you don't think of all that lies ahead.  And that's a good thing.  If we knew what we faced, we might all bail out! I don't regret making those promises.  I love Billy with all my heart, and I want what is best for him. I'm just conflicted on what that is.  Love and peace to you all.  

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.  

Monday, October 17, 2011


What a wonderful day we had on Saturday! The annual Memory Walk took place at Trinity Park in Fort Worth, and Team BK was present with 27 proud walkers. Shelley did a fabulous job of organizing and getting the word out. I think I mentioned that we walked two years ago and had four in our group and raised $25. Now we know more about what to do in preparation, and we will only go up from here. Of the walkers, our son-in-law's entire immediate family walked with us. Shelley is blessed with her second family, and we are blessed to know them. My aunt who is 71 and was recently diagnosed with Parkinson's walked with us and never missed a beat. My sister and brother-in-law walked and pulled their little ones in a wagon. I could go on and on, but I'll just say...Thank You to all! 27 walkers and close to $1400 this year. Praise God!

I'm posting some pictures of the event. Our son-in-law, Andrew, designed the t-shirt, my dear friend, Deb Cano and her husband Larry, owners of Cano Electric sponsored our group and purchased the t-shirts, and many of you gave and gave and gave! We are honored and humbled by so many. I was amazed at how much the walk has grown in two years - many more people walked, and many more people are affected by this disease.

Those of you who know me well know that I am not known as a person prone to giddiness, but I am very close to being giddy! On Thursday, I will fly to Midland and meet two of my very dear friends, Kathy and Rhonda, and we will leave for the mountains of New Mexico on Friday for a relaxing girls' weekend. I have not been away from Billy since 2008, and I'm nervous about being away now. However, I need some time away for his sake and mine. Shelley will be with her dad one night, and then he'll spend the weekend with his sister, Cindy. She is looking forward to having him, and he will enjoy the time with her.

We still have concerns about my mom who has had many tests and must have some more. After several tests, she has been cleared of cancer of the breast, colon, ovaries, uterus, and lungs. The PET scan did show another tumor in her abdomen, and the search continues. Please keep her in your prayers. She had two days of testing last week, and then on Friday, my dad had an epidural steroid injection in his hip. We hope and pray that his pain is lessened soon.

Thank you for you unwavering support of our family. Your prayers are felt and appreciated.

Tuesday, October 11, 2011

Blessings and Challenges

Life seems to be one big balancing act at times. I'm often off balance in one way or another, but I'm always blessed by those around me. So many blessings have been revealed to me recently, and I love to share those.

An illness like Early-onset AD is devastating in so many ways, and one of those is financial stress. AD is an illness that requires medical treatment and constant change in the family's way of life. Medical bills are kept at bay to some degree with insurance, but the cost of that insurance is very expensive. In addition to the doctors' visits and medication, the constant care of an AD patient is costly. Unless a family member is available and capable of caring for an AD patient, someone must be paid to care for that person. Adult daycares are not created equally....some are better than others, and the place where Billy stays is the best I've seen. The best is expensive, and I recently had to face the fact that I can't afford the Cottage. I investigated other places and found a place where I could feel comfortable with Billy even though it didn't compare to the Cottage. When I let the folks at the Cottage know about Billy leaving, the owner was there to meet me when I picked him up. She told me the staff at the Cottage is not ready for Billy to go, and she encouraged me to keep Billy there and not to worry about the payment for now. I told her that I already owe her a lot of money, and she told me again that she really did not want me to worry about it.  She also assured me that they are able to care for him, and when they cannot, she will let me know.  Because of the change in transportation, I felt that is challenge enough for now, and he remains at the cottage. 

The bus has been another blessing by freeing up much of my time in the afternoons.  I'm able to run errands, stay late at work, or go home and walk on the treadmill.  It's wonderful to have choices.  The first day Billy rode the bus by himself was both amusing and heartbreaking.  He was nervous about getting on and needed help getting his seat belt buckled.  He made sure I was still in the drive way and waved at me in such a cute way.  It broke my heart to see him so child-like.  Throughout our marriage, Billy has taken on the role of protector and has always assured me that I'm safe with him.  Now, I am his protector, and he clings to me because I'm his security.

We've been blessed in many ways by being a part of a small group in our church.  We meet in a home with about 6 other couples and a few single folks now and then.  The women in our small group have decided it would be helpful to provide us with a meal (that usually turns into 3 or more meals) each week.  They bring this on Sunday evening, and on Monday, I have no concern about dinner that night.  It's such a freeing feeling to know that I can just heat something up when we get home from a long Monday.  I don't have to plan it, buy ingredients for it, or prepare it.  I think if I lived by myself, I could easily eat a bowl of cereal for dinner several nights a week, but Billy wouldn't go for it.  

The challenges continue to mount, and I never forget that God is greater than all of my issues.  Foremost on my heart right now is the health of both my parents.  Because my parents were young when they started their family (20 and 22), and I'm the oldest child, I've always had young parents compared to my peers, and they've seemed youthful.  The last year has been a rough one on my dad's health following back surgery in August of 2010 when he had a very negative reaction to pain meds.  His back is possibly worse than it was, and he is having memory issues that alarm us.  I mentioned my mom in my last post regarding a mass in her abdomen, and the biopsy came back as metastatic poorly-differentiated non-small cell carcinoma....a mouthful for cancer that started somewhere else.  Now, the search is on for where the cancer originated, so that a treatment protocol can be developed.  My sister, sister-in-law, and I all feel a strong desire and need to help out as much as possible, and that offers other challenges.  Although we've tried to convince them to sell their home in Corsicana (90 miles away) and move closer, my dad has been more than resistant.  We are not comfortable with him driving them to and from out of town appointments, and we are working on that also.  Please continue to pray for my mom, Alyce,.... that the doctor's find where the cancer started, and we can get on with getting rid of the cancer.  We also need prayers for how to work with my dad.  

Add to that the fact that Billy's cognitive skills continue to decline, and we have more stress.  His ability to communicate is greatly affected, and even though he talks, often what he says does not make sense.  He has delusional episodes where he tells me he has to get home (while we are home), and he asks me if I'm driving his mom's car.  This past weekend, he kept asking me if I wanted to go to his house in Burleson and watch the ballgame. That is where Billy grew up, and the house has been gone for over 25 years.  He also asked me this past weekend if I had heard from his mom, and most mornings he asks me if she has already left.  I usually just tell him that she's not at our house.  He told me several times that I am a great sister, and he's glad that I'm his sister.  Sometimes, I feel like I live in the Twilight Zone.  One evening, we were driving along in our car, and he asked if we had left the car in the parking lot.  We were less than one block from Walgreens where I had picked up prescriptions, and he asked if I knew where to go to pick up prescriptions.  Five minutes later, in the midst of golden silence, he says, "Do you know where to go to get that?"  "Get what?" "The tire."  I don't always have a response, and I really work hard at not sounding incredulous all the time, but our converstions are just strange most of the time.  However, I am very thankful we still have conversations, and even though he thinks I'm his sister at times, he knows I'm somone who loves him and cares for him.  I know these are precious gifts...when language goes, communication is much tougher. 

Thursday, September 29, 2011

If It's Not One Thing, It's 25

The last few weeks have been pretty typical as typical goes with Alzheimer's day is predictable.  Billy has had ups and downs with his behavior but probably more ups than downs.    He had a doctor's appointment for his 3 month checkup on the 19th, and the med student examining him did the Mini-Mental Status Exam with him.  I recall the first time he took this test (which is a series of 30 questions and tasks) around 2001 or 2002.  He got 30 of 30 correct.  I don't know if I could get all of them correct today.  (Count backwards from 100 by sevens.)  The score has decreased gradually, and his score this time was 17 correct of 30.  He said the month is April and the year is 2007.  When the doctor told him it was actually September and 2011, Billy said, "I should know these things because I'm a teacher, and I have calendars all around me."  

I notice his self-care skills are slipping quite a bit. He still gives it his best shot, but shaving is such a chore.  Sometimes he misses large spots, and sometimes he shaves twice in the same morning.  If I don't watch him carefully, he shaves, and then he puts mousse on his face instead of his hair.  He's put his deodorant on his face before like it's shaving cream.  I put the toothpaste on the toothbrush for him, but I have to tell him to brush, and I don't believe he does a thorough job of that either, but I don't obsess over it.  We are both doing the best we can, and I see no reason to make our mornings any more difficult.

He is sleeping very well, and I even have to wake him some mornings - Praise God for that.  I do believe that's pretty common with the disease because he fatigues easily.  He falls asleep around 8:30 or 9:00 in his recliner, so we head to bed a little after 9:00.  He does his make the bed routine (it's already made, of course) and fluffs the pillows for as long as I can stand it.  I take the decorative pillows off the bed, and while I'm in the bathroom or somewhere else, he puts them back on the bed.  Some nights, I'm amused, and some nights, I say..."Enough fluffing and straightening.  Leave the  pillows alone, and get in bed!"  I give him last pill of the day, and he conks out quickly. 

We do have a new adventure ahead, and I am thrilled.  Billy was approved to ride the MITS bus which is public transportation for disabled folks.  The cost is very reasonable, and they will pick up Billy from our house at 6:15 a.m., and deliver him to the Cottage.  They will return to pick him up at 5:00 from the Cottage and bring him home.  The thought of gaining 10 hours a week that I'm not on the road is huge to me.  What a blessing in so many ways.  Please pray that Billy can tolerate the rides to and from, and that it all works out. 

Please keep my mom, Alyce Barnes, in your prayers as well.  She was admitted into the hospital today because her right kidney is blocked from a mass that is pushing against the ureter.  Biopsy and stint put in place tomorrow.  Lots of unanswered questions. 

Saturday, September 17, 2011

D.A.D. Dementia Awareness Day

Dementia Awareness Day was today, September 17th, in the UK.  As far as I know, the US does not have a comparable day, but I feel certain it is coming with the National Alzheimer's Project Act.  Here are two links to videos about DAD in the UK.  Alzheimer's Disease knows no national, ethnic, nor economic boundaries.

Friday, September 16, 2011

Pretty Good Week

It's been a good week for Billy. With Alzheimer's you learn to live in the present and appreciate those days that go well. When we have consecutive "good" days, I'm very thankful. It's rare that I make it a full week without having a report of Billy being out of sorts and getting irritated with someone at the Cottage. We made it all five days this week. I must admit that I did not ask for details today, but if it had been bad, I think I would have known. One day, I caught him sitting in a recliner watching an old western. It was wonderful to see him sitting and enjoying some down time. The usual routine is that I open the door from the foyer into the main living area, and he hears the door. I hardly get in the door before he walks toward me and says, "There you are!"

Because he pretty much refuses to stay in the TV room, all of the clients and caretakers are in the front room with him when I arrive. He is NEVER sitting down, so when I found him sitting and watching a movie, it was a BIG deal.

When we get home, we eat dinner, and he's so tired, he falls asleep in his chair by 9:00. I've started having Catherine, his former caretaker from Easter Seals, stay with him on Thursday evenings. That's the night I nearly always have a function at school, and if I don't, I just try to get away for a few hours. It helps tremendously, and I'm so thankful he's been happy to see Catherine on Thursday evenings.

Thank you so much to those of you who have donated to my team for the Walk to End Alzheimer's! I'm not too far from my goal, and I really appreciate it. I've emailed those of you that I have addresses for, but I don't know Alice's or Allison's. Thank you, ladies!

You may have heard the big news this week about the insulin nasal spray that is having a positive impact on Alzheimer's Disease. Donations that you make go to research like this, and I can't thank you enough. Billy has a doctor's appointment on Monday afternoon, and that will be one of my topics. Where is the study, and is it possible that Billy could get in on it. The last time I asked, I was told that the research in our area is for earlier stages of the disease, and his is too advanced. Another reason for early diagnosis!

Thank you for your prayers that sustain us as we walk through this disease, and as always, thank you for reading!

Sunday, September 11, 2011


Two years ago, Shelley made her first attempt at putting together a team of walkers for the annual Memory Walk. We didn't start early enough, and then we got busy with so many things that we ended up having Billy, Shelley, two of Shelley's friends, and me walking. I had big time knee issues that year, so I only made it a mile. Last year we were unable to do it all because of other commitments. This year, Shelley has put a good deal of work into planning, her husband, Andrew, has designed a t-shirt, and we are so excited about the walk in October.

This year, Team BK is a reality with several people joining the team, and we hope more will donate. If you've read my previous posts, you know how passionate I am about promoting research and awareness for this disease. If you're in the area, we would love for you to join our team! If you are unable to walk, we would appreciate ANY donation you can make. With the handy-dandy link to the right, you can get to my donation page with one click. (By the way, my technology skills are improving greatly with this blog.)

It's been a busy weekend in the Knowles' world, and at this moment it looks to end well as the Cowboys are ahead in the 3rd quarter! However, the Cowboys sometimes disappoint me in the 4th quarter.

Yesterday, we made a quick trip to Burleson (where Billy was raised and graduated from high school) to attend the funeral of a man that Billy held in high regard. Billy's best friend since high school is Ronnie Bryant, and his dad, Liston, passed away on Tuesday. Billy grew up without a father, and many times he told me that Liston Bryant was a wonderful positive role model throughout his teen years. His funeral was attended by hundreds, and it was an honor to be a part of those close to his family.

I believe I mentioned before how much Billy enjoyed swimming about 6 or 8 weeks ago. We took him swimming again last weekend at Shelley's in-laws, and all this weekend, he's been grabbing his swim trunks every time we get ready to leave the house. I've had to say over and over, "We are not going swimming. We're going to the store/church/restaurant/etc." I've managed to keep my sense of humor, but I'm ready for Monday.

Thank you for continued prayers and encouragement. I appreciate you reading this blog, and I will write until I run out of words.

Monday, September 5, 2011


What a privilege I had last week when I spoke to a group taking input for the National Alzheimer's Project Act that President Obama signed into action in January. Representatives from the Texas House of Representatives and US Health and Human Services among others were in attendance to take feedback from the public. When a meeting like this is open to the public, input comes from so many different folks - some were prepared to speak and some spoke only from their emotions. Each person who spoke had their own experience with this disease, and most were very personal experiences of caring for a loved one.  I speak to groups often...teachers and parents mostly, and I can usually speak without notes.  But when the topic is as important as this, I want to be wholly prepared.  I wrote out what I wanted to say and revised it several times.  

Even in this large group of about 150 people, I heard only one other person speak about a loved one diagnosed so young, and her mom's AD was due to a prior brain trauma injury. Her mom's diagnosis was in her 30s, and her mom passed away at age 43. One woman was diagnosed at 59, and she was articulate about her frustrations with getting a diagnosis.  During my input, I stressed the delay in diagnosis for Billy.  He was treated for Adult ADD at first, and the meds made him fidget more than ever with no improvement in memory or completion of tasks.  Then he was diagnosed with depression, and although he did have some signs of depression, the root of the depression was not discovered until his symptoms worsened.  I know there are much larger numbers of Young Onset AD, but I don't run into too many of them. 

In the hour and a half that we were there, we heard at least 20 people speak, and thankfully, we were not held to the time limit of one minute that was first set.  Most of us spoke for 4-6 minutes, and it was enough time to truly give feedback. The panel was looking for input that fit into four areas:
1) Awareness
2) Research
3) Health Care
4) Long Term Care

Awareness has been a goal of mine since coming to grips with the fact that Billy has this disease.  At first, I didn't want many people to know...somehow AD has or had a stigma in society.  Jokes are made about it all the time, and I understand why.  I worried about Billy losing his job, and that's what happened. Billy wouldn't tell people unless he just had to, and he never volunteered to talk to anyone about it.  Mostly, though, I felt totally unprepared and had no idea what to do for him.  People tell me frequently that they had no idea what all was involved with Alzheimer's Disease until they read my blog.  I'm thrilled to hear that more people are becoming aware of the gravity of the diagnosis.  

Research is taking place, but lack of funding slows it down. Diseases that have money put into the research get treated , cured, and prevented.  Early diagnosis is incredibly important in all major diseases, and the same is true for AD. So many doctors are not willing to diagnose someone who is young like Billy, and they have not had experiences with Young Onset, so men get diagnosed with depression or ADD, and women are told that menopause is causing the issues. Mis-diagnosis delays treatment that can slow down the disease.  By the time we got firm confirmation that Billy had AD, the disease was too far along for any of the clinical trials in this area. 

I am so thankful that Billy has had health care and insurance during his onset and diagnosis.  While it would be so helpful if he had Medicare, at least he has health insurance.  Many Early Onset patients are able to get Social Security Disability, but they don't get on Medicare for two years.  How do they get meds?  No meds = no slowing of the disease.  

My opinion of long term care is still forming, and a huge gap exists in the time between when a person loses his or her job and the time that person needs long term care.  Years pass by without knowing what to do.  It became evident to me that I had to find a place for Billy because my staying home with him every day was not possible.  I think of older onset patients who are typically retired with their spouses, and even though the spouse may have the time to spend all day every day with the AD patient, it is not healthy for the caretaking spouse to spend 24 hours a day/7 days a week with that person. The caretaker has to have a break. Research has many stats about caretakers dying before the AD patient. 

As you hear more about the National Alzheimer's Project Act (NAPA), I hope you will support it's initiatives and know that many are being helped.  So many are touched by this disease in one way or another. 

Monday, August 22, 2011

Things I've Learned To Do

I can do all things through Christ who strengthens me. Philippians 4:13
So many meanings to me...I can endure...I can handle....I can hold on....I can make decisions....I can do what needs to be done.

I must thank my parents, Roark and Alyce, for helping me become independent from early on. They taught me to think and question and not to accept everything just because someone said it. I remember asking questions about what I had heard from our preacher at a church service, and my dad told me that the preacher was a man like any other man, and I shouldn't believe things just because I heard them from a pulpit - I should study the Bible on my own and find the truth in scripture.

When I was fourteen and my brother was eleven, my sister was born. Mom stayed home with Leslie for a few years, and then she went back to work. I remember we had a family meeting, and my dad said that since Mom would be working later hours, we had to help out more around the house. My job was to plan and cook supper each night during the week, and my brother was to clean the kitchen. They trusted me to take care of dinner for our family of five, and I did it. About a year later, I started driving, and Dad taught me how to put gasoline in the car. When they bought my first car, a 1961 Chevy Impala, my dad showed me how to check the oil and how to change a flat tire. In case of emergency, he wanted me to know how to take care of myself.

I never thought of myself as a total feminist, but I do believe women can do a lot of what men can do. I love when I have my oil changed and a woman is the one who is changing it. I like seeing women police officers and fire fighters. Even though I believe independence is a choice, I didn't want to take on everything, and I liked that Billy took care of many things related to home and car maintenance. He did most of the yard work, but I didn't mind mowing when he wasn't around to do it. One summer he was in Washington, DC for five weeks, and I kept the yard mowed, trimmed, and managed to make small repairs.

As the Alzheimer's Disease progresses, Billy's ability to complete tasks is compromised. He wants to help, and I try to include him in certain chores, but it often becomes so frustrating to him and to me, that I just take over. With the incredible heat this summer, we are trying to keep one planter alive. It needs water daily, and Billy volunteers to water it. The water hose is stored on a reel on the side of the house. The faucet has a splitter on it, so you can hook up two hoses at once, but we have just one hose connected to it. One day when Billy was going to water the plants, I wondered what was taking him so long. When I went to check on him, he was hooking up the free end of the hose onto the other faucet and turning them on. Surprisingly, the hose didn't burst, but he needed help.

There was a time when I would wait for Billy to fix something. He could handle most anything, but in the last few years, he can do less and less. He's always changed the bulbs in the headlights or tail lights of the car because he had a strong aversion to spending money on something he could do. Now, I've learned to change the bulbs, and I carry extras in my car. He also took care of cleaning out the bath tub drains when they started slowing down. Now, I do that with my handy dandy Zip It tool. It's gross, but nobody else is going to take care of it.

I've cleaned off the cable connections of my car battery, pulled the battery out when it still didn't work, and nearly dropped it because I was not prepared for heavy it was. I took it to O'Reilly's where we've bought our last several batteries, and I was thrilled to get an adjustment on it. I get the oil changed regularly, and I get the tires rotated. One thing I have not mastered is changing a windshield wiper, but I can buy it and get help.

I've learned to do things, and I've learned to ask for help when I don't know how to do something. I depend a great deal on family, and I am so grateful for them. My sister and brother-in-law live about 5 minutes from us. Shawn is the family resource on anything to do with technology. Actually, Shawn can fix almost anything, and if he needs help, he calls my cousin, Travis. The two of them together have just about any tool known to man, and neither of them are afraid to tackle a household repair. My daughter and son-in-law live nearby also, and they are a wonderful help with Billy. My Uncle Bob is great about providing his pick-up truck if I make a purchase that doesn't fit in my car. My sister-in-law and nephews live very close by and are just a phone call away. We are blessed by family and friends.

Monday, August 15, 2011

Ready or not, the kids are coming

Teachers came back to school yesterday....a sure sign that we'll have students very soon. I love this time of beginnings, positive attitudes (for the most part), and it's great to see everyone after a few months away. I have about 2 weeks off in the summer, so I spend a good bit of time working alone during the summer. It's good to have everyone back on campus and hear the busy-ness in their voices.

As much as I love this time of year, I've allowed some things at work get to me lately, and that's not like me. I can usually go with the flow and let things go, but I've taken something personally that probably isn't. I've spent some time trying to figure out why I'm allowing myself to get so upset about this, and I think it's misplaced anger about this stupid disease. Alzheimer's robs you of your loved one little by little. I can't be angry at Billy because he's not at fault, but I'm angry that he has this disease that has taken my husband as I knew him. We no longer have conversations like married couples have. I'm not sure I can even categorize them as conversations. We talk, but it's usually me trying to figure out what in thunder he's talking about. I simplify what I say to Billy because I don't want to confuse him. I miss talking to Billy about work issues. This whole ordeal that has upset me at school, would have been something I could talk to him about. I enjoyed that we shared the same profession for several years because we could share stories without too much explanation. When something is bothering me, I don't share it with Billy because he isn't able to comprehend some of the issues. I try to keep it simple and direct. Billy's attention span is short - as in seconds long. Unless he's obsessing over something in which case he cannot let it go. Yesterday he was stuck on where his car was because according to him it is actually his mom's car. He asked several times if I thought he should call his mom. I never know how to handle this, and I handle it differently each time. I told him we couldn't call his mom, and he looked at me for a long time. I said, "Your mom is not here anymore." He looked down and said, "Yea, I've just been thinking about her a lot."

I have a rare opportunity to speak as an advocate in a few weeks. Our local chapter of Alzheimer's Association is hosting a Town Hall Meeting regarding the National Alzheimer's Project Act that President Obama signed into action last January. We have the opportunity to be heard by several people who will report back to the Secretary of Health and Human Services. Our caseworker asked me to have a 3-5 minute statement to read. I pray that God will give me the exact words I need to say all that needs to be said about Young Onset AD and the needs of it's victims. One of my goals is to become a true advocate for Young Onset victims. Please pray for me as I pursue this.

Billy seems to be holding steady these days, and that is a blessing. He's sleeping well, eating well, and he does not seem worse. I am makes our lives easier.

Wednesday, August 10, 2011

Prayers Answered

So many of you prayed for a better day for Billy today, and as always God answered immediately. I wrote a note for him to carry in his pocket this morning, and in addition to telling him what time I would pick him up, I told him to do whatever Terry told him to do. I never got a call today which was very unusual (and might be because the nurse who fills in doesn't let him talk her into it), and when I arrived, he was not at the door. He came very quickly when he heard the door open, but everyone was sitting in the front room. I asked Terry if he got a happy face or a sad face, and she said more happy than sad. The nurse confirmed that he was much better today.

It may have something to do with the note I wrote, or he may have been better just because. Alzheimer's Disease is so unpredictable from day to day. We currently have more "good" days than "bad," and I am thankful. Thank you for your prayers. Tomorrow may be more difficult because Shelley is taking him to meet Terry in the morning. I have to be at the hospital for a minor procedure at 6:00 a.m. Variances from routine can mess up his days sometimes.

Tuesday, August 9, 2011

It's Always Something

I noticed as I left a meeting this afternoon that I had two missed calls from the Cottage. Debra, the nurse who has been there for the last few months, typically lets Billy call me in the afternoon around 4:00. During the summer, I've nearly always been available, but today I was not. I called her back, but she was with another client, so we didn't talk, but she said in one of her messages that if this was a good time, she would let Billy talk to me each day at this time. When she's called before, she always asks if it's okay, and I really don't mind if it helps Billy settle down a bit.
I started my trek to the Cottage around 4:30, and I had to stop to fill up with gasoline. It was 5:25 when I arrived there, and as soon as I opened the door, he stepped into the entryway. The door to the daycare is kept closed, and Terri tells him NOT to go out that door. I could tell when I saw him and heard Terri scolding him that it had not been a great day. When I asked Terri how long he had been like this, she told me it started before lunch today. He wouldn't sit down to eat lunch, kept getting up to walk around or go to the restroom. After lunch he was to stay in the TV room at the back of the Cottage with one of the caretakers, while Terri and another employee took an online test. He would not stay in the room, and kept going into the nurse's office.

He was the last one to get picked up today, and I'm sure Terri wanted to wring his neck. She told me that for about 15 minutes before I arrived, he kept telling her he was leaving no matter what. She told him that if he did that, she would have to call the police. When he saw me he started apologizing to was like he got caught being naughty by his mom, and he was trying to make it okay. This has become a pattern with him, and I'm not sure how much he understands. He seems very adolescent - or younger.

I told Terri I planned to visit with the owner about possibly locking the door into the daycare, and she said it cannot be done because of regulations of some kind. I'll have to get more information on that, but I would feel better if it were locked. I would feel even better if Billy didn't get so ornery with Terri. I feel like I need to put him in timeout when he's like this, and when I talk to him, he responds in a reasonable way, but I don't really think he comprehends what he did. Being child-like is one thing, but if he were a child, I could reason with him better. He promises not to do whatever it was he did, and then he does it again. The apologies begin again.

Please pray for Billy to be more compliant at the Cottage. I think they are happy to have him there, but if it becomes unsafe, I'll have to consider other options. And we know how that goes. Our past prayers have been answered, and I don't doubt that this can be done also. He is resting at night now, sleeping soundly, and what a huge blessing that is.

Monday, August 1, 2011

"Listening" to my gut feeling....

If you read my last blog, you know I planned to take Billy to the "new" place on Thursday and Friday. We arrived there Thursday morning at 7:00, and when we buzzed in, one of the caretakers asked if she could help us. I asked her if Noel had told her we were coming early, and her answer told me what I already knew, "Of course not!" It think the folks who work with Alzheimer's patients are very special people, and these are no exception. But the management of the place leaves too much to be desired. On Friday I took Billy back to the Cottage.

As I was leaving, one of the RNs talked to me about taking Billy for a ride in the afternoons when he gets so anxious and agitated. Of course, it's great with me, and again the difference in the Cottage and the "new" place hit home again. They think outside the box at the Cottage; they look for solutions to the issues that Billy is experiencing.

Enough said. I'm going with it, and when I start complaining about the drive, I will go back and read through these posts. Billy is worth the drive.

Wednesday, July 27, 2011

Pity Party

I don't cry often. My face gets splotchy, my nose gets stuffy, and I am anything but pretty when I cry. I'm afraid if I start crying, I won't be able to stop, and for the last hour and a half, I've been right about that. I can't stop. So...I'm writing to get all these thoughts out of my head onto paper, and hopefully, my thoughts will settle down, and I can sleep.

I'm not certain what triggered my pity party tonight, but I it has become a full-blown wallowing session. I'm coming out of it, and now I'm just angry about so many things. As I write I realize that the trigger may have been that I called the "new" daycare today to make certain all things were set for Billy to go there on Thursday and Friday of this week. I've learned very quickly that the person in charge of this place (I'll call him Noel which is the backwards spelling of his name, but I want to protect the ignorant for now) is very scattered to say the least. Shelley and I toured this place months ago, and Noel spent almost two hours with us showing us around, explaining how everything works, asking about Billy. I told him that I need daycare because I work, and Billy cannot be alone. I told him that I had heard great things about this place, but I never checked into it because they advertise their hours as 9-4:30. I had also heard that they might be willing to work with me on that. He was so pleasant that day to say that not only would they take him early and keep him a bit late - they would not charge me extra for that. Fast forward a few weeks. I've now decided it's time to give it a try. I call Noel, and after a few reminders, he seems to remember me. He sets up an assessment time, so their nurse and director can come to the house and see that this is an appropriate place for him.

The assessment takes place the next week, and the director asks me when I think I might start taking him, and I tell her the next week sounds good. Nothing else is said about what I need to do. The next week, I call Noel to see if I can bring him that Thursday. Oh, now wait a minute, Billy has to have a TB test, and there is paperwork to fill out. I take Billy to the CVS clinic and have a TB test done, and I await the emailed papers. When I receive said papers, I find that in addition to the novel I will need to write before taking him, I also need copies of the powers of attorney, copies of his Medicare card (because all disabled folks have Medicare, don't they - don't get me started), and his driver's license and supplemental insurance card. I write the novel. I make copies of the POAs, and I call to tell Noel that since it's Thursday, we'll just wait until the next week. By the way, Noel tells me, we are full on Wednesdays, but I'll put you on the waiting list.

No need to fast forward....just move at a slow pace, and I will call several times with no return phone calls, but I did finally catch a moment when Noel could come to the phone. We set up a time for me to take Billy, and I need to be prepared to stay and visit with the nurse for a while. I told Noel that I would drop by the day before with all the paperwork, so maybe we can expedite things. That brings us to last Thursday afternoon when I took the papers by on my way to pick up Billy. I was buzzed in, and I asked to see Noel. He came up, and I extended my hand and said my name. He looked at me and said, "You look we've met before." Well, yes, we have when I toured the place several weeks before. He took me into the library, looked over the papers, and he asked for Billy's Medicare card. HE DOESN'T HAVE ONE BECAUSE HE IS NOT ON MEDICARE! Noel looked puzzled, and I tell him the Clif Notes version of why Billy is not on Medicare. We decide the time I will bring him on the first day, and as I leave, Noel says, "It's so nice to meet you finally." I feel certain you are getting the picture by now. I take Billy the next day, all seems to go well, and as we are leaving I tell Noel that I plan to bring him on Thursdays and Fridays. According to Noel, that will be great. I tell him that I will call this week to talk about when I need to bring him because I work. Oh, those decisions have to be made by the regional manager.

That brings me to today. After leaving 3 messages earlier this week with no response from Noel, I got lucky again and called when he was available today. I tell him I plan to bring Billy tomorrow, and I have to be at work by 7:00 a. m. He asks me to hold just a moment because he has to ask his executive director who apparently is in the office with him. He covers the phone, and then he comes back to me. "What time will you be able to pick him up?" Either Shelley or I can pick him up by 4:30. "My executive director says you can bring him this Thursday and Friday at 7:00, but after that it will have to be evaluated."

I guess I've done a slow boil since then. Noel doesn't have his act together, he can't remember meeting me and probably doesn't recall saying that early and late would not be an issue. I may have been wrong about this being the place for Billy. I am not unhappy with him at the Cottage. I am concerned that as he progresses, he will be more difficult for them to handle, and because he moves around so much, I am concerned about him walking out and wandering. He's been upset and told them he was just going to walk home. He's not acted on that, but every time I drive down the highway and see those signs that say Missing Elderly, I think about him. Those people may have been trying to get home also.

In the midst of my crying jag tonight, I think I've decided that I need to leave things alone for now. I'll take him tomorrow and Friday and assess it further, but I want him where he's wanted and not thought of as a bother. The "new" place advertises that they are "family owned," but they have many assisted living homes in the US, hence the Regional manager, the executive director, the director... The Rose Cottage is owned by Howard and Maureen, and they are often at the cottage when I go pick up Billy. It's sort of like he's visiting their beautiful home. I think Billy has a crush on Maureen because he sticks to her like glue.

Yes, the drive is long, and gasoline is hideously expensive right now. But we can eat out a few less times during the week, and that will help with gasoline. I can start getting books on CD and listen to those on my rides. I enjoy talking on the phone while driving to pick him up also. This will work out just fine. And at the Cottage, he is loved. I know he's a handful sometimes, but they love him. And it's hard to find a corporation that loves your loved one as much as you do.

The tears have dried up, and I can almost breathe out of my nose now. I'll grab some shut-eye before we start the day afresh in a few hours.