The Roller Coaster Continues

I should be getting my beauty sleep at this moment...or at least my survival sleep. But I find it necessary to write. Writing is therapy for me, and at this time in my life, it's less expensive than seeing the counselor! 

During the last few years of my life, stress has become routine, and while I don't know that I thrive on it, I seem to hold up well under the pressure. The last 6 weeks have almost done me in...and I'm not alone. Our entire family has been a bit stressed. In addition to the "usual" stress of a spouse with Alzheimer's, we've had an additional stress with the health of our parents. My sister, Leslie, and I were thrilled to move them into an assisted living apartment back in November. Mom has been battling cancer for about 18 months, and Dad has Lewybody Disease. His needs were becoming difficult for Mom to handle, and the responsibility of everything for Mom was really rough. Chemo is tough and with each phase of it, it seems to become even rougher. It also was not curing the cancer or even keeping it at bay, so after much concern and thorough research, it was determined that the best thing to do was remove the tumor surgically. We knew it was a complicated surgery with a lengthy recovery, but no one knew how complicated it would be, nor how many complications Mom would face. She withstood a 10 hour surgery on January 16th, stayed in the hospital for two weeks, and has been in a rehab hospital since then. She may get to go home this weekend!  We are hopeful.

Back to the stress part. Mom's surgery was in Dallas about an hour from where we all live. Our routine during her hospital stay was work all day, pick up Dad from their apartment where a caregiver had stayed with him during the day, and drive to Methodist Hospital in Dallas. Visit Mom for a few hours, take Dad back and spend the night with him. We are not comfortable leaving him alone, and he's not comfortable being alone. He still doesn't think of the apartment as home. Sometimes when we drive up, he says he hopes they have a vacancy for the night, or he asks if this is where he will live for the night.  The next day, whoever stays with Dad gets up, and starts the entire process again. After two weeks, Mom was able to move to a rehab facility that is blocks away from their apartment.  My stress lessened a bit because I no longer drove to Dallas several times per week. Mom has had numerous infections and a few setbacks, but we see great progress.

Now my routine is to work until about 4:00. Go pick up Dad from the apartment, take him to the rehab to see Mom. I leave him there and drive to the nursing home to feed Billy dinner, leave when he's eaten, go get fastfood for Dad and me, then return to the rehab place. On top of this, work has been crazy. I could write a few hundred pages about it, but I'll spare you all! My great comfort during high stress is FOOD! I'm not ready to face the music (or the groan) of the scales, but I know my clothes are feeling a bit stretched.

I have missed being able to see Billy each day. I know he will be fed, but I also know how short staffed they are, and I like feeding Billy. It's odd how he has to be fed because he has no trouble chewing and no noticeable choking, but if we don't feed him, he just sits there and might take a few bites but he ignores his food. It's difficult for him to get the food on his utensil and get it to his mouth. 

He had a pretty long streak of being fairly happy, alert, and compliant. That stopped a few weeks ago. The evening nurse from weekdays called to tell me that he was walking very differently and nearly falling. He was agitated and combative. The nurse wanted to speak with the psych nurse and see what could be done. I had also noticed his walking was even slower than before and not completely steady, but I didn't worry much about him falling and attributed it to the progression of AD.  The medical staff determined they would try to switch out the Ativan he was taking and give him Xanax. At first, it seemed to help a bit. A few days after he had been taking the Xanax, he used more complete sentences than he had been, and his wit was back. I went to pick him up on a Saturday afternoon, and as we were leaving one of the nurses told him she had not given permission for him to leave. She teases him often. He looked at her, and without missing a beat, he said, "We can go anywhere we want to go." I could even see the twinkle in his eyes. 

By the next Saturday, he had changed drastically. I got a call from the weekend nurse telling me that he was bent forward while walking, and they were very concerned about him falling. He refused assitance and tried to hit a few people. He also refused his meds and would NOT take them. The nurse asked if I would come early and see if I could help settle him. With the traffic in our area, it takes me at least 30 minutes to get to him, and when I walked in, I did not see him walking the hallway. I walked by his room and could see his feet on the bed. When I went in to see him, he was sleeping hard. In over a year, I've only see him on the bed 3 or 4 times. He does not nap, but they had calmed him enough to get some meds down him, and I decided he needed to sleep more than he needed to go with me. I received another call yesterday from the evening nurse, and it was almost the same call I got the previous Saturday....walking and pacing unsteadily and very combative. He had to take meds in order to eat. Today, I went to feed him, and he was calm and glazed. I hate glazed. I feel sure it's a mixture of the disease and the meds.

I usually hold it all together pretty well. Tonight was not one of those times. The tears were about to roll, so I told Billy it was time for me to go. He did walk down the hall with me after a bit of coaxing, and he offered a smile as I left. But I still went the restroom to cry.

This photo was taken on Valentine's Day just 13 days ago.  His eyes were brighter, and his smile was wonderful.

 

The video was taken this evening. He's not with me.

 

My hope and prayer is that tomorrow I will see Billy, and Billy will see me. I am so thankful I get to see this man any day, and I'm double thankful when he sees me. I hate this disease.

The Big D Strikes Too Often

Since my last post on the ninth, almost twenty days have passed, and during that time, our family has been busy. On the 15th, I had my second hearing with Medicaid. Today I got the response, and the words that struck me were something along the lines of the decisions made by the Medicaid case managers were incorrect.  Basically, some errors were made resulting in a delayed qualification for Billy to receive Medicaid. Their decision was not reversed by the hearing officer, but they are to reconsider the medical expenses I had for Billy up until he was qualified.  I'll keep you updated as I learn more.  The wheels turn slowly.

On the 16th, I drove my parents to Methodist Hospital in Dallas at 5 a.m.  Mom went into surgery to remove a cancerous tumor at 7:30, and the surgeons told us to expect that it would take 4 1/2 to 5 hours to complete the surgery. We heard from the nurse in the surgery at 9a.m., 11:30a.m., and again at 2:00. The main surgeon came to see us in the waiting room at 5:30p.m., and he looked tired. As he sat down, he said they had known this would be a complicated surgery, but until they got into Mom's belly, they really didn't know how complicated.  He described the tumor as about the size of an orange, superglued around her right ureter. They were determined to get it out in one piece, and they did. In doing so, they destroyed some blood vessels and veins and a  large portion of the ureter, but that's where the vascular surgeon and urologist came in and tidied up the veins and rebuilt the ureter. Neither were simple, and she remains in the hospital tonight and hopes to move to a rehab center on Wednesday. However difficult this has been, Mom is cancer-free! Praise be to God and His guidance of surgeon's hands.

The surgeons had been planning this surgery for a few months, and had practiced different scenarios. What a tremendous team!

During Mom's surgery and stay in the hospital, we (my sister, brother-in-law, sister-in-law, nephews, daughter, son-in-law, and I) have cared for my dad. Dad has Lewybody Disease that comes with dementia, and he should not be alone for long periods of time. Mom hired a caregiver to stay with him during the day, but we have taken turns driving Dad to and from the hospital and spending the night with him. My dad has always been a talker, and he has a vast vocabulary. He's well read, loved to do crossword puzzles, and holds a Master's Degree, so it really causes him disdain when he cannot locate a word he is searching for.  The drive to Dallas is an average of 45 minutes give or take a quarter of an hour. That's a long time for Dad to talk, and as dementia does, he sometimes makes little sense, but he certainly gets his point across in some areas. He is incredibly proud of his children and his grandchildren. He adores his wife, and he feels strongly that he is still a good driver!  None of us are willing to allow him to prove the driving part.

I have to share with you just how special my dad is to me, and I know that he is no less special to my sister or to my brother who passed almost 5 years ago.  We just came to be Dad's kids in different ways. Mom and Dad dated when my mom was a student at Polytechnic High School in Fort Worth and Dad was a student at TCU. Mom's aunt set them up on a blind date, and they hit it off nicely. Mom was in a hurry to grow up and get married, and Dad was not. They went their separate ways, and Mom met a charming scoundrel and married him. He was my biological father, and I have no recollection of him. I don't know many details because Mom does not like talking about it, but when I was about 7 months old, Mom left with me and we went into hiding - living with different relatives for short times. We couldn't stay very long with immediate family because he kept finding us and causing problems for Mom. We moved to Midland for a while and lived with one of Mom's cousins. Eventually, we moved to Abilene to live with Mom's aunt and uncle, and after a time Mom got a secretarial job and a small apartment within walking distance of a bus stop and the Highland Church of Christ. That's when she and Dad got back together. Dad's brother, my Uncle Alvin, rented a small apartment from Mom's aunt in Fort Worth, and he had helped move Mom to Abilene. He contacted Dad and mentioned that Alyce was divorced with a baby and just happened to live in Abilene. The rest is a sweet love story with the usual bumps in the road.

Mom and Dad married on December 18th just before I turned two years old on January 23rd.  Their honeymoon was certainly less than glamorous, but they did have a sitter for that. I stayed with my Aunt Tricia and Uncle Bob, and they still talk about how much I cried while I was away from my mom and dad. My earliest memories begin when I was about three, and I never remember a time that Dad wasn't my dad. He has never mentioned to me that I am not his biological kid, and with his dementia, he probably doesn't remember it.

The word thankful doesn't begin to describe how I feel about Dad. He has been a huge influence on who I am today, and I can't imagine a dad who could love me more. He taught me to ride a bike, to believe in myself, to drive a car and change a tire, and he modeled a healthy marriage with my mom. He was also pretty strict, did not give me my way always, and he remains a very stubborn man. In a time when I was growing up in a very conservative legalistic church, he taught me not to believe something just because a preacher said it. Study the Bible myself, and see if I agree.  My heart breaks that he now has dementia, but I am honored to be able to care for him like he always cared for me.

Dad watched Billy decline over several years. He cried when we talked about Billy's diagnosis, and little did we know that he would face the same ugly dementia. Several times over the last few weeks, Dad has asked me if I plan to finish my degree. I always say, "Well, I've gone as far as I plan to with my degree, Dad.  I have my master's degree, and I don't feel like I have the energy to work on my doctorate." 

His reply is always surprise and pride. "Well, I didn't know that. I'm so proud of you."  What a privilege to be chosen by such a man.

The Bed is Gone

There was a time in my life when my stomach would sink walking into a nursing home. My visits to the "old folks home" as a child were limited. My Sunday school teacher in fifth grade took us to visit residents, and I was terribly uncomfortable while there.  The smell bothered me, the bony fingers that wanted to touch us frightened me. None of my grandparents were in a facility before they passed, so most of my experiences were visits with Billy's mom, Aleta Asher. She was in a two different facilities through the duration of her disease, and I grew a bit more comfortable in that setting but not completely. I didn't visit often enough to grow accustomed to the strangeness of the behaviors.

As we approach a full year with Billy living in Lexington Place, I can say I'm okay there. The residents in the memory unit know me. I can handle the noises, the blank stares, the mumbled utterances, the random cursing, the occasional choking and the lack of respect for personal space. What I will never grow accustomed to is the death that comes with this disease. The unit has 9 rooms - 18 beds. I know the residents and their rooms. As I walk down the hall, I can see them if they are in their beds, and today I saw a bed missing. The name was removed, and I couldn't place who had been there. I asked the nurse whose bed was gone, and he told me it was Betty.

"When?" I asked, and Raymond answered, "Today.  It was so hard to see."

In truth it's been difficult to watch Betty in the last few months. She's been terribly sad since she could no longer walk. Those of you who have followed me a while may remember that I referred to her as walking Betty. She walked up and down the hall for hours a day. She was a beautiful statuesque lady with porcelain skin and thick silver hair. I heard her speak a handful of times, but I heard her scream and saw her cry many more times as the disease ravaged her ability to walk, her desire to eat, and finally her life.  

I hate Alzheimer's Disease. It's a disease where you watch your loved one die going backwards from adulthood to adolescent to childhood and back to being a baby who needs to be fed and bathed and diapered.  I hope it's a long while before I notice that another bed is gone.

Gratitude and Hope

Prologue to blogpost. I've mentioned my good friend, Karen Fletcher, in my posts before. Karen and I were friends in high school and graduated together, went to college together, and we lost contact for several years. We re-connected after a few decades and found that both of our husbands had dementia (her husband's diagnosis was Inclusion Body Myositis that often comes with frontal lobe dementia, and Billy has Alzheimer's Disease), and Karen had just placed her husband, George, in an assisted living facility. It wasn't difficult to see why God led us back to our friendship. For the last few years, we've met monthly for dinner. For the first time, one of us had to cancel last week when Karen called and said George was sick with the flu, and she just couldn't leave him. The next day, the medical staff felt he had suffered a stroke also, but at that time he was fairly stable. Since Karen was also sick with strep throat, she went to the doctor and home to rest. The next morning, she received a call that George was declining rapidly, and he passed away that afternoon. Tomorrow I will attend George's funeral, and I will hug Karen tightly and wonder what I can say that will convey how terribly sorry I am. This is my third friend to lose her spouse to a dementia related disease in less than one year. Karen Henley lost Mike last February, and Delores lost David in October. Now George has passed. Each woman of faith knows that her loving husband is whole again, but the pain of their earthly absence is not diminished. Lord, come quickly.

As we close out 2012, I remember well how I was feeling this time last year. Holiday time had been tough. Billy's needs exceeded my abilities, and I knew it was time for a residential placement. I can hardly believe that in less than a month Billy will have lived in Lexington Place for a full year. I am at peace about Billy living there with caregivers around the clock - all of whom care deeply about the residents and are trained to care for patients with dementia.  A few of the aides work very well with Billy, and some of the others are less connected to him, but they get the job done. Dementia patients depend on routine, and the nursing home staff provides consistency in the nurses, but the aides rotate on a schedule I have never figured out. I find myself grateful for so much this past year. My list follows.

• Jesus. Lord and savior, comforter, Prince of Peace, the Great I Am.
• Billy. I'm thankful I can still touch him, hold his hand, kiss his lips, and stroke his face. He is drifting away from us in so many ways, but he knows that I love him, and many days, he knows my name. His spirit knows my spirit. I am grateful.
• The staff that cares for Billy each day. I can assure you they do not make enough money for all they do. One aide brings nice shampoos and bodywash, so she can shower the residents with something other than the all purpose soap that dries out their skin and hair. Another aide brings him burgers from McDonalds to snack on.
• Memories. The good ones especially, and the not as good ones because they are reality. Billy was big on tradition, and he didn't like to veer from it. He loved Christmas, and in spite of his years working with Wolfe Nursery where the Christmas season meant 12 and 14 hour work days often in very cold temperatures, he enjoyed decorating our house with lights that outlined our house and rivaled the Griswalds.  Each year he got on the roof and freehanded the shape of Texas in Christmas lights, and then he wrote Merry Texas Christmas inside the outline.
• Family. We have always been a loving family and what I would consider a close family. With all the "events" in the last several years, we are more loving, more tightly knit, and living in close proximity of each other, and we never take each other for granted.
• Friends. How would we survive without them? We are bolstered daily by those who pray for us, check in with us, laugh with us and cry with us. I am touched by those who visit Billy even though it's so difficult for them to see him like he is now. I am humbled and grateful to those who so generously help with the financial burden of caring for Billy.
• My job. As a good friend often says, I love my job always, and on bad days I still like my job. I work with remarkable people who care deeply about children and always help me focus on what is important.  

My hopes and prayers for 2013:

• I pray that Billy remains stable for as long as possible. For the over 31 years I've been married to Billy, he never weighed less than 200 pounds, and I never minded that. I pray that his weightloss will stabilize because he's lost over 50 pounds and a great deal of muscle mass.
• A cure for Alzheimer's Disease that will spare generations to come.
• I pray for the successful removal of my mom's tumor and a cancer-free life for her.
• I pray that my dad's disease stabilizes.
• Reconciliation and forgiveness in broken relationships.

I could write many more prayers for this coming year, and I most likely will. However, these are the most prevalent in my life at the moment.

I've struggled with writing lately. Everytime I decided to write, I couldn't find my positive spin. The holiday season has been busy, stressful, and some of the days seem blurred. I'm coming out of my fog and seeing the positives again. Happy New Year to all, and thank you for reading. God is faithful.

TWO POSTS IN TWO DAYS!

I'm not certain that I've ever written two posts in two days on this blog, s0 here's a first.  I wanted to write about the Medicaid hearing I had today.  I had no idea when I appealed the decision of HHSC regarding the co-pay they expected for Billy, how it all worked.  I'm still not certain, but I know much more now than I did before. 

First of all, you don't go to a place for this hearing, you call a number that is given to you at a specific time on a specific date.  You are given an access code to input when you call the number.  The person hearing the appeal does not work for the entity of the department making Medicaid decisions. She works in the legal department of HHSC.  The three of us had a conference call, and the hearing officer had allotted one hour for the appeal.  We were asked to raise our right hands and swear to tell the truth.  The representative from Medicaid was given the first turn to present her evidence.  I was told to wait until the hearing officer gave me the go-ahead to ask questions. Between the hearing officer asking questions, and the rep from Medicaid presenting her evidence, I got to ask questions after about 45 minutes. 

I know that I am far too verbose, and I really try to cut to the chase, but I felt a need to explain why I was asking to keep $500 a month of Billy's money. It will not surprise anyone who reads this blog regularly to know that Billy's case doesn't fit the "norm" for most Medicaid applications. In essence, I was allowed to ask ONE question, and we never really got an answer. 

The evidence I sent by way of the case manager for Billy did not get to the Hearing Officer. The representative from Medicaid explained that Billy had been denied benefits at first because they did not have the Medical Necessity document that should have been submitted from the nursing home. At that point, I interjected that the document was in their system, but it had not been found because at some point in the beginning, Billy's social security number was put into the system wrong - it wasn't even close. 

Without telling all the details of the hour long conference, I will just say that the hearing officer offered me an opportunity to get my evidence to her by December 3rd, and she would then determine if we needed to have another hearing. She gave me specific directions on how to send the information to her. I agreed to do that.  

I feel like I understand better what to do now. The representative is not there to help me, and they are not eager to tell any mistakes they have made. I will gather my evidence, and I will make certain it is received by the correct person. The hearing officer did not have to do that for me today, and once again, God has intervened and given me an opportunity for do-overs!  

I'll keep you posted, and as always, I appreciate your prayers. 

What all can happen in one month?

I know I can't tell about an entire month in one post, but I can give snippets.  Here are the highlights (lowlights) from October 17th (my last post) to today! 

October....

• I had several heart to heart talks with friends who know me, Billy, and the situation we've been in.  I decided that I don't believe bringing Billy home is a good idea for him. He needs the constant medical attention he gets now, he needs the socialization, he needs a consistent schedule, and he needs me to be rested and able to cope. I allowed emotions to cloud my reason, and when I started thinking of all the things we would do at home, I knew it would be more than I could handle.  I don't know if I could even get him into either of our showers.  He needs the simple walk-in shower with a chair that the nursing home has. He needs to be there, and I need to make it happen.  Thanks to my friends and family who helped me see the light. 

• PHIS had our annual costume social for our students. More students came to that than we've ever had...about 800, and in spite of the number, they were better behaved than ever before. Our PTA board got a really slow start this year, but when we got it all together - WOW! Awesome. This was held on a Friday night followed by our annual Memory Walk to END ALZ the next morning. I work with good friends, and that makes work so much fun!  

• The Memory Walk was fabulous this year.  It was a very cool morning and may have been the last fall day we've had since.  It's been unseasonably warm since that day. We had more than 30 people walk for Team BK, raised over $5000, and best of all, Billy came with us.  I knew he couldn't make the entire walk, so I borrowed a wheelchair, and he rode all the way - except for when he fell out of the wheelchair because he randomly decided to stand up! No harm done.  It was a special day having our nephew and one of Billy's long time friends since college push Billy in the wheelchair throughout the walk.  Love our friends and family. 

November thus far....

• I went to Canton's first Monday for the first time ever...along with thousands of other folks who thought November would be a perfect time to go.  It was crowded and really HOT, but I had a blast with friends and Shelley. You know...friends and family. 
• And speaking of family...the day after Canton, we all (my sister and her family, my sister-in-law and nephews, Shelley and Andrew, and me) struck out to Corsicana to load up my parents. It's been a process, but they are getting settled into their apartment. 
• The first day that Mom and Dad officially lived in their apartment, Leslie and I were on our way to Corsicana to get more of their items when my aunt called and said, "We've got a real bad situation here!" It's one of those phrases that I'm certain Leslie and I will repeat because it so aptly describes what is going on! Seems that Dad decided that he was ready to go back to Corsicana, and as mom stood at his car window trying to reason with him and tell him he is not to drive, my aunt and uncle drove up just to visit. Before all was said and done, the nurse and the marketing director, Marti, were all talking with dad. The nurse had my uncle pull his truck behind Dad, blocking him from leaving. Mom got in the passenger side and the marketing director got in the back seat, and they all chatted until Dad said he would come back in when he was ready.  Mom was exhausted from it, and she went inside while Marti stayed in the backseat just shooting the breeze with Dad. After a while, he said he was ready to go back in. In the meantime, Mom had given my aunt her car keys, so she could take the car back to her house. Dad went back in, my aunt and uncle took the car to their house, and another crisis was averted.  Family and new friends are there.
• After about a week at the retirement center, Mom needed to buy some items at Walmart. I offered to take her, and Dad goes where Mom goes. Off we headed to Wally World with Mom trying to convince Dad to use a scooter in the store.  He had his walker, and that was all he planned to use. My Facebook friends have read this story already, but indulge me. We lost Dad in Walmart, even though he shuffles with a walker, we lost him. I asked Mom to stay put while I looked over most of the store for Dad. I finally found him walking slowly from the entrance on the opposite side of the store where we saw him heading last. He was happy to see me, and I noticed he did not have his walker.  I asked him where it was, and he told me he had no idea. I took him to Mom, and he promised to stay with her while I searched for the walker which I found at the Customer Service desk. Did I mention I've been in a boot for a bum toe for almost a month, and by that time, my foot was so sore!  I am so thankful that Dad was okay. God watches over him when we lose him. So grateful. 
• School is sometimes a respite for me with the schedule I have, but we have had so many unusual situations this year. It's exhausting at times. Early this past week, I received a call that the mom of one of our sweet fifth graders died unexpectedly and suddenly after bringing her daughter to school that morning. I don't know all of the moms in our school - too many kids to know them all, but his mom we knew well because her daughter has a terminal illness that we've met about numerous times. She was involved in every moment of her daughter's life, and she did an amazing job keeping up with all the medical appointments, all the medications, and all that goes with having a chronically ill child that most likely will not get better. We all stopped in our tracks that day. No one ever expects a young mom with such great responsibility to be there one moment and not the next. I believe it will have an impact on our campus for some time. We are reminded of the importance of not taking anything for granted. The family is surrounded by family and friends, and I believe we all hugged our loved ones a bit tighter that night.
• The next day I had surgery on my foot, a very minor surgery to straighten a hammer toe that appeared in early August and prevented me from wearing regular shoes. It was uncomfortable and really ugly, but the main reason I got it fixed was that I got a blister from wearing closed toed shoes, and the blister ulcerated and became infected. The doctor described it as the bone having a milliliter of skin covering it, and if the infection made it to the bone - adios to the toe.  I'm rather fond of my toes when standing and walking, so I felt like the few days before Thanksgiving week would be a good time to have the surgery.  Even though the surgery is really simple, I cannot walk or put weight on my toe for a full week. I am not graceful and never have been. I'm actually more clumsy than I used to be because my balance is poor - probably because of neuropathy in my feet.  I have been loaned crutches (I actually ran into the wall with them), a knee scooter (so far no huge wrecks, but my knee and shin are incredibly sore), and now a wheel chair. I got out in public for the first time last night when I went to see Billy. He found it interesting when I wheeled in on the scooter. I really wanted to join my daughter in running errands today and getting some things done. I didn't make it very far. I am so fortunate to have only a week with no weight on my foot. I will not take my mobility for granted again.  Tomorrow I will attempt to use the wheelchair without running into walls. It's not an easy thing to do when you're me.
• Today, when we went to see Billy, he was in the dining area beside Walking Betty patting her and telling her it would be okay. Walking Betty no longer walks, and she HATES being in the wheelchair. She cannot get out because they have a tray attached to it, sort of like you would see on a high chair.  I've seen her upset before, and she screams.  Today, she was crying with huge tears, and Billy was trying to make her feel better. I had to fight my tears because it made me so sad. I hate Alzheimer's Disease.

It's been an unusually busy month. I am thankful to have a week off work, and although I hate being immobile, I needed to slow down a bit and rest. I have and will continue.  Peace and love to all of you, and have a wonderful Thanksgiving as you count your blessings!


Pictures from the last month:

Billy's friend, Steve, visits.

Billy with Jonathan and Debra Hooper

Billy watches the Cowboys game and works a puzzle.

TEAM BK...Awesome!

Our Costume Social at school. Admin team dressed as Vampires.

End of Memory Walk with a potion of our team.

Memory Walk shirt back.

Billy at the end of Memory Walk.

Shirt designed by our son-in-law.

Good News and Mixed Feelings

First, the good news.  I've written about my parents recently.  My dad has been diagnosed with Lewy Body Disease (LBD), and my mom is fighting cancer. But that's really not the good news.

Lewy body disease is one of the most common causes of dementia in the elderly. Dementia is the loss of mental functions severe enough to affect normal activities and relationships. Lewy body disease happens when abnormal structures, called Lewy bodies, build up in areas of the brain. The disease may cause a wide range of symptoms, including

• Changes in alertness and attention
• Hallucinations
• Problems with movement and posture
• Muscle stiffness
• Confusion
• Loss of memory

Lewy body disease can be hard to diagnose, because Parkinson's disease and Alzheimer's disease cause similar symptoms. Scientists think that Lewy body disease might be related to these diseases, or that they sometimes happen together.
Lewy body disease usually begins between the ages of 50 and 85. The disease gets worse over time. There is no cure. Treatment focuses on drugs to help symptoms.

It's been difficult for my mom to care for my dad and work on getting healthy. My sister and her family, my sis-in-law and her boys live within a few miles of me, and we've wanted them to move here for at least five years.  So, here is the good news:  In less than three weeks, we will move them to an assisted living facility in nearby North Richland Hills.  While Mom doesn't require assisted living, Dad certainly does, and they want to stay together.  We are thrilled to have them close by, so we can see them often and help care for them.  It's a huge change for them moving from a three bedroom home they've lived in for forty years to a two bedroom apartment. I know they will have some ups and downs, and I pray for many more ups!  Mom will not have to be concerned about their meals, cleaning the house, having the yard done, etc. Please pray for a smooth transition for my parents. 

On the side of mixed feelings....Billy is not doing so well at the moment, and I'm not handling it so well either. When I went to see him Monday evening, he made a bee line to me, grabbed my hand and said, "Get me out of here!"  He was more articulate than usual. The other residents were still in the dining room eating, and Raymond (evening nurse) told me Billy had not eaten well, and they couldn't get him seated again. I took him over to his place, and he had eaten half of a grilled cheese sandwich and a few veggie sticks. He wouldn't eat any more sandwich, and he had not touched his soup. I fed him his mandarin oranges, and then he told me he was done. I walked him down the hall to the TV room and asked him how his day had been...."Terrible" was all I understood. Nothing else he said made sense. We sat for a bit, and he started talking again, and he said something about he wants to be with me.  Each time he says something like that, my heart sinks a little....or maybe a lot. It's a physical pain, and I fight the tears. I had to leave after about an hour and walked him back down to the dining area where Raymond was.  He told me he had noticed Billy being very down lately....saying he wasn't in the right place. He felt like Billy was depressed.  Before I left, I got a smile from Billy and felt a little better. 

I had a late parent meeting yesterday afternoon followed by an appointment at 6:30, so I wasn't able to see Billy last night.  I got there earlier today, and he was sad again and told me he wanted to go with me.  I had yet another meeting at school at 6:00 this evening, and Shelley got there as I was about to leave.  I wanted to talk with Raymond before I left, and he told me that after I left on Monday evening, he had taken his dinner break. When he returned, the aides were with Billy in his room and very concerned about him. Raymond felt that he was having an anxiety attack and sat with him for almost half an hour calming him.  Billy told him he was in the wrong place and needed to get home. Raymond and I discussed again that he seems depressed and he plans to mention that to the nurse practitioner who sees Billy weekly.

Shelley had stayed in the TV room tonight while I talked to Raymond, and she had not heard any of this. As I was leaving, she was taking Billy to the dining area to eat. By the time I got back to school, she was texting to tell me how sad Billy was, and she thought he was about to cry.  He doesn't do that....not since his disease has advanced. He also told her he didn't belong there and he needed to go home. 

This is new territory. I just told a friend this morning that I felt like Billy was almost better off now that he doesn't realize he has this illness.  He's happier.  And now this....it's almost like the weird day he had a moment of clarity a long while back. He doesn't typically articulate his feelings like he has the last several days. 

Since I received the Medicaid decision several weeks ago, and I was told I needed to pay almost $1000 monthly for his care, I've thought about the possibility of their Community Based Alternative (CBA) program. The first case manager who denied Billy's benefits told me that if and when he qualified for Medicaid, I should consider this. She said he could get the same level of care at home that he could get in a facility.  This a trend with Medicaid right now because it's much less costly for them.  If he is in the CBA program, we don't have to pay the $1000 monthly.  My first reaction was that I didn't know if I could handle Billy's care at home, but I've questioned that lately. Shelley and I can't handle having our hearts broken daily and know that he is so unhappy. Hence, the mixed emotions I'm having. 

I have a hearing with Medicaid services on November 20th, and I'm appealing the amount they want me to pay monthly.  If I could keep half of the amount, I would be able to make monthly payments on two of the major bills I owe for his past care - dental and daycare.  I have no idea how that will turn out or when I might know their decision. 

Maybe this time with Billy is for me to feel compelled to bring him home. Maybe it's not. I'm praying for wisdom and peace about my decision. I went back to my January posts, and I remember clearly the peace I had about placing Billy even though it was heart wrenching at the time. I wish God would hand me an Easy Button.

I'm including some photos of recent times with Billy....very recently he was in a silly mood, and I love those times.  Our sweet friend, Rhonda, was visiting from Midland this past weekend, and Billy was thrilled to see her, as was I.  Family and friends are such a blessing. 

Billy was silly this particular evening....love it!

He cracks up himself....still.

Sweet man.

We love when Rhonda comes to visit!

Please keep us in your prayers, as I know you do.  Hugs and kisses to all!