Monday, January 28, 2013

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.

Wednesday, January 9, 2013

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.

Tuesday, January 1, 2013

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.