Friday, September 19, 2014

Frontotemporal Dementia

My husband Randy has early onset dementia.
Frontotemporal Dementia to be specific.
Behavioral Variant Frontotemporal Degeneration to be even more specific.
Or simply Pick's Disease.

Typing out those words proved to be just as hard as I imagined they would be, even though I have been formulating this blog post in my mind for the past 5 months. Still painful, still hard. Still unbelievable.

I write Randy's story so I can link it to family and friends… so I don't have to tell the story over and over. Also for awareness. FTD (Frontotemporal Dementia) is daily misdiagnosed, leading many down dark and scary roads. It's scary enough in its own right, but to spend years being told it's either Alzheimer's or bi-polar or dissociative disorder or PTSD... along with a myriad of meds resulting in horrible side-affects. Totally unnecessary if more Drs only knew about FTD.

FTD is not Alzheimer's. Its onset is not memory loss, but rather uncharacteristic behavior. I will be linking a few sites at the end of this post for your perusal, but I want this to be Randy's story, of being diagnosed with bvFTD.

First of all, you need to know Randy before the onset of this horrific disease… so that you will be able to understand the changes over these past four years.

Randy is a devoted husband and loving father to three grown children. And Pop Pop to four adorable grandchildren. He is thoughtful, personable and articulate. He thinks long and hard before weighing in on anything. He is wise, intuitive. A man of few words. Loving and accepting. The most honest, humble man I know. Compassionate and full of mercy. A complete contrast to me. While I am an extrovert, he is introvert. While he processes internally, I say most everything that crosses my mind. He's laid back, I'm impulsive and gregarious.

That being said, the changes were subtle in the early stages. We could easily associate those changes with all the changes going on in his life. His ministry of 30+ years was ending. His years of concerts, leading worship, senior pastor, an Elder, teaching marriage retreats and newcomers classes ended abruptly. He became withdrawn, unmotivated, flat. He expressed that he felt forgotten, useless. He disengaged from friends and family. He was depressed and isolating. Poor decision-making. He stopped paying the bills. We went into debt for the first time in our marriage (other than a mortgage). He would tell me what he thought I wanted to hear, rather than the truth. He made bizarre, uncharacteristic purchases. He would tell the same stories over and over with friends and family. He became obsessive compulsive. He lost his capacity for empathy.

And he couldn't keep a job. He worked part-time at Home Depot for a year before they let him go. He had other part-time jobs that also didn't last. I couldn't for the life of me figure out what was happening.

I was literally heartbroken. Who was this man that was living in our home? I would cry and plead with him to stop acting this way. He couldn't. So we sought counsel with a trauma therapist. After many months, he still wasn't responding. She finally consulted with a renown therapist that specializes in dissociative disorder and traumatic breakdowns, and was told she also had a client that didn't respond to therapy and was later diagnosed with dementia. So with fear and trepidation we had Randy tested with a Neuro-psychologist in April, 2014. On May 14th, he concluded it was Frontotemporal Dementia. We followed up with a Neurologist at Maricopa Medical Center. Randy had an MRI and the images were shocking. Conclusive. Definitive. Painfully. Horribly. Real.

My husband of 35 years ~ 60 years of age ~ had dementia. We were devastated. My heart hurt for our children, their spouses and our grandchildren. Randy's 90 year old Mom had already lost her 18 year old daughter in a car accident, her 55 year old son to cancer, her husband… and now Randy would slowly be leaving us.

I wrote this in my journal that day ~

Today I heard a horrible word ~ dementia. Randy has been diagnosed with Pick's Disease ~ a type of early onset dementia. I guess I kinda knew. Deep down. I am numb. Shocked. Sad. I've been grieving the changes in Randy. And now we know. We are losing Randy. The right side of his brain is deteriorating. And that's why he's not playing his guitar and writing songs. 
I am heartbroken, but thankful ~
~ that he walked our daughter Miranda down the aisle and shared at her wedding.
~ that he went to Disneyland alone just before the disease started progressing.
~ that he is happy.
~ that he is a good man.
~ that he loves the Word of God.
~ that he is faithful to the end.

I remember the Neurologist having compassion in his eyes. He told me to be thankful it was behavioral variant, and not progressive confluent aphasia. I was thankful. Randy could communicate. Thank you Lord. In fact as Randy & I were pulling out of the parking lot, Randy says "Can you believe they can see that my brain is shrinking! That's amazing!". Typical Randy, forever fascinated with science and technology.

Yes, Randy knows he has dementia, but that particular part of the brain does not comprehend the gravity of such a diagnose. In fact, he does not experience guilt, shame, embarrassment, regret, sadness or anger whatsoever. He has not been sad or angry once throughout this whole ordeal. He is happy and easily excited, much like a little boy. But when he is talking about God's Word, he is Randy, before the disease. You see, he reads the Bible on his iPhone or iPad all day long. Along with Mere Christianity by CS Lewis and Ruthless Trust by Brennan Manning. Over and over again. In fact he has memorized several powerful quotes from Ruthless Trust that make me weep. And he continues to retain every single fact he has ever heard or read. He can talk your ear off about fighter jets, the galaxy, the black hole and the Bible. I know, talk about a crazy mix.

But he can't do anything else. And I mean anything. My love language is acts of service, so you imagine the toll this took on our marriage before the diagnoses. Suffice it to say, it was heart wrenching. Anyway, he will occasionally get the mail, but that's it. He will tell me every day he's planning to finish his commentary on Hebrews, or write a blog post on the seven days of creation, or play his guitar and write new songs. But he can't. This is a man that played guitar and sang every day of his life since he was 10 years old. This is heartbreaking for me, our children, and the many others that have been deeply affected by his music.

Randy wrote a book while his disease was in the early stages. Little did I know at the time how significant this book would be. He wrote about his 30+ years in full-time ministry ~ Randy Thompson Ministries ~ traveling all over the country doing concerts in little churches, big churches and concert venues ~ leading hundreds to Christ ~ stories and life lessons he learned along the way ~ along with recording his 8 CDs. It's about the courageous journey of a man that trusted Jesus every step of the way. Oh, did I not tell you? Randy is a man of faith. Faith unlike anyone I have ever known. This man totally trusts Jesus. Totally. Unwaveringly. In fact he would mention at every single concert that "I come knowing nothing but Him crucified"… "that I long for the day when I can stand before Jesus and hear Him say "well done good and faithful servant"." Truly the nicest person you will ever meet.

We recently watched the movie "Philadelphia". The movie ends with Tom Hank's character receiving the verdict on his death bed and saying to his partner "I'm ready." I'm sobbing, and then Randy says to me "I am so ready Sugar! I can't wait to be with Jesus!" I climbed up on his lap and promised him that when it was his time to go that I would be so happy knowing he is finally with Jesus.

Just last night he came into my office, all lit up, beaming with joy and said "I just finished Mere Christianity (for like the umpteenth time) and I was just praying to Jesus, telling Him how thankful I am He died for me, that we have everlasting life and that He loves me so much!" Of course I cried and climbed up on his lap again. I wanted this pure, unadulterated faith to somehow penetrate my being, to heal my hurting heart, to give me peace to trust the Lord in these uncertain times. Oh how I love this man who loves Jesus with all his heart.

Like I said Randy reads all day long, unless he's walking... or as my FTD support group facilitator at the Banner Alzheimers Institute calls  "roaming". Alzheimer's patients "wander" and get lost, FTD patients "roam" and come home. They don't get lost as they are very ritualistic and repetitive in their activities. Randy has several walking paths ~ to Home Depot, the Mall, along the canal and Quick Trip. So when Randy went missing a couple weeks ago, I figured the police would find him walking along his usual walking path and bring him home. I had gotten home from work that night at 11:30 and Randy was gone. I drove around, finally calling the police at midnite. They finally found him sitting outside the Mall at 3am. Very scary. Needless to say, we are now entering the next phase, Adult Day Care while I'm at work. I hate that we're already there, a mere 5 months after his diagnose. But we can look back now and clearly see the signs as far back as four years, and while the disease progresses slowly in the beginning, it quickly picks up speed. I hate this disease.

But I am thankful for the Lord's presence. His strength. His love. He has given me such a deep love for my husband. Every day when I pull up to the house after a long day at work, he is standing there, waiting for me. And I am overcome with emotion. His smile melts my heart. He's still as handsome as ever. And I miss the Randy that once was. I whisper a quick prayer before I open the door ~ Lord, help me. I need You. You've got this, right? And He gives me hope to face another day.


Randy's YouTube video ~  Let the Music Last Forever

bvFTD links ~

Behavioral Variant Frontotemporal Dementia

Fast Facts about Frontotemporal Degeneration