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 He became withdrawn, unmotivated, flat.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

39 comments:

Anonymous said...

Oh my Linda. That is such an inspirational story. I cried through the whole thing. Not sure of the different types but my Grandmother has dementia and i am worried. Your story helped me understand.

Keetha Broyles said...

Oh Linda. I am so very sorry to hear this. We have a friend with Pick's who is also just over 60. It is definitely hard. I'll be thinking of you & praying for you.

Kathy Grayczyk said...

Thanks Linda for sharing your heart. It is a horrible disease but Randy is walking it in grace. Such a beautiful picture of The Lord never letting go. I love this photo of Randy. He
knows who he is. Nothing can rob him of this. God bless the two of you. I'm so glad we have crossed paths

Cindy (Applestone Cottage) said...

Dear Linda,
My heart is heavy for you and I feel just speechless.
You shared with me but I had know idea that it progressed this quickly.
This is the most moving and heart wrenching blog post I have ever read.
Hugs and love and prayers dear friend,
Cindy

Anonymous said...

I love you guys!

Brandi Young

Susan Stewart said...

Thank you so much for your transparency and honesty Linda. I grieve with you. I still think of Randy and the way he ministered to me through worship on a regular basis. Sending hugs and love from Missouri.

Dianne Faldet said...

Linda, You have a wonderful gift of being able to share your message in such a beautiful way. My heart aches
for you and your family. You are in our prayers and I know that God will give you the strength you need to travel this path.

Jeff Heinemann said...

Linda,

There are no words I can share that would ease your pain. Randy was such an important person in my life, as he was in so many lives. He is such a man of God, and my prayers are with you all. God bless you.

Travis Stewart said...

Thank you Linda for courageously sharing your story. We grieve with you over the losses you are experiencing as well as celebrate the beauty of your marriage and commitment to one another. Thank you to both you and Randy for modeling faithfulness.

Travis Stewart

Beth Dales said...

Over the years, Randy's music has blessed our family so incredibly!! As little girls, my daughters would dance to it running around our living room and it still streams through the earbuds on all of our players. We were all numb when we first read your blog and will be in prayer for you all often. Praying for an increase in faith, wisdom, peace and perseverance through all of this. In some ways, it is nice to know that there is a medical explanation for the changes, but yet so sorrowful. We will always treasure the gift that God gave Randy, and will pray for you as we listen to his music.
Blessings,
Beth Dales and family

BostonBethany said...

Linda, I am not sure if you remember us from open door, but my husband had the golden retriever service dog. We feel enormously blessed to have seen Randy in concert at a church in Yuma sometime after fall of 2006, we can't remember when but he tells us it may have been his last until the Christmas concert this last year or the year before. My heart has been blessed beyond measure by the work Randy allowed God to do through him. There is a song on the Pilgrimage cd,I believe , that has the refrain of "praise the Lord....bow down before Him and praise the Lord." God has brought this song back to my heart many hundreds of times since we got the cd in Yuma. I pray that God will give you a peace that passes all understanding as you journey through these most difficult of days.

Deann Duffy (Gries) said...

Linda,
Not sure if you remember me from ODF it has been such a very long time! I have carried the memory of our friendship and Randy's music with me since the very first time I heard it. I remember being such a new awakened Christian and preparing to be baptized, I had listened to his music over and over and at some dinner one night I asked him if he would mind if I used one of the lines from his song. He was so kind and gracious explaining to me the words came directly from the bible and pointed me to the address! I am sitting here confused, and so hurt for you and your family as well as joyous in Randy's ever faithful Heart for Jesus. My prayers and thoughts for you. I am so very blessed having known your sweet family.

Deann

Sarah said...

Because I've read your blog for so long, it was heart-wrenching to read this post. We've never met, but you are like a friend, Linda. Tears were quickly in my eyes.
Thank you for sharing. Praying for your whole family!

Anita Diaz said...

Linda, I do not know what to say. I'm praying for you both. I know God is faithful and in control, but it is so hard to understand how things work sometimes. I know you are cherishing every moment. Praying for God's mercy, grace and comfort. :-)

Nicole T said...

Beautifully said. - nicole

Mark Koxlien said...

Linda - Kaye and I are praying for you and Randy... This disease sounds like a robber and a theif, but in the midst of all that we know that God is in control. We remember the time we spent with you at our house and yours shortly after your nephew's death. It was great to get to know you and Randy better and I recall that through his death - so many others came to faith! It was also wonderful to have Randy come and sing and play at Bethesda. Thank you for writing this blog and helping us know how to be a part of your journey throough our prayers.

Mark Koxlien

Betsy Granger said...

Hi Linda,
I am so sorry to hear that you and your beloved husband are going through this. You will be in my prayers and the prayers of my congregation.

My mom was diagnosed with Early Onset Alzheimers at 59, but she too, had symptoms years earlier.

After having gone through Jorman's illness and death, I am so certain that we'll be together again. I have absolutely no doubt. And I know you believe the same. Have faith!!

Betsy Granger

Kathy said...

Linda: I had known by your last couple of posts that things weren't quite well. I have prayed for you and your family over this time waiting to hear from you again. I'm am so very sad to hear the news. We just have to remember that God is in control and loves you and your family very, very much. This is just such sad news. I will continue to pray for you. I have followed you for several years and feel as though you are a good friend and my heart breaks for you.

God's peace and my love to you. Kathy L.

Heidi@TheMerryMagpieVintage said...

Dear Linda, I think of you and Randy often. You and he are both such an inspiration to me and such an example of faith and enduring to the end. May God bless you with comfort and peace and strength!

Anonymous said...

I was able to see Randy in concert several time at my church in Mosinee, WI. It was such a pleasure to listen to him sing and play his guitar, I have several of his CD's and love the song "It's By Grace". I am sorry to hear about what is happening to him and wish him and his family continued strength and wisdom.

Anonymous said...

Thank you for sharing this desperate news and letting us know of your personal trial. I have often wondered why we have not heard more of Randy's wonderful lyrics and music - Dear Randy Thompson the Lord used you to bring me deeper into His presence you have brought scripture alive through your music- I listened to your music everyday as a new believer late 80's-90's)I'm deeply grateful to God for you!Count on my prayers for you and your family- Our God is good and His love endures forever-

Linda LSchlitz said...

I can't even express what I am feeling. I want to be there now. We want to help be the day care, and night care and any care that Randy needs. I don't want to be 2000 miles away. I don't want this to be real. I want to get in the car right now and come down there. I want clarity and direction and not acting on my emotion and sense of desperation. I want you to be free from pain and have the option to be home with Randy. I want to be able to show you Linda that the gift you have been given is so crucially important for the world to hear that the workman will be worthy of hire and you can make a living doing it. Between Randy's book, music, your writing and our music and your music and so much more...Time is short. You are so lucky to have each other...How can we help. We love you and are praying every day for grace...clearly God answers..you have shared it with me today and again I am blessed. We will be there...God's timing...Waiting on your word and God's leading. Joy comes in the mourning....

DanVergin said...

I don't cry much. I did tonight.
Blessings.

Erlinda said...

Prayers to Randy, you and your family.

Anonymous said...

As someones who's mother-in-law suffered from Pick's Disease I feel your heartache. It's such a degrading disease and easily misdiagnosed in the beginning. Thank you for sharing your story and helping others understand the disease. My prayers go out to your family.

Mindy said...

Dear Linda, I am so sorry to hear about this diagnosis. I know you will walk this by faith and will bring the Lord glory through all your tears of sorrow, tears of anger, and tears of faith. You will experience a journey just as hard as Randy's as caregiver. I am so, so, so very thankful that Randy's life and ministry is recorded in so many ways. His disease cannot take that away. I hope you continue to journal through this, because that will help you and continue Randy's story.

I'm thinking about the wonderful post you wrote years ago about your big adventure in moving and meeting Randy right away. You were the right woman for him then, you are the right woman for him now. I know you are doing an amazing job of caring for the man the Lord gave to you.

Please know I am sending much love, prayers, and tears your way this morning. I love you, sister!

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Anonymous said...

Thank you for sharing your story/journey. My husband has also been diagnosed with bvFTD at the age of 54. I hope many more get to read this and take away some hope, inspiration, and insight.

Lemonade Makin' Mama said...

Thankyou for the comment you left on my blog... my father recently was diagnosed with early onset alzheimers and we have been thrown into the storm with it. I am so sorry. Trusting that God never wastes our pain or our stories. KNOWING that He doesn't!!!

Sasha

Ellen Hovell said...

Linda, somehow I just saw this posting. I'm so sorry to hear about your husbands' painful diagnosis. We never can truly know what life will throw our way, but God has certainly been there as comfort and sometimes a venting board for our family too. I will pray for you all.
Ellen Hovell

Billy Van Horn said...

Oh Linda, I can only speak from my heart here. And it is broken for you and Randy and your family. I just read your story out loud in my "Radio Voice" and sobbed the entire time. There were times that I could not see the screen because of my tears. Although I only knew Randy for a few short years, (1994 to 1997) I have played the cassette He GAVE me (Typical Randy) when I booked him many times at NPBC, throughout those years I lived in PHX.

I can assure you that Randy's Ministry will continue through my Internet Radio Station and I will post links to his website on all my websites to promote his music, his ministry and to carry on his legacy and his Great Love for our Lord and Savior, Jesus Christ.

My tears were for Randy and you and your family, but His Story has spoken to My Heart and brought out even more tears of Shame for myself. Yes, I'm disabled for 12 years with CHF among a few other things, and I have left those "Things" stand in the way of me doing ALL I CAN DO FOR GOD!!! I complain, I'm tired, My Legs are swollen, I feel horrible... ANYTHING to just take a break, or put off what I Know is GOD'S Plan for the talents HE has given to me. Writing Music, Singing, Public Speaking, My Christian Talk Show Radio Station, etc. RANDY and His Story Written directly from Your Heart has inspired me to Carry On and Not give in to Satan's Defeating, Deflating, Discouraging Lies and Deceitful Attempts to Stop Me and My Work For The LORD!!!

So You See Linda, Randy Is STILL Uplifting, Inspiring and Encouraging Others To Carry On With The Work Of The Lord.
THANK YOU For Sharing Randy's Story. Your Words Of Love Are Amazing!
GOD Bless You All,
Billy Van Horn
www.FIARadio.com

Anonymous said...

Just found this while checking in. Just finished picking and singing Randy's version of When I Survey, and wanted to hear Randy sing it. I know there are many, but one of the crowns Randy will receive when he arrives in Heaven will, no doubt, be the one for saving my life, or at least allowing Jesus to work through his music and talent to reach me one morning in 1994. Suffice it to say, I had destroyed my life as a make believer, you know, those who attend church, on and off anyway, but never really get it. I was driving back onto Phoenix from Maricopa that Sunday morning, actually contemplating suicide, when I found an old cassette tape on the floor of my car. I popped it in and Randy's song, Calm the Storm, played. It was if Jesus himself reached though the roof of my car and said, "I did it for you Mark, I died for you." It was truly my road to Damascus, and I've never been the same. I still weep every time I listen to that song. I am no musician, but thanks to that morning, and Randy's gift, I began playing guitar, mainly learning Randy's songs at first. The lord has chosen to allow me to play and sing in my church ever since, but most importantly, I am on my way to Heaven! Thank you Randy, Thank you Linda!

leigh white said...

oh Linda I'm sorry to hear about Randy GOD has this, life is full of so many let downs but take heart Randy touched so many peoples lives. I went to a few of Randy's concerts and fell in love with his music I bought most of his cassette tapes when you could get only cassettes I would like to up grade to CDs. Its been a long time and wanted to see what Randy was up to and I came upon this, so sad and my heart goes out to you Randy and Family Thank you and thank GOD for sharing Randy with us. May GOD give you all strength to love him through it GOD bless you. Love you Randy and your anointed music Thank you

Sandee Denomme said...

We were heading home after a trip up north and had popped in one of Randy's CD's. Having first became acquainted with his music when I worked at KHEP Christian Radio in Phoenix, we got to know you both through ODF in the late 80's.

I decided to google RT Ministries and was shocked then, when I found your blog and learned the news of Randy's diagnosis. We grieve with you and for you.

We are still blessed by the four CD's we have of Randy's and now they will be even more cherished. Please know that you and Randy continue to bless believers and non believers by your faith, testimony and beautiful harmonies. Our thoughts and prayers are with you and your family.

Sandee and Dennis Denomme

Linda Thompson said...

Hi Leigh, I hope you get my response to your comment.
Thank you for your heartfelt words. They mean so much. I love knowing that Randy's music continues to be used by God.
Please come by for any CDs or I could mail them too. We live in Tempe. Do you live near?
Thank you again. God has blessed us so much. Randy loves Jesus and that will never change.
Please email me so we can connect ~ lindathompson825@gmail.com

Linda

Jim Perritt said...

Hi Linda, I just read the link you sent along with your email about the cd I ordered.I'm so sorry to hear about Randy's illness. I've met Randy several times when he cane out to the ministry I attend to do a concert.( I attend the First Baptist Church of Litchfield Park.) I think you and have met as well at one of the concerts. Randys music has been a great blessing to me.The two of you will be in my prayers.

Sara said...

My mother has FTD, and a small grace is that it is not bvFTD...oddly this is the same thing our neuropsycologist said. She lives with us now and our 4 children...this disease is cruel. I am struggling on a daily basis with the complete role reversal. Thank you for sharing...I know how difficult putting a name to the disease is. I too have begun writing about our new life.

Anonymous said...

While reading your blog, you were describing what I just finished feeling and doing. My husband, 75, just lost his battle with FTD on 6-5-2016. It is truly a horrible disease to watch someone you love die a little each day. The Dr. said he would get to where he could not walk or talk and even eat because the brain controls all this. The last 2 months of his life I had to put him in a nursing home. That was really hard, but I prayed every night for the Lord to take him home and not leave him in this state. He answered my prayer. Even though you watch this happen to him, final death takes is roll on you. I truly pray the doctors will finally be able to recognize FTD.

Anonymous said...

Thank you for your beautiful story. My husband is 62 and has only been diagnosed with Parkinson's, but having worked with people with Frontotemporal dementia, I'm convinced that's what he has.We split up 3 years ago due to his out-of-control behavior, and he was diagnosed with Parkinson's 1.5 years ago. I knew immediately that was the cause of his behavioral problems. I am so incredibly sad, watching him get sicker and knowing I can't help him. Thank you for reaching out. I found your story when I did a search on Facebook. I needed to read real experiences, not just the educational material put out by foundations.