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 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 He became withdrawn, unmotivated, flat.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 only daughter at 18 years old, a 55 year old son to cancer, then 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 DR 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 ~ all the stories and life lessons he learned along the way ~ along with recording his nine 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 most humble man 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 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 from 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

Sunday, April 20, 2014

Resurrection Sunday

emolyn & elsie
jonah & nathan
miss elsie lane
nathan & jonah



Have a joyous, blessed Easter!

Wednesday, October 09, 2013

joy in the journey

Ok, so where have I been for the past 6 weeks? Well, for the two of you that were curious enough to hang in there and are reading this, I'm ok. Lots of changes that continue to overwhelm me. For one, I'm working. And when I'm not working I'm too tired and exhausted to do much of anything else. My job is very physical. I work at a Fry's Store (Kroger) in the kitchen department. I love the variety of work, making the time go by fast. I love the atmosphere. I don't love unloading a semi truck-load of heavy boxes and crates every night. Oh and yes, I work nights. And because I 'm a morning person and wake up before 5, and I don't get to bed now till after midnight, I'm going on very little sleep these days. Thus the lack of blog posts. Sleep deprivation has stolen much of my ability to concentrate and create interesting blog posts. And let's be honest, I don't have much of a life to blog about since starting work.

Anyway, enough of the negativity.
The weather here in Phoenix is simply gorgeous. We've been well below 100 for weeks. That usually doesn't happen till after Halloween. My cool morning walks with Koda are truly the highlight of my day. I cry out to God to give me strength to do the things that need to be done and to give me peace, joy and contentment. Oh and love. His love.

Yesterday I was talking to God about joy. If my circumstances never change, can I truly find joy again?  Well, when I got on Facebook a couple hours later, my friend posted this. Oh and btw, she is battling cancer. And she is a mother to four young children. And she has joy!

I was thinking about joy this morning. It isn't necessarily present in those you think it should be. I have been surprised to see a real lack of it in the rich and the famous and I have observed a serious supply in the weak, even the suffering and those who live simply. It is a confusing emotion because in some people it isn't even present. Joy is a gift. One you must choose to unwrap, no one can do it for you. The amount you have is the amount you are willing to receive. It comes directly from God. It is the cure for anxiety, weakness and fear. It is what fills up the hole so those things can't enter. It heals us from pain, loss, need, sorrow, illness and even kills cancer. It comes at a price that some people think too expensive. A choice to let God make your choices. It comes with a hunger for God's Word and a relentless pursuit to fulfill His passions. 
But seek first his kingdom and his righteousness, and all these things will be given to you as well. Matthew 6:33

Wow, did I need to read that or what! So this morning on my walk with Koda, I chose to unwrap joy... to put on joy. To let joy heal my sadness... my fears. I will choose joy in the journey. And be thankful. No matter what God allows in my path.

Ok, so I can't post a blog post without photos. These are some recent photos of my husband Randy with our twin grandson's Nathan & Jonah. They are 17 months now and cute as bugs. So thankful for these little guys. They sure bring a lot of joy to our lives.



Monday, August 26, 2013

jury duty randomness


I am currently sitting in Superior Court of Arizona in downtown Phoenix ~ awaiting jury duty selection. I will be here for 8 long hours. But no worries, I came prepared. In fact, I resembled someone about to embark on a month-long cross-country back-packing trip. My bulging backpack got quite the looks going through security.
Just so you know, I have never done this before. I have either been pregnant or nursing or no babysitter, or my group just never had to appear when I called the day before. And I’ve got to be honest, I’ve been rather anxious about the whole ordeal. But now that I’m here, I’m ok. I mean think about it, I have a whole day to journal, blog, read, do whatever I want, and not feel guilty.
So, I’ll be posting random thoughts throughout the day to keep me entertained, and hopefully you too.
  • I ate most of the lunch I packed by 10am
  • I’m liking the private cubicles for us laptop-ers
  • A friend on Facebook posted about the new Pumpkin Spice M&Ms
  • I want them in the worst way
  • I reorganized my sewing room over the weekend
  • I downsized my wardrobe over the weekend
  • I feel pretty good about my weekend
  • Koda & I take walks every morning at 5:30
  • Koda's our dog and she misses Tyler terribly
  • So do I :(
  • Dumb vending machine... I pushed the wrong numbers and got a Baby Ruth instead of Peanut M&Ms
  • Ok, dumb me
  • Most everyone has left for lunch... but not me
  • I made a big pot of Ham & Split Peas soup last week
  • Perfect for our overcast, rainy weekend
  • I don't want to get picked for a trial
  • Cuz guess what? I'm starting a part-time job next week!
  • The (Fancy) Fry's @ Tatum & Shea hired me!
  • I will be working housewares- designing displays and end caps, ordering, stocking, inventory and customer service
  • SO excited to get started!
  • Hoping to work lots and lots of hours
  • We've been without a washing machine for the past 6 weeks
  • We were given one two weeks ago, though they weren't sure it worked
  • We replaced a few parts and it still wouldn't work
  • We're being given another one this week that works ~ yes!
  • Thank you Jesus!
  • Thankfully I wasn't picked to do the trial 
  • My Dad's So God Made a Farmer video reached over 40,000 views this week!

My son Tyler moved to Wisconsin 6 weeks ago.
He recently visited the farm where I grew up and climbed the 90' Harvester Silo.
And that's the house that built me.


Check it out! My sister-in-law took this photo of Tyler
while he was taking pics from the top of the silo. Yikes!


Wednesday, August 14, 2013

choosing to let go


  • so much has changed over these past two years
  • and it has pretty much rocked my world
  • you see my security was a savings account, jobs, etc.
  • and because God is a jealous God, He wants to be my rock
  • and while it has been a painful process...
  • I am choosing to let Him love me and meet my needs
  • I am choosing to trust Him for what I can't see
  • I am choosing to walk by faith 
  • I am choosing to praise Him and thank Him throughout the day
  • I am choosing to be strong and courageous instead of anxious and fearful
  • I am choosing to rejoice in hope, be patient in tribulation and constant in prayer
  • I am choosing to take better care of my body, mind and soul
  • I am exercising ~ Randy & I are hiking South Mountain every morning
  • I am totally off caffeine and most sugars
  • reducing my anxiety and keeping my blood pressure down
  • I am choosing to depend on Jesus for everything
  • I am choosing to be content with little and with much
  • I am choosing to let go of my need to take control when everything is out of control
  • I am choosing to trust God with my husband 
  • I fail every day, choosing to turn from God and do things my way
  • but wake up the next day and choose God's grace 
  • but in all my pain and suffering I am coming to a deeper understanding of God's goodness, faithfulness and unconditional love for me as never before
  • thank you God for being my refuge and strength and my very present help in times of trouble

Randy took this iPhone photo just as the sun was rising this morning on top of South Mountain ~ the golden hour. It was cool and breezy as I marveled at the beauty of God's glorious creation.

Monday, August 05, 2013

Roadtrip to The Rim


The Mogollon Rim above Payson is one of my most favorite destinations in Arizona.
We're talking a two hour road trip, a 40 degree drop in temp and beauty beyond belief.


Randy & I sat for hours looking out over the largest stand of Ponderosa Pine in the western hemisphere and marveling at God's creation.


We parked our van mere feet from the edge and took occasional naps in the back of the van on a memory foam, with the sliding doors wide open, letting in the cool mountain breezes.


Heaven on earth.


Of course it's always about the anticipation of a possible thunderstorm ~ with lots of rain!
But that was not the case this time.


O beautiful for spacious skies, For amber waves of grain,
For purple mountains majesties above the fruited plain.


America! America! God shed His grace on thee.


Have I not commanded you? Be strong and courageous
Do not be terrified.
Do not be discouraged,
for the Lord your God will be with you wherever you go.
Joshua 1:9

Monday, July 22, 2013

Wisconsin Songs songbook


Last weekend I checked out a new thrift store next door to the ARC in Tempe.
And I found this songbook for $1.00. 
I know, I was shaking a tad bit when I picked it up...


... and saw that the copyright was 1915.


The first edition copyright was in 1898.
This one is the fourth edition.
Good to know I didn't pay more than the original Price per Copy. :)


I've enjoyed looking through the song list... 
to name just a few ~

Victorious Badgers
A Wisconsin Song
Wisconsin Co-ed Song
We're Loyal To You, Illinois (that's strange)
Let's Drink To Old Wisconsin

and what's a Wisconsin songbook without ~
Polly - Wolly - Doodle


Sunday, July 14, 2013

Tyler's move to WI


My sons Shawn & Tyler are headed to the farm in Wisconsin!
And I just got a text saying they are almost there. So very thankful they made it safely!

I'm posting the most current photo of the farm that my niece recently posted on Facebook,
of her darling daughter Preslie playing on the swing set. 
Oh the hours I spent swinging on that very swing set while growing up on the farm. Only back then the swings were made from slats of wood. Ouch.


Shawn & Tyler took off Saturday morning and drove from Phoenix to the farm in two days! The farm is 40 miles south of Eau Claire off I-94. That's almost 2000 miles in two days!

And thank God they made it. Or I should say, thank God Tyler's '98 Honda Civic made it!


They will be staying at my brother Ron & Deb's cabin...


... that overlooks the 350 acre farm.
When you click to enlarge the image you can see their 90' blue Harvester silo in the distance.

They will have all day Monday to hang out with their Uncle Gary. My brother will take them around to their favorite spots and they will have the best time making memories. Then Tyler will take Shawn to the airport in Minneapolis Tuesday morning, and head back to my sister Ginny's home in Eau Claire where he will get settled in their vintage Airstream out back, while looking for work and eventually a place of his own.


Thursday night we had a Farewell Family Dinner at Miranda & Aaron's home.
We affirmed Tyler by reminding him of his many strengths, and all that we love about him, and how much he means to us, and that he is such a good, good man. Then we prayed that God would show him every day that he is right where he should be... and that Tyler would let God lead him through chance opportunities, open doors, new friendships, the good times and not so good times... that Tyler's faith would grow.


I am so proud of him for stepping out in faith and becoming more independent,
but also becoming more dependent on God.
I will miss him terribly. But SO excited to see how his adventure unfolds.


Even though I was sobbing at this point, I managed to snap a few photos as he was pulling away Friday evening. He was spending the night with his brother so they could leave first thing Saturday morning. I was a complete mess, but so happy for the journey he was about to embark on.


No matter what happens ~ whether he is gone for the summer, or 2 years or 2 decades ~
he is forever a part of us. We're his family and we will support him in whatever he chooses to do with his life. We love you Tyler!

Friday, July 12, 2013

my online resale business


The very first Estate Sale I ever did was for my husband's Aunt Evelyn. We're talking many years ago. And this here old wicker laundry basket didn't sell, so I took it home. It's very large and very vintage and in very good condition. And while I could have gotten way more on eBay, I chose to post it on Craig's List and got $25.00. But here's the cool part, I sold it to the nicest gal. She had just moved here and was looking for treasures online. I was way more happy that she got it, than had I gotten more from some random bidder on eBay. That's what I love about Craig's List. I have yet to have a bad experience. In fact, every customer could easily become my new best friend. I am not even kidding.


I recently listed this Rock Tumbler for a friend and got $75.00. Again, a great experience.


And then just an hour ago I sold this king-size chenille bedspread to the nicest lady ever. Again, I could have easily doubled my money on eBay, but instead settled for $75.00 so I could meet the one who would love and cherish this gorgeous, fluffy cotton chenille bedspread. And what a dear precious lady.
And so far, I might have hugged everyone that has ever bought from me on Craig's List. ha!

I still have this cabinet/ cupboard (below) listed on Craig's List for $25.00. I bought it many years ago at the JC Penney Outlet Store here in Tempe, with plans to paint or stain. But I never did. But let me tell you, I have gotten years of use, functioning in more ways than you could imagine ~ telephone stand, storing phonebooks, electronic games, greeting cards and stationery, a message center and much, much more.
Let me know if you want to come check it out!




Tuesday, July 09, 2013

a summer cocktail


Ok, it all started when I went to Big Lots for english muffins and saw that they had Welch's grape juice on a clearance table for 25 cents each. For reals. Click the pic and see for yourself.
And then I found the can of Mulling Spices buried in the back of my pantry. Yes, it's at least three years old but who cares. Well, upon reading the directions, it says to add the spices to grape juice, simmer for 20 minutes and then strain through cheese cloth. You can either make it a hot drink or store in the frig for a summer iced drink... 


... by adding rum
Ok, so they maybe suggested you add rum.
Well, that's when I remembered I bought a bottle of rum years ago to make The Pioneer Woman's Christmas Rum Cake. Remember that recipe? Oh my gosh, the best rum cake on the planet!
So I find the bottle of rum (and hope it's still good) 
and commence to making me a spiced apple iced rum drink.


And let me tell you what ~ so SO good! 
And you know what else? The cost for this strangely concocted cocktail only set me back a cool 25 cents! Haha!

Monday, July 08, 2013

garage transformation


I should probably begin this post by telling you that here in the desert southwest we don't have basements, nor do we dare store anything in our attics. Needless to say, our garages serve many purposes. One of which rarely includes storing a vehicle. I know. Doesn't make much sense does it. Especially when you realize that the most expensive thing we own is parked outside in the hot, blazing sun, while the total contents (of crap) parked inside our garage adds up to a sum total unworthy of such digs. 
Nine years ago I did make room for our van just days before my son's wedding. My family from Wisconsin was coming and the thought of them getting inside a van that had been sitting out in the sun and most likely registering over 200 degrees, did not sit well with me. So I worked my butt off. Literally. But unfortunately short-lived, cuz soon after the wedding, the van ended back outside again.


Well, we are now a one-vehicle household. So that got me thinking that we really need to be better stewards of what we've been given. So for the past three days I've gone through every bin, bag and box... purging, sorting and reorganizing every nook 'n cranny. And yes, it was well over 100 degrees inside that garage. But I survived by drinking gallons of water. And another part of my incentive was to find things that our son Tyler might be needing in his upcoming move to Wisconsin.
But seriously,  the best part of all ~ getting inside a van that doesn't take several miles to finally cool off enough so you don't think you're going to be the first person that actually melts to death. Best. Feeling. Ever.

Monday, July 01, 2013

heroes remembered


Nathan & Jonah were dressed in their patriotic red, white & blues in church yesterday. So of course I had to whip out my iPhone and snap a few photos.


And then I find out that Jonah is walking! Oh my goodness, he thinks he's so cool.


Nathan isn't the least bit interested... he's more verbal of the two.


But my heart is heavy and sad this morning. 
19 elite hotshot firefighters from Prescott, Arizona died in the Yarnell wildfire yesterday.
I can't imagine...
Praying for the family, friends and firefighting community that are grieving the loss of these brave young men.