Friday, July 22, 2016

trusting is hard

Good grief, I sure know how to make life harder than it needs to be. Why is that? How do we forget so fast? God continues to bless and provide. He continues to give me strength when I am weary and tired. He comforts me when I am sad and lonely. But I am still overcome with fear at the slightest uncertainty.

I think. Deep down. I don't fully trust.
He is allowing frontotemporal dementia to destroy my husband's brain. And if you knew Randy you would know, it couldn't be happening to a nicer person, to a more faithful servant.

Oh God, did I really just type those words? My heart is hurting, the tears are flowing, and I feel horrible. I am so tired of being brave in the midst of such sadness. I am tired of believing when it's so hard. I know. That's a lot of I's. And that's the problem. I can't do it any more. I need God to do it. I no longer lives, but Christ lives in me. Really? Yes. Then I need to let Him. You see, I am my worse enemy. I can question and sabotage His ways with the best of them. So... I will get out of the way and let Him live through me. I know. Not always easy. But He continues to prove over and over that He is trustworthy, good and faithful.

This past week was a good example. Randy is now taking a dial-a-ride cab to his adult daycare every morning. A miracle. You see, in order for me to work 8 hours, I needed to start at 6:30 am. Which is no big deal, because I start my day between 3-4 am anyway. I'm a morning person. Well, because his day care does not open till 7, I would need to make arrangements to have my neighbor here to get Randy in the cab. And you guys, it has gone so smoothly. Like amazingly smooth. So thankful for my neighbor, the nice cab drivers and the many who were praying for Randy & I. Yes, I had a couple melt-downs, fearing all that could go wrong... but in the end, all went very right. And while Randy could take the cab home, I wouldn't miss our rides home for all the world. One day I hope to capture the look on his face when he sees me walking through the front door of his daycare. He is beaming, smiling so big... and always says "YOU'RE HERE! YOU CAME!" Omg, just the best feeling in the world. And then we talk all the way home. With him repeating these lines every single day, and me acting as though he has never said them before, every single day.
  • Are you going to take a right at Victory and then a left on the access road and then a right at Guadalupe to go home"
  • "So you flew on Delta when you went to Wisconsin and your sister Jenny (Ginny) picked you up at the airport?" (every single time he sees a plane)
  • "When Tim & Betty come over they take me to Quick Trip for a coke and a donut and then they take me home!"
  • "I can't believe I got to see Don & Carol at Miranda's house!"
  • "Shawn always takes me to Quick Trip for a Coke and a donut."
  • "That's the church where I gave my brother Barry's eulogy." (as we drive past Tempe 1st Baptist)
  • I can't believe Miranda's baby is named William James Randy!"
  • "Are we going through the front door or through the garage?"
  • "Do you have a key to the front door?" (even though I have never not had a key)
Yes, even though it has been over 12 years since he gave his brother Barry's eulogy, he remembers much of what he shared. Deep down, I know he misses his brother, but knows one day they will be reunited in eternity.

I will leave you with a photo, cuz I can't not post without a photo.

Love this photo of Randy's Mom & Dad and his brothers.
Bob ~ Randy ~ Mom ~ Dad ~ Don ~ Barry

Wednesday, July 06, 2016

Holidays and dementia

I usually wait to write a blog post when I am doing well. But I also want to write when I am not doing so well. Which is hard, because I don't want to come off as poor me or a victim... but rather a caregiver struggling with emotions that run the full gamut on any given day. So here goes...

Monday was Independence Day. It was also my 4th day off in a row. As usual, Friday was my errand day. All those things I need to do while my husband is at his Day Care. I met with my counselor and friend Kathy, visited with Miranda and grandson Will, grocery shopped, to the bank, filled up the van, tires checked, and then picked up Randy. While some of those things used be done with Randy, not any more, as he will get out of the van and just walk away.

So we get home... and reality sets in. We are house-bound for the next three days. (Randy's day care is closed for the 4th) I do Sat, and Sundays pretty well, but Monday has the potential to push me over the edge. So I began the positive self-talk, the planning, the pleading with God for strength and motivation to stay busy and hopeful. But I made the mistake of checking Facebook and I became stricken with new layers of loss. I want my life back. I want the social life we once had. And I am griped with the fear of spiraling with three long, lonely days ahead of me.

So God gets an ear-full. I plead, I beg, I cry. Peace cannot come soon enough.

Saturday's goal was pretty simple. Gather the last of the documents needed to take to my tax preparer. It's been a very long and arduous task, but I was finally seeing some light. I have literally gone through every single piece of paper and file in our home and garage in the past couple months. But as always, it's one step forward and two steps back. Will I ever get ahead of the all-consuming paper chase?

I need an escape. A diversion. I am losing my grip. So I will myself to reorganize my sewing room. That will surely energize me. And it works. Gosh I love this room. But it's been sorely neglected these past 5 years, since the onset of Randy's frontotemporal dementia diagnose. 

Ok, I am on a roll! So I started on the playroom/ guest room... that's filled with my son Tyler's stuff that he's yet to take back to Wisconsin. All the while Randy is in and out of his room ~ either reading, or watching Christian television, or back in his room to read again. He's continually telling me "when Tim & Betty come over they take me to Quick Trip." Or he will ask me dozens of times if he can have more cookies. He's so sweet about it, never gets upset or sad when I remind him he just had some. Meanwhile, I am being all silly and sing-songy in however I respond or in whatever I'm doing. Everything becomes a song lyric or a rhyme when he's around. And often times I even tickle myself. He is completely entertained by me. He thinks I'm the funniest. We laugh and joke and reminisce. I am so thankful my sense of humor is still in tact... and his mere presence eggs me on. He's just the best audience.

Then I discovered Person of Interest on Netflix. Omg. So good. I proceed to binge-watch. But after a few episodes, I decided I best multitask while watching, to feel more productive and less guilty. So I brought in boxes and bins and trash bags (oh my) from the garage and went through every single item piece by piece. At one point I'm thinking "this is like going to the best estate sale and digging through treasures galore, but I'm not having to pay for a thing!" ha! Yes, I found things I forgot I even had. I did a lot of purging and repurposing. Went through 6 huge bins of costume/ vintage clothing. You know, from the past 4 decades in case someone hosts a costume party and you need the perfect retro outfit. Yup, I got your number.

All to say, I survived another holiday. Heck, I not only survived, I thrived. You see, I don't want to get by, cope or manage... I want to be present, enter in and trust! And every day that I surrender my plans for His is a good day. Every day I let go and let Him take control is a peaceful day. My circumstance haven't change a bit, but He's changing me, my outlook, my perspective. It's choosing every day to believe by faith that He is enough. That He is all I need. I seriously could not, I repeat, could not walk this unexpected journey without the Lord. Not one single day. 
Yup, forever and ever grateful.

Friday, July 01, 2016

Wisconsin Trip 2016

My Wisconsin trip was wonderful! Above and beyond what I could have ever hoped for. Thrifting and endless hours processing life with my sister, fish fry with my son, visiting with my Mom, sitting with my brother during his infusion, visiting the farm where I grew up, and attending my niece's beautiful wedding. My heart could hardly take it all in. So restful and so peaceful. And so GREEN! Love Wisconsin in June.

The House That Built Me
And my husband Randy did so well. I was so worried and anxious in the days leading up to my trip... wondering how he'd do with 3 different caregivers coming and going, but he did great. Thankful to my son and son-in-law and friend for loving and caring for him so well. I kid you not, the moment my son dropped me off at the airport, I was overcome with the most overwhelming peace and trust. Randy was in God's hands and I could enjoy every single moment with friends and family. And I did!

My brother Gary means the world to me. He has been my rock-solid, faithful friend throughout these past two years since my husband's frontotemporal dementia diagnose. So of course I was a mess watching him walk his daughter Anna down the isle. I wouldn't have missed this moment for the world.

Me ~ Ginny ~ Sharon ~ Anna
Did you know my sister Ginny and I are the original Dancing Queens? Ok, so more like dancing fools, but we love dancing to classic rock! And the playlist and sound system at this reception was simply the best! 

Love this image I captured ~ extreme cultures clashing along Wisconsin country roads.

I sure miss seeing my son Tyler every day since my return to hell, I mean to Phoenix. Yes, it was 118 when I landed. So fun riding in Tyler's '93 Ford F-150 Northland Edition. He's so happy living in Wisconsin and that makes this here Mama so happy.

Monday, June 06, 2016

Full of Grace and Truth

  • camping at the North Rim of the Grand Canyon was a dream come true, and ended up being our last significant road trip together. (2011) My favorite post from that trip is HERE.
  • the other day I asked Randy what his favorite Bible verse was and he immediately quoted John 1:14 ~ 
And the Word became flesh, and dwelt among us, and we saw His glory, glory as of the only begotten from the Father, full of grace and truth.

  • every day after picking up Randy at his day care, we have to turn right on a street called Victory. And every day Randy gets so excited when he sees Victory and says with all the excitement of a little boy "It's Victory!" And I immediately break into song ~ 
... in Jesus, My Savior, forever. He sought me and bought me

With His redeeming blood;

He loved me ere I knew Him, And all my love is due Him,

He plunged me to victory,

Beneath the cleansing flood.

  • and every day Randy finishes the song for me because I pretend I don't know all the words. It's just the best! 
  • the other day I decided to transfer the fluffy down from one pillow to another, to make it more full. Of course I did it in my backyard, and needless to say, when I got done it looked like it had snowed. Snow flurries were circling in the air till it all settled on the ground. Randy thought it was pretty funny. 
  • I imagine the birds will be using it to fluff their nests. (pardon the pun)
  • it was 117 degrees on Sat. and 115 on Sunday. God help us.
  • we don't have tornados, mudslides, hurricanes, earthquakes, snow or excessive rain. 
  • but we do have dust storms and extreme heat advisories warning of possible burns while stupidly walking barefoot to your mailbox. (which I have stupidly done)
  • I belong to a Frontotemporal Facebook Page. Yesterday I commented on a post about how this disease affects the caregiver. This is what I wrote.
"While I hate this disease and what it is doing to my husband, I thank God every day for the transformation of my life. Randy did everything and now I am learning to do things that while scary at first, have made me stronger, independent (and more dependent on God), compassionate, loving and aware that life is so much more than what I thought was the end all. I'm learning to be alone, and content with the simple things. The Lord does have a plan that can only be accepted through faith. I have no clue as to how each day is going to unfold, but He does, and He will give me the strength I need to love and care for my husband." 

Tuesday, May 24, 2016

Frontotemporal degeneration

The two year anniversary of Randy's Frontotemporal dementia diagnose came and went with very little fanfare. In fact I thought about it the day before and then two days after the date. So I guess that's good.

I went to the Frontotemporal Support Group at the Banner Alzheimer Institute two weeks ago and it occurred to me that we should not only share the date our loved one was diagnosed, but also how far back the actual onset of the disease began rearing its ugly head. I can now say my husband was showing signs as far back as 2010. So technically he's going on 6 years.

A year ago I met with a wonderful woman from the Area Agency on Aging. We recently had a follow-up assessment, and I was sadly aware that Randy would not have been able to sit with us as he had done just a year ago. Which makes me all the more mindful of the importance of documenting Randy's journey.
  • he is still happy and peaceful and content.
  • he still asks every day over and over to be taken to QT for a fountain Coke. 
  • yes, even while holding a QT cup full of Coke, and a 2 liter bottle in the frig.
  • he still reads the Michael Reagan book about his Dad President Reagan on his iPad
  • and the Book of John on his iPhone.
  • he loves telling everyone his new grandson is named William James Randy.
  • his only inappropriate behavior is introducing himself, along with a hand-shake, to total strangers, whether on a hiking trail, a walk around the block or in a parking lot.
  • so far everyone has been very kind. And he always asks their name too.
  • he will not let me cut his hair, trim his mustache, beard and finger nails. 
  • the painful removal of his toenails took two months to heal. But he never once complained.
  • his short-term memory loss is becoming more and more pronounced.
  • prior to his toenail surgery, I was lucky to get him to shower once a week. Since then, I've had to limit him to one a day. He's obsessed with taking showers.
  • God really does work all things for good. 
  • last week we took a road trip to Goldwater Lake near Prescott, Arizona.
  • sadly it will be our last road trip together. 
  • he does not do well when removed from routine and familiarity.
  • thankful to have captured these sweet memorable moments.
  • love this dear, sweet man with all my heart.

Thursday, May 19, 2016

My new grandson


"I was wide awake at 3am this morning when I got a text from my daughter Miranda ~

"My water broke, we're on our way to the hospital!"

"Omg, praying! Love you & Aaron!" 

Omg! My baby girl is having a baby today!

Her actual due date is tomorrow, Feb. 11th, but baby Will is coming a day early.

His name is William James Randy. James is Aaron's Dad and Randy is Miranda's Dad. And yes, Randy would remind me every day that Will is going to be named after him. He is so excited! Not sure if that will be evident when he actually meets Will, but I know deep down, he's thrilled."

I typed those words on my blog (Feb. 10th, 2016), then I got ready for work. I dropped Randy off at his adult day care and then to my Fry's on via Linda. I can actually see the rooftops of Scottsdale Shea hospital from my Fry's, so I would step outside throughout the day and with an anxious heart, pray for my daughter and Will. Sure enough, just as my shift ended at 4pm, I got a text from Aaron that Miranda was at 9 centimeters and that I could come to the hospital to await the arrive of Will. I was ecstatic. He was almost here!

Well, long story short... Will arrived 3 hours later after an emergency C-section. Trust me, you're going to want to read Miranda's riveting account of Will's terrifying delivery. He is truly a miracle!

Will's Birth Story

Omg, I am so in love with this little miracle. And my daughter is the best Mommy. And my son-in-law Aaron is an amazing Daddy. And God is always, always good!

Monday, May 09, 2016

My new job!

Huge news! This Saturday, May 14th will be my last day working at Fry's Foods.

Tomorrow (Tuesday) I will take my last personal day to attend a Frontotemporal Degeneration support group at the Alzheimers Institute... get a free adjustment at my Chyropractic office (Customer Appreciation Day)... and hopefully use my gift card at Message Envy. Yes, a much needed day of caregiving for the caregiver.

Leaving Fry's is bitter sweet. I loved my job. I met dear friends that I will miss terribly, especially my department head Patti. She inspired me every day to work hard. I am forever grateful for her influence and friendship. And these past three years were a welcome diversion from my reality as a caregiver to my husband. I could throw myself into my work and feel good about myself. But the past several months have been hard... especially on my body. My job requires heavy lifting, stocking shelves, squatting on bad knees, along with stressful, unrealistic demands from management. My job was sucking the life out of me. And I had little energy to be there for my husband when I got home. My poor back and neck along with my left wrist and knee were shot. The pain was unbearable at times, affecting my sleep and ability to get stuff done around the house.

So three weeks ago yesterday I sent an email to the volunteer group that signs up to spend Saturdays with Randy while I work, that included this paragraph ~

"Long story short, I will not be getting Saturdays off. In true Fry's-fashion, the managers miscommunicated and I am not going to 32 hours. Not yet anyway. And when I finally do, Saturdays will not be that 3rd day off, because it's load day. I am so sad and frustrated and confused. I can't keep up this pace. My body hurts and I am pretty miserable when I get home and have to care for Randy and our home. We leave at 7am and get home at 5pm. My job is no longer a respite from my reality at home. Lots of stress and crazy dynamics going on. I need a different job or a transfer. Closer to home and less physical. Please pray with me, that God would open a door. I have little to no energy to make it happen, so it sorta has to land on my lap."

And that's exactly what happened. The very next day a job literally landed on my lap!

It was a Monday morning. I was out front sweeping the patio, waiting for my friend Kathy to arrive. She has met with me every Monday morning since my husband's Frontotemporal dementia diagnose 2 years ago this month. I would not be where I am today without her counsel, insight, wisdom and acceptance.
So, my neighbor Jayne happened to drive by, pulls over to give me a hug and to ask how Randy & I were doing. I told her we were doing real well, but my job sucked. She then proceeded to offer me a job. Just. like. that. I had forgotten she was the alterations manager for Dillards. She knew I sewed and she wanted me to come work for her at the Dillard's Distribution Center in Gilbert. I was stunned. This couldn't be happening. Less than 24 hours after I sent that email!

And get this ~
The commute is better.
The hours are better and Monday through Thursday!
The pay is better.
AND sewing is my favorite form of therapy.

Seriously folks, my dream job!

So, after my last day this Saturday, I will then be taking the following week off with vacation pay and then start my new job Monday, May 23rd. I have a mile-long to-do list for that week off. I want to start my new job with a clean slate, clean house, clean garage and everything checked off that list. It's daunting, but doable.

Randy is so excited for me. But I have shed many tears throughout this whole process, grieving new layers of loss... missing my husband's wisdom and support. Change is so hard for me. And while I've had my full-share in the past few years, it has not gotten any easier. But I am quicker to give it over to God... more desperate than ever for His peace... and as always, He is quick to deliver. So thankful for His faithfulness. He is truly enough. My dependency on Him has freed me to dream again... trusting He has a plan for my life, to use me for His glory, to tell my husband's story and bring awareness to this horrendous disease. Pray for me as I let Him lead me.

So there you have it. Overwhelmed and humbled by this latest chapter in my life story.

To God be the Glory ~ Great things He has done! And continues to do!

Monday, February 01, 2016

dementia journey

I know I'm going to regret not blogging more often than I do. So here's hoping I post once a week from here on out. We'll see how that goes. The reality is I work 40 hours a week, I'm gone 10 hours a day and take care of my husband and hold down the fort the rest of the time. Needless to say, I'm tired. But thankful for everything. And I mean everything.  Too many things could have gone terribly wrong before my husband's Frontotemporal dementia diagnose.

So here's a list of bullets we dodged these past two years ~
  • it took less than 2 years to get an accurate Frontotemporal dementia diagnose, unlike many that are misdiagnosed for many years.
  • we found the perfect Adult Day Care right away.
  • no crazy drugs were administered before the diagnose causing adverse side affects.
  • he willingly gave up driving well before his dementia diagnose.
  • I was able to take over the finances before too much damage was done.
  • thankful he never cooked or baked, because now he's less likely to touch the stove.
All to say, God was watching over us and I am humbled and deeply grateful. Makes me all the more passionate about FTD awareness... to make sure more doctors and therapists and counselors and psychiatrists KNOW about this type of dementia. Frontotemporal dementia. Pick's disease.  Let's get the word out.

There is a definite ebb and flow to the deterioration of his brain. He is very much like a little boy, but then out of the blue will ask if he can rub my feet... which he did often, but hadn't the past 2 years. And might I add, it was a pretty amazing foot rub!

We will sit down with friends and he will pray the most beautiful, eloquent prayer before a meal... then take two bites, get up and go read in his room. He would go turn on the tv, but I've learned to hide the remote when we have company.

He will ask me several times within an hour if I can take him to Quik Trip for a fountain drink, and each time I will remind him we've already gone today, in which he cheerfully replies "oh, ok!" and happily go back to his room to read. He never argues, gets upset or is sad or angry. Makes me wonder if his short-term memory is being affected more and more with his repetitive questions.

He will be getting all his toe nails removed in the next week. He has not let anyone touch or clip his toe nails in well over a year. And we've tried everything. Needless to say, they are in real bad shape. He has to be in terrible pain, but his dementia does not let him identify the intensity of his pain. He says he's fine, even while limping.

He is fully aware that our daughter Miranda is pregnant and due any day with a baby boy. He mentions often that he can't believe Miranda has a baby bump. I'm hoping today he will let his barber give him a shave and haircut, so he's looking good for photo ops with our new grandson. It's been 2 months since his last visit. One never knows how it will go.

So I just got back from taking him... and it went... well, ok. The haircut didn't happen and he got up a couple times to leave when his beard was only half trimmed. Thankfully the shop owner Raya is a pro and she knows Randy has dementia and handles him very well.

So I dropped him off at his day care after the shave and I am now looking at a long list of things that I need to do on my day off... but unmotivated to do a single thing. I am so easily overwhelmed at the smallest tasks. But I will take baby steps today and begin the purging process. I have plans to fill the oodles of empty boxes in the garage with all my crap stuff and donate to my favorite charity thrift store. Yes, my goal is to get the van in the garage this winter.

Ok, I'm going in... cover me!

Me & my daughter Miranda at her Baby Shower

Sunday, December 06, 2015

Giving thanks

Giving thanks has gotten me through some of my darkest days. It softens my heart to the things around me that I couldn't see before... the miracles, the blessings, the goodness of God.

Thank you ~

  • for my health so I can work and care for my husband.
  • that Randy loves going to his adult daycare every day.
  • that he has no sense of time, so he thinks I am only gone a few hours, when it's really 9 hours.
  • that a friend we haven't seen in over 35 years, shows up at our door and prays for us... and fills our home with God's peace and presence. Forever grateful.
  • and the next day he fills our home with 50 lbs. of red potatoes he and his wife just dug up from their home in CO. Um, potatoes anyone?
  • for my long commute to work... praying, laughing and singing to Randy's CDs.
  • and praying, crying and praising Jesus after I drop him off. 
  • for my daughter's healthy pregnancy, for their little boy who arrives in February.
  • for God's continued provision. My heart can hardly take such love.
  • for Randy's songs that minister to me right where I'm at each day.
  • for the Alpine Bakery Bread store. (50 cent loaves). Ok, so I love bread.
  • for my friend Kathy that comes sit with me each week while I process and grow in her counsel.
  • for dear friends that volunteer to care for Randy every Saturday while I work.
  • that truth-tellers call at just the right time, when I am losing it.
  • that I got to host Thanksgiving for my sister-in-law and her two boys and their families.
  • for leftovers and the turkey carcass and my turkey noodle soup.
  • that Tyler will be delivering the package I send him for Christmas.
  • he works for FedEx and his route includes where he lives. How cool is that!
  • that a women in the UK just ordered Randy's CDs. Yup, Randy goes international! 
  • for the Frontotemporal dementia Facebook page. A wealth of info and heartbreaking stories.
  • my brother Ronnie and his valiant battle with multiple myeloma. So proud of him.
  • for his wife Debbie's strength and courage as advocate and caregiver.
  • for my new friends Pat and Mary Ann at my dementia support care group at Randy's daycare.
  • that Randy is so sweet and easy to love and care for.
  • for Glen Campbells documentary "I'll Be Me". So heartbreaking. So important.
  • for Randy's Mom and my Mom. Love talking to them on the phone every few days.
  • for my on-call mechanic Tim and my mechanic Terry. 
  • my van is being fixed as I type. So grateful.
  • for snow days. Ok, more like two days without a vehicle, where I am house-bound and hoping to get lots done. :)
  • that when I asked Randy "what is one Christmas decoration you want me to be sure and put out this year?". He immediately said My Mitten Garland. Click the link to read the story.
  • Love that it's his favorite too.

Saturday, October 31, 2015

frontotemporal dementia paradigm shift

Something is happening to me over these past couple years. I'm changing. As a result of the many changes in my life... I'm changing. Pain and suffering and grieving and loss have a way of making or breaking you. Trust me, it has broken me in more ways than just my heart. But it's also making me into the person God intended me to be... dependent on Him, desperate for Him. Did God allow the unimaginable, the unexpected so He could be all I needed, that He could be enough? Yes, I believe for me, it had to be to that extreme. Because He loved me that much.

You see my husband Randy was my everything. My rock. My comforter. My provider. He was a man of faith that heard from God and obeyed. And I followed. I trusted his walk with God. Everything I knew to be true about God was evident in Randy. God is good... Randy is good. God was good to Randy... so any goodness in my life was a result of riding on the coat-tails of Randy's God-given goodness.

And then my husband started changing. Little things. As far back as 2010. I have a vivid memory on a road trip of him saying "I'm not as sharp as I use to be". Of course it was in reference to getting older, but I subsequently filed it in my memory bank.

And then he really started changing. Unusual behavior. Detached. Isolating. Poor judgement. Lack of empathy. Poor decision making. Hiding the truth. Unable to do anything. He did not acknowledge our anniversary, Valentine's Day, nor my birthday. And today I was reminded... not even Halloween. This was a man that loved Halloween. He would transform our front yard into an old cemetery... with headstones, skulls, skeletons, iron gates covered in spiderwebs... and we'd sit out front for hours handing out candy. Three years ago he did nothing. And has not mentioned it every year since.

So many changes. My security, my motivator was gone. Yes, my motivator. He was invariably working on something... vehicles, yard work, home improvement projects... and that always motivated me to work on my projects. Needless to say, I have done nothing these past three years but go to work. Gosh I sound like a victim. What I'm trying to say is, the things I loved to do, that energized me, that fueled my creative juices stopped. And now I'm trying to figure out how to do life without someone by my side to motivate me in the day-to-day.

Grieving never stops, especially when the one you are grieving is still here. It is truly the long good-bye. Every day his brain is diminishing more and more. Every day that the disease is progressing, he is regressing. I am so thankful that upon getting his Frontotemporal Dementia diagnose (May 2014) all my expectations disappeared. I couldn't control this disease. I think we can all agree that expectations can be the death of us and anyone associated with our expectations. When we expect, we are trying to control. Randy's disease is degenerative. Short of a miracle, I can't change it. So I immediately loved and accepted him. Period. No more unmet expectations. Ever again. And I love him more than I ever thought possible. He is the best part of my day.

So the layers of loss come in waves. Some I can ride, and some literally push me over the edge. (assuming I even got in a boat) Just so you know, I can't swim, so imagine my fear issues surfacing in using this particular analogy. ha! Anyway, every day can trigger a loss. Quite frankly, Facebook pulls the trigger the most. Yes, Facebook happens to be my social life and it often backfires, especially when I am weak and tired, making me an easy target. Seeing friends visiting a National Park... total breakdown. That was our dream, to visit as many National Parks as possible. Church activities, weddings, gatherings... things we can no longer attend... so hard. So much of what brought me value, worth and significance are gone. Our influence, our ministry expressions were my identity. Even my roles as Mom, grandma and friend have changed dramatically. And Randy no longer sees me as his wife, but rather his caregiver. None of those roles should ever have defined me. It matters only how God sees and defines me. I have barely cracked the surface in grasping these Truths.

I recently had a major self-loathing day. I didn't like myself much. I was so done. I felt like such a failure as wife, Mom, grandma, sister, friend and caregiver.
So I posted this on Facebook ~

Yesterday was hard. I didn't like me much. I was so done with me, with life, with everything. My fears and failures had gotten the best of me. My pleasing and striving left me weary and tired. Then I woke up to this on Facebook ~ thank you Ann Voskamp.

"Lord, when I don't like me, You still love me, You still like me, You still lavish me with acceptance. When I am fed up with me, You invite me to Your feast. When I am done -- with me, with life, with everything, You whisper, "Hang on, I am making *all things* -- *you* -- new." (Rev 21:5)
And when I want to quit, You cup my face: "This great work I started in you? I won't stop that beautiful work until you are fully, completely, gloriously beautiful" (Phil 1:6, 1Cor 2:7)
So this becomes our brave & broken-hearted hallelujah, the one we sing into the dark, even when it's hard to believe:
I am His Beloved, His Beloved, His Beloved... and even now I will be held.
In the name of the only One who loved us to death & back to the real & forever life."

This is what I am choosing to believe. That He is not done with me. That He won't stop until I am fully and completely, gloriously Christ in Linda. This is becoming my brave and broken-hearted hallelujah, the one I sing into the dark, even when it's hard to believe. 

And it's changing me. 

Photo taken Oct. 2011 ~ Door County ~ Washington Island

Monday, September 07, 2015

Randy's 62 today

62 things about my husband Randy ~ he turns 62 today.

  • his Dad spent 28 years in the Air Force.
  • they lived all over the world.
  • Randy had three older brothers and a sister 2 years younger.
  • he started playing guitar and writing songs by age 10.
  • his Dad retired to Arizona in 1966.
  • Randy accepted Jesus as Lord & Savior as a teen.
  • he carried a Bible to school after his decision for Christ.
  • Randy's Maryville Class of '72 graduated over 1000 students.
  • He rebuilt his beloved '69 Dodge Charger in the late 70's.
  • his sister Patty was killed by a drunk driver in 1974 at age 18. (Randy was 20)
  • we met at a concert ministry in 1978.
  • we married in 1979.
  • he graduated from Grand Canyon College in 1980 ~
  • with a Bible and History degree.
  • immediately began 3 decades of full-time ministry.
  • Hand in Hand staff doing follow up, discipleship and concerts. 
  • High School youth pastor for 4 years.
  • three years as the church janitor.
  • Randy Thompson Ministries doing concerts around the country.
  • 90 different cities in 20 states.
  • worship pastor at Open Door Fellowship for several years.
  • senior pastor for 4 1/2 years.
  • Randy also wrote and co-produced 8 CD's.
  • he's a Dad to Shawn (1982), Miranda (1984) and Tyler (1989)
  • he took each of the kids on a WI Concert Tour when they were 10.
  • he was a great Dad.
  • he entered the computer age in the late 80's with the first of many Macs.
  • he was a computer geek from the get-go.
  • he recorded his last and final CD Thirsty at home on his Mac.
  • his brother Barry died of esophageal cancer at age 55.
  • Randy turned 50 a month later.
  • the day after hiking out of the Grand Canyon.
  • he reads the Bible most every day of his life.
  • he is a man of faith, trusting God with all his heart.
  • his Mom modeled the gifts of the Spirit every day of her life.
  • Randy was a wonderful, devoted husband and helpmate.
  • Randy wrote a book about his 30+ years in ministry in 2013.
  • Randy was diagnosed with Frontotemporal Dementia in May, 2014.
  • he stopped driving before the diagnose.
  • he still prays every day.
  • he still reads the Bible every day.
  • he still remembers most everything.
  • he still loves going to his adult day care every day.
  • he is still a prophet & evangelist, sharing Christ at the day care.
  • he still loves me and tells me so when I tell him I love him.
  • he has lost all empathy and compassion.
  • he no longer sings and plays guitar.
  • he rarely mentions his family and friends.
  • he has not gone in our back yard in over 2 years.
  • he is unable to do anything other than read, eat and watch TV.
  • he will not let me cut his hair or clip his nails.
  • he loves watching old Billy Graham crusades on television.
  • he has 4 grandchildren and another blessing on the way.
  • Emolyn & Elsie and Nathan & Jonah... and baby Mertz.
  • he is the best part of my day, driving to and from his day care.
  • we laugh and pray and play his CDs real loud.
  • we can spot the new Dodge Challengers like no bodies business.
  • he loves Disneyland and National Parks.
  • he loves Jesus and longs to stand before Him and hear ~
  • well done good and faithful servant ~ Matt. 25:23
  • he is aware he has dementia, but says he is doing great.
  • and he is, because he is trusting and believing the One who matters most.
* photo courtesy of Sandi Shipley Photography

Monday, August 03, 2015

the latest

  • reading Hinds Feet on High Places. Read it back in the late 70's.
  • so good. So what I needed. Love allegories.
  • watched Uncommon Valor yesterday. Cried and cried at the ending.
  • remembering those Vietnam POW bracelets in high school.
  • my husband finally got a haircut and shave after a year.
  • nothing short of a miracle.
  • dear friends took him to a Barber Shop and he let them.
  • now he needs his nails done. Like badly.
  • some of the many effects of frontotemporal dementia.
  • used an oil change coupon last week from Tempe Dodge.
  • we bought our 2006 van from them 162,000 miles ago.
  • my husband took such great care of our van over the years.
  • still runs like a champ.
  • I love sliced apples with crunchy peanut butter.
  • that's been my lunch every single day at work for the past two years.
  • and I still love it. Like a lot.
  • everyone at works thinks I'm nuts. (pun not intended) 
  • I only get two 10 minute breaks in an 8 hour day at Fry's.
  • I could take an unpaid 1/2 hr. lunch, but I would get so bored.
  • I'm either suffering with planter's worts or cancer sores.
  • for months. Not even kidding.
  • finished up season 5 of Blue Bloods.
  • love Commissioner Reagan.
  • Season 4 of Longmire is on Netflix in September. Can't wait.
  • our refrigerator died a few weeks ago.
  • found a similar one, like brand new on Craig's List for $395!
  • included delivery, installation and hauling off our old one.
  • I am humbled at God's overwhelming provision. Thank you Jesus.
  • and last but certainly not least ~ (drumroll please)

Our beautiful daughter Miranda and her amazing husband Aaron 

are going to have a baby in February!

So excited! So thankful. So very, very blessed!

Saturday, July 11, 2015


My husband Randy no longer carries guitar picks in his pocket.

He’s been carrying a handful for as long as I’ve known him.
We'll be married 36 years next month.

Just so you know, we’re not talking a few picks… more like a dozen. I know.

“Why do you carry so many picks?” I would ask.
“You never know when one might fall in my guitar” he would reply.
“Really? That many during one concert?” 
I would smile, cuz musicians are quirky like that.

Our granddaughter Emolyn became so enamored with her Pop Pop's guitar picks one Christmas (2009), she carried one in her little hand the entire evening while watching her Uncle Tyler, Pop Pop and Daddy play and sing Christmas carols.

Emolyn ~ Aunt Miranda ~ Mamaw
Tyler ~ Randy ~ Shawn
Well... a few months ago he was down to only one guitar pick in his pocket, even though he had not played his guitar in over a year. 

And then one day, he never put it back in his pocket.

I was heartbroken. I think I felt as long as he had one in his pocket, there was a chance he would play again.

So it has remained there ever since… along with some change, a wad of lint and his watch.

I couldn’t bring myself to remove it. So I let it collect a layer of dust, knowing one day I would snap a photo for keepsake.

My husband has Frontotemporal Dementia.

Picks Disease. 

You can read Randy's story HERE.

Wednesday, June 03, 2015

Randy's Care Instructions

My husband Randy goes to a wonderful Adult Day Care facility 5 days a week, 9 hours a day. And he loves it. But I also work Saturdays and the Day Care is closed on weekends. So I leave him in the care of precious friends and family that watch him in 4 hour intervals. I was recently asked to update Randy's care instructions for the volunteer group. I am posting them on here too, so I will remember this particular stage in Randy's frontotemporal dementia (Pick's disease).

Thank you so much for caring for Randy. Your time with Randy ministers to me deeply. It’s overwhelming to think you would take time out of your busy Saturday to love and care for my husband. Know that I am always praying it is a special time for you too.

I want to give you a few insights into Randy as you care for him on Saturdays.

He is still so nice and kind and easy to care for. That may not always be the case as the disease progresses. But God continually reminds me that Randy asked Christ into his heart, not his brain… and that no matter what is happening to his brain, it will not destroy the true essence of Christ in Randy. Can’t tell you what a comfort that has been to me as his dementia progresses.

He will immediately ask you to take him to QT for a Coke. He has a gift card that I keep loaded, that enables him to go into QT by himself. (unless he forgets his wallet) I would prefer one Coke per shift.

He will ask you to take him to Home Depot, AZ Mills Mall, the Art District, the Rim, Disneyland, etc. He is totally ok when you redirect to other things if you prefer not to do those things… such as, taking Koda for a walk, a hike @ South Mountain, walk around Tempe Town Lake or Kiwanis Park, watching a movie or Channel 21, etc. 

Do not take him to the Art District anymore. Not the appropriate place for him. 

He loves talking about the Bible, CS Lewis books, Disneyland, Ronald Reagan, the galaxy, the SR71 and memories you shared together. Ask him about the book he wrote on his 30+ years ministering in concert throughout the country. He loves to share about his years on the road and the life-lessons he learned along the way.

He will go in his room off and on throughout the day to read his Bible and that’s ok. Feel free to hook up to our WIFI if you choose to do so.

His memory is quite amazing. He will recall things that we have all long since forgotten. Don’t hesitate reminiscing about memories from the past. He will surprise you with the details he remembers.

Put a movie on rather than giving him the remote, otherwise he will flip through stations and drive you crazy. :)

Be ready in case he wants to take Koda for a walk. It will be a short walk. He will want to show you the Dodge Challenger parked in our neighborhood. Remind him that he is not to trespass on their property in order to get closer to the car.

The summer heat is coming, so do not take Koda for a walk till the sun is down, or the concrete will burn her paw pads. Randy will need to be reminded of that.

Keep the front gate and laundry room door locked, in case he goes outside quickly and without you knowing.

You are welcome to take him for lunch or dinner, but I would prefer it was fast food, cuz trust me, he will eat fast or take a few bites and want to leave, and you will have to take your meal home to finish. He will stay longer if you distract him with questions or stories. A burger, chicken sandwich or a sub at Burger King, Wendy's or Subway will suffice. No fries, as he will not eat them. He loves an occasional Blizzard at DQ.

He scopes out a bathroom wherever you take him. Be aware of that, as he may disappear quickly, because he sees a bathroom and will want to go.

Do not feel like you need to entertain him. He will mention a lot of things, but will want to leave soon after you get there. He is content to go for a walk or drive. Do not feel you need to have a destination where you get out of the car. Remind him that Linda is coming home soon, so we need to head back to the house.

He has no sense of time. Although he will want to go outside and wait for me around 8pm, knowing I will be coming around the corner at 8:20. I put a couple chairs out front, so you don’t have to stand till I arrive home. 

He’s becoming more restless and fidgety in the evening. He loves the old Billy Graham Crusades in Channel 21. That seems to help.

I do ask that after your time with Randy, that you take a few minutes to either text or email me with any insights, concerns or observations. It’s important that I get your take on his behavior as the disease progresses. 

Do not hesitate to call me or my daughter Miranda (if I can’t get back to you right away) with any questions during your time with Randy.

A simple thank you just doesn’t cut it. Wish I were more eloquent in conveying my heartfelt gratitude. Know that your prayers and acts of service have changed me and my walk with Christ and my dependency on Him. God bless you!

GOD is so Good and Faithful.

Love you all dearly,

You can read Randy's story HERE.

Thursday, May 07, 2015

this 'n that

  • blew through 4 seasons of Blue Bloods
  • have a huge crush on Tom Selleck
  • I do believe Rumer Has It on DWTS
  • my name is Linda Thompson and I'm a box hoarder
  • I can't let a useful box be destroyed at my job, so I bring it home
  • my garage is full of empty boxes waiting to be filled
  • and my van is outside in the sweltering heat
  • something is wrong with this picture
  • the new Jurassic World toys just arrived at my store
  • just watched the movie trailer and well... freaked me out
  • big shout out to Auto Zone & Discount Tires
  • single women, single moms and widows everywhere thank you!
  • I've always said if you talk to anyone long enough you'll know someone mutually
  • happens more than you'd think at my Fry's
  • I will have worked at Fry's for 2 years this August
  • 40 hour weeks are a bit much, don't you think
  • we should all work a 32 hour week
  • and make the same money of course 
  • Randy is obsessed with the new Dodge Challengers
  • we see several every day to and from the center
  • he drove a '69 Dodge Charger when we met in '78
  • he literally rebuilt the entire car at sometime or another
  • he still misses it and talks about buying another one some day
  • he has never fussed or argued about not driving 
  • he hasn't driven in well over a year
  • he's the best part of my day
  • 3 generations of Thompson Dads & Lads 
Randy ~ our son Shawn ~ his sons Nathan & Jonah (age 3)

Sunday, April 12, 2015

a year ago...

Seems hard to believe that it's been almost a year since my husband Randy was diagnosed with early onset dementia. Frontotemporal dementia. Pick's disease. You can read his story HERE.

There are still moments when changes in his behavior are so overwhelming it's like a punch in the gut. I can hardly breath.
And then there are moments that are so sacred and beautiful I don't want them to ever end.
Such is the life of a dementia caregiver.

I am so blessed that Randy loves the Adult Day Care Monday through Friday... and that dear friends and family spend their Saturdays caring for him while I work... and that I am daily covered in prayer... and that I don't have to worry because my needs are being met. But I do anyway. I pray to God to take all my worries and fears. Every day I lay them at His feet. And then systematically heap them all back in my handy, dandy backpack and carry them around all day. It's exhausting. I long for the day when He comes for His children and I can spend eternity in His presence. Till then, I cry out to Him daily, to know His peace, joy, freedom and acceptance here on earth.

I was recently asked what I miss.

I miss his hugs. He still hugs, but only cuz I first hug him.
I miss his compassion and concern for others.
I miss making memories with friends.
I miss the hours we spent dreaming about growing old together.
I miss doing life alongside my helpmate.
I miss hearing him sing and play guitar.
I miss family dinners.
I miss my family.
I miss him grilling burgers on the grill.
I miss our social life.
I miss riding shotgun with him behind the wheel.
I miss roadtrips.
I miss having someone take care of me.
I miss hearing him teach at the marriage retreats.
I miss sitting in church with him.
I miss hearing him worship.
I miss his leadership, influence and service.
I miss my husband.

Tuesday, March 17, 2015

hollyhocks & lighted reading glasses

  • my hollyhocks are blooming!
  • our 35 year old orange tree died this winter.
  • last year we lost our lemon tree in a storm.
  • miss our citrus trees.
  • my brother Ronnie is recovering from a stem cell transplant.
  • he is battling multiple myloma.
  • praying for his total healing
  • big toy reset this week at Fry's means brand new toys!
  • the new Lego sets are awesome.
  • I'm the toy department head at Fry's.
  • my husband loves the Adult Day Care he attends 9 hours a day/ 5 days a week.
  • he has no sense of time, so he thinks I'm only gone a few hours.
  • he has Frontotemporal Dementia.
  • blew through all 15 episodes of Rehab Addict on Netflix.
  • can't wait till they add more. Love Nicole Curtis.
  • determined to someday use my husbands power tools.
  • started Chiropractic treatments. My back and neck are a mess.
  • thankful for my full-time job at Fry's Foods.
  • dread the summer heat.
  • trying to figure out how to have a life outside of work and caregiving.
  • choosing to trust God every single day.
  • 5 years ago a friend made this video of my husband's song "I Choose to Live".
  • such powerful life-giving words of hope.
  • bought the perfect pair of light-weight capris at a thrift store last week.
  • checked the tag today for washing instruction... they are "maternity" capris! :)
  • recently found these LightSpecs by Foster Grant on clearance at my Fry's.
  • I can never have enough light while reading. Love them!

Sunday, February 08, 2015

The Joys of Dementia

One of the characteristics of frontotemporal dementia is uncharacteristic behavior. One in particular impacts appearance and personal hygiene. It never, ever occurs to my husband Randy that he should brush his teeth, shave, take a shower, cut his nails or groom himself. Things that he did without thinking. SO, he has not shaven or gotten a haircut in several months. I have not let it bother me too much, because he truly wants to do those things. He. just. can't. He will let me start a haircut and then immediately tell me he needs to go read. And no amount of bribing works. A QT Coke? A DQ blizzard? Nothing. So whenever I am given even a minute, I go really fast and make sure I'm cutting symmetrical, so when he is done, it's not too lopsided.

Well, the other day I was determined to give him a complete haircut and while he means to let me, I knew I had to come prepared with major distractions. Meaning LOTS of questions and LOTS of talking. So we began and I'm seriously cutting like a madwoman and talking like a lunatic... and proceeded to cut my knuckle. (just so you know I was a professional beautician before I moved to Phoenix) Needless to say, it started bleeding. But that was not going to deter me. I was on a mission! Yes, there was blood dripping onto his head, neck and forehead, but I kept yapping and he kept answering my questions. It was not my finest hour haircut, but by golly I did it! And when he had had enough, he proceeded to tell me he had to go read... and then I proceeded to tell him he had to go take a shower because their was blood all over him. So I showed him my bloody knuckle and he looked in the mirror and we laughed and laughed. Oh the joys of dementia! And yes, there are so many of those moments that I want to remember, that make me smile, that bring me joy.

Now on to the beard debacle. Ha! I will keep you posted.

Randy & Koda at Kiwanas Park in Tempe this morning

Friday, December 26, 2014

Merry Christmas

December 25th ~ 
It's Christmas morning. I have been sitting at my desk for the past hour with not a sound to be heard. Not a car, not a dog, not a single sound. I'm sure it's like this most other Christmas mornings, but I was too busy to notice. This Christmas the silence is deafening. This Christmas has forced me to be quiet and meditate on the the birth of Jesus through different eyes. Which is the title of my husband Randy's Christmas CD that he recorded several years ago. God has used those songs and lyrics to minister to me this year as never before. Randy has not sung those songs in two years. He had an annual Christmas concert for 20 years and for many it was the start of their Christmas season. It was always scheduled the first weekend in December and always put everyone is the Christmas spirit. He had his last one two years ago. Well, this year dear friends took us on a road trip up north to Flagstaff and Snow Bowl, and down through Sedona for my birthday. We had not been out of the city in a year and a half. Best birthday gift ever. Randy was a wonderful traveler and we had the best day. We headed back to Phoenix with a grateful heart. But then it was about to get even better. We put on Randy's Christmas CD... and witnessed a Christmas miracle. Randy began to sing along to the CD and we were awestruck. He sounded better than ever... and I seriously cried through every song. I managed to record the blessed event on my cell phone in which I will cherish forever.
Needless to say we have been listening to his CD every morning on the way to his Adult Day Care facility. And more often than not he starts singing along. What a sweet way to begin my work day.

And then last night we spent Christmas Eve with our children at my daughter Miranda & Aaron's home. In the midst of opening presents we heard a knock at the door and opened it to a porch filled with dear friends who had come caroling. I can't even begin to tell you how blessed we were to witness such love. We were all crying when I turned around and heard Randy singing Silent Night with his eyes closed and his hands lifted in worship. I could hardly sing after that. Oh Jesus, thank You for your faithfulness.

Christmas Day was bitter sweet. We were alone till we went and visited his Mom for an hour in the afternoon. Randy literally read non-stop from the time he awoke till we left. He barely acknowledged Christmas. This is a man that loves Christmas more than anyone I have ever known. It's heartbreaking. He finally opened my present to him in the afternoon. A pair of slippers that he put on right away. And then like clockwork, just before bedtime, he starts asking to drive the van to Home Depot, to the Mall, to get a Coke, etc. When I remind him that he can't drive, he will then ask me to drive him. It goes on for a half hour or so, and then he goes to bed. He's never angry or frustrated, just obsessive about wanting to go somewhere.

December 26th ~ 
I woke up this morning and once again asked the Lord for strength and patience and love... for today. I can't think about tomorrow. It will come soon enough. All I have is today. Tomorrow could very well bring more changes to my husband, and more heartache, more loss. Yes, Frontotemporal Dementia has a way of rearing it's ugly head just when you've managed to adjust to the present changes. I am powerless to do a thing, but I do have the power of Christ in me to give me what I need at any given moment. I will choose to cling to that today... and somehow find joy in this journey.

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