Sunday, August 20, 2017

dementia & transportation

My husband Randy was diagnosed with Frontotemporal dementia 3 1/2 years ago at the age of 60. He  is unaware that anything is wrong with him. He has never asked why he is not working, or driving, or going to church anymore. He has never asked why he gets into a cab each morning to go to an adult day care. He no longer sings or plays his 12 string Guild. And he rarely ever mentions family and friends. But he is sweet and peaceful and easy to love.

Randy started attending the Phoenix day care in March, because the Tempe location was not a lockdown facility and he was needing one. I was very pleased with his new daycare, except for his transportation. Valley Metro provides Regional Paratransit ADA Transport services ~ Transdev and Yellow AAA cab ~ as transportation providers for the elderly, disabled and mentally challenged. (prior to July 1st, it was Dial-a-Ride) And the experience has been a nightmare. The letter I received stated that "all cab drivers would be trained to provide service that is safe and courteous"... which has not always been the case. They have been 2+ hours late picking him up many times... and even though Randy's file states he has dementia and needs door-to-door, hand-to-hand check-in, he has been dropped off at the curb, no where near the entrance to the facility and left to find his way. I'm serious. Thankfully he was eventually found wandering in the heat. (we're talking 4th Ave. & Osborn) Appalling. 

When he is dropped off each day at our home, I hear Koda bark and quickly run to let Randy in the front door, only to find the cab long gone. And you can not even see our front door from the driveway. What if I hadn't gotten home in time for his drop off? Deplorable. 

But what pushed me over the edge was when he went missing for 2 1/2 hours Thursday, July 13th. He was picked up from the day care at 3:15, but when he wasn't home by 4pm, I started calling. By now they know me well as I have pretty much called to vent my concerns weekly (if not daily) since March, with no return call from a supervisor or manager. Ever. Oh, and the minimum wait time on hold is 1/2 hour, so when I finally talked to someone, they said his cab driver went to help a cab driver that was in an accident. Then she put me on hold when I demanded to talk to the dispatcher. She then said I could call the dispatcher, and the dispatcher proceeded to tell me Randy wasn't in the accident, but would be home soon. Then the actual cab driver called me. The only words I could understand was "hospital" and "your address". I asked if Randy was in the hospital and he said no. I gave him our address and he immediately hung up, and would not answer my return calls. I was frantic and my gut knew they were not being truthful. Randy finally arrived home at 6pm. He has no short-term memory, so I kept calling anyone that would give me a straight answer. The next morning, with fear and trepidation, I had to put Randy back in a Yellow AAA cab because I had the AC guy coming. I was overly nice, even though the cab driver was visibly angry when I responded to his demand for a payment, by telling him he had to walk Randy into the daycare, sign him in and he would get his ticket payment. An hour later I got a call from the daycare that Randy was found wandering outside. Again. I was livid. Then an hour later I got a call from a man that needed to talk to Randy about the accident he was in yesterday at 3rd St. & Thomas. (in front of St. Joe's) Sure enough, I called the police and the police report said Randy was in that cab! Still wondering why the police officer did not call me as Randy wears medical alert dog tags with the word dementia and my cell no. He apparently assumed the cab driver was calling me to let me know. Unconscionable.

Thus began the process of getting to the bottom, by talking to someone at the top. After several days of calls and demands and threats, the General Manager of Valley Metro Paratransit called me at 7pm. I shared every detail of Randy's transportation nightmare since March... and she was shocked and totally unaware. She listened, apologized and assured me there would be changes. I told her I was moving Randy to another day care that had their own transportation, but that I would continue to fight for those that didn't have a voice... to make sure the elderly, disabled and mentally challenged would be treated with safety, dignity and respect. I would fight for the elderly that are waiting for hours to be picked up for a Dr appointment, that would now need to be canceled... for the disable that needs to get home in time for their next dose of pain meds... for the mentally challenged whose caregiver is frantically wondering where they are. I am deeply disturbed that in this day and age, a city the size of Phoenix, does not have a better system. Heartbreaking.

So, thus began the process of moving Randy to the Mesa day care. But first the Dr visit, TB test and blood work... not easy for someone with dementia. And while I knew this change would rock his safe, predictable world, I was willing to put him through this for safe, reliable transportation.

Well, on his last day before starting at the Mesa daycare, Randy's transportation to the Phx daycare arrived an hour late, 7:30am rather than 6:30am. I got a call on my 9:30 break that Randy had yet to arrive at his daycare. That was my breaking point. I lost it. I called ADA Transport, then the dispatcher, no one knew where he was, nor his driver. Finally at 10am Randy was dropped off - 2 1/2 hours after he was picked up! The driver said his GPS broke. Seriously?! You drive around for 2 1/2 hours and don't think to call for help?! Shocking.

Needless to say I was all the more grateful Randy was starting at a new daycare. Unfortunately after a very difficult first day, the director told me the facility was not a lockdown. What?!!! Randy's case worker assured me it was. I was devastated... and heartsick for Randy. He continued for two more days but would not stop obsessing about getting out.

So Friday, Aug.11th, he was back at the Phoenix day care and doing so much better. I am still at the mercy of the Valley Metro Paratransit system... but his first week back went very well. No complaints. No mishaps. Thankful.

While this has been a crazy 6 month journey... my faith and dependency on God has grown. He has protected Randy countless times. He has calmed my heart, given me strength, shown me grace and mercy amidst uncertainty and disappointments. He is exposing my control issues, my fears, my pride and unbelief. And continues to love me with an everlasting love.

I could not walk this unexpected journey without the Lord in my life. 



Randy giving his daughter Miranda a rare hug... priceless.


Monday, April 24, 2017

a rod through the block

It was July of 1980. We had driven from Phoenix to Wisconsin for my brother Ronnie and Debbie's wedding. We had married the summer before in Phoenix. So excited to attend a family wedding so close to our 1st wedding anniversary.


 I recently found this old photo. Randy had changed out of his tux and we were off to start our new adventure as husband and wife in his '69 Dodge Charger


 So fun being on the farm. We even helped my Dad bale hay. Yes, that's me driving the tractor.


That's Randy helping my Dad.


That's my brother Kevin (11) driving the tractor. 

Well, after a wonderful week on the farm, we decided to start out for my sister's in Oklahoma in the evening after a family dinner at a local supper club. But I quickly realized I had forgot the stump.

Did she just say stump?

Yes. A tree stump. That my Dad had cut and left to burn. That I rescued for a possible end table. That I just had to have. Don't laugh, they're all the rage again.

So we went back to the farm to load it in my husband's '69 Dodge Charger. Side story... when I found the stump I made Randy carry it to the house. It's heavy. When it started to rain I made him bring it in the house so it wouldn't get wet. Like it hadn't gotten wet all those months outside! I know, I'm a lot of work.

So we hit the road and somewhere along I-35 in Iowa around 3am, I awoke to a horrible sound. My heart sank. Randy got us to the next rest stop, crawled under the Charger and declared "I threw a rod through the block". Well... is that bad? The look on his face spoke volumes. So without thinking "Then why did you do that?" I know, I need to think before I speak.

So he worked on the car in the dark for a while and then said he needed a bolt, and that should get us back on the road. Btw, he had totally rebuilt this car. And he always traveled with his tools. And if we didn't have such a good marriage I would have been jealous of the hours they spent together.

So we hitched a ride on a semi truck to the next exit/ truck stop. I had never been in a rig before, so I may have been a bit giddy, chatty... at 3am... poor truck driver. At the truck stop they let Randy dig through a bucket of bolts, where he found three in the hopes one would do the trick. We then walked to the other side of the exit and hitched a ride back to the rest stop. I was less giddy and chatty this time around. Reality was setting in. What if none of the bolts fit? So I began to pray for a miracle.

I quickly jumped down off the semi truck and began running across several lanes of freeway, and then through the tall grassy median, all the while looking back and no Randy. When I finally got to the rest stop I could see he was coming. He said that when he jumped down from the rig, the door wouldn't shut... he kept trying till he discovered a bolt had jammed the door. The truck driver said to take it, cuz hey, it just might be the bolt.

And you know what? IT WAS!

Randy tried the three bolts first... but it was the bolt stuck in the door that finally worked!

We had prayed for a miracle and God answered... and we were on our way! Praise the Lord!

And get this, when Randy sold the Charger a couple years later, that miracle bolt was still doing the trick!

Monday, April 10, 2017

the missing Handi-Wipe dish rag

My name is Linda Thompson and I am ADD/ OCD.

Knowing that, it should come as no surprise to you that when my pink dish rag went missing 32 years ago, I went a little crazy.

Let me set the stage for you.

This was no ordinary dish rag, this was the pink stripped Handi-Wipe reusable cloth dish rag. When I met my future Mother-in-law in 1978, she introduced me to Handi-Wipes. She only used Handi-Wipes as her dish rag. They were thin and durable and easy to clean inside glasses. I was hooked and have been using them every single day for the past 39 years. Check out this old commercial from the 70's.


Well, in our home, theses bad boys, I mean girls, functioned even more so than the 1001 uses in the commercial... the least of which were the assumed dish-washing function. You see, our 2 year old daughter Miranda had a vivid imagination and she alone took the Handi-Wipes phenomenon to another level. Long hair when she was pretending to be Sleeping Beauty... a cape when she was Snow White... a scarf while gathering berries in the backyard as Princess Aurora (all the while singing "I know you I walked with you once upon a dream"). Yes, several times a day she would have me wet the wipes down so she could conform it to her imagination.

Just so you know, the Hands-Wipes back in the 70's & 80's were much larger than the current Handi-Wipes. Seriously, no comparison. And don't get me started on the quality. The old ones were 100% rayon and totally reusable. I could launder an 80's Handi-Wipe several times before it started to fall apart. These days when you put the Clorox brand wipes through the wash they become a weird, puffy mess of uselessness.

Ok, back to the story. It was 1986. My husband Randy was the youth pastor at our church. The day before the dishrag went missing, his youth group held a car wash to raise money for summer camp. He came home with $300.00 in one dollar bills inside a blue Valley National Bank bag.

I noticed the dish rag was missing immediately upon entering my kitchen the next morning. I always have it draped over the sink. But this particular morning, no dish rag. I looked everywhere. I asked my husband, our 5 year old son Shawn and 2 year old daughter Miranda. No one had seen it. That's when the OCD kicked in and I become a tad bit obsessed with solving the mystery of the missing Handi-Wipe.

Well, I eventually went out to the back patio... and there was a chair... under our kitchen window... with the Handi-Wipe on the chair.

That's when it hit me... someone had used the Handi-Wipe to wipe down their prints while climbing out our window.

Which meant... they had climbed through that window... and ENTERED OUT HOME!

WHILE WE WERE SLEEPING DOWN THE HALL!

OH. MY. GOSH!!!

Sure enough, the Valley National Bank bag was gone. Randy had left it on the kitchen table.

I quickly surmised a horrifying scenario and thanked God he had left it on the kitchen table!

You see, I am a light sleeper. And because the bank bag was on the table, they took the money and ran. Had Randy not left the money on the table, they would have most likely wandered further on  through the house, waking me up, and God only knows what would have happened. Thank you Jesus!

Which is why you should leave a $100 bill on the table when you go on vacation, because they will more than likely take the money and leave, thus protecting your home from being ransacked while looking for money and valuables.

Well, I was recently reminded of the dish rag story, when I came upon a fabulous vintage find while thrifting with my friend Kathy.


I seriously gasped! Ok, I screamed... in my head. I had never even seen these dispenser packs back in the day, but these are the actual vintage Colgate-Palmolive Handi-wipes!
In fact, these vintage boxes are selling right now for $35.00 a box HERE!
I found these at Goodwill for $1.99 a box.




This is the packaging I purchased back in the day. Notice the 14"x24" size. The new ones are 11"x19". Yes, the new ones made by Clorox are packaged very similar, but that's where the similarities end. So sad.
You may be wondering if I have plans to use those vintage Handi-Wipes. Maybe the yellow ones. I do have plans to gift the pink ones to my daughter Miranda when she has a daughter some day... and now I'm all weepy just imagining my granddaughter with a pink stripped Handi-Wipe draped over her head.

Thursday, April 06, 2017

behavioral variant FTD

We're coming up on the 3rd anniversary of my husband Randy's dementia diagnose.
Frontotemporal degeneration to be exact.
Of course looking back we can see changes as far back as 2011. So technically he is going on 6 years, and considered moderate by his neurologist at the Banner Alzheimers Institute. He goes in for a yearly test to evaluate the progression... and that's it. He takes 40 mg of Citalopram in the morning and 100 mg of Seroquel at night... and that's it.

Randy has behavioral variant FTD. Those diagnosed with progressive nonfluent aphasia FTD have trouble speaking and producing language. Randy has no trouble recalling words and is still quite articulate. Very thankful for that.

Behavioral variant FTD

Mild bvFTD

In the first several years, a person with bvFTD (sometimes called Pick's disease or just FTD) tends to exhibit marked behavioral changes such as disinhibition, apathy, loss of sympathy or empathy for others, or overeating. Problems with planning organization and sometimes memory are evident, but the individual is still capable of managing household tasks and self-care with minimal help. However, impairment in judgment can lead to financial indiscretions with potentially catastrophic consequences. Social withdrawal, apathy and less interest in family, friends and hobbies may be evident. At times, they may behave inappropriately with strangers, lose their social manners, act impulsively and even break laws.  

Moderate bvFTD

Over the course of a few years, the symptoms seen in the mild stage will become more pronounced and disabling. You might also notice compulsive behaviors like repetitive urination, hoarding or collecting objects, compulsive cleaning or silly repetitive movements. Binge eating may create weight problems and other health issues. The cognitive problems associated with dementia become more pronounced, with mental rigidity, forgetfulness and severe deficits in planning and attention. The MRI image at this point will show that the shrinking of the brain tissue has expanded to larger areas of the frontal lobes, as well as the tips of the temporal lobes and basal ganglia, deeper brain structures involved in motor coordination, cognition, emotions and learning.

Randy's current repetitive, obsessive behaviors ~
  • he turns every light on in the house. Constantly. Like every single light and every ceiling fan.
  • he's constantly asking for waffles. I make homemade waffles every Sunday, and then make them up each day till the batter is gone. He loves them so much.
  • he rarely asks me to take him to QT for a Coke, but visitors are asked to take him. 
  • it's a compulsion... anxiety... when things are out of the norm.
  • and when he wants them to leave, he sweetly tells them he is going to walk them to their car.
  • oh that we could all be so blunt. ha!
  • he turns the shower on, walks away and it's left running till I discover it. My water bill...
  • he loves taking showers. So thankful for that.
  • he's so happy laying on his bed and listening to his music.
One of my very favorite photos.
Me, my man and the mighty Mississippi. (2005)

Tuesday, March 28, 2017

Selling our Cozy Cottage on Wheels


This story has been unfolding for over 3 years. So excited to finally share it with you.
It began with an email 2 weeks before my husband Randy was diagnosed with frontotemporal dementia. (April, 2014)

Hi!
My name is Samantha and I love your Travette, your pictures, and the fantastic way you have portrayed the experience.
I know a bit about Travette: My family owned and operated the business in Bakersfield, CA, until it closed in the 70s.  I have the greatest Travette memories and I’m so happy to read that others are making their own happy memories.
I hope this email gets to you and if you get a chance, it would be wonderful to hear back from you!
Happy Travels,
Sam
btw, if you ever decide to sell her, please know that you have a buyer.  :-)

Well, I knew something was wrong with my husband, so I replied that I would definitely let her know if and when we would sell her... and then tucked it away in a file.

Sure enough, two weeks later Randy was diagnosed with behavioral variant frontotemporal dementia. Unreal. Life changing. Overwhelming grief. It was a year later before I even remembered Sam's email. But I wasn't ready to sell Cozy until the fall of 2016. When I finally emailed her, it came back undelivered. So I googled her name and her Pinterest board came up. I found Cozy on her vintage travel trailer board and left my email in a message. She immediately replied.

Thus began a series of emails and phone calls that told a story that to this day makes me cry. And well, you know how much I love a good story. Well God, in His goodness, went above and beyond and gave me a great story.

You see, the Travette travel trailer company began in 1957. Sam's great-grandfather, grandfather and Dad owned and operated the business till it ended in the late 70's. The last recreational vehicles the company manufactured were the 13 foot travel trailers. Because they didn't manufacture a lot of them, Sam told me her Dad literally had a hand in every single one. So it was a dream of Sam and her brother Darrel, to buy one for their Dad as a surprise. So you can imagine how thrilled they were when they finally found our 1976 Travette travel trailer 13 footer in their google search.

Sam gave me this old Travette brochure. So cool!
Sam lives and works in the Washington DC area, so her and her fiancé Jim Hanson (from Fox & Friends) flew in to Phoenix and rented a U Haul to transport Cozy to her parents home in Austin, Texas. Sam & I already had a bond, a kinship like no other, so when we finally saw each other we hugged and cried. We sat inside Cozy together and I heard more of the story. Her Dad's health is failing, so the timing of their surprise was even more heartwarming.


Randy & I had spent many hours dreaming of our adventures with Cozy over the years. We wanted to visit the National Parks. Sadly our Bucket List was emptied pretty quickly. Along with quickly realizing I couldn't bear to watch someone we knew live out their dreams through our Cozy. God knew that too. He knew the only way I could ever sell our cozy cottage on wheels was for her to be returned to the one that built her. Simple, easy and painless... and totally meant to be. Only God in His love and mercy could orchestrate such a story.

Well, Sam & Jim spent 5 hours in our driveway getting Cozy ready for the trip. Two of the nicest people I have ever met. Get this, Sam was a paratrooper in the Army, retired Lieutenant Colonel and now runs a non-profit called America Matters Now. And yes, Jim is on Fox Cable News... but he is also from Wisconsin, grew up in Green Bay, a farm boy at heart and a huge Green Bay Packer fan! We were like family by the time they pulled out of our driveway.

Interestingly, Randy's cab dropped him off from his day care during that time, and he was totally oblivious to Sam & Jim... and that Cozy was hitched up to this huge U Haul in our driveway. I was glad he was ok with Cozy leaving... and sad that he was ok with Cozy leaving.

Thrilled when Sam sent me this photo of her and her parents shortly after they surprised her Dad. She said they were already calling her Cozy. :)


I am so thankful I documented every adventure here on my blog. Thankful we found her on Craig's List October, 2009. She gave us a great run! Memories I will cherish in my heart forever. You can read all about her HERE and HERE. 


Happy travels Cozy!


Friday, March 24, 2017

Tommy Hilfiger designer coveralls


Oh the things you find at thrift stores... 
Many years ago I found a brand new pair of coveralls at my favorite little thrift store for $7.00. Umm... we're talking Tommy Hilfiger designer coveralls to be specific. Don't bother googling these... they don't exist. Maybe they only made one pair. 
Anyways, I knew my husband would go wild. Ok, he doesn't ever go wild, but he would be thrilled. When we met in 1978, coveralls were a common attire most weekends, as he was always working on his beloved '69 Dodge Charger. But he wore his Dad's. So after we married he went many years without coveralls. 


Well, we sure got our monies worth. And come on, is he handsome or what. When I took these photos in April, 2011, he could only find my pink headband that morning to absorb the sweat. ha!
And ironically, it would be one of the last times he ever worked on our vehicles, if not the last time. His frontotemporal dementia was diagnosed 3 years later, April of 2014... but he started changing around this time.



So, in preparation for our house painting, I spent Christmas Day going through 23 years of junk in our side yard, for the next days power washing. 
These were hanging with the yard tools. 
Bitter sweet... lots of tears... remembering.


But so thankful I found them... you see, I've been collecting jeans for over 40 years... to make quilts. I have jeans that my kids wore, Randy wore, my Dad wore, I wore. Thrilled I could salvage the best parts of this well-worn treasure. 
And so fun showing Randy and reminding him of his love of working on cars. 


Monday, March 20, 2017

slowly but surely


  • my husband's frontotemporal dementia is progressing slowly but surely.
  • his short-term memory loss is much more evident.
  • thankful he is still peaceful, happy and content.
  • he has still never been sad, angry, irritated or argumentative.
  • we keep to a very simple, predictable routine.
  • Randy's heart is so full of truth and love, that no matter what is happening to his brain, Christ in Randy is still very much real and present.
  • my husband had to start attending a more secure day care in Phoenix.
  • he kept trying to leave when he saw others being picked up.
  • which means he now has to use dial-a-ride to and from each day.
  • otherwise my commute would mean leaving Gilbert after work, picking him up in Phoenix, then back to Tempe... a crazy 2 hours drive.
  • needless to say, I am sad for the loss of our treasured time each day in the van after work.
  • and frustrated that his target pick up time is rarely ever on time.
  • not happy with dial-a-ride.
  • but thankful the transition to the new day care was seamless.
  • very happy with the new day care and the dedicated staff.
  • thankful my neighbor gets Randy in the cab after I leave for work each morning.
  • really, really like my job, my co-workers and altering mens suits.
  • survived 9 hour days, 5 days a week, January and February.
  • a result of Dillard's huge clearance sale on men's suits.
  • nice to be back to 4 - 8 hour days.
  • a dear, precious friend painted our house the week after Christmas. Overwhelmed by such a generous gift. 
  • God continues to bless above and beyond. Continually in awe of His goodness.
  • five dear men came and cared for my husband while I was in WI for my Mom's funeral.
  • forever and ever grateful for their servants heart.
  • just when I thought the aching in my heart for a road trip would never go away, my friend Nancy arrives from Virginia and we hit the open road. My heart was renewed, restored, revived.
  • Randy & I were on a walk yesterday and his crown fell out. Trying not to worry about what that means. He will have to be put under for any work to be done. Ugh.
  • have I mentioned lately that I hate this disease?
  • I will leave you with a photo from Thanksgiving 2016 ~ Pop pop, Mimi & grandson Will.
  • and my new favorite verse ~ Psalm 28:7
The LORD is my strength and my shield; 
my heart trusts in Him, and He helps me. 


Wednesday, March 15, 2017

My Mom ~ Leona Larson


  • She was born Leona Ida to Henry & Ida Steinke on April 14, 1930
  • She passed from this earth Feb. 26th, 2017
  • She had 3 sisters Helen, Dorothy and Marion
  • and two brothers Elmer and Ervin
  • She loved school and was valedictorian in her class of '49
  • A city girl meets farm boy at the roller skating rink in Hatfield, WI
  • and they marry on April 29th, 1950
  • She's the Mother of six kids ~ Kathy, Ginny, Gary, Linda, Ronnie and Kevin
  • She named me after her ~ Linda Leona
  • and blessed with 15 grandkids and 19 great-grandkids
  • She had strong Christian values
  • and always took us to church and Sunday school
  • She knew the value of life-long friends
  • She was a supportive, hardworking farmer's wife
  • And punctual. She was never late
  • She was recycling when recycling wasn't even cool yet
  • Picking up cans and bottles on her daily walks
  • She made desserts for every meal.
  • She had the best laugh
  • She modeled "Love Thy Neighbor" by weekly visits with Mrs. Leer, Mrs. Vesta and Mrs. Moe
  • She saw the importance of visiting relatives every Sunday
  • She loved picking berries of all kinds
  • She was a homemaker, in the truest sense of the word.
  • She kept a beautiful home and held to a rigid weekly schedule
  • She taught us girls that hours of ironing while watching soap operas is much more enjoyable
  • She was an amazing cook and loved baking
  • She was always home when we got off the bus, with fresh baked bread, homemade donuts, a pan of bars, cookies or pies cooling on the counter
  • She loved dancing with her kids to Ernie Reck on the television 
  • She never missed a Billy Graham Crusade on the television
  • She faithfully attended all our school activities and sporting events
  • She was dependable, thoughtful and full of energy
  • She loved card parties, snowmobile parties 
  • and spending time with their Alma Center friends
  • She loved to travel and visit her children
  • She had a beautiful voice and loved to sing
  • She took great pleasure in planting huge gardens
  • and saw the value of 4-H through her kids

Mom had a good life and she was ready to go to heaven and be with Jesus... and to be reunited with her husband John, her son Ronnie and grandson Noel.
Mom will be forever remembered, loved and celebrated as her legacy lives on through her kids, grandkids and great-grandkids.
We love and miss you Mom!

Thursday, November 24, 2016

Giving thanks

Random thankful thoughts ~
  • sewing/ alterations ~ my miracle job
  • finally cooler weather 
  • my $200 ankle boots for $5.00!
  • gotta love Dillard's employee discount day
  • finally found a cassette player that works
  • vintage, retro awesomeness for only $5.00

  • I am now listening to 100+ cassettes
  • loved the one of my daughter as a baby making the sweetest sounds
  • with her Daddy singing Jesus Loves Me to her
  • listened to that one yesterday, on her 32nd birthday
  • I was a mess
  • she is the best Mommy to my dear, precious grandson Will
  • he's so stinkin' adorable!
Will James Randy
  • my husband's miraculous return after taking the van to QT for a Coke
  • he had not driven in 3 years... he had found my hidden keys 
  • I hate frontotemporal dementia 
  • but he's just the sweetest and always happy
  • spent an entire day blowing, mowing, sweeping, trimming and racking our backyard
  • just the best feeling!
  • God's provision... always meeting our every need
  • weekend women that call or come over to hear my heart, to process and pray with me
  • my new church and my Sat. morning teaching/ equipping class
  • forever and ever grateful
  • my son just text me a photo of his kids! My grandkids... my heart.
Emolyn ~ Elsie ~ Jonah ~ Nathan
  • my neighbor who gets my husband in a cab each morning
  • so I can work 8 hour days
  • my dependency on God rather than others
  • but letting God love me through others
  • trusting God and others
  • so hard but so important on this faith journey
  • my husband asking if he can give me a foot rub
  • just the sweetest blessing ever... of course I cried.
  • I have not taken that toe ring off in 16 years 
  • pumpkin bagels & apple butter (w/ cream cheese) from Big Lots
  • love Big Lots and the 99 Cent Store
  • whenever I tell Randy I love him, he always says I will love you forever & ever
  • needless to say, I say I love you a lot
  • Randy's Christmas CD ~  Through Different Eyes 
  • omg, my very favorite Christmas CD... that I happen to play year round 
  • here's the link ~ Through Different Eyes
  • email me if you want to order one ~ lindathompson825@gmail.com
Happy Thanksgiving! 
It really is so good to give thanks to the Lord. 
I am truly...

Thursday, November 03, 2016

dementia & losing balance

My husband's brain is dying. And while it can seem like a long, slow death, certain stages of the disease can rear it's ugly head out of nowhere. Yesterday was one of those days.

Randy suddenly lost balance, overcorrected while lunging forward down the driveway. He landed facedown on the concrete with his right side taking the hit. Cut above his eye, mangled glasses, bruised shoulder, elbow, knees, lip and cut hands.

We spent 4 hours in the ER and if you know anything about Frontotemporal dementia, you know it was quite challenging while waiting for him to be sedated for stitches. Imagine all the things we did to distract our little ones in these situations... well, they came in quite handy yesterday. At one point as he was trying to get out of the room I started dancing with him. While I sang one of his songs we danced, he twirled me, we laughed. And it worked. For a short while. Then I told him a story about a little boy growing up with a love for music, songwriting and playing guitar... doing concerts, opening for BJ Thomas, leading many to Christ... and he was mesmerized. For a short while. Then I was on to something else. I may not be the best caregiver, but this I do well.

Finally they gave him something to relax him while waiting for the DR to sedate him for the stitches. (Propofol works well for him) It was then that I remembered the nurses telling me (when he was put under to have all his toenails removed) to be sure and take advantage of the sedation and do the things he won't let you do awake. I quickly went into action and with the help of the nurses, I had a scissor and shaver (along with a nail clipper and comb I had in my bag). I was good to go.

I trimmed his finger nails that were super long... trimmed his mustache and beard... cut the front of his hair... shaved his neck... I even trimmed his eyebrows that had severals 1" strands that were driving me crazy. (ok, even a few nose hairs) Then I finally got a close up of his toe nails and saw that half were starting to grow back. I was heartsick. But all in all, a sweet silver lining to a rather traumatic event. Thank you Lord.

Seriously, he is the sweetest man you'll ever meet and quite a handsome one I might add. In fact, when I told him he looked so young and handsome, he said "I know! I look gorgeous!" Yes, while I have more of a Mama's heart towards him now... I couldn't love him any more than I did as his wife. Love this dear man with all my heart.


Before


After

Sunday, October 30, 2016

death & dementia

My brother Ronnie passed away Sept. 20th. He was 57 years old and battling cancer for the past 2 1/2 years. He was diagnosed with multiple myeloma the same month my husband Randy was diagnosed with frontotemporal dementia. Neither had a cure.

No matter how prepared you think you are, you never are. My heart is so sad, especially for those left behind... his devoted wife, his amazing kids and adorable grandkids. And his siblings ~ Kathy, Ginny, Gary, me and Kevin. We were honored to be asked to stand in the receiving line at the visitation. Hundreds poured through the doors giving us hugs and heartfelt condolences for over 3 1/2 hours.

We awoke the next morning to a cloudy, cold, drizzly day. Ronnie's Harley friends paid homage by gathering at the farm and riding their cycles in a procession to the funeral. What a site that must have been. The service was so honoring and heartfelt. Broke my heart sitting next to my Mom while she wept for her son. Parents are not suppose to outlive their children.

My brother was a successful farmer and continued to farm and work the land and ride his Harley to the very end. He fought a hard fight and knew the love and support from his many friends and family that showed up on his last days. Oh how he will be missed at Valley Ridge Farm and by the many who loved him dearly. I took this photo June, 2015. I will always remember him in his element, loving his family, friends and best friend Boji.




A former neighboring farmer said it best ~ 

"Ron was a tiller of the soil. 
His stewardship of it was a demonstration of his love of it's Creator".

My brother's childhood best friend wrote a beautiful article. 
Click HERE to read the story.

My husband was unable to enter into my grief and sadness. No empathy. In fact, every time I would tell him my brother died, it was as though he was hearing it for the first time. He would say "Really?!", and then change the subject or walk away. He loved and respected my brother so much. Heartbreaking to see him so removed from the reality of Ronnie's passing. I did ask him the other day about what my brother must be doing in heaven right now. And he replied "I know I would be visiting with Jesus". That made me so happy.

And I missed my kids and grandkids more than ever in the weeks following his death. Unbearable at times. We had unresolved issues and hurts before Randy's diagnose, and we all know, a crisis of any sort will either draw a fragile family together or tear it apart. Sadly our family has suffered the later. Which in many ways has been far worse than my husband's diagnose. I'm finding it so hard to trust God in this area of my life... to believe for healing and reconciliation. So I recently memorized this verse when I find myself circling the toilet.


The Lord is my Strength and my Shield. My heart trusts in Him and He helps me.
Psalm 28:7

My husband's best friend John Lynch wrote a book ~ "On My Worst Day". Today I will choose to believe by faith that this is Jesus... who He is... and how He sees me.

"I watch how hard you try to continue to draw near to me, even as I allow things into your life which utterly exasperate you. You're clinging to the belief that I am fully for you, and care more about you than you do. Then something happens which seems to undermine it all...I know. I watch. It deeply hurts me to watch you experience such disappointment and a broken heart. You might try to let me off the hook by reasoning I'm not fully in control of your world. Such thinking might maintain a measure of your affection for me--like giving a pass for a grandfather who loves you but can't always remember your name. But this lie will ultimately ruin our relationship. I am fully in control of your world. There is nothing that happens, doesn't happen, refused, or delayed without me seeing it, or allowing it. I am in control of your life. And I love you more than you love you. My character cannot and will not do wrong. I take whatever your race has brought on, and I redeem, refashion, and rework it all into beauty beyond anything you could have possibly imagined. All things. Horrible things. Evil things. Chronic things. I decide what is allowed through and what it will accomplish. I decide what needs to be refashioned. But mostly I stand in the arena, when you cannot stand, defending you and protecting you. I do not lecture; I do not mock. What I do is love you. No matter how angry you are at me, no matter what you imagine in your heart about me. I enter into your pain more deeply than even you. This I can do. This I will always do. Until we are home together in the land where tears cease."

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

HE'S HERE!

"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!