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 ~
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.



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


"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