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!