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.