Saturday, October 31, 2015

frontotemporal dementia paradigm shift

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

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

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

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

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

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

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

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


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


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


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


And it's changing me. 


Photo taken Oct. 2011 ~ Door County ~ Washington Island

5 comments:

Kathy said...

Dear Linda - I think of you often and pray for you. I hope you feel the heartfelt hug I'm sending you from Michigan. I loved your post today and hope you continue to find your strength through our loving and forgiving God. Many blessings to you.

Anita Diaz said...

Linda, you are so strong, so encouraging and inspiring. Praying for both of you and praying for strength and God to shelter you under His wings:-)

Terri said...

Linda, with very few changes, this is our story. On a camping trip that we had done yearly for over 30 years, Al said "I don't like it here." This was his favorite spot in the world. I was so angry with him. He was diagnosed the following year. A friend gave me a plaque with Joshus 1:9 and I look at it every day. Thank you.

Little Green Bees said...

Whew. Linda, I've been checking in on you through your blog. We used to be blogging friends years ago (I'm in Pensacola, FL) I was stunned to read about the dementia and so sad. Anyway, just wanted you to know I'm thinking about you guys and praying for you.

Tom said...

Hi Linda, my wife is well into FTD as well. She is 65 and into end stage. My prayers are with you and your life imitates mine. God Bless