The Tradeoff

There was a time that I could sleep until 2pm in the afternoon. No breaks, no getting up to let the dog out, no Mother Nature reprieves- just sleep. I would stay up until 1am or 2am and crash. Twelve, thirteen hours of siesta and just because I enjoyed myself so much, sometimes I would take a nap later. In my college apartment, my roommates and I fitted the windows with aluminum foil and blacked out our room. A bomb shelter where nothing got in or out. Not that sunlight was issue for me, we tricked our brains into thinking it was always time to sleep. That’s what you do when you stay up all night playing ping pong and need to nap for a few hours during a class break.

Nights have gotten hard lately. Sleep is a commodity. Huntington’s affects movement, cognition, and mood. For over four years I never saw much of an effect on Tiffanni’s mood. She was happy, content, even carefree- especially to carry so much. But lately, her anxiety is getting the better of her. Household items are out of place. She needs Tylenol. Her hair needs to be brushed again. She’s hungry. She’s tired. She can’t sleep. She won’t sit down. The kids are too loud. The kids are in the house. We have kids. And for a while now, her seemingly incessant worry has creeped into our house sanity. It can be especially tough when I’m not home sometimes. Who knew that I could have a calming effect?

So I called her Doctor and told him that something had to give. She had to sleep. I had to sleep. So he prescribed Ambien. Tiff used to sleepwalk and talk in her sleep. One time I caught her digging through a potato bag at the bottom of the pantry. “What are you doing?” I asked, arrested from a REM cycle after hearing the cabinets banging in the kitchen.

“I’m looking for my pants,” she said. The look that followed inferred, what else do you think that I would be doing?

Another time she woke me up in a panic with an AK-47 cadence of nudges to my kidney. “Someone is in our shower!” When I came to my bearings, I thought to myself that that was impossible.

“No one is in the shower Tiff, you’re asleep.” But it’s hard to reason with someone and convince them that they are asleep when they’re carrying on a conversation with you.

“I thought you were the man,” she responded. Not the man, I had never claimed that (except when bragging about my unbeaten Monopoly streak.) The man. So I got up to check the shower. I slung back the shower curtain, fist cocked, just in case the .1% chance that someone was in there, I was prepared for.

“See,” I said, “There’s no one in there just like I told you.” I glared at her, only to hear her snoring again.

But Ambien was another thing altogether. Not only did she not sleep, she got up and did chores. I caught her sprawled out like Cinderella cleaning out the bathroom vanity one night. Brushing her hair for over an hour another. And the whole time talking to me. If I wouldn’t respond, she would nudge me over and over again. I retreated to the couch several times, but she would go wake the kids. So I called the Doctor again. This time he prescribed something different.

And she slept.

But, there was a tradeoff. Her response time slowed. Her ability to reason and converse changed. Her balance regressed to early childhood. Her fine motor skills lessened.

But she slept.

They don’t give you a playbook on the household health quotient. My sanity and her incoherence vs. my insanity and her sense of reality, her anxiety. If I just knew the right thing to do, I would do it. If someone said, “On Monday, just grin and bear it and let her breathe. But on Tuesday, medicate her so you can catch up on sleep.” That would be simple. But there’s no way to calculate the cost of stress in a home. Not on her, not on us. There’s no textbook that offers an equation to solve for health. So, we wing it. I fly blind. I guess and pray that it’s the right thing.

I’ve been married to the same woman for almost eighteen years, but she’s not the same woman. I don’t think that I expected that she would be. But who knows what you expect when you’re a the-world-is-my-oyster kid. And it’s not like the vows promised that nothing would change- quite the opposite actually. There’s a sense of contentment with the trajectory and growth for one of us. A sense of loss and sadness for the decline of the other. And it frustrates me that they might be inextricably connected. Some tradeoffs are good. Some, not so much. I just wish that I could discern the difference.

23 Comments for “The Tradeoff”

says:

God Bless you both and your precious children. I too wish I had answers for you, but only the Good Lord, has those. Thru marriages we change, but with any neurological disease, the changes are far more than we can reason or understand.
You do very well maintaining your home, children, and position as Pastor, but you have limits. All caregivers need a break at times, if possible , take one for yourself.
Caregiver burn out is real, it can get debilitating. You cannot be a good caregiver if you are worn out yourself.
As always prayers continuing for you and your family
Blessings for the children as they start another school year

Sharon Willeford

says:

Love you Jeremy, Tiff, Addyson, Caryson, & Brayden! You are all doing a great job dealing with the situation through God’s help I day at a time! Prayers! You go with your gut!

Liliana

says:

When my husband passed I took care of both his parents with advanced Alzheimer’s. It was rough. One day at a time and through it all, saying to myself, I’m doing it all unto Him, was a real help to me.
Praise God, He’s always there. And so, I had to purposely remember to pray and ask for His help at ALL TIMES.
God keep you. You are all blessed to have each other.

Leslie Bowen

says:

Jeremy, I admire your tenacity, determination and faithfulness as a husband and father. Praying for you to have strength and wisdom to make the difficult decisions and to hear Gods’ voice clearly to discern what decisions to make on a daily basis. Even though there isn’t a play book, you seem to be doing an amazing job!

says:

Romans 15:13 is what came to my mind to pray for you. “May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.” Love & continued prayers.

cindy Herschberg

says:

Thank you for sharing the journey that all of you are on right now , My heart goes out to you and Tiffany . I understand some of this I have daily things I deal with concerning my health as well I only say that to say I understand a lot ( Not everything ) of what it feels like to lose Your normal ( what used to be ) I can empathize but as I read your latest blog and when you talk about the changes of sleep patterns and anxiety levels I felt like the Lord spoke to me , I go through these things too every night just about ( my husband is so patient and attentive like you are with Tiffany.) So I feel like the Lord would have me to pray for Tiffany when I am awake and dealing with symptoms that i dont even like telling people about. I share some but not everything not ready for that yet. I pray for you both a lot and your family ( the Lord lays y’all on my heart a lot ) But This seems to be different I feel led to pray for her when I am struggling too. So Just know I will be seeking the Lord for peaceful sleep for you both and relief from the anxiety as well as I am still standing in agreement with you for her complete healing ! God Bless !!

Jackie Smith

says:

Jeremy, I read your blog each week, always buckling my seatbelt one notch tighter before embarking on the journey. As usual, I have no words outside of “God is faithful.” Not that I need to tell you that, however —

says:

There’s no textbook that offers an equation to solve for health.

So, so true.

This sounds incredibly frustrating. But at the end of the day, your family needs you to function. YOU are finite and in high demand. The better you are, the better everyone else is.

Sleep, friend, without guilt. They need you to be rested.

Pat Dynkin

says:

Once again Jeremy you, Tiffany and the children are being prayed for by many! I know God is in you, with you and around you! You keep up the good fight and know we are all praying continueously that God give you peace, rest and understanding in your heart and mind, your children that they rest in him him and Tiffany that she have a great calming and peace In her heart, mind and soul! Praying for all!!

Judy Smith

says:

Jeremy, it’s been a long time since I saw that teenager who was a senior in high school. You’ve really come a long way since then, and you’ve done amazing things for God and raised a beautiful family. There are many bumps in your road, and they are all within your overcoming as you follow our Lord. I pray for you and your family regularly. We’re about to hear the last of four sermons at my church this Sunday. They are all on the “why(s)” we have with what seem to be questions with no answer, at least no answer until we are no longer here to deal with them. I haven’t been given some answer from God that tells me why you, but I’m sure that the answer for you is no more discernable than God’s answer for Paul when he had prayed three times. If it is the same, you are about to become the world’s strongest man because I know that you are working through it; and, as God told Paul, “My (God’s) strength manifests itself in our weakness.” Thank you for being God’s man for your family and for being such a tremendous witness to us who are following along on your journey as we read your writings.

says:

Donna Wallace told me you were writing. So I dropped by your blog today. Thanks for sharing your heart. Those of us–men–with wives who aren’t well have few places to go let alone find someone who sorta’ understands. I’ve got your back today in prayer… I know… it sounds contrite… but it’s what I’ve got and I send it your way.

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