What’s What

When the kids were young, the head cold, sometimes the chest cold, and occasionally the stomach flu took turns infecting our home. One child felt ill, then the next, and then the next. Like dominos, we fell infected one right after the other, me included. By the time the kids were in grade school, my immunity was stout. I was unaware that a line item in the job description of motherhood reads: Foster immunity by sharing germs.

Doug rarely caught the menu of colds floating around, or, if he did, he never let on. In our entire married life, he showed sick maybe once. His early fatherhood job description included using a can opener, heating chicken noodle soup, and being supportive even when everyone else was cranky. We lucked out with Doug as a dad and husband. He knew how to open a soup can (even without a can opener) and was wholly empathetic.

Control has always been my thing. If you follow the personality profile tests, I am an I first with D as a very close second, an ENTJ, a Choleric, a Lion, and an 8. So, to summarize, for those of you wondering what I am talking about, I seek control with a goal with an occasional drop of fun stirred in (emphasis on occasional). 

Sickness, big or small, never made it on my planning profile or goal sheets. Ailments visited as an inconvenience threatening my stride. With three kids in tow (often one with a cold), I frequently set out to conquer my to-do list. The checkmark, indicating finished, drove me. In retrospect, and with a deep sigh, it escapes me why the IT (whatever that was at the time) was high-ranking enough to make it on a list, deserve a checkmark, and justify trading a cozy mattress and pillow at home for a car seat makeshift bed for a little one with a cold.

I’ve lightened up some, which relieves my family, mostly Doug. I guess that’s part of maturing in my temperament, wising up with each new gray hair, and realizing that equanimity is a more worthy pursuit than obsessive conquest.

Doug recently had right-side total hip replacement surgery. The surgery went well, and the fear I nursed regarding potential cognitive decline never happened. His cognition following surgery was the same as when he went in. I am so grateful!

Dementia, however, is relentless, and Doug’s progression continues. I help him dress, shower, brush his teeth, shave, express himself, eat balanced meals, and get to the bathroom in time. He needs constant care. Sadly, this is part of the steady, unyielding course of dementia’s decline. My temperament serves me well here; all of this I handle as a list of things to do. There is a time and place for each detail. 

Around here, we operate on a schedule and in a familiar setting. Sometimes I even check things off when they’re finished. Some things, like brushing our teeth, we do together morning and evening. Other things, like making meals, I do solo (or with my caregiver, Kathy’s help), intending to set the plate on the table at a specific time, the same time every day. The week’s calendar decorates a large whiteboard posted on a wall in the kitchen. A consistent schedule helps Doug feel secure and unflustered, and it helps me organize what’s what. I live two people’s lives – mine and his.

Mercifully, Doug’s laid-back personality is refreshing and makes our lives together more graceful. He has never been a complainer and is happy to do what he’s told. He has always been witty and fun, whimsical in many ways. He still does life through that lens. Even with dementia, laughter visits frequently.

A few days ago, though, the laughter stopped, and I noticed differences in Doug faster and more aggressively. He wanted to sleep a lot. I was suddenly spoon-feeding him, and he would bumble out words saying he felt cold. I took his temperature many times. His temperature was normal, his blood pressure was normal, his pulse was normal, and he had no pain. I struggled to understand the changes. I have not experienced Doug being sick. I wasn’t even sure he was sick. What-was-what felt disordered and wrong, but nothing conclusive, just different, just more not being able to take care of himself, basically just more dementia.

I wondered if this was possibly the beginning of the end. What does the future of dementia look like as Doug approaches eternity? It felt like a giant leap to unexpectedly be near the end, but I’ve never seen this side of dementia before; I wasn’t sure what it all meant. But then, somewhere mid-thought, when I was ruminating about the emptiness life would bear without him in it, Doug spoke up with as much clarity as he could muster, shaking me out of my grief-ridden obscurity, and said, “I’m drifting.”

For some reason, that was it; that was all I needed – I went into high gear and took Doug to the emergency room armed with nothing definitive to share with a doctor except a gut feeling that something just wasn’t right.

In the ER, Doug’s temperature was normal, his blood pressure normal, his pulse normal, and he had no pain. The medical staff moved ahead because I said, “something’s wrong.” They took my word for it, and they took blood and a urine sample.  Then, we waited. Results showed Doug had a raging urinary tract infection (UTI). The doctor said, “he is one sick puppy,” and started an IV with fluids and antibiotics.

Doug is home now, healing on oral antibiotics and, back to his dementia, “normal.” We had a follow-up doctor’s appointment, and I learned UTIs are common in advanced dementia.  It could happen again.  Hopefully, next time (if there is a next time), I will be more aware of the signs.  But for now, I am breathing in thankfulness, peace, and relief. I am working on breathing out all my missed ques, the badgering, unkind self-talk swirling between my ears, and the anxious feelings I hide about a future missing Doug – stuff not solved by a high-strung temperament, a planner, a goal sheet, or a checklist.

Equanimity encourages me to let things be as they are in the moment and embrace inner smoothness. John 14:27 profoundly and gently reminds me God is close. It says, “Peace I leave with you; my peace, I give you. I do not give to you as the world gives. Do not let your heart be troubled, and do not be afraid.” Embracing inner smoothness and God’s secure peace is counterintuitive to my control-riddled temperament. They both require letting go, which is gradually happening as I bump along this uneven, sometimes jarring dementia road. I opt to trust that eventually, inner smoothness and God’s Peace applied will pave a more tranquil wounded path to travel as I hold Doug close and keep moving forward, one day at a time – no matter where it takes me.

Karen