Walking With a Limp

When Doug was in his adult prime, feeling good, exercising often, eating healthy, working a job he loved, and parenting three kids, our family went on a beach trip and camped in a campground. Because of Doug’s joking ways and overall whimsical personality, I thought he was kidding when he started walking with a limp. I did not see him fall, twist, or bend over funny; he just started limping and complaining. Doug rarely complained, so I figured maybe he wasn’t faking, maybe he hurt something, but really, how bad could it be? Doug didn’t even remember the moment of injury; he just had a limp, and he became more limpy the longer we camped.  

As it turned out, Doug had injured his knee. The repair required surgery and a Carticel procedure, keeping him from weight-bearing for a very long eight weeks. At the diagnostic appointment, Doug gave me that humorless look that said, “See, I told you! I wasn’t faking or kidding!” I felt guilty for teasing him and pretending I also had a limp while camping. Crutches became his get-around tool. He became proficient on them even in our house with many stairs. Doug considered the crutches his helpful upper-body workout companions. The guy was buff!

With dementia, Doug does not kid around anymore. Kidding around requires high executive functioning, which his dementia has slaughtered. He is quiet, occasionally speaking a one-word sentence or word-salad gibberish. I have had to become proficient at reading his body language to interpret his needs, much like a mom does with a toddler who has not yet developed language. I watch Doug’s ways, his antics; I look for a furrowed brow or a smile, listen for a cough or a sigh, notice excessive sleeping or pointless pacing, and sometimes I even watch for a limp.

The brain oversees everything the human body does. Everything. Doug’s brain is literally shrinking, and his abilities are dwindling daily. Yesterday he fell. My strong, active, athletic husband fell to the ground in a completely empty room for apparently no reason. The doctors he sees, and all the online material I have absorbed have warned me that falling late in the disease is a thing. Doug’s doctor has been calling him a fall risk for the better part of a year. We have a handicapped placard for the car, and I hold his hand when we are out and about, but somehow, in my denial and wishful thinking, I thought this part of the disease might skip us.  

Doug was shaken. I was stunned. He was not badly injured, just a bruised tailbone, I think. I helped him to his hands and knees and eventually up. He doesn’t remember it. I can’t forget it. I have rolled up the rug in the entry, the throw rug in the bathroom, and the rug in the dining room. Any potential trip hazard is removed except for my hurting heart. I am tripping over my feelings. My sweet, strong, capable husband is leaving me piece by piece, and I am an onlooker. Each digression in dementia leaves me feeling vacant, almost hollow. I miss him deeply, yet he sits next to me as I write this.

Most days, I handle my emotions stoically and succinctly. I control them and bury them in busyness and grandbabies and hobbies, or I simply am with Doug where he is without engaging in messy emotions. But today, my feelings and struggles, wishes, and laments are the boss of me. Emotionally, I am walking with a limp. A limp I fear will never go away. A limp threatening to become a part of my forever self, changing how I interact with the world and exposing the road I have traveled.  

People with good intentions tell me to take care of myself. I was told that self-care is building a life I don’t regularly want to escape from. Honestly, I have to simmer on that a little longer. Many days, escaping feels like a healthy alternative. There is so much brokenness in dementia. Doug is clearly broken. I am undoubtedly broken. Our relationship is broken in that it is different than it’s ever been – than we ever dreamed. Self-care or taking care is slithery. Easy and trendy to say, complicated to do.

Kintsukuroi is a Japanese art form. The artist takes broken pottery and repairs it using gold. It’s quite beautiful. Look it up. The artistic premise is something becomes more beautiful for having been broken. Is that true in life, also? Can the strewn fragments of my brokenness be patched together more beautifully than before? It’s hard to imagine.

I want to believe that Kintsukuroi of the heart is possible.  I want to think that all things can be made new within God’s hand. I want to believe I have been branded with this emotional limp of ambiguous loss for a reason. When things make sense and fit into some sort of an intentional, reasonable plan I can control, it doesn’t hurt so bad. I want it to make sense. But that’s not today in this one-day-at-a-time journey.  Today, it doesn’t make sense, and I hurt. I’m sad. I fear the future decline of the disease, and I miss my strong, capable Doug.