In search of story


Vagaries in Gestation: November 28.16


Yesterday I drove to the park and, as always, slowed on the adjacent street, where little wiggly people are unloaded from back seats. A car at the curb had its doors open on the street side, so I stopped and waited.

A man stood at the side of the car, arm outstretched, helping someone out. Not a wiggly little person but a ponderously slow older person. A woman. Bundled warmly against the November day, she held his hand tightly. I caught only a brief glimpse of her but I knew. I knew those blank eyes and that empty face. I knew that slight curl inward. I couldn’t swallow because of the lump in my throat and I couldn’t see because of the tears. It all comes back so quickly.

I walked around the park and so did they. No. They did not walk. She moved her feet in that familiar shuffle, achingly slow, leaning hard on him. His baby steps described patience beyond words. Twice I noticed that they stood in embrace, she apparently clinging to him.

There was a slight wind, causing tears to run down my face. I tasted their salt and was grateful for the release.

Caregiving and dementia change people so I cannot say if he were husband or son, but I think son. I think the husband was at the playground with a little granddaughter, he seeking respite which isn’t because there is no respite from dementia. It is merciless in its constancy and as steely cold as the water in the creek.

I stood over the creek yesterday and thought about the cold water that runs through life and the daunting aloneness of those who stand firm in it.





Vagaries in Gestation


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When you’ve had enough…

“You’re talking about me! I know you’re talking about me!”

I looked up. There came my mother full tilt down the hall.

Yes, Mom, I’m talking about you! This is the nurses’ station and I am going home for the night! I’m telling them there is no one with you now!

There was no patience in my voice. I’d had enough of her paranoia and enough of not knowing who she was.

A few years later, my father threatened me. I walked out of his hospital room fighting back the tears, to a different nurses’ station, where I told them I was leaving and didn’t give a damn what my father did.

I’d had enough of Dad’s dementia and enough of not knowing who he was.

My mother’s last Mothers’ Day present was chemotherapy. On Dad’s last Fathers’ Day we took a ride and hit a rough patch of road which caused me to exclaim “It’s a good thing we haven’t eaten yet!” He replied, “You mean we ate already?”

A lot about caregiving comes back to me at this time of year. Dad died at the end of March. Mom went into crisis in mid-April and died mid-June. Different years, same season. Same me. Mom’s brain tumors, Dad’s dementia, spring, Mothers’ Day, Fathers’ Day…it all blends together like muck and mud.

Sometimes you have your parents but you don’t. You see and hear only the look-alikes that disease has left in their stead. They know you, but you don’t know them. Eventually they don’t know you either. So where’s the Hallmark card that says “Happy Mothers’ Day, Whoever You Are,” or “Happy Fathers’ Day from the Daughter You Don’t Know”?

Forget “When you care enough.” It should be “When you’ve had enough.”


There comes a time

It had been a very long day, but then most days were. In addition to the usual bounding between Dad and catastrophe, there was a visit to his primary care physician. Dad was unsteady and taking him anywhere was a challenge. The doctor had told us that he was withdrawing some of Dad’s medications and that Dad should eat whatever he wanted, cholesterol be damned. Well, maybe those weren’t his exact words.

Dad and I had finished our usual early dinner and the day was closing into a winter evening as Dad was closing into himself, beginning his night’s restlessness. The phone rang; I took the call in a room away from Dad and was surprised to hear the voice of Dad’s wonderful doctor.

“I wanted to be sure you understood me today,” he said gently.

I assured the doctor I had understood: aggressive treatment was no longer the greater good. Dad’s body had had enough of swimming upstream. He was 84, worn out by dementia he didn’t even realize he had; his cardiovascular system and heart were exhausted, his mind not his own any more. Death wasn’t imminent, but life was, like the winter day, closing.

The doctor gave me permission to stop fighting the disease. It was OK to let go and know that Dad and God would take it from there. It was time.

It didn’t mean the end of medical care for Dad; it meant that medical care had a different purpose. The doctor was not abandoning his friend, as he referred to Dad, but standing with him, acknowledging reality when Dad couldn’t.

There comes a time when time runs out, and it’s all right to put away the clock.


The dad thing

There were some good lines in M*A*S*H. One in particular was spoken by my favorite character, Winchester, when he said to Hawkeye something like “You’re lucky: you have a dad. I have a father.” He said his father was a good man, a good father, but that was different from being a dad.


I had a dad. It wasn’t that he was the warm cuddly type; he wasn’t. He was a bit distant and certainly undemonstrative (except when Notre Dame played), but still he was a dad. And I’ve known other dads with daughters; I’ve seen the bond, part genetic and unavoidable, part deliberate and conspiratorial. Despite the occasional head-butting, there remains between them an invisible wink which says “We rule!”

My son was a stay-home dad when his daughter was born, and they enjoyed each other mightily. There was trust and security, yes, but also that mysterious shared scoff at the rest of the world.

She’s nine now, and last week they ran a race together, a race not to be first but to finish. That life lesson. The weather was hideous but there they were, in step, headed to the finish line, her bright pink duct-tape bow bobbing in the icy fog.

I look at the photo and I think of being in step with my dad those last years of his life, when it was Dad, me, and the dementia: the caregiver’s race with the inevitable. Dementia outruns the caregiver every time. But the life lessons apply, and it’s the running to the end that may, after all, be the winning.

Our dads probably taught us that.

Pretty In Pink and Mr. HuffNPuff:  life lessons

Pretty In Pink and Mr. HuffNPuff: life lessons


The match

“He looks good.”

As Dad’s caregiver, I became a tinderbox. Days and nights of heading him off at wrong turns, pulling him back from precipices, throwing him life preservers, and that is what I heard from people: “He looks good.” I wanted to yell in their faces “OF COURSE HE LOOKS GOOD! HE HAS A FULL-TIME DAUGHTER!” I was this close to combustion.

What does that mean, “he looks good”? Doesn’t it express some doubt that there is anything seriously wrong with him? Like you would know! You can’t SEE dementia! There is no rash, no swelling as outward sign. Dementia victims who are intelligent and socially skilled will hide it from you expertly. The caregiver sees it in behaviors behind walls, behind pretense, in deep daily ruts, in frightened eyes.

“He looks good.” Isn’t there an implication that I’ve been over-reacting? That I am flitting around him like some possessed moth and therefore the problem is in me and not in him? I noted that no one told me that I looked good. Were people implying that I was the sick one, and that Dad was fine?

Sparking flint, crackling tinder.

One day Dad and I were in a curtained alcove in the ER. He was angry about “the rude people at this party” and kept referring to me as “that young man.” A good, kind priest we knew happened by and spoke with me for a few minutes, looking over at Dad. “He looks good,” he said. Did I really want to strangle a good, kind priest? Yes, I did.

What is it with “he looks good”? Is there nothing else to say? Can no one hear the implications for the caregiver? Can no one smell the smoke?