“How odd?” I ask, grabbing a pencil to jot notes. I’m a little worried about my own memory.
“Well, he’s wearing Depends on his feet.”
I grin broadly and wave, wondering if Dad can recognize me or my joy from behind my face mask.
His bent body strides forward with his usual characteristic confidence and determination, just slightly shrunken. Is he smiling behind his mask? His eyes do not brighten, but look as determined and duty-bound as his gait.
“This is a good day,” I announce with enthusiasm, and I thank the aide who escorted my father from Memory Care to the front entrance, where I stand safely six feet away from all traffic patterns. The aide mutters apologies that Dad isn’t cleaner.
“We tried our best.”
“It’s fine,” I whisper back. I know he is resisting all their attempts to help him, and I’m relieved to see dry, baggy jeans, and only two shirts. “Thank you!”
I don’t wait for Dad’s usual list of concerns or complaints, but immediately begin priming the pump for a new outlook.
“I can’t believe I get to spend the day with you! It’s so nice to be together. Let’s take full advantage of this afternoon!”
“It’s nice to be free,” he says, looking around at the sunshine.
Dad bumps his head as he slides into the passenger seat and gives the roof an offended glance.
“How did that get there?” he says, but I hear that teasing tone in his voice, and my heart leaps a little. He’s being funny.
His new normal has been a slow slide into the certainty that everything, every single independent thing, is somehow flawed, wrong, dire. It pains me to hear the deep sense of loss or injustice in his voice when over the phone he responds to my questions about how things are going.
“Not so good.”
“I’m a prisoner here.”
“Terrible.”
“I’m in big trouble.”
“I’m destitute.”
“Something is very, very bad.”
I’ve become convinced that the feeling precedes his conclusions, not the other way around.
We all do that to some extent; I wake up feeling sad and decide my marriage is losing its luster or my boss is unhappy with my work. But when you have dementia, there is no plumb line of truth to measure from, just a feeling, a dread, a sense of fear or loss, and a need to explain it. So Mother is not doing well, or the dog might die, or someone has robbed him of all his money. This last one is a daily phone call we must negotiate our way through, and I have a million opportunities to try different ways of responding until I find one that gives him a sense of hope, or a way to be at peace. We’re still looking.
It’s fascinating to me, in a weird way, to watch the difference in dementia in my parents, who moved into the same Memory Care unit just one month apart. Dad’s lifetime of being a strong, dominant leader does not equip him with the skill of letting go, trusting, or receiving help. He must do it all himself, correct those younger than him (he is convinced all the aides are teenagers), and keep “working” every waking minute. But Mom, whose lifetime of following and serving her leader built a strong surrender muscle, generally absorbs inconvenience with equanimity.
“Whatever,” she shrugs with placidity, and moves on.
So when logic fails, how do you bring comfort? This has been the biggest challenge in quarantine--the inability to be physically present with my sequestered, well-protected parents.
I know for a fact my Mother would feel comfort from my bodily presence that she cannot feel from my words over the phone. Conversation is unravelling for her. Words provide little meaning or solace when your memory is only 15 seconds long. And when it is her turn to talk, she confuses conversation and prayer, mixing the two together in a long, peaceful monologue strewn liberally with the phrase, “We belong to you.”
It comforts my heart, this contented babble from this peaceful woman. But I know my presence and my touch would feed her in a way my words cannot. In our recent garden visits, me outside the window, Mom inside and speaking through a baby monitor, she brightens immediately with instinctive recognition when I enter the garden gate. She waves with gnarled, arthritic hands. I am comforted, and she seems to be, too, as we blow kisses back and forth.
Mom’s short memory works in her favor. She has no idea I haven’t been inside for months.
“See you tomorrow!” she says when I wave goodbye. It’s never tomorrow, but she won’t know.
Mom has her off days, too—like the one when she adamantly insisted on serving all the residents dinner, despite my Father’s attempt to correct her.
“Larry,” she finally shouted, “IT’S IN THE BULLETIN!”
Well, apparently that settles it. If it’s in the church bulletin, it’s gospel.
But mostly Mom just adapts, contentedly, and escapes into sleep.
I want to be there. I want to rub her shoulders and l lie down next to her on her bed and hear her low, ready laugh. She distributes her smiles liberally, even if they are a little sleepy. Complaint is not her mother tongue. I draw strength from her physical presence, as she does from mine.
My father, however, is a different challenge, and I wrestle to find how to soothe him.
Dad’s persistent sense that the world is oppositional and he must put it to rights robs him of rest or contentment, and as he declines further into the confusion of dementia, he gives the staff fits as he resists every attempt to help him. I just wonder if getting him out into the sunshine for some exercise and adventure and companionship and joy could change the angsty channel in his brain, even for just a while.
But that’s just not possible, under the COVID-19 restrictions. Even my garden visits are of little comfort to Dad. He tries to force his way out the door, but is restrained. He stubbornly stands with his back to the wall, refusing the chair next to the microphone. He stares at the opposite wall, talking to me without meeting my eye. He eventually excuses himself, because he has “so much to do,” and strides off.
Today when the phone rang I felt that familiar shot of adrenaline that always accompanies a call from Dallas Retirement Village. One never knows what words may follow my “Hello?”
“We have some concerns about Larry,” she says. “He’s been acting very odd, and we don’t know if this is just a very rapid mental decline, or if possibly he has a urinary tract infection. He won’t cooperate with us to give a urine sample.”
“How odd?” I ask, grabbing a pencil to jot notes. I’m a little worried about my own memory.
“Well, he’s wearing Depends on his feet.”
I snort through my nose.
“He has wrapped another Depends around the dog’s neck.” The dog was a miraculous concession, the first dog ever allowed in the facility.
“In fact he’s ignoring Buddy quite a bit, and left him in the Activity Room all night. He won’t allow us to help care for him, but he’s not caring for him either. And yesterday he wouldn’t allow your mother into the dining room for dinner. And the black spots he is obsessing about? Now he colors over them all with a felt pen.”
Oh.
The list continues. He will no longer allow even his favorite aide to help him with dressing or showers. He layers clean clothes over dirty. He smells.
Oh, my Daddy.
“We would like you to try to get him to a doctor to see if they can check for a UTI.”
Of course. And the doctor’s office, miraculously, has a cancellation and can get him in at 3:00 today. And, doggone it, we’re going to make the most of this escape.
We pull slowly out of the parking lot, masked like bandits.
“It’s so nice to see all of this. It’s been months,” Dad says as he looks around at the beautifully manicured village grounds, and I am a bit surprised that he’s making perfect sense.
“I miss that house,” he says, looking at the home he and mom shared for ten years before moving to Memory Care. “The neighbors were so nice.”
The doctor’s office is only 3 miles away, and Dad seems to recognize EVERYTHING as we drive in the sunshine.
“Oh, it’s so nice to see these familiar places,” he says.
I chatter cheerfully about what we might do after the doctor’s visit. “This is such a great excuse to get out and spend some time with you!”
I begin to orient him to the need for giving a urine sample, and am pleased that he seems on board with the plan, particularly when it’s his ticket to liberty and summer.
“I remember the other time you took me on that hike. It was so beautiful. I have the pictures in a magazine.”
He’s referring to a photo album I sent him. The last hike was our only other escape during COVID, and it, too, was prompted by a doctor’s visit. Dad’s doc wasn’t available, so we went to someone else whose name I can’t remember.
But Dad remembers. “It was Thorton or Horton.”
I’m a little stunned. He’s right.
“He was very nice. There was a young teenage girl there.”
I hope he’s referring to me, because I don’t remember a girl. Wait…. Maybe the one who took his temperature?
I’m puzzled by Dad’s lucidity, but that’s sort of the deal with him. One minute he’s making sense, the next he is all over the map. You can’t presume all recent history is erased, as it is for my Mom. It’s so random, this wandering in and out of the dark.
We settle in to wait for the doctor. Dad is energetic and reminiscent, clearly enjoying the memory triggers around him.
“Does this room seem more stark than it used to be?” he asks. I haven’t noticed, but he’s right again. The soft things like magazines are missing from the décor during this new era of cleanliness.
And then suddenly he’s asking me if I’ve met the new Steve, the one who lives in California and writes him letters now and then. I explain that there is no new Steve; that’s the same son he has always had, but yes, he does live in California, and often writes.
Dad is certain he’s right and I’m wrong. I gather the new Steve is his favorite.
“He’s the one that was 27 when he was born.”
I try to decode. Was Dad 27 when Steve was born?
While we wait for the doctor, the Nursing Assistant comes in, and Dad shows her where he has carefully hidden his money, wrapped neatly in his handkerchief.
She decides to do a memory test with Dad. Inwardly I groan. Just talk to the man! Can you not see what his status is? Why humiliate him?
“Just 10 questions,” she insists, but she has to repeat them each several times. Dad seems to think these are questions about him, and gets distracted telling stories. This is taking forever.
“What year is it?” she asks.
“Well, 92,” he says proudly. I know immediately that he’s thinking of his age.
“1992?”
“Yes! That’s it!” He has recovered his self-assurance from not knowing what state he lived in.
He names only 4 animals in one minute, and keeps reverting back to, “Well, dogs.”
She asks him to draw the time, 10:11, on the round clock face. “10/11” he writes confidently.
At last we arrive at the final question.
“I’m going to tell you a story and then ask you some questions.”
“Okay.”
“Jill was a stockbroker in New York City.”
“Well, no,” Dad says, “that’s not right.”
“Excuse me?”
“No, she isn’t. Because she’s, well, she’s just not that sort of a person. You see, she’s not, well, she wouldn’t do that.”
My hand is over my mouth trying to stifle my laughter. The Nursing Assistant stares blankly from behind her mask. What to do. After an awkward silence she begins again, and completes the summary of Jill’s pathetic life.
“What did Jill do for a living?”
“She worked in a grocery store, I think,” Dad says.
Poor Jill.
At last it is time to stroll down to the lab for that urine sample, and Dad, who will not allow anyone to help him dress, twice begins to disrobe right there in the waiting room.
“No, Dad. We’re waiting for someone to give you a cup to put your urine in. Then we will show you to a private restroom.”
Somehow we accomplish that feat, and return to the exam room, where Dad’s doctor of the last 10 years greets him. Dad also lets him in on the secret of his carefully folded and hidden money.
It gets whacky from there, and I’m having two conversations, one with the doctor, low and fast on the side, explaining the issues dad is having, then turning to engage again with Dad, who is being insistent that there are TWO Daves. Or… “What was his name?”
Me: “You mean Steve?”
Dad: “Yes, that’s the one…”
Me, softer: “…So if it’s not a UTI, is there anything else you can suggest? Is there something that will change his mood, so that he’s not always sad, and maybe more compliant?”
Dad: “The one that was born at 27. Have you met him?”
Doc, low: “I can see the problem. Maybe a geriatric psychotherapist…”
Dad: “Have you put on weight, Doctor?”
Me: “…a referral?”
Doc: “There is no one I know of in the area. It may be time to think of next steps.”
Dad: “Is it John?”
Me: “It’s Steve, Dad. Their name is Steve.”
Doc: “I’ll give you a scrip anyway; the test wasn’t conclusive.”
Me: “Wait. What next steps?”
Doc: “Memory Care.”
Stunned silence.
I blink. I smile and thank the man who signed Dad into Memory Care five months ago. I take the scrip and my Dad and we leave.
“Want an ice cream cone?” I ask.
“Can I bite the curl at the top?”
“Sure! Why not?”
We munch our cones on the way to the park, the one downtown where Dad and Mom used to walk every single day of their lives, except maybe on Sundays, with their dog, Mom bumping along behind Dad and Buddy with her walker bouncing frantically as she sought to keep up to Dad’s brisk pace.
Today his gate is slow, his body bent.
“I remember this place!” Dad beams as we strike out slowly across the wide lawn. He wants to see if that’s a man or a tree stump. It’s a stump.
He smiles at the children playing in the creek, and at the lady with the “very short” swimsuit who reaches out for her child’s hand. Dad greets the faster walkers who pass us on the foot bridge and tries to strike up friendly conversation with the skate-boarding adolescent who is trying desperately to be anti-social.
We settle at last into a bench in the shade, and lower our masks for a quick, forbidden selfie.
I don’t tell him the rules; he would never agree to that stolen photo.
“This was a good idea,” he says.
We relax and gaze at the trees, noting which ones wave in the breeze, which ones are still. I’ve finally found my own stillness, after blowing about in concern, trying to solve everything at once. Dad breathes deeply. He, too, is content.
This.
This is the therapeutic remedy, not that. Not the medicine, the tests, the psychotherapist.
It dawns on me that Dad’s symptoms may be simply a divinely appointed gift, a way to give Dad the medicine he really needed. Family. Memories. Sunshine and breeze. Freedom.
Three short hours of summer in a life of quarantine.
We wander back to the car, and I wonder if we should go for a drive to extend his liberty longer. I remember that several times today Dad has bemoaned his inability to go to the store.
“Want to stop at the store, Dad? Do you need some more Depends?”
“No, I’m ready to go home,” he says contentedly. “Besides, I have plenty. I’ve got three pairs on right now.”
We pull up to the entrance, where Dad greets the “teenager” waiting out front to take him back to Memory Care.
“I think I recognize you,” he chirps cheerfully.
And as he waves and walks into the building, anyone can tell he is smiling behind that mask.
Afterword:
Those were Dad's last hours in the sunshine.
By the time we got the coveted permission to take him on walks, I had Covid. And before I could test negative, my father was taken to the hospital after a simple fall. Something was unravelling, but what?
Entirely disoriented, without any comprehension of where he was or why, my dad fought them, hard.
“Your Dad is very strong,” they said. This small, bent man whose energy was endless. Yes, strong.
My family was heroic. My sister drove 1200 miles to be there with him, my brother flew in from another state, and I waited and worried a few miles away. But Dad, in their company, was a kitten. Restraints were removed.
When at last I was cleared to join them at the hospital, Dad was beaming. No longer intent on resisting arrest, he stammered out questions, laughed at our stories, beamed at the pictures of great-grandchildren he didn’t know he had.
“She reminds me of you, Dad,” my sister said.
“Big nose?” he quipped.
“Is he on mood stabilizers?” we asked the staff, but they assured us he was not. It was the reassuring presence of family that was his medicine, they said. We were delighting in a Dad we used to know, the one who was content, happy, humorous, grateful. With his people around, his still-present confusion was eclipsed by calm contentment.
But Dad daily grew more helpless, and soon the hand that fought them a week before could no longer grip mine. Dad’s body was shutting down, for several reasons, each unrelated to his fall or to Covid.
“Tell the people it’s okay if I go,” he calmly said one day, without a trace of worry.
It was my turn to be by his bed the evening he passed.
“Good-bye, Dad! See you tomorrow,” I said, trying to sound more confident than I felt. I gave him another kiss on top of his bald head. The day had been difficult, and I expected worse ones to follow. I needed my sleep.
Still, I hesitated. An old blessing came to mind, and like a Pentecostal preacher I boldly raised my hands over his bed, and prayed:
“May the Lord bless you and keep you.
May the Lord make his face shine upon you and be gracious to you.
May this Lord lift up his countenance upon you and give you peace.”
I wept my way to the car and pulled out into the night air, and then realized my phone was missing. I was tired and annoyed, but I knew where I had left it: beneath Dad’s bed.
I sped back to the parking garage, through the Covid checkpoint, and took the stairs at a run. And as I entered his room, I knew. Dad was slipping away.
It was my great honor to wrap my arms around my father and kiss his dry, bald head again and again, reassuring him of my love and that it was okay to go. And with a soft exhale his precious, strong body ticked to a stop.
“Well done, Daddy,” I said as I kissed him and stroked his lifeless form. “Well done.”
And After the Afterword:
We drove through the countryside yesterday, my Mom and I, sipping pumpkin milkshakes on our way back to her Memory Care facility.
I never got to walk with my Dad again, but he left this legacy: Permission to take my sweet Mama out of the facility on carefully distanced excursions.
I come at the beginning of Mom’s restless Sundowner’s phase, when her need to leave for a place that she knows isn’t here makes her mind spin and her spirit agitated.
They wheel her out to the garden gate where I wait. I beam at the Aide, and then crouch low to make eye contact with Mom, scanning her for hearing aid, mask, enough layers to keep warm, and mostly for the furrows in her face that will share what she is feeling when words cannot.
Some days she beams back; sometimes she looks past me, bored and resigned. Occasionally it is confusion and pain I see on her face.
I chatter as I wheel her out into the sun, and measure her current cognitive capacity by her response. Two sentences is a good day. Sometimes she forgets where her sentence was going five words in, and grinds to a stop with, “Oh, I don’t know.”
Occasionally I see confusion on her face as she reaches for words that have gone missing and substitutes something that isn’t at all what she intended.
Whichever version of my Mom greets me, I personally feel the delight of connection, and believe the sound of my familiar voice, my references to childhood memories still intact, my smile or laugh bring her an unreasonable sense of familiar and normal and good.
We stroll the neighborhood in her wheelchair, or have tea and scones in the outdoor pavilion, go for country drives, or sit in the car and talk through old photo albums. Stimulation. Comfort. Distraction from her inner world of mystery and lostness.
Thanks, Dad, for giving me a way to be with Mom when your shift was through.
Well done.
This is a keeper, especially for those of us in the family. Thank you for all you did for our parents during this last challenging year. So glad they have both been released from their earthly tents and are now whole.