Category Archives: Aging & dementia

Afternoon visits

I tend to visit my father’s nursing home in the late afternoon.

That’s when parking is most readily available. There are almost never any free parking spots on weekday mornings and I’ve given up trying at those times, but there’s almost always something open in the later afternoons.

It probably skews my experience of his condition. In the mornings, I’m told that he’s more likely to be out of bed and in the common room there on the third floor, watching television or sitting at the end of the “men’s table” near the door that opens to the hallway, looking at picture books or simply watching the staff and other patients come and go.

When I get upstairs in the afternoon, he’s most often asleep, and I’ve had to learn that there’s sleep, and then there’s sleep.

A light sleep, no problem. He senses movement near his bed and his eyes open, he looks around, sees me, and there’s quick recognition. He welcomes me by name and we’re good to go.

Deep sleep, though, is a different story. Sometimes he appears to be actively dreaming, eyes fluttering, a foot moving, hands in motion, acting out a scene from memory.

Pulling him out of this kind of sleep isn’t as easy or as pleasant. His eyes open slowly, and there’s more than surprise in his expression. I think there’s fear and bewilderment, as if he’s being awakened in a totally foreign place in which he finds nothing remotely familiar and without a clue about where it is or how he got there. He never says, “Where am I?” or “What’s going on?” but that’s what his eyes are shouting.

Sometimes on these days I’ll just let him sleep. It’s easier for me, and may be for him as well.

On several recent visits, relatively good days all, he opens his eyes, says hello, and then looks at the clock on the opposite wall. The routine is the same each time.

He reads the time.

“Four thirty”, he might say, correctly reading the hands, his voice low and rough, his mouth still full of sleep. He looks at me, then back to the clock.

“A.M. or P.M.?”

The first time I heard the question, I responded facetiously. “Well, 4 a.m. is a little early for me to visit.” He looked at me blankly.

So now I stick to the obvious.

“P.M.” I reply, the afternoon sun streaming in the window behind me, a vertical strip of sunlight hitting his face whenever I shift in my seat and brush against the curtain.

Each time he learns that it’s late afternoon, he’s genuinely upset. He shakes his head, as if he can’t believe the news.

Then he looks up at me.

“I’ve got to get organized,” he says, voice determined. “I’m not getting anything done.” He puts an emphasis on the last word, angry with himself for failing to take charge of the time.

Getting things done has always been important to him, working 12-hour days when he was in business and continuing even after he retired in 1998 at age 85. He mowed the lawn of their large 11,000 square foot Kahala yard well into his 90s, raked leaves dropping from the two large mango trees, and tended the garden he created as a retirement project, then would shower, change clothes, and drive to the Ala Wai to work on his boat.

Now there’s no boat, no car, no garden, no yard, not much of a life.

Yet there are some days when he recounts how busy it has been.

“I spent the morning in Kona making calls,” he might say, his 60 years as a restaurant equipment salesman giving him plenty of experience in stopping by to meet current or prospective customers. Now it’s all in his head.

But I think I would prefer these vivid dreams of meeting the world and getting things done rather than the reality of waking up in the late afternoon and realizing another day has slipped by unaccounted for, time evaporating like rain drops on a hot sidewalk, hour by hour, day after day flowing by, interrupted only by meals, the regular indignity of having to rely on others to get out of bed or use the toilet, and visits from your children, themselves now older than you once imagined you would ever be.

Another visit: The third floor chorus

Last weekend, I realized that I had been finding excuses to avoid visiting my dad. No time today. Of course I want to stop by, but this or that thing just popped up that “needs” to be done instead.

Visiting isn’t joyful, although there are, I suppose, small moments to be treasured. Walking into the nursing home is a reminder that this is a one-way trip we’re all on, each patient now only a fragment of a life lived, a family raised and scattered, hopes, whether fulfilled or not, now only fading memories, if memory by chance remains. Walking down the hall towards his room requires negotiating passage past men and women in wheel chairs, leaning on walkers, moving slowly, sometimes painfully, or sitting, some alert, some blank, past nurses managing medications or special care, past nursing assistants providing the nitty gritty hands-on support needed for so many simple tasks, getting up, sitting down, getting to the bathroom, getting out of bed, greeting a son or daughter. It’s an inescapable reminder of our own mortality, and I find myself mentally fidgeting, subtracting my age from his and wondering about how long it’s possible to avoid this collision path with aging.

One patient dies, another takes his place. That happened again recently in my dad’s room, and so there’s someone new in the next bed. He’s hooked up to a medley of electronics and tubes delivering oxygen, monitoring responses, dripping solutions or medications. There’s a curtain separating their beds most of the time, but some times of day it’s apparently pulled back and my dad can turn his head and see what’s going on over there.

The first day I visited after the new patient’s arrival, my dad pointed to the curtain, and whispered: “That man sleeps with his mouth open.” He imitates, opening his mouth, exaggerating the act of breathing. It bothers him, the open mouth in the next bed, although I’m not sure why he fixates on this among all the things he hears and sees each day.

Then there are the sounds. When I arrive, my dad again points to the curtain, asks me what’s going on. He can hear can hear one of the CNA’s at work, tries to hear what she’s saying.

“What’s going on out there,” he sometimes asks me, pointing generally towards the rest of the room and out to the hallway. “It sounds like they’re doing a lot of work in the hotel today,” he’ll say, his mind trying to make sense of the sounds beyond his own sheltered bed next to the window over looking the bus stop on Beretania Street and City Feed Store.

He listens to the beeping machines, sounds of heavy breathing. Then there are the occasional human sounds. Moans, shouted, seemingly requiring more accumulated energy than the wired-up man in the next bed could possibly muster. He groans loudly. Repeats. Once. Twice. Again. No real rhythm, no language. A strangled sound of frustration. The nursing assistant tries to shush him.

“Don’t make noise, Mister,” she calls. “Oh, don’t make noise.”

I can’t tell whether these are involuntary visceral outbursts or attempts to communicate. If it’s communication, I admit that I’m trying not to listen, as if ignoring the disturbance it will somehow shield my dad from it as well.

And I find myself not wanting to know what’s really going on. It’s hard enough dealing with my dad’s condition, and I draw a mental curtain around us. I know that I should extend my empathy to the others here in the room and on the floor, but I haven’t gotten into the space to do that. So I pretend not to pay attention to what’s going on behind the curtain. I know it’s distressing for me, and I’m only there for short periods. I worry about the toll it may be taking on my dad, who is there essentially 24 hours a day, all the while struggling to make sense of what’s happening in the next bed. Or, as he says, the next room. Next door. I want to pretend all is well, but the sounds of labored breathing, interrupted by urgent moaning, give the lie to my efforts.

When I arrived to visit one day earlier this week, made my way down the hall, stopping first for a squirt or two of hand sanitizer, into the room, past the other beds, past moaning man, then around the curtain, and found my sister, Bonnie, already sitting at the bedside. My father is on his back, sheet pulled up just above his waist, foot moving restlessly under the sheet. He’s awake, lucid. Bonnie finds the button to move the head of the bed higher so that he’s almost in a sitting position.

I look to sit down. The nearest empty seat was the portable hospital commode sitting in front of his bed, next to the closet. On the wall, two photos, one of my nephew’s daughters, one of my dad on his boat after a successful fishing trip. On a not so good day, Bonnie says that he looks at those photos and asks who the people are. On a good day, I point to the boat and he smiles gamely, not letting on whether or not he is remembering.

In any case, I select his walker, which has a built-in seat, move it over near the foot of the bed, sit down. We make conversation for a while, Bonnie’s good at that. After a while, the man behind the curtain started the loud groaning again. There’s nothing we can do about it. I flinch. It’s jarring, uncomfortable. I want to get away but can’t.

I watch for my dad’s reaction.

He looks to his right, then gestures at the curtain and beyond.

“Would you call that ‘disturbing’?”

We nod, yes, of course. The groaning from behind the curtain continues. I’m worried about my dad’s reaction.

Then he slowly raises his right hand off the bed, holding it out in front, palm down. The hand moves, slowly, up and down, left and right, and suddenly I see the twinkle in his eye and realize that his hand is moving with the sound from beyond the curtain. He’s no longer just enduring a disturbing sound, he’s directing it, leading the choir. Taking control of events, even in this small way, a big victory.

Live and learn.

A trip back in time to Wilson High School in Long Beach, California

Graduating ClassI surprised my dad when I stopped to visit him one after early in the week.

He was sleeping lightly when I arrived, so I had to wake him up. I put my hand on his shoulder and shook it. A moment of anxiety followed. Will he recognize me when he wakes up? What if he doesn’t wake up? What does that mean? Am I prepared for the day that he doesn’t wake up?

But he responded immediately, opening his eyes, dazed at first, a hint of alarm, then focusing. After he got his bearings and recognized who I was, I fetched his glasses from the zippered fanny pack hooked to his walker, which is set against the wall beside the small closet directly in front of his bed. Slid them onto his nose, felt my way to his ears, wiggled the glasses into place. I went to the controls at the foot of his bed, found the “up” arrow, and the bed responded by raising him into more of a sitting position.

Then I gave him the surprise without telling him what it was–a photo of his high school graduating class, scanned and reprinted on 11×17 inch photo paper.

The original is on an old sheet of newsprint, disintegrating with age along one edge, a few tears, faded, but still in fair condition. The scan added some contrast to counteract the fading, and new glossy paper seemed to overpower the years.

He took the photo, his hands shaking slightly. Held it close to his good eye, squinting, scanning it for several seconds.

“My graduation year,” he said slowly, each word distinct and just short of a sentence in itself.

His voice was soft and gravelly, as it sought traction while wading through the remnants of memory.

“Phyllis,” he said, a crooked finger pointing to the young woman front and center. “Phyllis”, he said, adding her last name in a voice to soft for me to hear. I was leaning over the bed, watching his fingers move across the surface of the photo, trying my best to hear his few words.

It wasn’t until later that I looked more closely at the woman in the photo and recognized that it was my Aunt Phyllis, who married my dad’s older brother, Bill.

He exclaims: “I’m in here too!”

He found himself near the top on the right, in a light colored shirt. You can click on the photo for a larger version. And I’ve circled him in this second version.

Then the pace of his words increased as he recognized several of his old school friends. Vincent. Again I had trouble hearing his last name. Real? Riley? Alan Johnson. Pete, his last name sinks into my dad’s fading voice. Somebody Redfern. Jack Gillespie.

“My goodness,” he says.

Time pauses.

“Son of a gun!”

Silence, except for the low rumble of traffic noise from Beretania Street just below his window, and beeps and whirs of the breathing apparatus keeping the man
behind the curtain alive in the next bed.

I ask if he can find Marjory Beck, another school friend who wrote to him when he left California in 1939. He responded with a letter describing his first month in Honolulu.

He pores over the picture again. “She was small,” he recalls, as his his voice at this moment. “She looked something like this”. He was pointing to a dark haired woman, shorter than those around her. But he doesn’t find Marjory. Whether she’s absent from the photo or from his recollection isn’t clear.

He drops his hands to his chest, looking into the distance.

“Absolutely great.”

Turning again to the photo, he says Alan Johnson was a close friend in school.

“All of a sudden he disappeared.”

“His brother, Hippo Johnson, was a monstrous man,” he says, voice still very soft and slow. “He died early. Don…Don…Donald Johnson.”

Vincent, he recalls, was a runner, more specifically a sprinter. My dad was also on the track team, where such differences in events was important.

He seems to be pleased by the connection to his memories of school.

“Super,” he whispers, savoring the memories. “Just super.”

Then he looks over at me, his face already reflecting the question that’s coming.

“How would you be able to find me in here,” he pauses, gesturing to the small space at the end of this room, his tucked away under the window overlooking Beretania Street, across from City Feed Store. You pass three other beds before reaching his end of the room, three other lives fading by degree.

He finishes the sentence: “How would you be able to find me in here…in one of my offices?”

When in doubt, he figures he’s back at the office. He worked until age 85, so office felt a lot like home. And if he doesn’t really know where he is, how do we so uncannily know where to find him?

I respond that Bonnie, my sister, must have tipped me off to where he was staying.

He complains, mildly. “I haven’t seen Bonnie in…weeks. She leaves notes, writes messages.”

I know Bonnie is there religiously every couple of days, although some days she arrives when he’s asleep. I try to explain this to him, reassure him about her presence. I think he understands, as he sits there in his office.

I remind him of the visit last weekend from Nick Beck, a former Waikiki Surf Club paddler who knew my dad back in the mid-1060s. I tell him that following his visit here, Nick was able to sit down at length with Wally Froiseth. Wally and my dad go way back to his earliest days in Honolulu.

“Terrific. Terrific.”

I don’t know where he is dredging up these superlatives. But clearly he’s feeling good right now.

He lays back, basking in the experience.

“Funny how people make friends and relationships, and hang on. Up until a certain point it means nothing, and then all of a sudden, boom! It’s a point of contact.”

I nodded.

Terrific.

My dad gets a visit from the Waikiki Surf Club past

[text]I was contacted late last week by Nick Beck, who was trying to track down my father. Nick is a paddler who was part of the Waikiki Surf Club team that won the 1966 Molokai-Oahu canoe race despite monstrous waves in the Molokai channel that swamped their canoe three times.

Beck, retired principal of Hanalei School on Kauai, who now builds and sells small outrigger canoes.

Beck is in the process of trying to replace photos of the 1966 race lost when his house and possessions were destroyed by Hurricane Iniki. He has a copy of 16mm film taken during the race, and is trying to supplement it with some of the still photos.

[text]He recalls that my dad was on the boat escorting the WSC canoe, and following the race had given him several photos showing the capsized canoe with crew clinging to it.

As I told Nick, I think I’ve seen some of those pictures in the boxes of my dad’s papers, and agreed to search for them.

In the meantime, Nick asked about visiting with my dad, now just two months short of his 96th birthday. After explaining the range of good days and bad days, memory-wise, we arranged to pay a Sunday morning visit.

When we arrived, Nick just blasted into my dad’s consciousness with an enthusiastic greeting.

“You’re wearing your Waikiki Surf Club shirt!” he exclaimed, pointing at the red logo on on my dad’s chest. My dad looked down awkwardly at his shirt, saw the logo, smiled broadly. It was a great way to start.

Nick then introduced himself, referring back to the 1966 race and his involvement with canoe racing first with the Outrigger Canoe Club, then Waikiki Surf, and later on Kauai.

By this time my dad was awake and into the conversation. They talked about the other members of that 1966 Surf Club crew, and how some of them have just kept going and going, Nick among them.

Others in the crew were Nappy Napoleon (captain), Rabbit Kekai (steersman), “Blue” Makua, Mike Tongg, and Randy Chun. Relief paddlers were Richard Henning, Jeffrey Young, and Val Ching, according to a news account at the time.

“How many times did you paddle the Molokai race?”, he asked.

Nick’s reply was quick and amazing. “About 40.”

He tried to prompt my dad about the photos, but I don’t know that I saw any flicker of real recollection.

But my dad was able to connect immediately when Nick talked about how he used to think that the paddlers were the beginning and end of the sport, and later came to realize the vital role of coaches, and of all the other people whose effort is necessary to organize and put on the events that the paddlers participate in.

My father repeated one observation several times–just how much the sport has grown and developed, and how gratifying that has been for him.

It was a great visit. When we left, my dad was beaming. So was Nick. And I certainly followed suit.

Some days are better than others, and this was one of them.