Showing posts with label dementia. Show all posts
Showing posts with label dementia. Show all posts

Thursday, August 27, 2026

Regarding Family Math

Dad, Mom, and Me, 2014

Regarding Family Math:


My father’s math is easy—1920 and it’s eighty years to 2,000. Add twenty-six and you’ve got 106, his age he would have been on his birthday two days from now.


My mother’s is a bit more tricky—1924. Take the eighty, just in as dad’s, add the twenty-six, but then subtract the four from the eighty, equaling 102. Also, consider the fact that her birthday is in December, not August, so the math will be accurate in five months.


I’ll say right here that the math keeps me sharp, as if doing this one example of math will neutralize time. I know a couple of calculations will not placate time’s hunger, but we feed the dog whatever scraps we have handy.


It’s not the birthdays but the days of their deaths that I have trouble with. I just can’t seem to be able to memorize them. I have no inclination. The death days elude me. It’s like creeping charley slowly encroaching the stones that mark their graves, blurring the edges, greening the clean lines, last year’s dried detritus muffling and cloaking the sharp etched letters.


It’s not that I’m a bad son (or uncaring brother to my younger brother and older sister, both gone), and I’m not forgetful. Perhaps I’m the rebellious one in the family, refusing to remember, refusing to die. Perhaps I’m having a hard time calculating eternity.


I think it’s best to stick with beginning numbers like birthdays and just add as we go along. The math is kinder. We can all age in grace together, a day and a year at a time. My brother would have been two years younger, my sister would have just turned four years older a week ago. My first wife coming up five years older in October if cancer had not chewed through the lifeline of her chronology.


My great-uncle Charley lived to be almost a hundred. My mother told me he walked everywhere, always active, and even walked for no good reason—he just liked to be out and about. In his brown leather boots he’d step off down the road, no feeble creeping along. Then he was struck down by a car on one of his ambles. I vaguely remember the man, sitting on a wooden porch on an old kitchen chair, the first two fingers of his right hand deeply browned by cigarette smoke. 


“You’re in trouble when you stop moving,” my mother always said.


I remember her in her hospice bed, panting out her last breaths, unmoving other than the labor of her lungs. I imagine Uncle Charley chugging down the road, his leather boots sending up poofs of dust, small explosions of effort until the big bang of his ending life. My dad begged for me to break him out of the rest home. “Let’s just take off!” he said. “There’s the door, wheel me outta here. They won’t even notice!” His hands gripped the wheelchair, ready for the big push to outdistance his dementia.


My heart pumps faster when I remember, when I do the math. The open road beckons, out and gone, the hell and gone down the road, rolling free. I stick to the math of birthdays. I find that reassuring. Every year is just a “plus one,” a simple calculation. It’s reassuring, knowing that the way math works, you can “plus one” forever. Just imagining it, maybe that’s as close as we get to eternity here on earth.


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Friday, December 26, 2014

Today My Mother Is 90 Years Old

Mom December 1927, 3 years old
"My doctor tells me that when you turn ninety, you might say or do anything, so watch out!"

That's what my mom says. She's kidding, of course. And maybe a little serious and a little nervous. Our family's experience with Dad's dementia/Alzheimer's was enough to have us tossing salt over our shoulder.

What I admire most about my mom is her quiet courage. Born in an era when it wasn't unusual for a woman to just follow her husband's orders, Mom quietly lived her independent life of traditional boundaries. She never drove a car because her eyesight was too poor. She didn't work once she started having babies. She was a stay-at-home mom, but that form only contained her independence. It did not quell it.

Today Mom is heading for a new year--as she put it, a "not so happy year." Dad is gone, but Mom still has her two boys. I'll be out to see her in a month. My brother is her live-in caregiver.

My new year's resolution is a paraphrase of a favorite expression of Mom's, to just keep moving, that when you sit down, that's when you get into trouble. I don't think of that as wearing yourself out with activity; rather, I think it means to remain vital and in accord with nature.

Sometimes when we follow our path, we have to shout the warning, "Clear the path! I'm coming through!" A variant is "Follow me or get out of the way!" My dad phrased this more bluntly: "Help or get the hell out of the way!"

When I hear my mother--five feet tall and ninety years old, blind and deaf--say such things, I hear the implacable power of nature grinding down mountains, that power that pounds seashores to sand and lifts into the air ten billion birds. I am lifted myself to keep moving, to keep to my path, to enjoy my life.

God bless you, Mom, and happy birthday.

Copyright 2014 by Thomas L. Kepler, all rights reserved

Thursday, December 4, 2014

My Dad Never Forgot Mom, Even with Alzheimer's

In the time before my dad passed away, he said he was "tired and going home." Often he wouldn't remember where home was and asked where Mom was living, to reassure himself that he had it right in his head.

When Dad said he was going home, did he mean home where Mom lives, or did he mean Home, going through the pearly gates? You know, I don't think it really matters or makes any difference.

My wife has been traveling for a week, visiting family, and I have been doing a good job of being efficient at work, of eating well and keeping the house clean, of generally keeping it together. Yet behind that checklist efficiency is a sense of just waiting, of biding time until we are together again. Then I'll really start living again.

I guess that's what marriage means, a unity. True, physical proximity shouldn't be absolutely necessary, but the whole idea of marriage, it seems to be, has something to do with physical proximity. Not being together makes this more clear to me. We learn this as kids. As we grow older, we don't buy a winter coat and then leave it on the hanger when we go outside in January. There's a certain congruity.

The importance of establishing a sense of unity is central to us all. I think it's why so many snapshots are taken--a desire to establish some enduring connection with geography, people, and experience. It's why Dorothy clicked her red shoes together and said, "There's no place like home." It's why Vladimir and Estragon wait and wait for a guy named Godot. It's why when my dad was in the nursing home, his most frequent question was "when am I going home?"

We want to be in that place where we belong, where we are "in the know" and accepted. We don't want to be a stranger . . . especially in a strange land. We want unity. We are conscious atoms with atavistic memories of the Unified Field. My parents were married and together sixty-eight years. That definitely created a gravity well in the fabric of time and space, an attraction, an aching in the bones.

I'm heading to the airport now to bring my wife home. It is altogether fitting and proper that I do this. But, in a larger sense (and thank you, Abe), we will be recollecting our unity, reaffirming our unity, and maybe just enjoying the pedestrian pleasure of being together. Our small universe is expanding, and the infinite universe is collapsing upon itself. If it's not one thing, it's the other, or more likely it's only one thing, individual and cosmic, husband married to wife, duality become One, and pretty darn happy about the whole situation.

Copyright 2014 by Thomas L. Kepler

Thursday, November 20, 2014

Another Day Out with Mom #2: Mom and Dad's Honeymoon


"We traveled around in Lake County on our honeymoon, and my dad stayed at our place to make sure nothing was stolen," Mom says. Before age set in, before the Alzheimer's/dementia, before the stroke, Dad drove some sweet rigs down the highway, Mom sitting beside him. Some of those rides we kids also rode along on trips to the ocean or trips to the Sierra Nevadas.

The photo above was the rig Dad pulled on Mom and Dad's honeymoon. Looks like a great set-up! I believe Mom said there was a cooking station in the back and a bed before it, but it took some arranging to get it all set.

Mom had lived some in Lake County as a little girl. I later lived in the area at Cobb Mountain in my early 20's. Mom and Dad were married in August, so it must have been hot for camping, but the mountains must have provided some coolness from the elevation.

I love the convertible Dad was driving. Anybody know the make and model? Remember that Mom never drove because of her poor eyesight.

This was in 1946. I have this picture in my mind: Mom and Dad newly married, their family waving them off from their new home, the top down, the sun bright and hopeful. 

I'll ask Mom about it, though. It's a wonderful story--not much money, so that's why they camped. The whole world ahead of them.

We shouldn't just count our blessings; we should savor them, savor our moments of glory. 

It's like the words of the Navaho Night Chant:
May it be beautiful before me.
May it be beautiful behind me.
May it be beautiful below me.
May it be beautiful above me.
May it be beautiful all around me.
In beauty it is finished.
In beauty it is finished.
May every day of our life be a beautiful honeymoon, the highway open before us and calling.

This blog post was inspired by Mom's narration from A Day Out with Mom, from the chapter entitled "Engagement and Marriage."

Copyright 2014 by Thomas L. Kepler, all rights reserved
 

Saturday, November 15, 2014

Days Away from My Computer Were Days Out with Mom

Finally my blog is functioning properly again, after about two months of my URL not connecting properly. It was not time lost, though, because I spent those days out with my mom. I spent those days finishing my book A Day Out with Mom, now available online.

Yes, I compiled the book, polished and established continuity and unity, received feedback from beta readers, and fixed formatting and editing errors. I even asked Mom for feedback and was given a few clarifications and additions. That was fun--reading chapters to her and having her comment on them!

Now the book is available at the CreateSpace store, on Amazon, and Kindle. (It may take a day or two for the Kindle version to be ready.) Of these stores, The CreateSpace store (as printer) provides the best royalties for me, so please consider that first if buying a paper copy.
I recently had a local artist and his wife say this about my book:
"There are many, many Baby Boomers out there with elderly parents. Your book will speak to them."
It was a funny thing living with my parents as an adult for over seven months. Yes, I had the priceless opportunity to get to know them again. In a strange but real way, though, I also got to see myself in them. That was a little strange and a little wonderful. seeing those powerful beginnings of who I am today.

I hope you choose to spend a day out with Mom, too. She's quite a character.

Copyright 2014 by Thomas L. Kepler, all rights reserved

Wednesday, August 20, 2014

A Day Out with Mom #29: 68th Wedding Anniversary

"Hi, Mom. Happy 68th wedding anniversary!"

"Thank you. I don't have my hearing aid in, so I'm not hearing so good."

"That's OK. I just wanted to call."

"I vacuumed the rug today. It's your dad's and my wedding anniversary, but the house still has to be clean."

"That's one thing you and Dad taught me--to be clean."

"Remember that floor buffer for the hardwood floor we had out on Plumas Avenue? Your dad got that for one of our wedding anniversaries. He was always so happy when he could do something like that for me. He got us what we needed. Do you remember the time I buffed the floor and you sat on top of the buffer? Back and forth, back and forth you went!"

"I remember how shiny the floors always were. It was a long time ago."

"Over fifty years. We only did it for a bit so we wouldn't burn out the motor. We had many wonderful anniversaries together, your dad and me. I liked your card. Dad never had a Thunderbird for a car, but he had a friend who had one."

"I liked how the couple were kissing--actually how the wife was leaning over and kissing the husband."

"Everybody deserves a kiss now and then. We should appreciate the times we've had. I'm lucky. I've had good men in my life. My dad was a good man. My brother was, too, although his health isn't good now. Your dad was a good man, and now you two boys help me and your dad."

"We're lucky to have you."

"We're going to see Dad tomorrow. He weighs just 116 pounds. I don't know how much longer he's going to be with us."

"Give him a kiss for me."

"I will. He forgets a lot--but he doesn't forget me and I don't forget him."

"You've both had a good life."

"Yes, we have, many good times. When I'm sad, I'm sad, but I can still remember the good times. We all have many reasons for being happy. We have to remember that. Now, you go and kiss your wife and let her kiss you back."

"Just like in the card I sent."

"Just like that! We make ourselves happy by making someone else happy. It's better than sunshine. It's like the song: 'You are my sunshine . . .'"

"'You make me happy, we skies are grey . . .' That's what I want, Mom. When the lights go out, I want to remember the sunshine."

"And those you love."

"All those who bring the sunshine."


Copyright 2014 by Thomas L. Kepler, all rights reserved

Friday, July 4, 2014

A Day Out with Mom #27: The Lunchbox, Hard Hat, Cookie Story

That cookie good? You always liked cookies.

When you were little, four or five, I worked up the Feather River canyon when they were building the power houses. Every morning I'd get up early and leave, and your mom would cook breakfast and pack my lunch. Remember my lunch box, the black one with the brass rod that slips through the eyes to lock it shut, the one where the Thermos fits into the top part? We still got it in the shop? Imagine that . . . it's over fifty years old!

So I'd go to work every day, that long drive, eat my lunch at break time. It was hard work. For a while I drove the explosives truck, delivering the powder to the power house and road and tunnel sites. Your grandpa talked me into getting another job, though, one less dangerous. I drove a "Uke" for a long time, a great big dump truck, it was.

And then I'd come home and there you were at the door, waiting for your dad. You'd put on my hard hard and take my lunch box, every day. That hard hat would fit down almost to your shoulders, it seemed, but you'd tip it back and sit on the floor, slide out that brass locking rod, open the lunch box, sort through the wax paper, and find a cookie. Then you'd grin up at me and bite into that cookie.

I'll tell ya, no matter how hungry I was at lunchtime, I'd never eat that cookie, no matter what. Once was enough to come home and see you rip open that lunchbox and not find that cookie. The look on your face!

No matter how hungry I was, I'd leave that cookie for you. It wasn't the only thing I came home for, but it sure as hell was one of 'em. Seeing you eating that cookie just brings back the memories.

Copyright 2014 by Thomas L. Kepler, all rights reserved

Saturday, April 19, 2014

A Day Out with Mom #26: an ideal visit

As Mom an I enter Dad's room, a physical therapist is getting him into his wheelchair.

"I need you to sit up and swing your legs to the edge of the bed. No, don't grab onto me and pull. I'll push your back some if you need it."

I can see the method being used that was discussed last week in the three-month review: to emphasize those movements and modalities needed to live in a wheelchair.

"On which side of the bed do you want your wheelchair, the head or the foot?"

"It doesn't matter," Dad responds. The head-side is chosen by the therapist, who is a middle-age man, stocky and strong.

"Now scoot more to the middle of the bed. That's it. More. Now scoot more out toward me to the edge of the bed."

Dad follows the instructions. I can see how thin his legs are, but he does the job and takes satisfaction in doing it.

"I'm going to put this safety strap around your waist before we move to the wheelchair."

The therapist removes the four-inch nylon strap from around his waist and secures it to Dad, creating a strong gripping point for himself. Making sure Dad's feet are correctly positioned, the therapist reviews for Dad the procedure: Dad will stand and swing himself over to the chair and then sit.

With a pull to help Dad stand, the transfer begins, ending with Dad sitting down on the narrow end of the wheelchair's arm, his swing to the chair too short.

"Stand again, and we'll swing you on down into the seat," and Dad slips down into the chair's seat. "Are you OK? That arm is pretty narrow." Dad affirms he's OK, but his frame is so emaciated, I wonder. I suppose his continence pad acts as a buffer.

"I want to see how well you can move your wheelchair. Let's move out into the hall. You can use either your feet or your hands."

Dad uses mostly his hands and arms, lifting his feet. We move toward the inner courtyard. The therapist leaves us at the door. It's a wonderful spring mid-morning, no wind, plenty of sunshine, and flowers blossoming and green grass.

We sit in the sunshine. I return to Dad's room to get his baseball cap. I'm asked to sign a form at the nurses' station saying that Dad's bed has been placed with one side against the wall to lessen the chance of his falling.

"Ahh, the sun soaks right through you," Dad says as I grab chairs for Mom and me. I snap a few photos. Then an aide snaps a few that include me. The bright light bothers Mom, so we move to the edge of the shelter so that Mom and I can sit in the shade and Dad can sit in sunlight.

We talk. Mostly I talk, actually, and Dad responds with nods and short comments. I move him a little into the shade and then a bit more into the sunlight a little later. Dad scratches at his back and shoulders. Mom listens and interacts as best she can with her deafness.

"Everything's itching. The sun's getting everything moving."

"Do you want to be more in the shade?"

"No, the sun feels good." Dad smiles a small, satisfied smile, one that never leaves his face.

He drifts some into a sleepy haze of warmth and comfort. I keep talking to focus his attention and keep him awake. He asks the usual questions: where is Mom living, how is the car doing, how much money is in the bank. I talk about how my brother and I have painted the mobile home, how the roses are blossoming, and how my brother has not come this time because he is painting the six-foot decorative metal windmill that Dad erected in the front yard years ago: yellow and green, Iowa colors. Dad had bought the windmill on a trip to visit me in Iowa years ago. I can tell as I explain that he does not remember.

We have a long stay, an hour and a half. Dad does not want a drink of water. He is a little tired, so I push him when we go back into the facility. Of the four doors into the building, Dad knows one connects to the physical therapy room but has the particular door wrong. When we enter the doorway closest to his room, Dad says, "This is where I eat." He has trouble keeping his feet up as I push him along. The therapists remove the foot platforms on the wheelchairs to encourage more mobility. I move slowly because Dad's feet keep dropping to the floor where they can then pinch under the chair.

We don't return all the way to Dad's room. It is noon and soon lunchtime, so the head of the nurse's station backs Dad against the wall. "You can watch us work here for a bit and make sure we're doing everything OK," she jokes, moving up closely to Dad as she speaks.

Mom and Dad kiss and tell one another their love. Some sadness always is included in the parting, but there are no tears, is no anger. We leave. Mom has talked some. Dad has talked some. I have gladly done my song and dance, entertaining and reporting.

I wonder how it works when I am gone and my brother is in my place--I the English teacher and my brother the carpenter and construction worker, especially since my dad's dementia tends to slide toward negativity with my brother. I suppose they get by. I know I've told my brother to just keep his distance if necessary. When he and I have come together, my brother brings roses to the staff. It's a good strategy, I think.

Today has been pretty much a perfect visit. Dad's frailty is evident, yet it is also evident that the professional care is keeping him safe and as engaged as Dad is capable. I saw on the wall that a patients' family survey assigned the facility two stars out of five for its work. I think that's rather low from what I've seen. Most of Dad's quality of life is determined, as far as I can see, by the self-imposed boundaries of his mental and physical frailty. Certainly having someone--or several support staff--with Dad twenty-four hours a day would be preferable to keep him stimulated, but such an arrangement is possible only for the most affluent.

My feeling that two stars rather than three--I think the facility is doing and OK job--in part is determined by the grieving of families involved. We would all like the situation to be better, something more than "brutal," as Dad put it. We structure our own world, and Dad has spent a life often judging relationships as being a glass half empty. He can't help himself now.

In our weakness, our frailties and challenges become more evident and significant. It is for us, the stronger, to understand, to adapt, to cope. I give myself the freedom to grieve, the freedom to sometimes feel human anger, the freedom to feel glad that I am still healthy. Somebody's got to be the functioning adult. Thank God I've still got it in me. I intend to use it till the cows come home.

Copyright 2014 by Thomas L. Kepler, all rights reserved

Wednesday, April 16, 2014

A Day Out with Mom #25: brutal is the dying of the light

"It's brutal," Dad says, referring to his residential care residency.

He is lying in his bed, alone, covered with a blue institutional thermal blanket.

I have just come from Dad's regular three-month review with the review team. His weight has dropped another two pounds. He is eating about 38% of his meals and at about 65% capacity in his ability to move from bed to wheelchair or from wheelchair to bathroom facility.

"I just don't know why I ended up in this place."

I tell Dad once again the story of his pneumonia and the collapse of his strength. I tell him that his strength has not come back, even with physical therapy. He is too weak to take care of himself, I tell him.

I take the chance to tell him the truth. Maybe if I can tell him--even as compassionately as possible--enough times, he will be able to remember and accept and adjust.

"Being old can be a misery," I tell him.

"Yes, it can," Dad says.

"Actually, being young can be a misery, too."

Dad laughs. "That's true."

"I guess you've just got to have the right attitude."

I go on to tell him we'd love to have him home, but we've got to keep everybody safe. It's nobody's fault. He's just old and weak.

"Yeah, ya get that way with time. Sneaks up on ya."

He thanks me for coming and is so sincere. I tell him I'm glad to help in any way I can, and I can hear the sincerity in my voice, too.

I acceptance in both our voices.

*     *     *

As I am writing this, Mom has woken and has come and sat beside me on the sofa. She sits to my right so I can speak into her left ear, the one that still retains 12.5% hearing capacity, boosted to about 25% by her hearing aid.

We are talking about Dad and she asks if he said he wants to come home. "We had an honest conversation," I say.

"This has been so hard on me," she says. "It's hard on my heart. Who knows how long any of us will last? They've changed my heart medicine."

I remember Mom quoting the doctor she worked with when she was young: "You're born, you live, you die."

All we can do is choose what seems the best path and dance our footsteps dusty as often as we possibly can.

*     *     *

It is evening at home. My brother and Mom are asleep, and I am watching a movie.

The phone rings and I answer it.

Dad says, "Come and get me."

"We can't bring you home, Dad. You're too weak."

"I'm not too weak, goddammit. Now come and get me." I hear the rage and hang up.

Mom has woken, coming into the kitchen where I am with the phone. "Who is it?"

I lie: "Someone trying to sell something." She wanders back to bed, satisfied.

Or maybe I'm not lying. Maybe it wasn't Dad cursing me but Somebody Else. It wasn't a good ending for Dad and lousy closure for me, but Mom was spared some hurt. One out of three ain't bad, even if we're not playing baseball.

*     *     *

I slip in to see Dad this morning and wake him from sleep. He asks me to come another day, too let him sleep. There is no indication in his voice of any remembrance of last night's tirade.

Maybe it was Somebody Else. 

Copyright 2014 by Thomas L. Kepler, all rights reserved

Saturday, April 12, 2014

A Day Out with Mom #24: safe and sound, for now

What's going to happen, I thought, when Mom wakes Dad up?

He lies in bed, snoring after his trip to the breakfast room and back. A couple of shakes and "Harold, Harold?" and Dad wakes up, his cap now cockeyed on his head, his eyes slowly focusing.

We're lucky--he's feeling amiable today.

"Tom's here, Harold," Mom says. "He got in last night on the train."

That leads to train stories for Dad and sets the pace for today's visit. I notice that when I stop talking, Dad's eyes begin to close as he fades back to sleep. Therefore, I have to be lively and entertaining, joking and witty. I sit beside him on the bed that has been lowered close to the floor so that if Dad falls, the possibility of injuries is lessened. He now has an alarm so that if he gets out of bed by himself, the front desk is alerted. He's already fallen twice without injury.

I talk about spring, describing the fresh green of the grass and trees, the bright yellow of California poppies. Dad begins to fade, so I throw in the contrast of Iowa, the trees still bare, the grass still brown, and frost still riming shingles some mornings. Dad begins to fade. I talk bicycles, gardening, then settle on coffee. Dad has two cups, you betchya, for breakfast, and so does Mom, it so happens.

I grab Dad's leg and shake it affectionately a few times. It feels so emaciated--probably both from lack of eating and lack of exercise. Dad was recently in the hospital for a few days because he refused to eat and drink. He was intraveniously hydrated and then sent back to his extended care unit. He has also recently said he doesn't want to engage in physical therapy. "Well, he's tired," Mom says, and I can't argue with that.

But, as Dad was quick to say not so long ago, he's in pretty good shape, considering the shape he's in. He's about two months away from his ninety-fourth birthday.

After about an hour, I tell Dad we're going to go and let him nap. "Glad you came," he says, and he means it.

I'm glad, too. I see the rewards of the last year's efforts. My father and mother are nearing the end of their life cycles, but both are cared for--my dad by a professional care facility, my mother by my brother.

I don't know what tomorrow will bring, but I'm happy. Mom and Dad are safe and--considering the shape they're in--in pretty good shape. That I can take some credit is a source of great satisfaction and relief for me. I think Dad would agree with me: considering the situation I I've been confronted with, I've done a pretty good job confronting it.

Copyright 2014 by Thomas L. Kepler, all rights reserved

Saturday, December 7, 2013

A Day Out with Mom #23: Adjusting to new realities

"Hello?" Mom answers the phone. "I can't hear. Is this Tom?"

"Hi, Mom. How are you?"

"I can't hear. Is this Tom?"

My brother picks up the living room extension. "Mom, you didn't have to pick up in the bedroom. I was heading for the living room phone."

"I can't hear, Pat."

"I know, Mom," Pat hollers. "Come out here, and I'll put you on the amplified phone."

"I've got laryngitis and went to the doctor," Mom says. "I've been resting."

I tell her that's always best.

"Dad tried to stand on his own and fell," she adds, "but he's OK."

"Were the aides were with him?"

"No, when he was in his room alone."

I tell Mom I'm glad Dad's OK and think that his falling helps reinforce Mom's understanding that Dad is too feeble to come home. We are lucky to have that reinforcement without the pain and suffering of injury.

Grocery shopping and trips to the doctor are going well. The household routine is going well. My mom and brother are working together--probably even better than before my brother broke his leg.

I remember when I first arrived at my parents' mobile home seven months ago--twenty hours after the phone call from the social worker. Three strangers were in the mobile home, my parents sitting with these strangers, my brother in the hospital. Deer caught in the headlights, shocked by the sudden turn on events, at the mercy of the world--that was my first impression and turned out to be an accurate one. The look of relief on the faces of the social workers was my second impression.

After a stay of six and a half months with my family in California, I am now helping my family via internet and phone, also planning on regular visits every three or four months.

It's working and will continue working right up until the moment it stops working--which can be at any moment. I suppose that's the way it is every moment of our lives. The boundaries of "what works" tighten with infirmity, though. My parents cannot manage their lives alone. My brother and I provide "the Kepler boys" assistance.

It isn't always easy, but I know it is much more difficult for many others--children and parents. I'm good with "it's working for now."

It's important to find the good in every moment.

Right now, mine is to hear my mother answer the phone with her independent/dependent response: "Hello? I can't hear. Is this Tom?"

Blind, deaf, and a few weeks away from eighty-nine years, Mom still puts the "S" in spunk.

Copyright 2013 by Thomas L. Kepler, all rights reserved

Monday, November 4, 2013

A Day Out with Mom #22: cycles

Today was a good day with Dad. It followed a bad day, and the day before that was just okay. Cycles . . .

The trick is not to feel the cycles can be changed. Rather, we have to recognize where in the cycle we are and deal with it. A bad day? Re-direct Dad's attention, and if the feeling becomes too intensely aggressive, leave early. An okay day? Enjoy the good moments and cut the visit short so fatigue won't turn the visit ugly. A good day? Enjoy, provide honest information, and keep a close eye to Dad's energy level.

"I can't see all that well, and I'm not strong enough to take care of you."

"The pneumonia knocked you back, and it wouldn't be safe to have you come home now."

"Your memory's not so good now. You forget a lot."

"A lot of people ninety-three years old can't take care of themselves."

Dad even comes up with statements like this himself. "Ninety-three's pretty old."

The process now is to recognize the particular part of the cycle and then to work with the reality of the day, whether it's a rant, sleep, memory loss, or intelligent conversation. Then, of course, all may be experienced within an hour's visit.

Mom is still grieving the loss of the cycle in her life when she lived with Dad rather than conducted visits. She--through repetition--is getting better at telling Dad she can't take care of him.

The sons are better at re-directing: "Oh, we can't ask the doctor to take you home today. It's the weekend, and decisions like that aren't made on the weekends," which works well until his roommate says, "Oh, I went home once on a weekend."

I've gotten used to making strong statements. "Dad will never come home." " You have to care for him like a nurse first and like a wife next." "He just wants what he wants, like a child."

We can always hope but must act on realistic assessment.

The result of six months of caregiving, paperwork, and teaching is that I am coming home back to Iowa. I'll be back to see Mom, Dad, and my brother in six weeks or so if all goes well, but my efforts to create a sustainable environment are at this time successful.

I've been the best son and brother I could be. Now I'll go home and be the best husband, father, and grandfather I can be. And somewhere in all this, I'll also try to be good to myself.

Copyright 2013 by Thomas L. Kepler, all rights reserved

Tuesday, September 10, 2013

A Day Out with Mom #20: 4 visits

Visit 1

Dad is lying on his bed, dress including a warm-up jacket and trucking cap. He looks up as we enter and I pull up a chair to bedside for Mom. I sit against the wall, behind Mom and mostly out of sight.

Mom and Dad talk quietly, she answering questions regarding where she lives now, how the car is running, and how are financial affairs. The discussion is more that of reminding Dad of the basics; there are no detailed explanations.

"When can I go home with you?" Dad asks, and Mom explains that he is weak and she can't take care of him. He will have to stay for a while longer. Dad raises no argument.

After a half hour, Dad begins to get more agitated, saying he wants to go home. Mom kisses him and says she has to go and will come back later. We leave before things are too tense, no one really happy but no overwhelming moments either.

Visit 2

"Hello, connect me with the nurses' station, please."

"Yes? This is the nurses' station."

"Hi, this is Tom Kepler. I'm calling to see if this is a good time for my mom and me to visit Harold. Is he in a good mood today?"

After a check comes the reply, "Today would not be a good day. He's looking to leave and has 'that look' about him."

"OK, thank you. We'll try again tomorrow."

Visit 3

Dad is sleeping when we enter his room. Mom approaches and gently wakes him.

"Hello, Harold. We came to visit. How are you?" She touches his arm lightly and they kiss.

"Glad you could come," Dad says.

"Do you want to talk, or are you sleepy?"

"I'm pretty sleepy."

"You'd like us to let you sleep?"

"I think so, but thanks for coming."

"OK, you rest, and make sure you eat your lunch."

Visit 4

Dad is lying in bed awake, fully dressed with cap, covered by a blanket. He stares at the ceiling.

As we enter, he looks at us. "Hi, I was wondering if you'd forgotten about me."

"Oh, we love you, Harold. We would never forget you."

Mom sits in her chair, and I move to the chair by the wall behind her.

They talk, and Dad has more energy today and is more lucid. There is no real focus to the conversation, but they are together for about ninety minutes. About every 7 minutes on the average, Dad asks where we live now, but there is more ease to the questions. He nods as Mom verifies our location.

I join the conversation later on, sitting on the edge of Dad's bed. At several points, we remind him that the "old place" is not where we live, that he sold it over fifty years ago, and that my brother is not "Steve," a high school friend. Dad ponders these facts that he had wrong.

"You lie here and just think and dream. I'm not sure what's real anymore."

The conversation is sweet, though, and lasts until the aide comes to get Dad up for lunch. We say our good-byes, promise to be back, and ease out the door as the aide helps Dad into his wheelchair.

Mom is happy, having talked to Dad and left with a warm good-bye.

"I'd like him to come home, though, if he gets stronger and my heart gets better."

That's a wish worth having. I agree, Mom taking my arm as we slowly make our way outside and into the light of day.

Copyright 2013 by Thomas L. Kepler, all rights reserved

Thursday, August 29, 2013

A Day Out with Mom #18: anger and demons

"You take care of my son," your grandmother said to me when I married your dad. And then years later she told me, "I think you're the only one who really understands Harold." I think she was right. Your dad wasn't an easy man to understand. He had his demons, you could say.

When he was in the airplane wreck in Alaska, he was in a body cast for over a year. He worked with checking out the instruments in the planes, and he was doing that with some Russian women pilots. They spoke no English. They wrecked the plane and threw Dad all over the inside, up and down. He's never liked being kept down ever since. I think that's why he rips his IV's out when he's in the hospital. That's why he fights with the nurses and doctors to get out. That's why he has unhappy times in the rest home.

Once when you were little, he had terrible pain in his back and went to the VA hospital to see about it. I don't know what happened, but he didn't get help. He came home so angry that he took his uniform and dogtags, put them in a pile and burned them. Then he took the ashes and the tags and buttons and threw all that away. Later, he was mad at me and said I'd given his dogtags to you kids and we'd lost them. I had to tell him about what he'd done. He didn't even remember. He'd have spells, and I was glad when we got our first TV because he could sit and relax.

Yes, he's had this great anger his whole life. You didn't see it so much because you were quiet and wouldn't argue. And you read. It isn't easy to argue with someone who's got his nose stuck in a book. Your aunt once told me, "My dad was a good father and teacher, but he was never very nice to Harold." When your dad was little and learning his times tables, your grandpa would slap him on the back if he got it wrong. He was a hard man sometimes. Grandma was quiet like me but when your grandpa and dad and his brother got going, she'd just say, "All right, I've had enough. You all just stop this right now," and they would.

I had to do the same thing with your dad early on. I told him, "I won't live like this, and if you can't control your temper, you'll just have to go somewhere else. I'm not going to be married and live like this." He learned that he might be angry about other people and things, but he couldn't bring that anger home. Oh, he'd complain and talk about it, but he wouldn't be angry to us because of other things. That's how I'd work with your dad, especially when you kids were young.

I remember, though, when you were sixteen and went to that party your job had at the lake--with the boss's son who bought a keg! You came home drunk and went to your room. Your Uncle Harry and Dad and I were in the patio talking when you came home. Dad went in to see how things had gone and realized you were drunk. He said something, and you screamed and hollered and told him off. Dad didn't know what to do, you were always so quiet, so we decided to let you sleep it off. You were home safe, anyway. Thank God for that! I remember my brother trying not to smile and then saying he'd better be going. I bet he laughed all the way home, and you were sick like a dog the next day, its own punishment.

Your brother and sister didn't have it so easy, though. Your sister was a lot like your father. She'd argue with him and they'd go round and round. That's why she quit high school in the last half of her senior year. She wasn't going to take it anymore, she said. It was both their fault. They just couldn't get along until many years later. We helped her, though, and loved her.

Pat was quiet and didn't like to argue. He'd take it all inside. Your sister would tell your brother when he was little, "Now, talk and I'll give you some food." He'd just look at her and not say a word. Once Pat told me that at a Little League game he made an error. Dad told him, "You lost us the game." Pat just went home and ran down to the corner of our lot where you boys had made a little fort. He stayed there for a long time. I never knew that for many years. I don't know why your dad said that or did the things he did. He was a loving man who did so much for you kids--took you camping, coached Little League, helped with Cub Scouts. He had these spells his whole life. Sometimes we're in control, sometimes not as much as we'd like, looking back later. Your grandpa was like that some, too--high-spirited, you might say.

He did things I didn't agree with--come home with a new car or something. I never said anything, though. My job was to take care of the house and you kids--and Dad. I did that, and Dad always gave me what I needed, no matter how hard he had to work or how many jobs he had to have.

When we were married and had your sister, the hospital would call and ask me to work. They wanted me to work three days a week. Your dad was gone on the road, though, driving truck. My parents would come down from Greenville to stay with me, especially when I had all three of you. Your Grandma Kepler told me, "You've got three children, Betty. You let Harold take care of the money. You've got enough to do."

Your dad would change jobs pretty often. He'd get mad at something, say someone wasn't being fair, and up and leave. He could always get a job as a mechanic because he was so good. All the shops also knew that he'd bring his own customers with him, people who would only let Harold work on their cars. I think that was why he was never a shop manager, something he always wanted. He had the know-how to figure out what was wrong with the car. He just couldn't get along with people that well.

He liked to go camping up in the mountains. It was quiet there, and with just us it was easy and relaxing. I think that's why he's so angry now--too many people. And when you get old and tired, things you could hide or hold back when you were younger just slip out. It's like you're too slow to stop them.

You'd better watch out! I'm going to be ninety in a little over a year, you know. Dad's doctor says that when you hit ninety, you might say and do anything. I feel sorry for your dad, but there were some things that he never could take. I helped him all these years, and now he has to do some things on his own, just when it's hardest for him to do.

That's not fair. I think and think about how to fix it, but I can't think of anything to do. It's just the way it is. Sometimes life is like that.

Copyright 2013 by Thomas L. Kepler, all rights reserved

Tuesday, August 27, 2013

A Day Out with Mom #17: games with Dad and the guys

Six miles to visit my father was my morning bike ride today. Dad was sitting in the dining room waiting for breakfast and drinking coffee with two other men.

"Hi, Dad," I say and introduce myself to the men, Ralph and Glen. There is small talk from the men and not much talk from Dad, but he nods at appropriate times, indicating that he's following along.

I see on a bookshelf a game my students sometimes play that involves stacking blocks of wood that look like little railroad ties. I get the game and sit down, taking out the pieces of wood. First I line some up and then knock them over like dominoes. The men watch as I explain how the kids play with the pieces.

"What age you teach?" Glen asks.

"Grades seven to twelve."

"And twelfth graders do this?"

"They'll do anything if it means they don't have to work." All the men knowingly nod--remembering, I'm sure.

I stack the wood up to play the basic game: four one way side by side and then four the next way, back and forth in a rising stack. The object is to remove a piece on a lower stack, placing it on top. I begin the game and then invite the men to try it.

"I'm too shaky," says Ralph. "I'd knock them over."

"They always eventually fall," I say, "especially when there's a bunch of students stomping around on the floor." A few smiles at the thought of so much energy.

I remove and stack while the men watch. During the conversation I share why I'm here with my parents, that I'm from Iowa and have been here for four months and have two more before I can return home.

"A lot of families wouldn't do that," Ralph says.

"Well, my parents helped me when I was young, and now I'm helping them." Dad smiles and nods.

"Count those tiers," Ralph says.

"Twenty-three," I say, "and they're all each of two pieces. I can't do anymore unless I have a stack of just one."

I try this, and--lo and behold--I do it, balance a portion of the stack on just one piece. Trying for a second, the stack falls. We all laugh, and I clean up.

"Now, be sure to act like you can do this all the time," Glen says.

"I'll be sure to try some other day so that you'll all see today was just dumb luck to stack them so high."

I put the game away and then return. Breakfast is being served.

"I've got to go buy some bread and jam now. I enjoyed meeting you all," I say to the men. "I enjoyed today," I say to Dad.

"Thanks for coming," Dad says, and I leave. I don't know if Dad will remember my coming even fifteen minutes after the time I leave. I'll remember, though. It was a good day, and it warmed my heart to see my dad with a peaceful smile on his face.

Copyright 2013 by Thomas L. Kepler, all rights reserved

A Day Out with Mom #16: clutching at realizations

"The days are so long," my dad tells me. His eyes are red and tear-filled. His lips tremble.

His time with Mom and me today is a mixture of absolute clarity and confusion. He is calm, yet there is also a presence of sadness and loss that I cannot alleviate or ignore. I feel sad and guilty, helpless and yet happy that today we can share an actual conversation of content.

We continue our rocking horse conversation, the emotional content in clear focus: "All these old people sitting in their wheelchairs slumped forward, sleeping, doing nothing," and the confused intellect: "Are we still at the old place?" or as when I first saw Dad, holding the hand of an older patient, "Is this woman my wife?"

I reply, "No, Dad, that's a lady that grabs people who get too close and holds their hand. She grabbed Mom's the other day." The woman's actions make so much sense to me--touch another person, make contact.

Dad tells my mother, "I've been going all over this place trying to find you."

"I just wanted to cry," Mom tells me later, and then says, "I do cry at night, cry and cry."

"Today," I tell her, "Dad said, 'I wish I was strong enough to come home.'"

"He said that?"

"Yes. He wanted to come home but knew he was too weak. Today he knew."

This knowledge adds solace to sadness as we sit in the inner courtyard, not saying much. I trim Dad's fingernails and toenails and then shave him, this time he being unable to use his electric shaver. Mom reaches over to hug Dad, pats his hand, feels his fresh-shaven cheek and then kisses it. A little sad and a little quiet, we are together.

Dad had been quietly crying when when I first saw him this morning and he had asked me if the woman clutching his hand were Mom. He was relieved when he was told that it wasn't. He was relieved to see me, that I was there with him. Then, an aide releasing the woman's hand, Dad had helped me turn the wheelchair to take him to Mom.

There is no cure for old age. "When I was a nurse over sixty-five years ago," Mom says, "Dr. Craviotta said, 'You're born, you live, you die. That's what life is.' We have to accept that and make the most of it."

When I was a baby, my parents helped me learn to walk, guiding my first footsteps down the path. Now they teach me--one blind and using my arm for support, the other in a wheelchair--how to navigate that same path as it turns vague and overgrown. There is no path without wilderness. Sojourners all, moving and unmoving, we get along as best we can.

Copyright 2013 by Thomas L. Kepler

Tuesday, August 13, 2013

A Day Out with Mom #13: Plan B with Dad

We arrive at the nursing home and find Dad gone. "Yeah, he's been all over this morning," says his roommate. "Trying to get away from those 'asshole' nurses."

"He's getting stronger, wheeling himself around like that," Mom says, not hearing the last part. I'm not having a good feeling about the morning.

With Mom on my arm to guide and support her, we begin to cruise the halls. Turning a corner, we see Dad being wheeled back near the station by an aide.

"Hey, there you are, Dad!" I say.

"All right, let's go right now," Dad says.

He has that intense, strained, wild-eyed look that we are seeing too often. I say nothing, trying to provide no triggers for aggression or abusive behavior.

Eyes staring, Dad takes me in, my silence and all, and says, "You shut up, goddamnit!" I continue to say nothing. "All right, to hell with you," he continues, turning his wheelchair and rolling away down the hall.

"What should we do?" Mom asks.

"Let's wait here. Maybe he'll calm down if we don't follow him."

He storms down the hall, as best he can, his head and neck tensely snapping left and right as he studies his perimeter. His arm-strokes on the wheels propel him fairly quickly, considering his feebleness. He doesn't seem so feeble now, his actions flavored with a quick abruptness.

As he enters some patient's room, an aide at the station moves him out, Dad's hands gripping the armrests, his head still snapping left and right.

"Let's go to his room and meet him there," I tell Mom.

Two more aides meet us in his room as we arrive, Dad close behind, pushed by a fourth aide.

"Let's go! Goddamnit, you assholes can't keep me here," Dad yells at the aides.

"Harold, you can't talk to them like that. They're trying to help you," Mom says.

"You're my wife. Take me home."

"When you're stronger."

"Dad, Mom could hurt herself caring for you with her heart."

"There's nothing wrong with my wife. You shut the hell up!"

He lunges at me with an expression I can only describe as maniacal. I step out of reach as the aides grab and stabalize his wheelchair, keeping it motionless.

Mom steps forward. "I love you." She leans and they kiss.

"And I love you," Dad says. He reaches for her, and my heart leaps in two directions.

A nurse leans to him. "Let's lie you down to rest. Maybe you'll feel stronger after a rest."

"Don't tell me what to do!"

"We need to go," I tell Mom. "Maybe he will settle down after we're gone."

We enter and move down the hall. Mom is crying. "I don't know what to do," she says.

"We need to call before we come from now on," I tell her. "If Dad's upset, we can call again in the afternoon to see how he is."

"I don't know what to do."

"We'll call later, Mom."

"The stroke did of lot of it."

"We'll just do what we can."

That's the plan now, Plan B--call before visiting. I'll take Mom to visit Dad anytime, but Somebody Else we plan to avoid.

Addendum: Today we called and were told that Dad was sitting outside. When we showed up, he was wild again, saying I was ruining his marriage. Then he reached out to hit me. Mom and I left within minutes.

I told Mom we have to treat the situation like the weather--when it's nice, we enjoy it; when it's stormy, we get away from it and wait it out.

We're going now with Plan C: call before leaving home, and then upon arrival, have Mom sit in the lobby while I check to see Dad's mental state. Nice--we visit. If Somebody Else is on the rampage--we go away.

Today after leaving, I took Mom to the dollar store: three cans of soup, 2-in-1 shampoo/conditioner, and bath soap for $6.15. Not a solution but perhaps an anodyne.

Copyright 2013 by Thomas L. Kepler, all rights reserved

Sunday, August 11, 2013

A Day Out with Mom #12: homage

We find Dad sitting in his wheelchair in the inner courtyard, half in shade and half in sunlight.

His eyes are closed, baseball cap shading his eyes, hands resting in his lap. Sunlight warms his back and neck. His movements are slow, almost as if flowing from a T'ai Chi posture. He has heard our voices.

As Mom sits beside him, he reaches out and takes both her hands in his. They sit in silence, Dad cupping one of Mom's hands with his, Mom patting his hands with her free hand. They have done this many, many times over the last sixty-seven years. Their hands remember one another on their own, out of muscle memory and shape carved by years.

Silence--I stand unmoving, unobtrusive. Dad opens his eyes, weak and an inflamed red. He murmurs a sentence, a question, a flow of syllables that his wife in her deafness and I with the distance cannot hear.

"What, Dad?" I ask.

He turns his vague gaze to his wife.

"Is there some way I can pay homage to this woman?"

I have never heard my father use the word "homage." I am motionless as the meaning of his words fills me.

"You are doing it now, Dad, holding hands and being together."

Mom pats his hands. Perhaps she heard the words, perhaps not.

They sit in silence, holding hands, these words homage to that moment.

Copyright 2013 by Thomas L. Kepler, all rights reserved

Thursday, August 8, 2013

A Day Out with Mom #11: Dad dances with dementia

(Mom and I walk into Dad's room. He stares off, away from the door, at stripes of light and shadow from the venetian blinds.)

Me/Mom: Hi, Dad, how are you doing today?" "Hello, Harold, we're here."

(No response. Dad continues to stare at the light striping the wall.)

Me: I'll just put the wheelchair over here and get the chair by you so Mom can sit by you.

(I push the wheelchair to the foot of the bed and then pick up the visitor's chair and position it next to Dad's side. As I am doing this, Mom bends down and picks up Dad's slippers to place them on the wheelchair's seat.)

Dad: Don't touch them! They're poisoned with powder they put on them!"

Mom: Harold, they're just your shoes.

Dad: No! There's poison on them. I saw them powder them. Wash your hands! Wash your hands!

Me: Dad, if the powder was that bad, they wouldn't be sticking your feet in them.

Dad: (Making abrupt, powerful pushing away movements with both hands.) All right, if you won't listen, there's nothing I can do. (Jaw set, he looks at neither of us.)

Me: OK, Dad, we'll go wash our hands. (I motion to Mom and take her into the bathroom.) Mom, remember when the German brain specialist said there were two dads--Dad and somebody else? I think Somebody Else is here today, so let's be careful and just leave early if we can't get along.

Mom: OK, let's not argue.

(We wash our hands and return. We talk to Dad but he does not respond. He continues to stare at the play of light and shadow on the wall. Occasionally he gives us sidelong glances. I pick up the daily cafeteria menu to have something to talk about.)

Me: Hey, roast beef, mashed potatoes, and gravy today, Dad. You like that.

(Dad turns his head slowly to face us.) Be very, very careful. Don't eat anything here. (He slowly turns his head so that he is staring at the stripes of light on the wall again. Mom and I talk of inconsequential, innocuous things, trying to draw Dad into the conversation. His body has a tenseness to it. He is aware of us but not responding to us. Mom and I chat and some minutes pass.)

Dad: Well, nice to have you come and visit. (He turns his head to look at us as he speaks. His voice lacks emotion and is guarded as he follows the social ritual of manners. He face is expressionless.) I'm tired and want to rest now. See you tomorrow.

Mom: OK, Harold, we'll go and let you rest.

Dad: Be careful on your way out. Don't take any chances.

(As we stand up, Dad's gaze shifts back to light and shadow. Mom kisses him. He does not respond.)  
 
Copyright 2013 by Thomas L. Kepler, all rights reserved