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

Sunday, April 13, 2014

Sunday Bicycle Ride with My Montague Navigator at Riverbend Park, Oroville, California

It is such a joy to be able to travel by Amtrak with my Montague Navigator folding bicycle. Arriving at Oroville, California, to visit my family, I'm able to still take off and enjoy the ol' hometown of my birth in a slower, more enjoyable manner.

Chores is the theme of this visit to my parents--painting and driving almost every day. I've been riding some short rides of 3-5 miles, but the last two days this weekend I've gone a bit longer on my rides--twelve to fifteen miles. Today is Sunday, and I rode to Riverview Park along the Feather River.

I started with the 5.5-mile ride into Oroville. Stopping at the Subway for an avocado and cheese sub, I then did something unusual and stopped by Lots'a Java for a hot white mocha coffee. Riding to the river park, I ate half the sandwich and drank about two thirds of the coffee. (I tossed the rest of the coffee, wanting to sleep some tonight.) I then rode along the river on the park's trail for several miles. Returning home, I had a wonderful three and a half hour ride, finishing my sandwich when I arrived home.

Here are some photos of the day.

On the way to the river: California poppies in April

Just after stopping for a snack. Winter-pale but spring-happy.

On the Feather River trail--along with many others.

A pond down river from the park. Note my Iowa-white legs.

Just an Oroville boy fitting in: safari hat, "homeless" basket, and bandolier bike chain.

Love the Mediterranean climate foliage and the river sounds.

 I'll be taking my folding bike back to Iowa in a few days, returning by Amtrak. Spending a week and a half on the sofa in the front room of my parents' mobile home, it's good to get away on the bicycle and enjoy a little exercise, fresh air, and silence. It's been a beautiful spring visit.

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

Monday, April 7, 2014

Amtrak Again: Iowa to California--refining the process

It is a faint blush of dawn, just west of Winnemucca, Nevada, and the rhythm of the tracks provides a background melody to my typing.

I am about twelve hours away from completing my Amtrak train journey that lasts a little less than two days, including a lay-over in Sacramento and an Amtrak shuttle bus to my parents' hometown.

I've been refining my traveling ways this last year, having spent eight months of the last year away from my Iowa home.

I sit in my coach seat, a small pillow supporting my back while I keyboard. To my right in the window seat is a small ditty bag with a few extra clothes that I use while sleeping--the bag tucked into the curve of the reclined seat to lessen the angle and strain on my back, the pillow supporting my neck. My longest sessions of sleep come from this position during the night--Lazy-Boy luxury.

I am traveling to visit my family in California, and I'm focusing on bringing as little extra clothing as possible. I've bought clothes in California that I keep there, freeing me from having to pack a duffle bag full. Also, I'm collecting bicycling accessories in California so I don't have to pack tires irons, a multi-tool, tire pump, helmet, and such back and forth. My goal is to eventually transport only my Montague Navigator folding bicycle, a small underseat backpack, and a little almost-empty duffle. And if I can eliminate the duffle, that will be great.

I've bought shaving gear to keep in California, so I'm traveling hirsute this trip--a clean shave just before leaving and two days' growth at destination's end. I'm not too scruffy, since I'm not one of those guys who shaves and still has a blue tint to the face. (It would be more of a grey-white tint for me now, anyways.) I think I look okay. After all, I'm not teaching. I like to think of it as a limited, modified Jim Bridger look that fits in with my journey into the West.

A great deal of weight I carry onto the train is food. I'm working to lessen that, but I will still always have some. The Amtrak Zephyr does have a full meal service, and I eat breakfast and lunch, eschewing dinner because I don't want a heavy meal before sleeping, not with so little exercise.

I have been carrying water for the two-day trips. The snack bar sells water, though, so one way to lessen weight and bulk is to buy water at the snack bar. There are also water dispensers on the train. Check off one item. The snack bar, in addition to Amtrak's full-meal service, also sells some vegetarian food, so I can probably bring a little less food.

Some foods I will continue to bring, though. I plan to continue carrying a blanched almond and raisin mix--heavy but healthy nourishment. I have been bringing four apples with me and plan to continue doing so--again, healthy food in spite of the weight. Chapattis and cheese sticks are a great snack, especially with carrots, so those foods stay. Yes, food is weighty, but eating familiar, healthy food is a great way to make the trip more enjoyable and less draining. One good thing about the weight of the food--it lessens as the trip progresses.

The morning is still backlit by the sun that has not yet risen over the snow-topped mountains to the north of the train. The desert is colored with muted tans, faded greens, and the blondes of bleached grasses. The Zephyr passes through the sere beauty, lights on the distant slopes from isolated homes.

This trip is easier than the last trip that I made in January. I'm learning how to sleep better in a coach seat. I'm finding all the amenities provided by Amtrak's Zephyr--not the least the plug-in sockets at each seat. I'm settling in so that I can do some writing while traveling, such as this blog post that can be uploaded when in wireless range with my MiFi. Because I have recently retired, I enjoy Amtrak's slower pace, lower price, and the ground-level scenery. I also don't miss the frenetic pace of airline security and the high "people per square inch" (PPSI) count. I've found I've even acquired a few tricks that I can use when traveling by air.

Looking out the coach's window to my left and behind, the mountains are silhouetted a charcoal grey, the sky above a golden-reddish glory. Soon the sun will catch me. The Zephyr sounds its horn at an upcoming crossroad. An arroyo unwinds to the south, a sandy, serpentine memory of rain. The steepest peak to the southern range of mountains is bathed in sunlight. "It's a beautiful day beginning," sings the rhythm of the tracks.

I listen as I type.

Copyright 2014 by Thomas L. Kepler, all rights reserved