"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.
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
