Recently Terry, my husband, had been exhibiting dementia type symptoms. Sometimes he doesn't know how to work things. Afterwards, he has no memory of his behavior.
Last night proved to be one of the most frustrating evenings I've had with Terry in a long time. His behavior was that of a severely overly tired little child, but in a grown man's body. It began when he called my name early one evening.
"Jane."
Going into his room, I asked, "What do you need?"
"I don't know."
"Are you trying to do something?"
"I don't know."
"What do you want to do?"
"I can't get anything to do anything!"
He was sitting in his electric wheelchair, unable to get the controls to work. Repeatedly he pressed the horn button and the display screen, as though either of them might make the chair move. Patiently I explained to him for the umteenth time that there was a small lever to turn the chair on and off, two buttons, one to move the chair and one to recline the chair, and a wheel for more speed control. He looked confused.
"What were you trying to do?" I asked.
"I want to get into the bed." Terry often took naps during the day. Even more often he fell asleep in his wheelchair.
"Let's leave the chair off then and I'll help you transfer."
"But the chair won't do anything."
"That's okay, because you're going to get into bed."
"I don't want to go to bed."
"Okay. You said you wanted to get into bed. Do you want to stay in your chair?"
"No."
"Do you want to get into bed?"
"Alright then, I'll help you get into bed. Is that what you want?"
"Yes."
As I started put my arms around him to lift him, I asked him again, "You do want to go to bed, right?"
"Yes."
"Okay, I'll help you transfer, but you have to follow my instructions. Alright?" Following instructions wasn't Terry's strong suit. He liked to do things his own way, which in his current situation, didn't work well.
"Okay."
He had been fiddling with the controller the entire time and managed to turn the chair on.
"First turn the chair off. It's not safe to transfer with the chair on." I said, as I reached over and flicked the lever to the off position. I put an arm around him. "Next, scoot forward in the seat."
He pushed up on the chair arms to lift himself slightly as I helped him slide forward.
"Now, rock three times. On the third time you're going to stand. I don't want you to throw yourself towards the bed. I want you to stand." He rocked and I helped lift him to his feet. Immediately he tried to lunge towards the bed.
"No! Don't do that!" I scolded, as I resolutely held him in position. "I want you to step to the side. Hold onto me. I have you." I tapped his right leg. "Move this leg towards the bed."
He took a small step.
"I'm going to help you turn and sit on the bed. Don't throw yourself on the bed. Sit on the side."
He turned, sat, and immediately tried to throw himself backwards.
"No! Don't do that! You'll hurt your back." Again I scolded him. "Do you need to move back farther?"
"Yes."
I placed my knees against his and with my arms around him, pulled him up slightly as I pushed him farther onto the bed. Immediately he again tried to throw himself backwards.
"No! Don't do that! You'll hurt your back," I repeated. "Don't you remember the doctor and therapist told you how to get into bed? I want you to lie down sideways and roll over onto your back, if you want to be on your back."
I guided him down sideways and held him in position as he tried to twist onto his back. "Pull your legs up onto the bed before you turn over."
As soon as his legs were up, he rolled onto his back. Instead of lying there, he began rolling side to side so forcefully he nearly rolled off the other side of the bed.
"Stop that! You're going to fall off the bed!" I raised my voice, partially out of fear that he would escape my grip and partially because he is quite deaf. I wanted to make sure he heard me in his stupor. He stopped the rolling and began kicking his legs.
"What's wrong?" I asked him. I had to repeat the question several times, before he would talk.
"My pants!" he exclaimed. Kicking his legs caused the pant legs to ride up, nearly to his knees. I held him in place with my left hand and straightened his pants with my right.
"Okay, they're straight. Now, are you alright?"
"I don't know!"
"Let me get you comfortable! Lie still for a minute and let me adjust things." I quickly raised the bed into more of a sitting position, placed two pillows behind his head and upper back, adjusted his clothes, and put a blanket over his feet. "Are you comfortable?"
"Yes," he said. A sigh of relief nearly escaped me, but it was interrupted by his immediate fidgeting. An endless cycle of positional demands began in earnest.
Repeatedly he wanted to lie down in bed, sit up in bed, or get into the chair. I struggled with him to stay in the bed. He would ask for covers and immediatley kick the covers off . Each time he changed positions I would ask him what he needed to be comfortable, and adjusted the pillows, covers, and elevation of the bed accordingly. As soon as I finished, he would want to change position again.
"What do you want to do? What do you need to be comfortable?" I asked him repeatedly.
"I don't know," he whimpered.
I took his face in my hands and lifted his chin. "Look at me. Look at me." Getting him to look me in the eye when I talked to him was always a struggle. "What do you want me to do? What do you need?"
"I don't know!"
He began thrashing wildly in the bed, trying to take his clothes off. I had hoped he could lie down for a nap with his clothes, so I wouldn't have to redress him later. But, he wanted his clothes off. And, he had a thing about wearing pajamas. He claimed he couldn't wear pajamas, no matter how many times I explained the advantages. They mitigated him from being too warm, as when his legs were together or an arm laid against his body, or too cold, after kicking covers off, and leastly, pajamas protected the linens from body sweat. In trying to pull off his clothes, he was pulling off his "pull-ups."
I scolded him like a little kid, while physically preventing him from rolling out of bed on the far side or flinging himself, like a flying monkey, into his chair. "Stay in bed! You're going to hurt yourself!"
After twenty minutes of phyically struggling with him, I could see I was getting nowhere. His behavior was like that of a severely exhausted small child. Many years earlier I witnessed a little girl having a melt down in a Disneyland bathroom. Her mother, from a foreign country, was trying to calm and console her daughter to no avail. During a diaper change, the little girl began thrashing about, arching her back and twisting, kicking her legs, hitting her little fists down against the changing bed, and crying at the top of her lungs. She laid there naked, wiggling, kicking, and screaming, as the mother was unable to secure the diaper tags. The mother looked at me in desperation and said, "I don't know what to do!"
I said, "Don't worry. It's okay. She's just exhausted."
The mother seemed somewhat relieved that a stranger understood.
I asked, "May I pick her up?"
"Yes, but she doesn't have a diaper on," the mother said.
"That's okay," I said, as I scooped the unclad little girl up in my arms. I held her close against me, with one arm under her little bum and the other across her back. Making calming "shushing" sounds, I began bouncing her gently up and down with a soft sideways swing. She screamed and struggled for a couple of minutes, but then quieted and fell asleep.
I so wished I could do this with Terry. I had given him a newly filled prescription to prevent restless legs, but apparently the effects hadn't kicked in yet. I explained to him that it might take half-an-hour or an hour, but he expected instant relief. I told him it didn't work that way.
I could feel myself getting frustrated. "What do you want? Do you want to stay in bed or do you want to be in the chair?" I asked sternly.
"In the chair," he said.
"Okay, but this is the last time! If I put you in the chair, you have to stay there. Do you understand?"
"Yes."
"So, you're sure you want back in the chair?"
"Yes, I want back in the chair!"
"Okay, but no flinging yourself at the chair." Once again we went through the transfer procedure to place him into the wheelchair. Once again he tried to lunge at the chair, instead of stepping. He barely caught the edge of the seat. Only my grip on him prevented a fall. A quick push repositioned him safely in the wheelchair.
Immediately he tried to "do" something with the chair, but couldn't work the controller. After situating the chair for him and adjusting the recline, I left him with one last scolding. "Stay there! Don't try to get into bed on your own. If you need something, call me."
With this last transfer, he calmed down. I returned to the living room, where my son waited, and collapsed on the sofa. "Did you hear?" I asked him.
"Yes," he answered, with a look of OMG.
We both shook our heads and expressed concern over Terry's decline. Although this incident is quite typical of exchanges with my husband, usually they don't last as long. Although I have an abundance of patience, this episode was trying. How many more times will this happen? Probably too often. As I get older, will I be able to endure the physical demands of care giving? Again, probably. A friend, in an effort to console me about my body and weight (short and stout), said, "It's a good thing you're built the way you are or you wouldn't be able to do the things you need to with your guys."
Dealing with the mental aspects of dementia, that's tougher. Holding hope that his dementia is tied to one of his medications gives me some solice. I wish for a magic wand to wave and make him better. Barring that, maybe it could bonk him on the head with the wand, but the law won't allow...
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