Spontaneous Wheelchair Attack

 7/29/2014

One evening I needed to drive a visitor, Kyle, home to a nearby city.  After telling my husband to behave and not leap back and forth from wheelchair to bed, I left.  Ten minutes later, an urgent text message from my son informed me my husband had taken a fall.

Dashing into the house, I found Terry sitting on the bed, seemingly okay.  He's breathing.  No blood.  No broken bones.

"Are  you okay?"  I asked Terry.
Looking down and mumbling, he said something I couldn't understand, which was par for the course.
"Are you okay?" I asked again, this time louder.
"Yes," he said, a little agitated.
"What happened?"
"I fell off the bed."
"Did you hurt anything?"
"I hit my head," he said, somewhat angrily.  He sat fiddling with the control on the wheelchair. "I can't get it to do anything!"
"What are you trying to get it to do?"
"It won't move!" he said, clearly frustrated.
"Honey, it's in the recline mode.  It has to be in the drive mode to move."
I touched the button that changed the chair to drive mode and saw the setting was in P3 mode, a fast speed.
"Why did you have it so fast?" I asked him.
"I didn't.  The chair did it on it's own."
"No, dear, the chair did not do it on it's own.  You have to select P3 for it to be in the P3 mode."
"It did too.  It did it on it's own and I hit my head," he said, adamant and somewhat pouty.
"Where'd you hit your head?"
"There!" he shouted with frustration, as he waved vaguely at the floor at the foot of the bed.
"What on earth were you doing there?" I asked.  How he could have landed that far from where the wheelchair was positioned and where he sleeps in the bed was a mystery.  But, my real concern was for his head.
"Where'd you hit it?"
"There!" he shouted again, flinging his arm wildly in the same general direction as before.
"No dear, where'd you hit your head?  Did you get hurt?"
Still angry, he pointed to two positions on his head.
"Let me look," I demanded.  With a more gentle voice, I said, "I need to see if you are injured."  With that he instantly became like a little kid, calmed from the anger and all consumed with the details of his injuries.  I inspected them and  found no marks, bumps, or cuts.  So far, so good.
"Okay, it looks alright.  Stay here.  I'll be right back."
I went to Andy and asked him what happened.
"He was on the floor," Andy said.  "I don't know what happened."
I went back to Terry and began an interrogation.
"Tell me again what happened," I said.
"The wheelchair went beserk, going in circles," he said, instantly angry and frustrated.
"What?  How did that happen?"
"The chair started by itself."
I smiled and chuckled.  "Honey, the chair can't start by itself."
"Yes it can.  It does it all the time."
"No, it can't.  Let me show you.  When you get out of the chair, you turn it off.  Right?"  I said as I flipped the small on/off switch.  "Do you see, the chair can't move," I said, moving the main control.
"No, the chair moved," he insisted.
"Then you must not have turned it off."
"I always turn it off."
"No you don't.  I have come in lots of times, found it on, and turned it off myself."
Terry looked down and a little glum.  He had been shown the chair couldn't move when turned off.  He appeared to be struggling to meld that fact with his belief that the chair moved on its own.  The two ideas couldn't mutually be true.

Seeing that I wasn't getting answers that made sense, I said, "Alright, tell me again, what happened."
"The chair went crazy, started going in circles and wouldn't stop."
"How did that happen?"
"I was trying to... " at this point Terry seemed a little confused or distracted and couldn't really explain.
"I know what happened," I said.  "You tend to flail... "
He interrupted, "I do not!"
I laughed.  "You know you do.  You flail about in bed and kick the covers.  They got caught on the control.  You pulled the covers and that tugged the control."
Terry argued the point about how the chair went by itself a few more times, reluctant to accept the evidence.  Finally he said, "Alright, the covers got caught on the control and made the chair go in circles."

I sat there for a few seconds, letting the idea sink into his head.  "How did you fall on the floor?"

Terry flung his arm to the side, indicating he fell off the side of the bed.  "I hit my head!"

Trying to figure out exactly how he fell, I continued, "Yes, I know, but, did you roll off the side of the bed?  Try to stand up?  Were you transferring?" 

"I didn't fall.  I jumped out of bed," he said.

"What!?  You jumped out of bed?"  I said smiling and began chuckling.

"Yes," he said proudly, "I jumped out of bed."

"Why on earth would you jump out of bed?"

"Because the wheelchair was going crazy in circles, banging into everything."
"So it made sense to you to jump out of bed into the path of an out of control wheelchair, when you could have stayed in bed and been safe?"
"No place was safe from that wheelchair!"  he said, confident that statement proved the evilness of the wheelchair, due to the shocked look on my face.
I dropped my head, silently shaking "no."  Terry's illogic, although concerning, was too funny.  The way the beds were situated, he must have fallen between the two halves.

There was no point in continuing the debate.  Although Terry was still angry at the wheelchair, he was happy.

The following morning, I decided to ask Terry again what happened.  I began by reinspecting his head and checking his body in the light of day to insure no damage went unnoticed.   I needed to get to the bottom of what really happened.  The conversation rehashed the previous evening's talk, with a little more information.  He confirmed he had jumped or fallen between the two halves of the split-king bed.
"How did you end up at the end of the bed?"
"I crawled there."
"Why did you crawl there?"
"To get out of the way."
"You don't think you would have been safer to stay in bed?"
"No!" he exclaimed, and remembering how effective his statement had been the night before, added,"No place was safe from that chair!"
"Isn't that rather like Jaws and jumping into the water rather than staying on a boat?"
Terry paused and thought about that for a second, which I took as a good sign that he was a little more rational that morning.  He started to argue the point, but instead began laughing.  He could see the folly in his actions.  Ultimately the incident showed that leaving him for short trips had become a greater risk.

The Descent... Slipping into Dementia

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...