Long Term Care

Long-Term Care

I found a picture of his smiling face while I was sifting through his old legal documents and memorabilia. Stuffed in among the musty and bug-nibbled old papers he had saved and saved, “just in case,” was a picture of who my dad was long before his stroke of five years ago took away the man inside the body.

He was standing in front of my second grade class, playing his accordion and singing “Beer Barrel Polka.” He wouldn’t be able to get away with that now; it wouldn’t be tolerated. What was he thinking, dancing around and singing about barrels of beer and barrels of fun to seven year olds? I was proud of him that day, though, and my classmates loved the music and the jolly man playing it. I went in search of the rest of my parents’ photographs.

“Hey Mom, Dad. Look at this. I found the video of your 40th wedding anniversary party.” Almost immediately after the film started running, they both began quietly sobbing – and then, of course, I did, too. It was hard to look at how vibrant they both were just ten short years ago was. There Dad was – again and as always – with his accordion in his arms. Mom standing in front of him singing along with “their” song: “It Had To Be You.” A duet.


For nobody else gives me a thrill,
With all your faults, I love you still,
It had to be you, wonderful you,
It had to be you.

On the video they were surrounded by the various branches of our family. My brother and three sisters and their kids and grandkids, and of course, me and mine. There were about 45 or so of us, all talking, laughing, singing, dancing. The little ones were spinning in never-ending circles to see how dizzy they could get, the teens huddled together in the corner embarrassed, trying to pretend that the rest of us – we crazy grownups who grabbed at the microphone every time Dad played a song we liked to sing – were not related to them in any way. I had planned on just putting the videotape in for them, then quietly slipping out of the room to get back to my work, but it was entrancing to see us all as we used to be.

Now, in their living room with them, with Mom writing her crossword puzzle answers that no longer made any sense, and Dad in his recliner, they looked like two sweet old people reminiscing. The days of that videotape seemed like forever ago and just yesterday. It was hard to come back to today.

For today I and all my stuff are crammed into one room of their house. Today, instead of the smell of cookies baking and suntan lotion of my kids’ childhood, there is the always-present smell of the antibacterial ointment that we have to keep on my dad’s back, legs and buttocks so his bedsores won’t get out of hand. Today, that is one of the least unpleasant odors in their house. Today, I have to convince my mother – again – that she has to wear the briefs I bought her because she can no longer control her bladder. And today, his accordion sits in the corner of his room in its case, swathed in blue velvet, and covered with dust.

The screen turned to snow and Mom and Dad were wrapping up their sniffles, coughing and clearing their throats to allow themselves a bit longer to recover. It was kind of strange to see people with tears running down their faces, snot coming out of their noses, and smiles on their faces at the same time. I had to wonder which emotion was stronger. I sure didn’t know.

Maria, their nurse, rushed over to my dad and pulled out a couple of the tissues that were always kept at his side. He waved her away, brusquely.

“Why? Why Seňor, why you no want?” she asked him. He didn’t much like being nursed in the first place, and especially didn’t like her getting in his face and in what he considered his personal business.

“He’s fine, Maria. No es necessito,” I told her.

“Okay,” she said in her resigned way, as she started fussing with the blankets that keep him tucked cocoon-like in his chair.

“No!” he shouts, pushing her away again.

“It’s all right, Maria. No need, okay?” I knew she was bugging him and things were going to get ugly pretty soon if she didn’t stop. Finally, she moved off toward a chair on the other side of the room, facing both Mom and Dad. He was still waving her off and grumbling at her, but she looked like she was standing her ground.

“Wow. Everyone looks so different on that tape. Don’t they, guys? The kids were just babies and most of us were still married,” I laughed. Distract. Deflect. Diffuse.

Mom and Dad both started “talking” at the same time, then. No doubt, trying to bring something that they saw on the tape to each other’s, or to my, attention. With her severe dementia about the best Mom was able to get out went something like this: “What was that thingy that what’s her name gave us? You know. That thingamajig in the box.”

“That who gave you, Mom?” I asked. I hoped she would remember who she was talking about, for I knew that I had to identify the “who” before I could get to the “what” that had been in the box. “Who are you talking about?” I also knew that this could turn out to be a very long conversation and I was getting antsy.

“Oh. . . you know. The one with that little kid. The one with the blonde hair.”

My father is Norwegian and at least two-thirds of his descendents are blonde-haired and blue-eyed. I had to play, though, because if I didn’t, Mom would either get mad and pout, or she’d get frustrated and start crying even harder than she had been before.

“Are you talking about Bonnie, Mom?” I am the youngest of the five of us. I moved in to take care of Mom and Dad when my brother had reached his breaking point and had to move out – about six months before. One sister is two blocks away from us and does everything she can to help out, one lives a couple of hours away and visits about once a month. Bonnie lives about twenty minutes away and visits on Thanksgiving, Christmas Eve and Mother’s Day. Sometimes.

“It’s just too hard to take, Mary. I can’t watch them deteriorate,” she said to me once. Oh, but I like it. I love watching Dad dribble his food down his chest. I get a kick out of dragging the trash bag full of his dirty diapers out to the curb every Tuesday morning before I leave for school at 7am. I enjoy my mother telling me six or seven times in a day that she has to go grocery shopping, and then watching her face fall when I explain to her that she hasn’t driven for over six years and doesn’t even own a car any longer.

It’s really hard for Mom to remember anyone now who isn’t around her at least a couple of times a week, despite having given birth to them. So I further prompt her. “Bonnie is your daughter, Mom. Remember? She was born in 1950 at St. Mark’s hospital in LaCrosse, Wisconsin.”
She gives me a killing look. But one that says that she’s hurting, too.

“I know she’s my daughter! What, you think just because I can’t drive anymore that I’m stupid? That I don’t even know my own children?”

Yesterday, she asked my daughter, Laura, who does visit about every three or four days, when she was going to graduate from high school. She’s twenty-five now and has a five-year old daughter of her own. Laura pulled me to the side of the room. “Jeez, Mom,” she said. “She’s really getting bad, huh? What should I do when she does that? If I keep correcting her she either gets frustrated and mad, or she gets sad. But if I don’t, if I go along with her. . .her what? her fantasy? memory?. . .then I feel like I’m treating her like a child or even worse. How should I handle it?”

Wow. If that bothered her, it’s a good thing she didn’t see them on an everyday basis. She’d flip if she heard our conversation nearly every time I walked through the room:
“Hey, Mom, Dad,” I’d say. “Whatcha watchin’ on the tube?”

“Oh, hi honey. I didn’t know that you were here. Were you in the bathroom?” Mom would say.

“No, Mom. I was in my room. I live with you and Dad now, remember?”

“Really? When did you move in? I didn’t see you move in! Why are you living with us?”

“I moved in a few weeks ago. I just needed a little bit of help and you guys said it’d be okay.”

“Oh, sure, honey. Of course it’s okay. It’s nice to have you here.”

“I don’t know, Laura,” I told her that day, “just do what your heart tells you, I guess. I don’t think there are any good answer to those questions. I wish there were,” I told her.

When Mom started fuming at me that I was treating her like she was stupid for not knowing her own children, I had to change tactics quickly.

“Of course I know you know that Bonnie’s your daughter, Mom. But on the videotape she was standing so close to that friend of Stephanie’s that I was having trouble telling them apart, weren’t you?”

“Oh. She was, wasn’t she? Sorry, honey,” Mom said, giggling but looking chagrined. “I didn’t know what you meant. What were we talking about?” She smiled again and I tried to swallow the lump in my throat.

“Shoot, Mom. I forgot. How ‘bout I go see what I can scrape up for dinner, huh?”

Right about this time Dad wanted to make sure that he was part of this upside-down conversation, too, so he started mumbling his gibberish and pointing to both Mom and me. His stroke left him paralyzed on his right side and unable to speak unintelligibly. But his brain is fine. He knows exactly what he is saying, but what comes out is: “Boo-boo. Babababa. Giteramtelbo, scadushiwom. Boo. Boo, boo, boo.” He usually says this as he’s pointing. He points and “speaks” and then I start guessing what it is that he wants, or wants to tell me.

Luckily, he can say “yes” and “no.” He can also say “Jesus Christ,” and “Goddammit, goddammit!” What’s even crazier than that is that he can sing along with his favorite songs when my sister plays the piano for him. Every word. Perfectly.

He still had something to say about what had been happening on the TV screen, or so I thought. He pointed and said, “Boo-boo.”

“What, Dad, is it about the movie we just watched?”

“No. No, no, no.” He waved his left hand back and forth as if trying to erase that idea.

“About Mom?” I asked.

“No, no, no, no, no,” he said. “No.” “Eskigabo. Quodrave,” he told me, pointing to what seemed to be their once-upon-a-time rec room, but is now the room where his hospital bed, his changing cart, and oxygen machine are located.

“Poscoramby!” he shouted, poking his fingers at me in a demanding sort of way.

“You want something from your room?” I asked, hopeful. If it’s a thing he wants, I can usually guess it within about 10 or 15 tries, but sometimes he wants to express an idea and, that’s really hard to get to without words.

“No! No, no, no! Jesus Christ, Jesus Christ! No.” He dropped his arm and his head fell to his sinking chest, with a loud sigh. “Goddammit,” he mumbled.

“Dad, it’s okay. I’ll figure it out. Don’t get so upset, okay?” I told him.

I knew how frustrating it was for him to know in his head what he was trying to tell me but not be able to form the words. I was trying to be patient. But also, I had term papers to write and midterm exams to study for, I had promised to baby-sit my granddaughter that evening so my daughter could go take her midterm, and my bills all needed to be paid. And I had to go to the bank and get cash so that I could put gas in my car in the morning before I headed out of town.

“Okay, it’s not in your room, right?” I asked him. He looked up and shook his head no, not even attempting language this time.

“Do you want something from in here, Dad?”
His eyes brightened. “Yes!” he exclaimed. “Yes, yes, yes.”

Good. Now we were getting somewhere.

“You want me to turn the TV back on?”

“No.” he told me.

“Hmmm. . . let’s see. You want me to play the piano for you?” His eyes brightened again because music is his favorite thing. It looked like he wanted to say yes, but I knew that was not what he had wanted to tell me. It was important that I keep going.

“You want the lamp on?” My sister gave him a red lamp on Valentine’s Day. Red has always been his favorite color; he wants it on night and day. Sometimes we forget to turn it on and he is upset until we figure out that’s what it was he wanted.

“No. . .” he said, tentatively, leading me to believe that I might be coming closer to guessing what he wanted.

“Oh, George!” my mother said. “Why don’t you leave her alone? You’re always bothering her!”

“Nah, Mom. It’s okay, really. I don’t mind. I want to figure it out.”

He didn’t want the lamp on. He didn’t want his pillows rearranged. He didn’t have to use the urinal. His blankets and clothing were okay. He was not cold, not hot. He was not hungry. No pain. But, wait! He looked interested when I asked him if he was hungry. Was that what it was? Was he just answering me from when I had asked Mom if she was ready for dinner? Could it be that simple?

“You want dinner, Dad? You hungry? That what you’re trying to say?” I asked him.

This time his head went backwards. He snapped it back so that his chin was pointing to the ceiling. He sighed again. Shook his head.

“Hmmm. . . okay, don’t give up. I’ll get it,” I encouraged. “You want some music, want me to play your CD?” About six months before his stroke, we made a CD of him playing his accordion and the piano, accompanied by my sister playing the guitar and me and my other sisters singing all the songs he likes. He loves to listen to it. He listens to it four or fives times a day. He listens to it four or five times a day. He listens to it four or five times a day.

“Nooooooooo!” he yelled. “Goopgiddigarrr!”

Yeah. That’s about what I felt like yelling right about then, too. It sure didn’t seem this hard when my children were little and just starting to talk. They knew what they wanted, too; they couldn’t say it, either. But I could put them on “time out” when they started getting out of control.

“Okay, Dad. When you said what you just said, what I heard was “goopgiddigarr,” okay? I don’t hear what you hear. You hear what you are trying to say, I hear what comes out. So, please, take it easy, all right?”

“Yeah, George, for Chrissake, take it easy on her, will ya?” Mom yelled. “Always gotta be makin’ a damned stinkin’ fuss.” She reached over and grabbed a piece of chocolate left over from Easter, popping it into her mouth.

“Yes!” shouted Dad. “Yes, yes, yes!” What? I hadn’t said anything.

“Yes!” he yelled again, pointing to my Mom.

“Oh, you want some candy? Is that it?”

“No, no, no, no, no.” he told me. At this point, I was about to start yelling “Jesus Christ!” and “Goddammit, Goddammit!” Then he pointed behind him toward the kitchen and started his gibberish again, this time making very specific gestures with his left hand. He held up one finger, and said something incomprehensible, then he held up two and then three. All the while pointing to the kitchen.

“So, you are hungry?” I asked him again, almost afraid of his answer.

“Yes!” he said.

Then, “No!” he said, getting louder. He was shaking his head now like a boxer coming out of daze.

Maria had been watching and listening this whole time. I think she gets a kick out of seeing how I cater to them. I’m pretty sure she thinks I spoil them and would like it if I would just go away so she could take complete charge. For sure, she never spoils them. Oh, she’s efficient enough, but there’s not a whole lot tenderness in her care. She pretty much just does her job. Normally, her static facial expression is a half-smile; she just barely raises both corners of her mouth. It’s a pretend smile. But this time, she looked up at me and smiled a real smile. A big smile. She was enjoying this.

“Shut up!” I wanted to shout at her, even though she hadn’t said a word.

“One.” I said, as he held up one finger. He nodded. “Two,” I continued, as he added another, and “three,” as the third and final finger joined the others. He said “Yes!” nodding and continuing to point toward the kitchen with his hand.

Maria got up, went into the kitchen, and returned with a carton of Neapolitan ice cream.

“Thees?” she asked him. “You want thees?”

“Yes!!!” he laughed, nearly ecstatic. She’d done it. She’d figured him out. It’s weird how she can do that. Sometimes they’d be together outside and he’d start mumbling. She’d walk over and pull out a weed from the flowerbed, and he would say, “Yes!” and laugh. Or, he would chatter for a minute or two and she’d get up and grab the Bible and start reading to him. In Spanish, of course, but he doesn’t seem to care. He’s just happy that she “gets” him most of the time, even though he always complains about her and seems to want her gone. I want her gone, too, but there’s no way that I could do what she does.

“No,” Maria told him. “You no have thees now. Ahora no lo coma. Deener first, okay?” That made sense to me. She didn’t want him spoiling his appetite with ice cream before he ate dinner. But, of course, he pointed to Mom.
I knew what he was saying: he was telling us: “Well, she had some candy, why can’t I have some ice cream?” That made sense too. Oh, God. I just wanted to get back to my paper on Emily Dickinson’s poetry.

“Give him the Goddamned ice cream, will ya?” I screamed, silently. But what I said was, “It’s okay, Maria. It won’t hurt him.” I felt like I was trying to negotiate with her.

“Yes!” he shouted. “Jesus Christ!”

“No!” retorted Maria.

“You stop yelling at her, George Westlie! Whataya think she is, your dog? Knock it off!” That was Mom again, as she crammed another chocolate into her mouth.

“Just give him the ice cream, Maria. It’s okay.” I told her.

“Oh, Senora, No es bueno comer antes de cena. No es bueno.”

No shit. But who cares? What’s the worst that can happen to him? He gets fat? Has a heart attack from all the cholesterol? So? The man’s eighty-nine years old, a paralyzed, aphasic stroke victim and he can’t have a bowl of ice cream when he wants it? Jesus Christ. I couldn’t believe that she was arguing with me about my own parents.

“Give it to him.” I said, no longer smiling. She had known what he had wanted all along, the bitch. She just wanted to see the show.

“No, Senora. Por favor, no. No es bueno.” Okay. That was enough.

By this time my Dad was cracking up, for he, also, likes a good show (and often likes to be the ringmaster, as well). Mom was still yelling at him while she stuffed more chocolate in her mouth. I yanked the container out of Maria’s hands and walked away.

In the kitchen, I forcefully scooped out a couple of spoons of the three-flavored ice cream into the bowl with rubber feet and stuck the spoon he eats with in the middle of it. I put the bowl on his skid-proof tray with legs that fit between him and his chair arms and took it into the living room. I placed the tray over his lap, careful not to smash his now-withered right arm and hand. What I really wanted to do (although the very thought of that made me feel guilty) was shove it into his lap.

“There. That what you wanted, Dad? You okay now?” I asked, as cheerily as I could.

“Yes,” he said. He raised his crooked spoon in a gesture of victory, and with Neapolitan ice cream oozing out of his smiling mouth, he shouted, “Yes! Yes, yes, yes!”