Papa made egg salad for himself for lunch today.
I can’t even tell you where the live in aide was when he did this. I know where I was… Working.
So he made egg salad.
He mixed four hard boiled eggs with 14oz of I Can’t Believe It’s Not Butter.
Egg yolks crumbs in the empty fake butter container told me so. He confirmed it.
Papa has been living with us for exactly nine months. Like some strange pregnancy.
He has seen numerous doctors, but his primary doctor, Susanna Thomas, is a saint.
With her “take no prisoners” attitude, belying her southern Italian roots, she determined unequivocally that Papa CANNOT be left alone. Ever. She sent us to a neurologist because, as she said, “something’s going on in that head, let’s check for Parkinson’s or frontal lobe issues.” All comes back negative the first time.
She determinately dictates that we should look for a memory lock down unit for his care. He is a danger to himself and others. She states again- He CANNOT be left alone.
I know this to be true.
Since his arrival nine months ago he has melted a coffee pot, burnt a chopping board, fed chocolate to the dogs, let the dogs out, fell down the stairs, chopped his finger, lost five teeth, put cat litter in the bird feeder, hoarded cold cuts in his underwear drawer, has taken approximately 4.5 showers, contracted pneumonia, twice, called the police because he was angry, tried to move out seven times, locked a caregiver out of the house, pushed another one out the door and tried to cop a feel on a third.
He has made spaghetti with salsa instead of sauce, burned his hand on the coffee pot, and ordered teeth online.
He has wandered into the yard and lost his way, he has eaten angel food cake in his room on his lap, naked.
This is not a sane man. He could hurt us or himself at any moment. We travel often and work late into the night on most days, so who is to supervise?
So I call the state. Since Papa is dirt poor (his own doings), they cover his care through Title 19. They told us in August they do not cover memory unit care. They do cover nursing homes, but only if he qualifies. They also cover a 24 hour PCA to live in with us. Which is what they did on September 15. Patience came to stay. Yes, this is her real name. God is good.
Making room in our lives for Patience is not an easy feat it appears. We had to relocate my daughter, Chelsea, to make room for Patience, as she needed my daughters bedroom. We began to renovate the third floor of our home for Chelsea and gave Patience Chelsea’s room next to Papa’s who is in the boys old room. Musical rooms. But until the third floor is done, Chelsea, bless her heart, is sleeping in the music room in the basement and sharing our bath.
But I digress.
So Patience has been a GODSEND! She gets Papa showered, something he refuses to do. She brushes what little teeth he has left. She makes sure he takes his medicines and eats breakfast- not sugar. She drives him daily to Stop and Shop for lottery tickets and whatever food obsession he has developed that week. She is there when we are not, which is most often. My stress level is down, the dogs are safe, my father is safe and healthy- no doctors visits for UTI’s, no malnutrition, no falls. No nursing home. The way I calculate it, this is saving the state a lot of money.
And yet….
I field a call today from Myra at The Agency on Aging. She is sweet. But she is a government sheep. Not her fault.
Myra visited the day before, while we were all at work. She ‘talked’ to Papa. He can care for himself, he tells her. According to him, he tells her he takes his own shower, he brushes everyday, he cooks full meals for himself, and yes he can still drive (he can’t). She turns to the caregiver, who is a fill in while Patience is on a break. The caregiver says she hasn’t helped him much in the two days she’s been here. That’s a thorough assessment, right?
So Myra the Sheep is on the phone today telling me that, based on her visit, Papa no longer qualifies for live in care. He would need PHYSICAL care in order to qualify, you know, help getting in the bath, wearing diapers, and feeding himself.
But what about the doctors orders for full time care?
The state says he doesn’t need it, and well …. The state.
So, now we scramble. My world can never remain orderly.
Two weeks ago, while Vic was in Virginia on work, I took Papa out on a beautiful Sunday morning. I thought it would be nice to get some fresh air and do some ‘fall’ things.
I mapped our route to Scott’s Orchard to pick apples, then on to New London to eat fritto misto dockside, then a planned stop for some ice cream on the way home.
I made sure we left early, to get to the orchard before the crowds. The sky was an amazing cerulean blue, as it gets in October, and the leaves were at their peak. I parked with Papa’s guidance – no control tower engineer could provide more abundant directions on driving than Benny telling me how to drive and park.
He seemed confused as to where the apples were, despite having to walk straight through a long row of apple filled trees on our way to get to the stand to retrieve our picking bags. No worries, I just kept pointing them out. Turns out, they weren’t big enough for him. He was making a point that they were too small.
I walked slowly, explaining the sights as we went. He loved watching the families arriving with kids, commenting on how wonderful the mothers looked with all their children. “Like a hen, with the little baby chicks, so cute”, he commented. By the end of the morning though, the crowds were too much and he hated children…. but i digress.
At the main stand I peeled off two bags from the stack.
“Papa (his name of endearment for me), I only want five apples”, Benny stated.
“Ok, here’s a small bag to put them in.”
“No, papa, but I only want five.”
“Ok, that’s fine. We’ll fill these two bags and then you can pick out five for yourself.”
“Oh, ok.” He seemed satisfied with the solution, and turning to face the field of trees with his signature hands behind his back, he proceeded to move slowly down the path.
The ground was lumpy with divots and ridges, tractor trails from farm workers of the day passed. I held Papa’s elbow lightly, so as not to embarrass him and cause a commotion with his outrage.
“Oh, papa, look at these apples!” he exclaimed. We hit the mother-lode.
“These are so big!” he yelled, like a child.
I began to turn each apple around, so he could inspect it for approval. Once approved, I plucked it and dropped it into his bag with a satisfied smack of his lips, a boyish grin, and a wiggle of his bushy brows. One, two, three, four, five, six…
“No, papa! I only want five apples!”.
“That’s ok, let’s fill this bag first, then the big one, and you can pick five for yourself.”
“No, why, why are you doing this?” His voice rose in crescendo to a slight wail. I cringed.
“Why am I doing what Papa? I understand you want only five, and you can have five, but I’ll use the rest for pies and apple fritters, and things….” His face was cloudy and confused.
“No, I only want five.”
“Ok, ok,….” I removed the sixth offending apple from his child size bag.
Calm again, we continued down the apple path. We discussed the trees, why there were so many, how big was the field- in hectares- who worked the field (we discussed that several times), why we shouldn’t pick the apples up off the ground, even if they still did look good, or maybe only had a few bruises, or some bugs, which could be cut out, and why are there so many bees?
Back at the stand, I splurged for two cider donuts. Papa’s diabetes would have to understand today. It’s tough to be old.
We sat on a picnic bench worn smooth from generations and warmed by the sun. Our companions at our feet were two farm dogs, one missing a front leg. They seemed content to lay around waiting for things to inevitably drop from the growing gaggle of children darting between the benches, trees, and incoming orchard traffic. This made Benny very nervous. He abruptly got up and pronounced we would now leave. Without waiting for me to agree, he walked straight into the entrance lane. I darted after him, leaving our bags on the picnic table, and got to him just before a black Jeep Cherokee did.
“Papa, our apples, come help me carry the bags.” I wheeled him around by his elbow.
With our bags retrieved we got into the car for the next leg of our journey. Lunch. At 11 AM. I determined to drive slow, taking the back roads instead of the highway.
We drove down a beautiful street in New London with water views and grand houses. Papa filled me in on his journalism days, visiting actors for interviews in homes of similar style and elegance. He asked where we were. He asked seven times.
We were the first customers at the seafood restaurant, all outside seating – thank goodness for a beautiful day. I ordered the mixed fried seafood plate, with french fries and coleslaw. Papa sat at a picnic bench, only made perilous by his having to swing his leg over to sit down. I said nothing but hovered to catch his 6’3, 250 pound frame the best I could should he totter or fall.
“Look at the little bird” he exclaimed brightly, tossing a fry, “Oh, he’s so hungry.” He giggled.
We shared the plate of fried seafood, or fritto misto in Italian, Papa relishing every bite, his favorite dish.
“Oh, papa, everything you plan is so good, it’s perfect, I will remember this day forever.”
I didn’t remind him that he probably wouldn’t.
On our way back to the car, Papa stated that he would write about this for the Italian newspaper. “But,” he said “It needs a special twist. I cannot write about the American apple fields…how you say this?”
“Orchards”.
“Orchards, yes, I cannot just write about that. I will write about going for a lovely drive with my beautiful daughter and all the things we saw.”
We traced our road back toward home. Shortly I turned the car into an ice cream shop, all pink and purple, with a big black and white cow on the sign.
“What’s this papa?” his voice filled with excitement.
“I thought we’d get some ice cream.”
“Aghh, now you’re talking kid!” he growled like a 1940’s movie star.
We walked in and I saw that it was frozen yogurt, not ice cream. Uh-oh.
“Do they have, my favorite, pistachio?” he smirked and wiggled his eyebrows. It was serve yourself. He wanted a cone not a cup. The shop owner was very kind and talkative.
“We do,” she said, “It’s white pistachio.”
Oh-boy.
“White pistachio?” he inquired, furrowing his brow. “I never heard of such a thing.”
I grabbed a sample cup “Here, Papa, taste it and if you don’t like it we’ll go somewhere else.”
“Is this ice cream?” he said, reading the sign – FROZEN YOGURT.
The shop owner brought us a waffle cone in a white and red striped paper. I grabbed a serving cup. Quickly moving to another machine I animated “Mmmm, salted caramel, that sounds good, doesn’t it Papa?” I hoped the distraction and brief time would help him forget the yogurt obstacle.
It worked.
“Caramel ice cream, with salt? Why would they do that?”
I filled his cone with pistachio, he swiped it from my hand and sat down immediately at a little cafe table. The shop owner, kept talking to him about her store, New York, her sister. I thought it was charming. Papa ignored the whole thing. He was clearly now in his world. I was a little nervous all the sugar and fried food was too much for his endocrine system, plus we had been out for about 4 hours now.
He sat with his back to us, looking toward the rear of the shop, devouring his treat. When he was done, while the shopkeeper kept talking, he got up, headed toward a door marked employees only and tried to enter.
“No, Papa, not there. Do you need the bathroom?”
“Huh?” he grunted as if woken from a daze, “No, no, the car.”
I turned him toward the front door. “Good bye” he shouted, lifting his hand as he strode out the open door into the parking lot. I quickly said goodbye to the sweet shop owner, with a smirk and eye lift, and joined him at the car.
On the ride home we listened to the Frank Sinatra station on XM radio.
“Papa,” he said, “remember when your sister said, Bobby Darin would be more famous than Sinatra? And god dammit, she was right! Remember, we were in the room with your mother, she asked who is this Bobby Darin? Your sister loved him.”
We rode in silence for a few minutes.
Then he spoke softly. “Oh, papa, not your sister… your aunt. Why would I say your sister? Your aunt loved Bobby Darin. Is she still around, your aunt?”
“Yes, papa, remember you saw her a little while ago at the house.”
“I did? Oh.”
It had been a long day.
But now, two weeks later, Papa proclaims he’s moving out. Again. This will be the sixth time he has made this announcement. Some minor, or major, or dream inspired grievance in his mind, that I or Vic, or someone has put upon him. Unremembered, fabricated, or long standing from his younger days. Who knows. But he’s going. On the first. Or the second. Whenever he can find a place, he states regally. And he won’t be joining us for the seven pm meal as he calls it, he is refraining from that as well. He made his caregiver take him to Stop and Shop to buy dinner…hot potato wedges and a bag of chips. He made her store them in the car. She snuck out later to retrieve the potato wedges and place them in the fridge, out of fear he would food poison himself.
It will be a long week.
It’s Labor Day morning. Papa is up early. He is cleaned and dressed on his own. His plaid button down is tucked into his white underpants. The elastic of the shorts and their Hanes logo visible to all above the waistline of his green pants. I don’t mention it.
If you’ve ever been around or have cared for an autistic child, that’s very much what dementia is like in some ways. Single minded. Routined. Rigid.
Papa is waiting for “the girl” . His companion comes every weekday at 9am sharp. If she’s early she waits in the driveway. She is mild mannered, quiet, without very good English capabilities. But they get by.
I told him last night that it was Labor Day and she wasn’t coming.
“No, papa, you are wrong. She’ll come. She always comes “.
He comes slowly down the stairs, his heavy steps making each wood joint creak, echoing in the foyer. He stands in the kitchen where I am resting with my coffee.
“Papa, write down again the name of that store where I can find the pasta for cheap.”
I print O C E A N S T A T E J O B L O T in big capitals across a yellow post it. I don’t know why I think that will help either of them understand it better. It’s like shouting at a deaf person.
Papa takes the paper, he meanders to the front door and peers out the sidelight. He sighs and wanders back to the kitchen.
“It’s Chelsea’s birthday the 4th?”
“Yes, she turns 24.”
“Eh, what should I get her, papa? She likes shoes, I remember she told me.”
“Shoes would be nice. Or a gift card.”
“Ah, where do I get that?”
I make it simple for him. His world revolves around Stop n Shop.
“At Stop n Shop”
“Oh, ok!” He is pleased. He knows that place. It’s comfortable.
“Papa, where is the girl, she said she would be here on Monday.” He wanders to the living room window. “Maybe she will not come anymore.”
“I told you it was Labor Day. A holiday. She is not coming today.”
“No, she said she is coming. I’ll wait.”
Fifteen minutes pass with Papa humming to himself and periodically asking me “Is the girl coming today? Where is she?”
I ignore each question. No response is necessary.
I remind myself that compassion is always an appropriate response with Papa. I remind myself that he is not being obstinate, he is being demented. It doesn’t help.
Finally after the twelfth inquiry I say “let’s call.”
No one picks up. Papa seems satisfied that his “girl” has left him.
“I guess I’ll go take a shower then.” He turns and lumbers slowly up the stairs. I think this episode of ‘Where is the girl’ is over.
At the top of the stairs he turns and yells down “When she gets here, tell her how to get to that store where you get the pasta for cheap.”
Journey Toward Oz 