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.
So one of the ‘symptoms ‘ of Papa’s dementia, aside from his being insane, is his obsessions and his growing OCD.
This month it’s cheese.
Not just any cheese. Shredded Asiagio cheese from Stop and Shop.
Bags of it. Everywhere. In cabinets, in fridge drawers and shelves. In his bedroom. He buys it daily on his shopping trip with his aide. Two or three bags a day. I’m talking, a TON of cheese.
As I collect it, almost daily, I stash it in the freezer.
Today, we found a full glass of ice water in the pantry. I’m hoping the winds of change haven’t shifted……
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.”
Papa needs a man sitter.
Both my husband and I travel frequently for work. We are heading out of state for five nights the end of this month. We will be gone for one night during an upcoming weekend. Even with the army of people in Papa’s life providing temporary and permanent care, he is not in any condition to be left alone for a week, let alone a night.
I call Agency on Aging. I get the right one. Hurray! Things might be going our way.
Our CARE MANAGER Myra tells me in her comforting – I. work. for. the. government – monotone voice that she will put in a request for a 24 hour PCA for our overnight trip next weekend and another one for our five day trip end of June.
I hang up, actually believing this will be done.
Seven Days Later-
I call Myra at the Agency on Aging. Right one again. But I’m not fooled this time.
“Mhm” she says when I remind her we are going away overnight in four days. “Well, I called in the request. They will get back to me…well…let me call her again.”
“Ok, we leave in four days. I need someone to care for him, he can’t stay alone and I have to go.”
“Ok,” Myra drones, bored to tears and wishing she could get her pension without actually having to work at the agency, and especially having to listen to desperate people like me everyday. Poor Myra.
I call Papa’s nurse Marcia at the VNA. I tell her my story, about needing care, about Papa’s worsening condition this weekend. Marcia suggests I look into respite care at a local nursing home just for this weekends. It will cost us, she warns, but it’s safe and secure.
I call a lovely looking facility in a town about 20 minutes away. It has nice pictures on its website and serves respite care and has a memory unit.
Nicole takes my call. She has the title Community Relations Director. She seems nice. She wants to know all about Papa before she’ll answers my questions. I share. She seems genuinely interested. I relax. Then she goes in for the kill.
“I so want to meet your father, he sounds charming and very interesting. Let me tell you about the pricing for respite care.”
I hold my breathe.
“We do require a thirty day stay for respite care. But from what you said that will cover this weekend trip for you and your husband, plus the end of the month trip. Included in our pricing is a private studio apartment, all the activities, skilled nursing care, all meals, wifi, cable, and housekeeping, all utilities, all home equipment such as a phone, kitchen tools, linens, etc.”
She left out the the wiring in the walls, the rug and the furnishings.
“For regular respite care it is $200 per day. If there is additional memory care needed, which will be assessed by our nursing staff, its $250 per day.”
$7500 to have someone watch Papa for one month.
I let that sink in.
I realize, as its sinking in, that we have two extra bedrooms in our home. And if we could bunk up two old people per room I could offer three elderly folk respite care every month for a grand total of $18,000 per month.
I hope Agency on Aging comes through with a PCA, otherwise it looks like Benny is traveling with us this month.
Sometimes I have to remember that Papa is not well mentally
Sometimes I have to ask myself to make a choice- give in or get mad
Sometimes I have to suppress being angry. Like when he becomes petulant about wanting something. And then becomes obsessed with wanting it. And then becomes outright indignant about getting it.
Sometimes I have to admit that I feel resentful.
Sometimes I feel stubborn and defiant myself, about not letting him ‘win’.
Sometimes I have to remind myself he’s not trying to win- he’s just trying to survive.
Sometimes I remember that he is like a child.
Sometimes he is sad.
Sometimes my heart breaks for him.
Sometimes – I let go.
It is 6PM and Papa is in a great mood! He is dressed, he’s been showered by the home health aide – which he described as the most humiliating moment of his life (of which I can’t believe) – and he’s shaved without nicking himself (with the aides help).
He lumbers slowly down the stairs, humming some old show tune…moon river?
“Papa!” he calls out to me. “Oopla, this cat, he goes crazy.” The cat races by his feet, by inches. “Eh, what’s going on?”
He makes his way to the kitchen, where I am cooking dinner. “Papa, this is a fantastic smell”. He closes his eyes and breathes in with extra aplomb. He smiles.
Without waiting for my response on anything, he chatters on for the next ten minutes. He covers the subject of grocery shopping, farming, Italian olive oil, winning the lottery, Vic’s barbecue, my daughter (the girl), young love, and winning the lottery. Winning the lottery is the glue of his thoughts.
“Papa, we will have a touch of, eh, you know…” He smirks and wiggles his eyebrows.
“You want some wine?” I move to pour us all a glass.
Papa comments on Vic outside at the grill. He comments on the birds at the feeder and the dogs begging for food at his feet. He comments on the grass and what I looked like last week mowing it on the John Deere. He’s never seen anything like it he claims, and laughs.
He makes his way to the French door to the back porch, he opens it and pokes his head out “Victor, you’re not burning it, are you?” He lingers with the door ajar.
“Papa, watch the cats” I remind him.
“Eh, what? Oh, yes, yes.” He closes the door, not fully latched and walks to the front door. I leave the boiling rice to close the french door more fully.
I hear the front door open. “Ah, what a beautiful evening. I love this time of day, no sun, but still warm air. It’s lovely.” I wait a few seconds, to see if he’ll close that door before we lose an animal out it. Nothing.
“Papa, do you want to sit outside?” I inquire.
“Yes? Oh, ok.”
I turn down the flame on the stove to help him outside, set up the cushions on the chair, get him settled. I return to cooking.
No less than two minutes later the door from the garage opens and Papa is back inside.
“Was it not good outside?”
“What? No, no it was nice, but it was too humid. The dampness…I don’t want to catch a cold.”
He wanders to the cabinet that is ajar. “Hmmm, these are nice.” He has a bag of chocolate covered raisins in his hand. A bag of candy I missed, when clean sweeping the house. Three nights ago, I had awoken to the sound of Papa downstairs. I called out, “Everything ok?”. He assured me he just needed a glass of water. The next morning I found a trail of white chocolate chips from the cabinet, across the kitchen floor, onto the rug near the steps. Papa was sneaking candy. Or anything sweet that passed as candy. At 2am. Papa has diabetes.
The next morning, I took a large grocery bag and threw everything I could find that had any sugar in it into the bag and hid it in basement near the pantry. I missed the chocolate raisins.
“You can’t have those, you know that.” I smile.
“Oh, why, papa?” He looks disappointed.
“Because you have diabetes.”
“Oh, really?” I’d think it funny, if he truly wasn’t surprised.
“Yes, and sugar makes it worse.”
“What a crazy thing papa, that an old man loses the ability to enjoy life.”
He heads toward the stairs. I call out and remind him I am cooking dinner. “Oh, ok. We eat soon?”
Like a child, he is everywhere, into everything, unfocused, talking nonstop. He is a distraction a minute. I bless the days his companion is here to contain him in some activity. I also bless the days he is happy.
Papa has drawn the line.
“I will NOT go the doctors without you. I will NOT go with that fat Puerto Rican, who can’t even speak.”
He does not mean the insult. He is angry and frightened and looking to hurt people. And to shock me into a fight.
I remain calm. After all, I am the adult here. With all my wits about me. At least I think I am.
“Bah fangul, why do I have to go. I am a man, I can say NO!” His inflection goes up in register and timber on the word no.
His fingers pinched together, he stabs his hand forward with each word “Why am I being treated like an old decrepit fool, like a child.”
“Well, Papa, you are acting like a child. The doctor needs to see your leg today, to see how it’s healing.”
“Why, papa (his term of endearment for me), I will go in and see a stupid nurse, who knows nothing, and they’ll look, mmm, ahhh, yes, a fat old broken leg, mah, cut it off!”
His breath is heaving in his chest now.
“The nurse, the Marcia, she comes here to me at my house. I don’t need to go anywhere.”
“Papa, you can go in to the doctors with Noni, or you can go in by ambulance.”
“I am NOT going in. Bah.”
“Ok, I’ll call the ambulance to take you.” I say with what I think is a tone of confidence and finality. I hope calling his bluff works.
“You do what you want. I’m not going.” He swivels to face his computer. He is supposed to be reclined with his leg up. I hesitate to mention this. I only have the strength for one argument this morning.
I leave the room. His nurse Noni is standing in our hallway. She gives me a look. I shrug my shoulders and walk downstairs.
Calling Dr. Thomas, I make Papa’s excuses. But Dr. Thomas, an old Italian woman herself, is just as ‘testa dura’. She says he must come in. Do whatever I have to do, but I must bring him in.
I cannot miss another day of work over this. It’s my teenagers all over again.
I go back to his room and announce the ambulance will be there at 10:30. My eyes dart to the corner of the room at the lie – a dead giveaway.
“Fine. I am not going. You waste your time.”
“It will cost you $165 whether you get in it yourself, or they strap you in.” I’m so far out on a limb now. I hope he folds.
He spins back toward me. “I’m not paying for it!”
“Fine, I will pay then, Papa.”
“Why, so you can win this argument? What is wrong with you, something is very wrong with you, the way you were raised. You cannot make people do things they have no intention of doing.”
I feel like a tyrant. “Papa, the doctor insists, I’m just doing what she says.”
“I WILL NOT GO, THAT IS FINAL!” He ends with a flourish of both his hands in the air and spins in his second hand office chair, back to his computer screen starting at it intently, as if something in there will rescue him, something he lost.
“Not even my wife treats me like this,” he mumbles. “Kick me out if you want, I will go back and live with my mother.”
I don’t bother reminding him that he has neither a wife nor a mother.
Noni steps in. She tries to reason with him that I only want to be certain he is ok. He ignores her.
“Ok, ” I get up off the bed ” I’ll go wait for the ambulance.”
He slowly turns in his chair….
“Fine, I will go with her.” He jerks his head to the kind and patient Noni.
Later that day, on my return from work, Papa is all smiles and light. He inquires as to my day. I apologize for us having ‘words’ this morning. He truly looks perplexed. “What words?”
Journey Toward Oz 