This is the promised continuation of my October 5 post about the elder care season of my life. [originally posted October 18, 2010]
The short version
of the story is that on October 1, I spent a day with Dad in day care.
Later, when I shared observations with Mom, we realized that although
Dad's perceptions don't always come across in the right words, he is
expressing the true situation. Also, his brain synapses may no longer be
fully firing, but his heartstrings flex, flutter, and flame as always.
(Is this true for all people with Alzheimer's? I wonder.) Bottom line:
this particular day care center, as high-quality as it is, will be death
by depression for Dad at this stage. Sooner or later, we'll need to try
another solution.
If you'd like more details of my day in adult day care, here's the long version of that story.
Dad dreads day care. Here's a typical airspace filler between the two green leather recliners in my parents' cozy den:
"When will I be sent to that place again?" Dad asks Mom.
"Tuesday," she gently answers.
"How many days till I have to go there again?" he asks a few minutes later.
"Today is Friday, so four more days." She adds with a teasing smile, "Are you that eager to go back?"
"No, I just want to know how many days I have to be free before I have to go back."
It breaks her heart. She's trying adult day care to give Dad some
stimulating activity and social life and to give herself a much-needed
break from 24-hour caregiving. So far, his major complaint is, "The
people there are patients, and I don't want to be around patients." What
exactly does that mean? We were soon to find out.
I
supposed maybe it was difficult for Dad to converse with strangers.
Because of the Alzheimer's, he might not have confidence to initiate
conversation. Also, if Dad is indeed higher-functioning than the other
"patients," perhaps he would find a sense of purpose in helping them do
things. (He was a high school teacher, and I often tell him I couldn't
have made it through high school without his help with my homework. He
smiles aw-shucks, and I add, "It's the truth." He may be the most
patient explainer I know, though my brother is a close second.) I
volunteered to spend a day at Cherished Place with Dad to try to make
this day care arrangement work, for both my Mom's and Dad's sakes.
[Cherished Place is the real name of a fine, caring adult day care
center, but I have changed the names of people we met.]
On
Friday, October 1, my mom checked her two "kindergarteners" into school
and left for a quiet day at home. Sporting standard-issue name tags, we
found easy chairs at the back of the main room to watch a Wii Bowling
activity. I am using the word "activity" loosely. We
sat between Bill, a glassy-eyed, mousy-haired, middle-aged man who
smiled but seemed incapable of speech, and Caroline, a bright-eyed,
golden-haired, middle-aged woman cradling a baby doll.
This main room was set up like a living room. Two rows of 10 green
jungle-print upholstered wing-back chairs faced each other with about a
10-foot aisle down the center. A large flat-screen TV hung on the far
wall. Twenty or so people sat vacantly staring and definitely not
clapping whenever the staff cheerleader cheered the Wii bowler, “Yay,
Lottie! Everyone clap for Lottie!” I gave Lottie a lot of credit. She
may have been almost the only person in the room who could have balanced
while swinging her arm in a bowling motion. I later tried a Wii tennis
game and although I kept my balance, I missed almost every ball because I
couldn’t coordinate in my brain when to press the front and back
buttons of the remote. So Lottie may also have been the most mentally together person in that room!
My dad got up to go to the restroom, and a tall, man with a buzz-cut
whizzed from God knows where into my dad’s chair. I politely explained
my dad had been sitting there.
“That’s my chair,” Sal snarled.
“Well, my dad is coming right back from the washroom; he was sitting there.”
“It’s my seat. I like to sit there. Tell him to sit someplace else.”
Even adult day care centers have playground bullies! I got up to ask a
staff person if my dad and I could work a jigsaw puzzle someplace else.
In a small room off the main living room, a.k.a. bowling alley, we
spread out a 33-piece children’s jigsaw puzzle of a world map on a round
table. Dad’s eyes brightened as he turned all the pieces face-up. The
puzzle pieces had vibrant colors and a wooden thickness. Each continent
and ocean contained images of its native animals and sea life. Sometimes
Dad didn’t at first see that logically, a whale’s tail would go with a
whale’s head. And I even wondered if he noticed that all Asia was deep
green, so those pieces would all most likely go together. His best
strategy was to see how shapes fit together. I am not sure I could have
done that; I had to keep looking at the completed picture on the box
top, which he hardly glanced at and didn’t seem to see its relationship
to the scattered pieces. He had seemed genuinely eager for this activity
and was very proud of his accomplishment. He wanted to leave his
handiwork out on the table, so we did.
Together, we pushed the colorful world map to the opposite edge of the
table, and Dad began turning up the mostly black-and-white pieces of a
United States puzzle on the open table directly in front of him. I
remembered my parents drilling us kids on state capitals and thought
perhaps the capitals on this map would trigger my Dad’s memory of them.
That proved untrue, however, although in this puzzle, Dad seemed to have two things going for him: his facility fitting shapes together and his reliable memory of where in the country the states fall.
When he and Mom work jigsaws on their dining table, Dad will sometimes
comment, usually one of his trademark quips. For example, “You’re really
good at ‘having fits.’” At Cherished Place, he was relatively silent.
When someone wandered into our puzzle room from the bowling game, I’d
introduce the person to Dad and make small talk, but Dad’s responses
were minimal, and the person would amble on. One guy, Danny, came and
stayed.
Danny wheeled into the puzzle room and maneuvered into a spot at the
table on the other side of Dad. I cheerfully made the introductions, and
Danny looked up and waving his hand toward the ceiling, offered, “I did
the electrical work here. My father fixed cars. Sometimes he popped the
dents out. Sometimes I did that too. My dad lives in Florida. He’s
retired now.” I inquired if he meant he used to do the electrical work
at Cherished Place. He said yes, looked up again and waved a limp hand
at the ceiling. “I did the electrical work. My father fixed cars.
Sometimes he popped the dents out. Sometimes I did that too. My dad
lives in Florida. He’s retired now.”
My dad stated, “If you did electrical work, then you were an
electrician.” Danny repeated his whole spiel, this time adding,
“Accident. Brain injury. In a coma one two three four days. Four days in
a coma. I didn’t expect that.” As he counted the days, he shook that
number of fingers down toward the floor. When he finished the spiel, he
hung his head, wagged it, and said, “It’s okay,” in the soothing,
sing-song tone a dad might use with a toddler whose Tinker Toy tower just
collapsed. While talking, Danny quickly placed puzzle pieces in their proper
spots in the map as though he didn’t even have to think about it.
Meanwhile, Dad and I were struggling, I because this puzzle did not have
a box with a picture on it, and Dad because some states did not fit
where he thought they should go. Danny bailed us out by immediately
grasping that Alaska, Hawaii, Puerto Rico, and parts of Canada were
inset in framed boxes in the puzzle’s corners instead of where they
really are on the map. His hands moved swiftly to create these inset
boxes, which Dad and I then placed in their proper corners. When Danny
put together the Hawaiian islands, he tapped the pieces and announced,
again counting on his fingers, “Hawaii. My honeymoon. One two three four
five six seven eight nine days off work for my honeymoon.”
How the subject of student drivers came up, I don’t remember. I proudly
told Danny that Dad had been a driver training instructor of high school
students. Danny explained that his daughter just got her driver’s
license. We learned he has two teenage daughters and his wife works.
“She types,” Danny explains rippling fingers in the air over an
imaginary keyboard. “I used to bring it in. I did electrical
work,” he says with the now-familiar hand brushing the air toward the
light fixtures. And then his resigned head wag and “It’s okay” and
sweet-spirited laugh. I allow myself to look more closely at Danny. His
hair is graying, but his face is smooth. He’s probably 10 to 20 years
younger than I. He goes home after each day in Cherished Place to a wife
and two teenage daughters, who lost him one day in an accident. I hope
they, too, have come to a place where they can say, “It’s okay” and
laugh.
We finish unifying the United States just as cherished folks begin
hobbling and wheeling into the dining room adjacent to the living
room/bowling alley. Dad and I sit in molded plastic chairs at a round
white table. We enjoy canned pears, then opt for delicious salmon and
mashed potatoes with stewed tomatoes. Dessert is yummy-looking ice cream
studded with Oreo chunks. Oooh, I think, Dad, a.k.a. Cookie Monster,
a.k.a. Mr. Ice Cream, will love this. He refuses it. Indeed, he has eaten the meal in sullen silence.
Our table mates are two barely functioning men slouching in wheelchairs
and a large, loud, able-bodied man in a white T-shirt. One of the quiet
men sports a U.S. Navy WWII Veteran cap. Great potential for a
conversational bridge since Dad is also a WWII Navy veteran, I think.
But then I see that the man’s dull eyes gaze only at his plate. I watch
him saw his mashed potatoes with the side of a spoon and shakily shovel a
forkful between sagging lips. He holds his fork handlebar-style like an
infant first learning to eat. It takes all his concentration to lower
his bottom lip and aim the fork. I abandon the idea of engaging this man
with my dad and turn to quiet man number two. Due to his severely
slouched angle and poor hand control, most of his lunch sits in dribbles
on his belly. Cherished Place has extra Depends adult diapers on
washroom shelves; I wonder they don’t provide bibs. He doesn’t look up
either, so I turn to the larger-than-life Butch to chat in conversation
that could include my dad.
This does not work well, because Butch is the stereotypical Marine drill
sergeant. Almost before we have finished our pears, Butch snatches our
bowls and trots them into the kitchen. Then he stands, feet planted wide
and fists on hips; facing the whole room, he bellows marching orders,
“Five four three two one” and proceeds to clear fruit dishes off the
nine or so other tables. When he sits back down, he explains to me,
“It’s my job, ma’am.” Then he leans toward Dad and pops out a poem,
which sounds like it might be a real, classic poem. I compliment him on
memorizing it, and he snappily, smilingly brags, “I’ve got lots
more of those.” Then he hops up again to face his audience.” This time
he does a little clapping dance as he sings out, “Swing your partners
round and round …” and promptly sits back down. I ask if he was a square
dance caller or auctioneer before retiring. His withering glance made
me think, “No, of course not, you really were a Marine drill
sergeant.” My dad steadily shrinks back from conversation with Butch,
and I’m beginning to, too. The topic of Bunco comes up, and I remember
one of the staff telling me that even though my dad has never played it,
he’d probably catch on quickly because it’s extremely simple and
involves numbers, one of my dad’s strengths. I ask Butch if he might be
able to show Dad and me how to play Bunco after lunch. Folding thick
arms across his chest and looking sternly at me, he booms, “I teach all
the games, ma’am.” Dad desperately looked at what he has recently begun
calling “the arrows” on his watch. Then he and I pushed away from that
table with equal enthusiasm.
The next planned activity was karaoke, so Dad and I hustled into the
living room to grab some wing-back chairs in the main area. While
waiting for the music guy to set up, we kicked a large beach ball back
and forth with the awake occupants of chairs opposite us. Bernard, the
man on the other side of Dad, said he had played soccer in Italy, so I
tried the sports conversation angle, talking professional teams and
leading to Dad’s tennis passion and trophies. Dad watched Bernard’s and
my exchange as though it were a tennis game but said nothing. From the
other side of Bernard, I heard, “I did the electrical work. My father
fixed cars. Sometimes he popped the dents out. Sometimes I did that too.
My dad lives in Florida. He’s retired now,” and then the
Tinker-Toy-toned “It’s okay,” and I knew Danny had wheeled himself into
our row of chairs to await regular Friday karaoke.
The weekly music guy was wonderful, but karaoke this was not, since only
he sang. He couldn’t persuade anyone else to do so, even though the
songs were old Dean Martin and Frank Sinatra hits they all would have
known backward and forward in their heyday. Plus, the lyrics showed on
the video screen. The music guy handled a heckling comment from
playground bully Sal with more grace than I would have had. He called
out, “I like you, Sal!” to a few chuckles from the peanut gallery.
Some people mouthed the words to “Mack the Knife” and “You Are My
Sunshine.” Some tapped their sensibly shoed feet. The lady across from
me smiled at me in a familiar way, but I couldn’t place her anywhere in
my past. She dozed a bit, waking every so often to mouth lyrics, but
when her bottom lip fell down, her bottom teeth stood up. Meanwhile,
Caroline now had her baby doll on her shoulder. Her hand “burping” the
doll and her knees gently bouncing to the beat, Caroline approached the
music guy, then danced around him and eventually disappeared into a
small side room, where I noticed other women sitting with dolls. One
bounced a doll on her knees to the rhythm. One koochi-kooed a little
stuffed monkey into the tummy of her doll. Music guy ended with a
rousing “God Bless America,” which many people waved their hands to, but
few sang the words.
Mid-afternoon, when I had to leave, Dad wanted to walk me to the door. In
the quiet of the hallway, he asked when Jean (my mom) would be coming
for him. I said in less than an hour. He wondered if she’d forgotten
about him. I reassured him she would pick him up soon. I said I’d
enjoyed my time with him. In truth, I wouldn’t have traded one moment of
that golden day for any treasure of the world. His eyes teared, and he
explained, “I just never envisioned myself living like this.” He pointed
down the hall toward the living room, where the music guy was packing
up his stereo and patting the shoulders of various cherished folks. “I
just want to live at home with my family, and I don’t understand why I
can’t.” I mentioned that Mom worries about him being home alone when she
goes out to buy him food, and if he’s at Cherished Place, she doesn’t
have to worry about him when she’s at the grocery store.” I can hardly
believe I’m simplifying and shrouding the issues like this. This is my father. I’m his child. But his world has become as simple as a child’s.
I couldn’t bear to leave him there, so I took him back into the dining
room, where I had noticed some seemingly higher-functioning people
earlier. Introductions all around. One woman welcomed him and even
noticed his shoelace was untied and knelt to tie it before I could. She
reassured me he’d be all right with them. So I left Dad there with them.
I was hopeful until I saw his shoulders sagging forward. Sigh. As I
walked outside to my car, I passed a school bus just outside the
Cherished Place entrance. It was painted navy blue with a brightly
painted Noah’s ark and animal pairs, some sheep and other figures,
including Jesus saying “Let the little children come to me.” Luke 18:16.
