The Joys of Dementia

I bet you think this is going to be a short piece. 

My 97 year old mother has dementia, a result of lacunar strokes, themselves a result of high blood pressure, which means: her brain is like Swiss cheese.  Her dementia erases her short-term memory, and is working on erasing her medium term memory as well.  She remembers her childhood; in fact, she doesn't remember that this isn't her childhood.

Yet, as my brother said when he came to visit her recently, she is happy.  In fact, she finds delight many times a day.

On the day before Easter, she won a game of Bingo. She surveyed the prizes laid out on the table and she selected a headband with stiff blue sequined rabbit's ears as her prize.  She immediately put on her new rabbit acquisition, and enjoyed the effect so much that she wore them down to dining room for lunch also.  When Lynne reported this story, I panicked.

"I hope she doesn't wear them to church," I said, picturing me pushing her wheelchair into the sanctuary and her sporting rabbit's ears.

"I put them on the white bear," Lynne said. 

"Saved," I thought.

My mother has a pantheon of stuffed animals, all of whom are important to her.  She calls them the "windowsill kids." Four of them sing songs if you squeeze their left paw.  

The first one she got is a white bear with a round stomach and gossamer angel wings.  The wings wave as the bear sings "Joy to the World."  The second one is a brown bear holding a Jewish dreidel. It sings the Dreidel song ("I have a little dreidel, I made it out of clay, and when it's dry and ready, then dreidel I shall play") as it bends stiffly at the waist.  Her two favorites are a yellow chicken with a green hat that shuffles across the floor and stretches its neck while singing the "Chicken Dance", and a brown rooster with a Santa hat that sings "Deck the Halls" while it jerks its head from side to side.  

She watches each intently as they sing and perform, and sometimes applauds (as well as she can with her arthritic hands) when the act is over.  Tonight she shouted "Hurray!" She recently started requesting that I play the chicken and the rooster both at the same time.  No consideration of the season limits her joy from this personal zoo, so as I write this and Easter approaches, we will still be piping Christmas carols into the room. Meanwhile, my sister got my mother three little stuffed birds that each sing a distinct bird song when you squeeze them, as well as a little mouse that shouts, "I like you" about forty times in different ways when you squeeze its stomach.

I worry about her feeling lonely, which she might be at times, but she compensates. She thinks that other people live in her private room with her.  She may be referring to the stuffed animals, although at first I thought she meant her children or her sisters. She frequently asks if the others are coming with us.  By now, I just answer honestly.  "No, Mom, it's just us." Sometimes she tells me not to turn out the lights when we leave so that the others will be able to see.  She says "Goodbye" to them as we leave.  We were sitting in the dining room and she asked where they were going to eat.  Sometimes when we are going over the menu for the day, she waits for them to say what they want to eat.

"You don't have to worry, Mom. They are being taken care of," I offer, not bothering to try to explain reality as I see it.

"I worry about them," she says.

"I know you do," I reply.

She has a choice about her meals, and often she doesn't like what's on the menu, particularly if the food is named tacos or Kielbasa.

For her, the alternate meal is better and she always makes the same choice: Cream of Chicken soup and a peanut butter and jelly sandwich.  One of the aides told her that the cream of chicken soup is made by someone’s Grandma, so she still refers to it as Grandma’s Cream of Chicken Soup, a very lofty title for what I am pretty sure is an instant mix, which produces mostly a thick broth with three or four little pieces of dehydrated chicken in it.  She starts out eating the soup with a spoon, but after a few bites of getting most of the spoonful on her bib, she switches techniques and picks up the bowl with both hands and brings it to her mouth. She often has trouble swallowing food in general, but soup goes down well. At the end, a few pieces of chicken are left in the bottom of the bowl, and she says with a smile, “Look, I got some chicken,” as if these pieces were planted there specially for her, and as if they are a new discovery each time.

But her true delight is the peanut butter and jelly sandwich.  She smiles as soon as the plate is placed in front of her, and she picks it up to see what kind of sandwich she has received (as if it is ever anything else.) Then with a smile she holds it out to show me and and raises it up to show her table mates. "Look," she says with a grin, "Peanut butter and jelly." Her table mates are usually silent, seriously contemplating their meals (lifeless doughy pizza or Hungarian goulash or once again, inedible dried pork.) 

On Sundays after church, I push my mother out the front door to the WTA Specialized Transit bus. I wait while she is loaded on the bus and then strapped in multiple ways, some to keep the wheelchair from moving and some to keep her in the wheelchair. When the driver is ready to depart, I step off, reminding my mother that I will be at her place when the bus drops her off, and then I drive in my car to the parking lot of her facility and wait for them to arrive.  When the bus pulls up, I get out of my car and stand where she can see me, and wave at her.  She has a big grin on her face, and says, “How did you got here so fast!”  Every week, the same routine. But she always has a big grin and a look of happiness on her face just because I am there when the bus arrives.  I feel like someone special, and that feeling keeps me coming back.

Sometimes when I am describing my mother's status to someone who doesn't know her, after I go through the long list of maladies and disabilities, I say, "But she is happy."  She has never brought up the subject of living too long,  nor complained about her limitations.  "In some ways, it is harder on the caregiver," I say, referring to the chronic worries that I carry around within me, the chronic grief I feel watching her decline. She lost the memories of another span of her life last week, so she doesn't remember the town she lived in for 45 years, her marriage, most of her children, the retirement village she moved to or the seven years she spent in Florida. 

On Saturday, Jerri and Lynn (two good friends) brought their little long haired dachshunds over to my mother's for a visit.  I had bundled my mother up in a blue fleece jacket and covered her legs in the red blanket and parked her in a protected place where she could enjoy the sun but be out of the wind. I also brought Winnie, my dog, and borrowed white plastic folding chairs from the dining room to set up for us outside, where the four of us plus three dogs made a pretty good party.  We visited for a while, Jerri telling my mother about the single level house that they just bought, and how she hoped that my mother would come for a visit.  My mother was pleased to hear that the new house had a ramp so that it would be easy for her to get inside.

After a while, conversation wound down, and we were all present to the welcome sunshine filtering through the budding trees, the wind gently fluffing up the boughs, the fresh air and the deer grazing across the street.  In the idleness, my mother raised her right arm from her lap, and began to tug at her sleeve, raising it enough to reveal the nine bead bracelets that she was wearing, that in fact, she wears every day, and has for more than a year since the day that the Activities department set out bowls of colorful beads so that she and the other residents could string their own elastic bracelets.  Jerri had been there helping her make them, but my mother extended her arm to show them off now like they were brand new and the crown jewels as well.  Jerri admired them, commented on the different color schemes, and then sat back in her chair.

"Ahh," Jerri said as she exhaled, perhaps feeling release from the crazy month they had trying to sell their house. "To delight in the simplest things."

Humor's Healing Art

This happened last month. Bonnie, the retired WWU professor, herself grey haired, brought her two therapy dogs to the long term care center where my mother resides.  With the residents circled around in their wheelchairs, she put her eager Australian Labradoodles through their paces, rewarding them with minuscule treats for some pretty unspectacular tricks: catching balls, sitting, lying down and occasionally doing a “high five.”  The residents’ responses are muted. They show their enthusiasm primarily by showing up for repeat performances once a month.  Some doze, some watch silently, and a few smile and make comments. 

One of the blond fluffy dogs was excited about the tricks, or more likely, the treats, and started barking, short woofs directed at his owner.  We were all focused on this activity in the center ring when I heard more barking coming from elsewhere in the room.   I looked around and realized one of the residents was barking back to the dog, and simultaneously, that it was my mother.  She was trying to catch his eye (was it JuJu or was it Itzy?) and was doing a pretty darn good imitation of his bark. I was surprised because my mother has never been much of a barker.

Almost all the residents have some degree of dementia.  Few of them have peer conversations.  Some may participate in “assisted” conversation with a staff member or family member.  My mother’s verbal skills seem to recede overnight, or after she has been alone for a few hours.  Her sentences are halting, and her words may be far off the mark of what she wants to talk about.  I have phone conversations with her where I can’t decipher the gist of her thought—something about a bag on the floor, and something spinning, somebody hungry, and then I get it.  She is asking me to fill the bird feeder that hangs outside her window. 

For no medical reason that I know of, my mother has lost the part of her brain that censors what she says.  Or that tells her not to make noises.  She vocalizes nonstop, mmm hmmm, noises that my sister thinks are self-soothing, but that others find irritating.

This morning, my mother read me the joke from the daily schedule.

Q: Why did the bird go to the doctor?

A: To get a tweet-ment.

Last week, we were in the ophthalmologists’ waiting room. We joined the other grey haired patients who were quietly reading magazines or staring at the TV monitor imparting education about cataracts. I handed her a People magazine.  She carefully turned page after page, commenting on how pretty the girls looked, and reading out loud the ads, the captions, the subscription policy (until the print got too small) and then the article about the actress who just landed the part of Samantha on Sex and the City. In the clear voice that she used to read the headline, my mother read the first line to the waiting room: “’We got straight to business,’ she says of her first day on the New York set. ‘I was in underwear and pasties.’” At that point, I leaned over and quietly suggested that she read that one to herself.

She has always loved to read and now reads out loud whatever she sees.  Recently, I handed her a new sweater still encased in a plastic bag, and she immediately said in her halting voice:  “Warning: To avoid danger of suffocation, keep this plastic bag away from babies and children. Do not use this bag in cribs, beds, carriages, or playpens. This bag is not a toy.”

“Mom,” I said to redirect her attention when she was done, “I got you a new sweater.”

This morning I dialed her phone number for my usual 9 am check-in call. She had trouble getting the phone to her ear.  I could hear her in the background saying “Don’t hang up, don’t hang up” as she struggled to untangle the curly cord and get the handset in place.  I said my hello and asked how she was.  She started out saying “I’m not talking to anyone.”  I considered whether she was mad or just alone. When I couldn’t deduce her meaning I asked where she was. 

“I’m in my private wheelchair.”

“Are you dressed?”

“Yes, I’m dressed in a horrible brown skirt. I didn’t want to wear it.”

“Do you have your call button?”

“The telephone wires are tangled up around the wheelchair.”

“Do you have the call button? The red button on the cord that you push when you need help?”

“Yes, but I can’t reach it.”

My stomach tightens. “Is it too far away from you to reach?” The aides more than occasionally leave the call button out of her reach.

“No, I can reach it but I can’t bring it up to my mouth.”

The call button is just that: a red button on the end of a cord.  When the button is pushed, a light lights up in the hall.  I imagine that this simple system has been in place many years at this facility, as I also imagine that it won’t be put to rest until the maintenance guy can no longer jerry rig fixes, or perhaps DSHS mandates an upgrade.  Whereas most hospitals have a speaker system which allows for two-way communication with the patient, this one has no microphone or speaker. 

Step one: Button is pushed

Step two: Light lights

Step three: (In an ideal world) Someone notices the light

Step four: (Even more ideal) Someone chooses to respond by walking down to her room.

The capabilities of this system are much less than my mother believes.  After she pushes the red button, she bends her white head forward and holds the button up to her mouth.  She very courteously announces her name.

“This is Cooie Hedman in room 120,” she says into the button, and then continues with what it is that she wants.  “I need someone to help me get cleaned up.”

Even the social worker burst out laughing the first time she saw this behavior.

“Don’t laugh,” I said, “She is completely serious.”

Nothing that I or anyone else says to my mother helps her realize that they can’t hear her. “I have to tell them what I need,” she says with finality. 

If only there were a compassionate capable listener at the receiving end listening to her needs when she announced them.

I picture my mother reading this passage in the future.  She’s in heaven, her faculties are restored and her legs are working perfectly.  She is surrounded by loving people (as much as she wants).  She gets PB&J on white bread whenever she wants, and chocolate ice cream for dessert every day.  Her two youngest ones, the ones she asks about every day, will be with her, as will her Daddy, the person she calls for when she’s delirious. She won’t have to choose between Bingo and massage, since she can do them both at once if she wants.

She won’t have to wait for someone to push her wheelchair down to the dining room, or put up with showers given twice a week in a cold room by strangers.  She won’t have to struggle to figure out what day it is.  She won’t have to depend on any technology. She will feel buoyant, freed of the grip of gravity on an aging body, and she would be rich, rolling in money, able to buy all the pleasure that money can grant.  She will read this passage with perfect eyesight. 

She'll know what a great person she is, and know how much we admire her enthusiasm for every day.  She'd know in her bones that we love her. 

And her daughter, her daughter will exhale, knowing that her mother is OK.