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."