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."

Close Up

Her swollen legs rest on a white bed pillow, which is turned sideways to soften contact with the leg-rests of her wheelchair.  Usually her legs are elevated, almost straight out in front of her, although we can lower them when needed.  Actually, not "we." She can't lower them.  I can lower them, as can any other of the many people who provide care for her every day, every week, in these eight months since she fell and broke both her femurs.

Her legs look slightly “off”, but she is comfortable. Her right leg is broken both above and below the knee.  With her right knee permanently liberated from the bone both above and below it, and the left femur only partially bonded with the left knee, I have to be careful when I reposition her legs so as not to zig her leg into the "greater than" sign, which they easily do.  Even the ombudsman had trouble containing her squeals of dismay when I lifted my mother's skirt to show the damage from her fall.

She loves the pigeons that voraciously raid her bird feeder within minutes of filling it up.  I dumped black oiled sunflower seeds in it on our way to lunch the other day, and by the time we had endured the interminable meal process and returned to her room, the feeder was empty.  I distract my mother with the offer of a game of solitaire, which we both enjoy.  I shuffle and deal the cards, as her shoulders are no longer up to lifting anything and her trembling hands make it difficult to pick the cards up anyway.  She remembers the rules pretty well: black cards can only go on red cards, except when you are piling cards on the aces at the top.  I wait for her to tell me the moves, which she does by waving her finger and saying "the 2 of hearts can go on the three."  Her play is slower than mine because of her tunnel vision. I turn three cards from the stack in my hand and lay them down where she can see them, and then wait for her response.

I like sitting close to her playing solitaire.  I pull my chair right next to her wheelchair, having cleared off the bed tray to make room for our game.  I reach across her lap to deal the cards. Sometimes we win, sometimes not.  I usually play at least a couple of games if we don't win the first one.  The other evening, I was ready to go home to eat dinner with Lynne, but we had lost both of the two games we played. I was gathering up the cards to put in the box. She said, "Let's do one more," so I sat back down and dealt the cards out again.

When we win, she smiles a big grin.

Besides her bird feeder, solitaire, Bingo and ice cream, my mother finds delight in lots of things--the wind turning the leaves upside down, the joke that is printed on her schedule of activities for each day, and the songs we play her on the lap harp.  Her favorites are "She'll Be Coming Round the mountain" and "Home on the Range", which we sing often together. My voice is soft to avoid anyone hearing me and her voice is soft because it has just gotten weaker with age.  We croon together.  She's willing to sing the same verses over again, which sometimes I do just to prolong the moment, the experience of having a shy and quiet kind of fun of our own.  Sometimes the residents who are wheeling themselves down the hall pause outside her door, lingering, listening to our moment.

She goes to an exercise class every morning at 11 am, except on Sundays, when we go to church together.  Actually, she goes to church on the WTA bus, and I meet her there.  The WTA specialized transport bus allows her to leave the facility and join in the life of our larger community, for which we are both grateful. At church I hold the hymnal for her and run my fingers under the words when I sense that she has gotten lost, or to keep her from getting lost.  That's our other musical time together.  When a musician plays the violin or plays the piano, she watches with her mouth open, her eyes focused on the performer, absorbed in the sounds filling her ears.  During communion, she doesn't usually sing, instead watching the stream of people who pass us by on their way back to their pew.  A few have started to give her a squeeze or a wave as they go by. She has always been a people watcher.  Church gives her a chance to get a good dose of people to watch.  She often comments on them, particularly kids with green sneakers or men with fat stomachs.

I tell people the story of how she came to be living in long term care, and they express sympathy for her situation, but really, she doesn't feel sorry for herself.  Her dementia protects her from grasping the bigger picture: that she will never be able to bear weight on her legs again…that she is now entirely dependent on other people for every physical need…that she has used up all her money...that she can't remember most of her life, except for her childhood.

Sometimes she calls me at home, and asks me to come over to help her, like to get her dressed in her nightgown and ready for bed.  I ask her if she has pushed her call button to ask for help and she doesn't know what a call button is. Sometimes when I walk into the building where she lives I can hear her giving short whistles.  That's what she does when she wants help and can't remember about the call button.  The staff walks by her room and ignores her.

The reality of her life is hard on me. I worry about her being left alone without access to her phone or her call light.  I worry about the aides remembering to put her leg braces on before transferring her with the lift to her bed.  I worry about every new symptom and every new financial downturn. 

She gets upset because they serve her dinner at breakfast time.  That happens when she takes a nap in the afternoon and wakes up thinking it is a new day.  She is expecting her Rice Krispies and banana and instead she gets Cream of Chicken soup and a tuna salad sandwich.  She gets furious, even when I explain that it is evening and everyone is having dinner.  Then she asks if she has to change her clocks to adjust to this new time and I tell her, no, your clocks are correct.  It is 5:30 pm, not 5:30 am.  Sometimes I can get her back on track, not every time.

The staff dresses her in the morning before she gets out of bed, so often she is still asleep while they are dressing her and wakes up wearing clothes that she didn't want to put on.  Once she is in her wheelchair, she has to wear what she has on, despite her opinion about the outfit.  She favors her long floral skirts, particularly ones that have a built in petticoat.  Last week, she pointed out that on the front of our church bulletin, it said, "Sixteenth week after Petticoat." 

"No, Mom," I said, "after Pentecost." 

If you are reading this and have gotten this far, I thank you.

If you are one of the staff who works all night and dresses my mother in her bed, I thank you.

If you linger outside her door to listen to our singing, I thank you, and I invite you in.

If you volunteer your time as an ombudsman, I thank you.

If you understand what I am saying, I thank you and appreciate you.

If you know a worse story but are still willing to honor mine, I extend my gratitude.

If you are my mother and read me a joke when I call in the morning, I thank you and I love you.