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.   

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.

Howling

I keep a delicate balance between howling and showing respect. This story is about my mother...so I can't have distance, I can't feel comfort because someone else has had a harder time. I can't turn my back, I can hardly take a few days off. I treasure my time with her, in these twilight years of her life, and I also wonder, how long will this go on? 



Mom flying



I am in the situation unexpectedly. Yet it's all predictable. At 96, She's a widow. She needs help. I'm one of her eight children. I have the time to be with her. I am glad for that. I can support her, show her love, be her advocate, be the chief worrier about her, be her daughter while not having to work full-time. The process takes its toll on my marriage, on my time, on my mental health. Lynne feels disappointed by the trips we have had to cancel, by my being late for dinner when I stay and visit with my mother, by my many absences. I miss having more down time: time to hang out, time for our dog, time to write. I miss sleeping through the night without worrying: about her, about my decisions, about her $8000 monthly rent, about my future...




Mom with one of her teddy bears

  Yesterday my mother and I played music together. She gets to choose which songs. Christmas carols are among her favorites. I played the lap harp, a super simple stringed instrument like a dulcimer. Anyone could play it. My mother cannot. Because of her glaucoma, she can't see the strings. Plus, she no longer grasps how to pluck. So, she reads the words out loud ahead of each line. Then, we  both sing while I play the melody. I really had fun, and she did too. Before we knew it, the clock showed 5:20 pm, time to go to dinner.

My mother, Cooie, occasionally forgets my name, Sky. Sara, who stays with her for three hours every week day, says my mother sometimes calls me Spy. The other day, at the time I had told her that I would be there, my mother was waiting for someone named Coo. We don't know anyone named Coo. She has already forgotten that my sister Peg was just here for a week, that Peg stayed with her for major parts of every day, played the lap harp, tied her bib around her neck, pushed her wheelchair, bought her more coloring pens, and rode back from church on the bus with her.

My mother may remember what day it is, but sometimes she doesn't know if it is morning or night. One afternoon she took a nap, and when she woke up, she thought it was morning. She was furious that the kitchen served her dinner that night, when she was expecting her Rice Krispies.




The view out her window

Both her legs are in "knee immobilizers." Its been 10 weeks since she fell in her Assisted Living bathroom. An aide was standing next to her. She broke both her femurs just above her two prosthetic knees. For the first month she was in matching hip to ankle casts. She has graduated to removable braces, but she is not allowed to bear weight on either leg for the foreseeable future. To get from her bed to her wheelchair (her only two options), she is a "three person transfer." In other words, of the four or five aides on duty at one time at her long term nursing facility, three of them have to interrupt what they are doing to transfer her. They use the Hoyer lift, which is something like a crane with a cloth sling attached. They lift her in the air from bed to wheelchair or back. She calls it flying. Now that she is feeling better, she tries to tickle the aide with her toes.



Notice that I did not mention a commode, or a trip to a bathroom. Because of her non-weight bearing status, she must perform all bodily functions in place. This limitation led her to complain that she wished she lived back in Assisted Living where they allowed her go to the bathroom, not comprehending that her two broken legs, not the facility, limits her from using a bathroom. One of her greatest desires right now is to sit on a toilet.





Mom in church



 People ask how she is doing. She is doing well. She likes the attention she gets from her caregivers, she likes going to Bingo, she has a successful bird feeder right outside her window, and she has gotten back to her book of large print word find puzzles (deed, foreclosure, precipice.) She rarely complains, although she will admit that she sometimes has pain in her legs. She spends part of every day coloring line art posters. I frame them and hang them on her walls, creating a lively activity room atmosphere around her. Recently, we have been going to church every Sunday morning on the city specialized transportation bus.



When we go to the orthopedist for an appointment, the nurse croons how sorry she is that my mother has had such an ordeal. My mother doesn't see it that way. She doesn't use words like "ordeal." She delights in the pink fluffy socks that we put on her feet, particularly when they match her blouse. She likes the mocha shake that I buy her in the lobby of the medical building, and she is intrigued to find that underneath her braces, she is wearing full length cotton stockings. She gives directions to the bus driver.

 She also keeps telling me that she could fit in our new Prius. When I point out that she can't walk, she says she thinks that she could, and that sometimes she is just pretending. When I point out that the doctor says she can't walk, and that she will probably not ever be able to walk on her right leg again, she says, "Let's not talk about that."

One of the posters that she colored

People ask how I am doing. My answer is different. Or I should say, I have lots of answers.

I am grateful for so many things. The overwhelming support from our friends and community since my mother's fall has been a life lesson for me. Many gestures, however small or huge, have helped me survive this challenge.

I keep a litany in my head of all the things that I thank people for. The list is long. I would start:

If you have sent a card, if you have come to sing hymns with her, if you have sent a photo, if you have traveled from out-of-state, if you have called, if you have brought her purple footies, if you have complimented her earrings, if you have helped her put lipstick on her cheeks for rouge, if you have searched your jewelry box and found a pair of clip on earrings for her, if you have brought her a stuffed animal that sings Joy to the World, if you have given up your free time to sit with her so I could have a break, if you have brought your daughter to play violin for her, if you have brought her chocolate pudding, if you have brought a New Year's Eve party to her bedside, if you have listened respectfully when she was confused, if you have given her a hug, if you have told her you love her, then I am eternally grateful to you.

If you have given me medical advice, if you have helped me back off, if you have welcomed my siblings who have come to visit, if you have talked with me about God, then please hear my heartfelt thanks...and I know we have received many more gifts, including some that I didn't recognize.

Mom on New Years Eve

I am stressed but it's not the time spent that upsets me, it's not the sense of responsibility, it's not the constant concern that I carry around. I recognize that this situation is temporary. My mother is 96. In as many ways as my mother's situation asks extra of me, I remind myself that I am happy to give it to the person who raised me and spent far more years caring for me than I have spent caring for her. Plus, she makes me laugh; she gets me to sing Christmas carols in March. She invites me to sit in the sun in February, and because of her I relax in the back of the bus on Sunday mornings. I color posters with her in my retirement. She thanks me every day and when I overcome my lifetime of reserve to tell her that I love her, she says, "That's beautiful."

The answer to the question, "How are you?" is that I feel, up close and personal,  grief that life is hard. The "loving and gracious God" that I pray to doesn't guarantee anything, it turns out, for me or anyone. I write these sentences trying to avoid the words tragedy, hardship, pain, loss. Yet those are words that are in my heart, not just for me, but for all of us. Life is hard. That's how I am.