Thursday, October 3, 2013

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.

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