Kiss me a lot

"I took a man dancing," she told me with a smile the other day, gesturing at the wall.  I look around to see the picture my 98 year old mother has colored, now displayed under some photos of her as a child.  Two figures are frozen in a classic ballroom dance stance.  The man is colored with red and the woman in yellow.  Around them, the few simple objects are painted also.

How lovely a thought for her to hold, she who no long can walk, she whose husband died many years ago, she who only leaves the institution on Sundays when the bus takes her to church.

On the windowsill of her room near the picture sits a stuffed lovesick cow wearing two strands of diamonds and bright red lipstick.  At my mother's request I press the button on its hoof. The cow sways as it croons Bésame Mucho" (Kiss me a lot) in a tremulous voice,  its bottom jaw quivering as it sustains the first syllable of "Moo-cho."

When she meets you, my mother shakes your hand and then tells you its temperature with a big grin.  "Oh, your hand is so hot," she says, exaggerating the last word and bringing apologies or a quip about a cold heart from you.

Sometimes she is enraptured in music, sometimes in the middle of the rapture, she falls plum asleep.

Kindness all around

We three were walking on the narrow wooded trail that wound from the beach through huckleberry bushes back to our campsite in the forest. 

The beach had stretched as far north and as far south as we could see.  Lynne and I and our faithful canine companion had been mostly alone, only occasionally passing walkers heading in the opposite direction. 

They appeared first as dots on the beach, almost obscured by the mist.  One figure alone at the water's edge parted into two.  A couple with two dogs approached us, the two dogs turned into three, then offered this friendly interchange.  "Yes, dogs were OK off leash, we like them to socialize," the young woman had said before disappearing forever behind us, leaving us alone as we headed into the sweep of the coast, its arc ending with hills rising up from the sea, the edges of the dark land masses fading as they receded into the grey sky.

Once we reached the limit of our walk, we found a log and sat down to snack and offer water to our dog, Winnie.  She turned our attention from sand patterns, frothy waves, the constant roar, to a more local focus--her delight in the sand, her excursions into pools of water, her frolic with the stick I threw for her, the puppy within expressed as she shook the stick and tried to break it apart.

Dog companions were popular at that place, that September afternoon, when presumably families with school age children were far from the coastal scenery, buttoned into their responsible lives, leaving campgrounds and ocean vistas to the childless set--whether grey haired or not, many of whom made up for the absence of children by inviting a dog into their lives.

This elderly couple we met on the wood trail was like that.  The white haired woman --I'd put her in her late seventies-- was leading a small overweight white poodle mix and was followed by her wispy haired husband, probably in his eighties.  His legs, pink skinny legs, were bare although he wore wool socks with his sandals, per northwest fashion.  To my surprise the show wasn't over once we shared pleasantries with the woman and her dog.  The man stood aside and held out a present for Winnie.  "Just a small one," he said to our dog, holding out a little dog biscuit shaped like a bone but the size of a paper clip.  She hesitated to take it from his open palm. Then he produced a bigger dog biscuit and her reluctance vanished.  She gulped it down as he grinned, and so did I at this unexpected treat for her.  This man had thought this through ahead of time--equipped his pockets with multiple sized dog treats, and sensing the occasion to share his wealth, had them ready for Winnie as we walked by.

Not the first expression of kindness recently...  Dawn, the ranger cheerfully accommodated our move from one campsite to another (further from the noise of the road), then just as cheerfully refunded our money for the last two nights.  The host at Beachside who chatted us up about campers and complimented our rig.  The ranger at the new campground who pointed out that breakfast was waiting for us--huckleberries were ripening right next to where we parked our camper.  The Canadian woman who shared the sunset with me last night, and of course, Lynne who prompted me to go watch the sunset in the first place, who held back in playing Scrabble to soften the loss, and made us chicken curry for dinner.  Kindness all around.

Wonder

           

            "Why am I in a wheelchair in all these pictures?" she said.

This was my mother speaking.  She was sitting in her tilting wheelchair, her broad hips filling the space between the armrests, her head pushed forward by her curved upper back, her legs in front of her resting uselessly on black metal supports.

"Because you ARE in wheelchair," I said out loud, lamely, suppressing my inward alarm at her lack of comprehension.

Her yellow peasant skirt with mirrored sequins was pulled down to cover her legs and as much of the metal leg rests as possible.  Below the hemline appeared the beige socks covering her ankles and feet.  Although she can bend her knees and her ankles, most of the time the weight of her lower limbs drapes lamely. Her legs are workers without a job.

When she fell and fractured both her legs a year and a half ago, the orthopedists told us that these were life ending injuries.  Their prediction was inaccurate.

"In this situation, amputation might be appropriate," the seasoned orthopedist had said, talking over her head directly to me. I had recoiled from the thought of his capable hands cutting off my mother's legs.

"No," I said to him. Inwardly, I thought, "We'll make do with these.  We'll do the best we can with what we have."

She has done the best she can.  Dementia protects her from grasping her situation.  I suffer from the sidelines.

            "Do you have a car?" she recently asked my visiting brother. 

"Yes," he said, pointing to his rental car out in the parking lot.

"Can we go out to eat?"

He was heartsick at the request.

"No," he said. "I can't get you in my car."

"I can fit," said my mother.

"It's not that you can fit, it's that I can't get you in the car because you can't stand," he said as gently as possible.

"I can walk," she shot back.  "I've seen a picture of me walking."

I wasn't surprised when my brother told me this story.  She used to really like going for a ride.  One time she told me that she could actually walk, that she was just pretending that she couldn't.

            "Does anyone else use that bathroom?" she asked me the other day when we were in her room. 

"No," I replied.  "That is only for you."  I waited, then added, "Have you seen anyone else use it?"

"No," she said, "but I might need to go in there.  I have to go to the bathroom."  My mother hasn't been on a commode since she broke her legs.  She relies on adult diapers and the willingness of her aides to clean her up.

"If you need to go to the bathroom," I said, "push that red button," pointing to the call light at the end of the cord that hangs from the wall in her room.

        I've taken to jotting down notes: snippets from wise conversations and sermons.  There is no end to this story, so I land here, looking for wisdom.

Beginnings>endings>beginnings

This time with your mother is a blessing.

Love is an act, something that you do.

Love is hard, laborious, something you work at.

A difficult task needs...

I didn't write down the end to that last sentence.  I am trying to recall it. I wonder.

Cinderella

My 98 year old mother, Cooie, has feet that were always big but are now bigger.  She used to wear women’s size 11 shoes, but since she broke both her legs, her feet are longer and, more importantly, deeper and wider. She might fit into women’s size 12 extra spacious, if such a size even existed. Resorting to catalogs, I have ordered about ten different pairs of large size shoes for her, but alas, sent them all back, checking off “Too small” on the return label.  Cinderella in reverse.

I’ve ordered stretchable fabric shoes, elastic topped shoes, Ked’s sneakers, bedroom slippers, and both women and men’s edema slippers. The men’s edema slippers could actually be made to cover her feet, but they were incredibly shapeless, made out of a stiff black foam. After I got them on her feet, we both stared in silence at the large black blobs at the end of her legs, and then quietly agreed to send them back.

Her dementia means that her perceptions are not limited by reality. As Cooie peruses the clothes catalogs that appear in her mail every week, her eyes are drawn to smart pumps for women, those types with narrow heels, pointed toes and pert little bows, the type of shoe that she hasn’t been able to wear for about 20 years, if ever. She’s always been a clunky shoes gal. In her senior years, my mother’s shoe fashion has run along the vein of pastel colored Keds, one of each color she could find.

Our friend Jerri made Cooie two pairs of shoes, a lovely and generous effort.  Jerri and I had realized that shoes for my mother didn’t need to have any support or protective sole, since my mother’s feet are permanently retired from their transportation role.  After carefully measuring Cooie's feet in every direction (and the right foot is bigger than the left) Jerri chose brown suede fabric and constructed a pair of Mary Janes with a Velcro closure for the strap. She even stitched an ornamental flower on each strap. Sounded like a great idea to me. 

When Jerri handed my mother the bag that contained the first homemade shoe attempt, my mother looked in the bag, closed it immediately, looked at us both with excitement on her face, and spelled out loud “S-H-O-E-S”.  Her excitement faded once we tried them on since they didn’t look like real shoes. I have to admit, they were ill fitting and floppy looking.

Our compromise is socks. Last summer, a very kind friend visiting from Georgia measured my mother’s feet and knit her a custom sock out of variegated brown, black and beige wool.  LouEllen only got the right one done before she left, but Lynne took up the challenge and in a few days, knit her the matching left sock.  Those seemed to satisfy my mother, who wore them for about a week.  Shortly after that, they disappeared from her room at the long term care facility, a not uncommon but unexplained institutional phenomenon, kind of like UFOs. 

These days, Cooie sports Dr. Scholl’s non-binding men’s beige socks.  I buy them at Fred Meyer’s. Because she cannot bear weight on her legs, and spends her day in a wheelchair and her nights in bed, I am satisfied with this solution.  She isn’t. She is on a persistent quest for shoes. She wants to wear shoes, and she thinks the reason she doesn’t have any is that I haven’t gotten around to buying them for her. She’s very diplomatic about it.

At dinner the other day, she confided in me. "I would like some shoes." She continued, "There's a store. I...think it's on... Jefferson." She paused again. "It has a sign on it that says 'Women's Shoes.'" She is referring to the shoe store in Fairhaven (12th Street Shoes) which she spots from the window of the specialized transport bus she rides to church.  12th Street Shoes has expensive, attractive shoes in fashionable sizes, none of which would be appropriate or the correct size for my mother’s feet, but no words can shake her optimism about that shoe store.

"I know," I said.  "I've been in that store."

She brightens.  "You have?"

"Yes, but they don't have any shoes in your size."

"Really?"

"Your size is unusual," I say choosing not to repeat my usual response, which is to remind her that her feet are swollen.

"I know." She pauses. "I'm embarrassed when I have a good apron..." She was searching for words.

"You mean a skirt?" I suggest.

"Yes, when I have a good apron on."

"I know you are." I pause.  "Do you remember the shoes I just sent back?"

"I know that some people despise you if you have an apron," she says.

"Do you have any?" I ask, referring to aprons, allowing the conversation to wander.

"I'm not sure that they are here.  They might be in my stuff at my mother's house," she says, referring to her mother that died in the 1970's.

The conversation ends for this moment, but she still, on a regular basis, suggests that we stop by that shoe store. From her perspective, it’s just a matter of getting her to the shoe store and easy as that, she'll have shoes. She forgets all the shoes that we have tried on, and she forgets all my explanations.

When I spoke to her on the phone the other morning, I asked her how she was doing. She said she was looking at a magazine and she told me that it had a lot of shoes.  Later, when I showed up in person, she pointed out the many pages of spring shoes in the Blair clothes catalog.  I played along with her, discussing the merits of different shoes, checking her favorites in pencil, and conveniently taking the catalog with me when I left, promising to order her some shoes. Luckily, because of her dementia, she will forget not only my promise but our entire conversation in a few hours. 

Hope springs eternal.  I ordered some size 12WWW from another clothes catalog, but once again, I paid the shipping costs to return them.  I try my best to manage my mother's care, but this closet of her world of needs--shoes--stands empty.

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."

Waiting

I wrote this blog in January, then hesitated to publish it.  Somehow, this day after Easter, I have more clarity.  Here goes.

After she dies, I’ll have more free time.  We can be spontaneous. We can go on a long vacation, pack up the camper, bring the dog and be back whenever we feel like it. 

I’ll not carry around this worry inside me. My heart will not lurch each time the phone rings in the night. I’ll have more energy for Lynne and friends.  The dog will get more consistent walks.  I’ll write this novel, I’ll revise the other novel.  I’ll sleep late and maybe quit my part-time job. 

Instead of spending so much time with the staff at her long term care center, I’ll take classes on raptors and go birding on the Skagit Flats.  I’ll have time to go see the eagles on Mosquito Lake Road and maybe even blog about it.  I’ll have natural cheerful blog entries, fun things, pictures of us with beautiful misty mountains behind us.  More like that.

Anticipation

I’ll live a life that I imagined, instead of the one that happened.  I’ll be my every dream. Lynne and I will be in perfect health for twenty more years, if not thirty.  We will finish remodeling the kitchen and whip the yard into shape.  We will have no stress. We will drop dead at the same time painlessly.

Walking

My friend Kathy and I strolled along the North Shore trail of Lake Whatcom yesterday afternoon…sparkly water, sweeping vistas of the quiet lake, a beautiful sunny day.  We talked about her strategy for getting the garage part of her house remodeled into a studio/office for her use.  She burst out “I have put my own life on hold now for 18 years.”  Behind us was her 18 year old autistic daughter.

Gratefulness

Saturday night I couldn’t sleep, tossing and turning with restless legs and the images of the norovirus that is running through my mother’s nursing home. I resorted to one of my last ditch techniques.

I remind myself how lovely it is to have a house.  I lie there under the rose colored down comforter on flannel sheets with Lynne’s warmth just inches away, and our dog snoring with her head resting on my feet.  I get up, walk down the hall and sit in our rocking chair. I look out the picture window in the living room, out on the sparkling city lights, the beacon flashing on the top of Mt. Constitution across the waters. I see fog rolling across the bay, first obscuring Lummi Island, Orcas, and then the Herald sign that beams up its name to our hilltop view.  I am safe, I tell myself, sipping a cup of warm milk.  I am well-fed and cared for.

Journeying

“Life is a journey.” I pulled up that thought from my store of wisdoms, in response to Kathy’s angst.  As Kathy and I continued on the trail, I quoted John Lennon. “Life is what happens when you are busy making other plans.”  I pointed out the successes she has had, like the house that she just resurrected from depressive un-inhabitability.  I mentioned the artistic voice expressed in her choices: raising the ceilings to give a spacious feeling to a small house, adding high windows on the south side to bring in light to the interior, re-storing the original fir floors to a warm finish.  I think of the tremendous strides her daughter has made as a result of Kathy’s advocacy: the art lessons, the horseback riding lessons, the speech therapy and the special soccer team, and now, helping her to have independence by re-locating to a house that is within walking distance of Fairhaven. 

For me? I can see the riches in helping my mother.  I feel the gift of knowing I am doing the right thing.  I know that helping my mother rescues me from certain self-centeredness.  I can feel that I have more empathy for caregivers.  I can feel the strength I have in dealing with a complex situation.  I can hear the voice I have developed while advocating for her.

Reminder

I’ll miss her.  I’ll miss her wave through the window when I arrive.  I’ll miss her goofy sense of humor, like sticking out her bottom dentures to make me laugh.  I’ll miss the delight shared when we finish a game of Solitaire.  I’ll miss her telling me what she sees outside her window, like all the white butterflies she saw yesterday when the frost painted the lawn with sparkles and the sun melted the ice off the trees.

Still I wait.