Waiting was wrong.  I didn’t like waiting.  I’m witnessing.  Mom is doing and I’m witnessing.  Waiting implies an investment in the outcome.  And I don’t want an investment in the outcome.  It’s not like this has a surprise ending.  And I won’t like it when it comes.

So I’m not going to wait, I’m going to witness.  Mom hasn’t eaten in three days.  She’s heavily medicated so that if there is pain she won’t feel it.  She’s been sleeping for two days.  Kam says that the last sense to go is hearing, so we are spending time in Mom’s room.  We’re talking and laughing and crying.  Today we bought a puzzle book.  Mom has always been good at words, so I’m asking for her help with the word puzzles.  She got one wrong.  The word wasn’t snore, it was norse.

Yesterday Nancy and I were talking in Mom’s room.  She has told her kids that when she gets alzheimer’s she wants them to put her in a nursing home and forget about her.  Pretend she’s already died.  Nancy teaches alzheimer’s patients every day.  She sees what happens.  She understands the pain and the suffering.  She understands the loss.  She understands the ugliness.  She says she knows she’ll be the one spreading shit all over the walls.

She’s wrong I think.  There’s also joy and laughter, just like anywhere else.  There are the wonderful life stories Anne tells during moments of lucidity.  The hugs and kisses that Jacquie is so free with, when she isn’t pissed.  The compliments that Lorraine doles out like candy along with her advice about how to walk sexy.  But that’s not why I visit.  I visit because I need to be here.  I want to spend time in Mom’s world because it is also mine.  I may not have much to offer her now, but she still has so much that I need.  Even if she’s just holding my hand and sleeping.

It’s now seven years since Mom was diagnosed with alzheimer’s.  I don’t remember all of the steps it took to get here, but I do know that I could not have taken them alone.  Four years ago I said it better than I can say it now.  Now the pain is too real, the loss is too close.

 “Flibber my jabber?” Mom asked.

“Yes, Mom.”

“Thank you, honey”, she said.  Her face relaxed into the smile that has always come readily to Mom.  She squeezed my hand and settled back.

Three years ago Mom was diagnosed with Alzheimer’s.  But I had been watching her change over several prior years.  She got more frequently lost, forgot her thoughts.  She stopped reading.  Still, the diagnosis generated fear and rage in me.  I felt shocked and let down, cheated of some unnamed birthright.  Unchecked emotions bashed each other around, until I finally realized that Mom and I only have right now to be together.  Now is my time to learn to live both with and without my mother. 

Alzheimer’s has not eliminated the powerful woman that Mom has always been.  Her guidance still shows me how to maneuver the life she gave me.  Even as an adult I know that the path I am traveling seeks to follow the footprints my mother leaves.  How needful I am still of her direction, of her love, of her presence.  Where parents are usually the ones stricken when it is time to release a child, for me it has been hardest to release my mother from my grasp.

Since her diagnosis, Mom has become equally more and less of her self.  She is altered now, a pastel version of the vibrant woman she once was.  I still see the mother that I love and need.  And I’ve come to know that she needs me, too, in ways that I didn’t understand before Alzheimer’s.  I see Mom nearly every day.  Sometimes I watch her sleep, sometimes I just hold her hand, and much of the time we talk.

Alzheimer’s has stolen Mom’s ability to use language.  I will never again know what we are talking about.  Now I read Mom’s face.  Maintaining the connection that we’ve always had is what guides us.  The bond we share transcends language, there is no longer a need to understand the words, and there is no need to understand the meaning.  I am happy just to be with her, following her lead, talking in nonsensical terms about unconnected thoughts.  Our relationship is, in many ways, unchanged.  She requests, demands, or smiles an un-shared joke, and I respond fittingly.  Her need for me fulfills my need for her.

Alzheimer’s is carving a long and meandering path to loss.  Mom and I are strolling together.  The way is not clear, and there is no map.  It is a path I am getting to know, and learning to appreciate for what it is.  It turns and drops off unexpectedly sometimes, then wanders slowly; taking the time it needs to reach its final end.  Each step is its own treasure, however painful.  I am still not at all comfortable with the destination, but I am learning to accept it as truth.  One day I will walk without my mother.  And as she fades into her twilight, she is showing me that I can.

We’re at the end of the path and I think I’m not ready.  But I trust that Mom will know when I am.


Kam told us things would go up and down. 

Today Mom did not eat.  She opened her mouth and Delia spooned in the ice cream mixed with protein powder and whatever was for lunch.  Mom waited.  She didn’t close her mouth.  She didn’t swallow.  She waited.  Finally Delia gave up and wiped out her mouth.  Delia tried again, but Mom is a determined woman.  She’s always been that way.  Mom out-waited Delia.

We are doing a lot of waiting right now.  While we’re waiting we’re doing the Jumble.  That’s my favorite.  Dad’s getting pretty good at crosswords.  Especially the early in the week puzzles.  Later in the week they get hard.  Then we have to wait until Monday again.  Em and I did about half a sudoku yesterday. 

Rose comes by while we are waiting.  And so do Marion and Betty.  And June comes by when she doesn’t like the singing in the dining room.

Rose has been here as long as Mom.  When Mom first moved in we wondered why Rose was here.  She is a beautiful woman with the sweetest disposition.  She tells me how beautiful I am every day.  Obviously she’s also brilliant.  She thinks I should be a movie star.  Truly brilliant.  Five years ago she got her nails painted bright red every week.  They were long and beautiful.  Chains, bracelets and rings decorated her ample neck and arms.  And she always carried her purse.  There was always gum in her purse.  She was one of the few who could chew gum.  She remembered how to chew.

Cowboy Bob arrived a few years after Rose.  By then Rose was beginning to forget.  She and Bob enjoyed each other’s company.  Then they started kissing.  Bob could barely hear and he could barely see, but he could always find Rose.  It didn’t take long for them to both get very chapped lips.  The staff had to limit the kissing.  And keep an eye on the night time rendezvous.  So Bob started kissing the other girls.  Rose thought they were breaking up.  She paced the hallway for so long there were sweat stains down the back of her shirt.  Then she forgot they were breaking up and everything was fine for a while.

Now Rose is waiting for her sister.  She visits Mom while she’s waiting for her sister.  I”m glad she’s waiting with us.


Mom got kicked out of hospice about four years ago.  She wasn’t sick enough.  She wasn’t likely to die in less than six months.  Now she is.  So now we have people who look deeply into our eyes and ask how we are, they assess Mom and tell us how she is, and they bring in new furniture.  I can particularly appreciate the new furniture.

Mom has a new bed, a new wheelchair and a new side table.  And if she needs medical attention, the nurse will come and take care of her.  We don’t want her to go to the hospital, we don’t want to put tubes in her or needles.  We don’t want her to live forever.  We do want her to feel comfortable and cared for and serene.  If serene is possible.  It’s hard to say how she really feels, since she can’t talk to us.  But we look at her in her new bed all tucked in with pillows and blankets and the love of all the people around her, and we think she looks serene.

This is how I hope my end of life looks.  But with the current state of our healthcare system, this isn’t the most likely scenario.  The penniless can have this care, and the rich can have this care, and people with less than six months to live can have this care.  The rest of us can’t afford this care.  We have to go to the hospital or a nursing home to get insurance, the insurance we’ve been paying into for decades, to put in tubes and needles and lay us down next to machines that beep and blink and remove any sense of serenity we might hope for.


“If you need anything I”m in room number 9”.  Marion wants to help take care of Mom.  He had to say this a couple of times before I got it.  Marion doesn’t have any teeth.  He’s been in a wheel chair for years due to a stroke.  But he had issues before that.  He’s told me the story so many times.  Each time I understand a little more.  Some day I’ll get it all.

Marion loves my dad.  When Dad comes to visit they sit together with Mom at the table by the door in the big room.  They drink coffee and they talk.  Dad understands Marion really well.  Even the caregivers need help understanding Marion, so they ask Dad for help.  Marion waits for his coffee until Dad arrives.  They talk about growing up on farms, they talk about baseball.  They talk about Mom.  Marion keeps an eye on Mom when we’re not there.

Marion’s mom was a really good cook.  She made something that Marion calls potato candy for him when he was small.  I searched for potato candy on the internet and came up with all kinds of odd things.  Finally I found it.  It’s potato dough rolled out and spread with peanut butter then chilled and sliced.  When I told Marion I’d found the recipe he was beside himself.  I promised I’d make him some potato candy, but I haven’t done it yet.  There are always other things to do…laundry, chores.  Marion will be 84 next month.

Now that Mom is really sick she’s not spending so much time in the big room.  I think Marion is lonely.  He doesn’t have anyone to sit with and drink his coffee.  We’ll be visiting a lot this week.  I’ll make Marion his potato candy and we can all sit together and drink coffee and talk.  Mom won’t mind if we spend a little time with Marion.

2 (1 lb.) boxes powdered sugar
1/2 c. hot mashed potatoes, drained
1 sm. jar crunchy peanut butterMix sifted sugar into potatoes a little at a time by hand. (Don’t panic when potatoes liquify as the first sugar is added. This is what it’s supposed to do. Just keep adding sugar until it is pastry consistency.) Sprinkle wax paper with additional powdered sugar. Take baseball-sized ball of mixture and roll out like pastry. Spread with peanut butter and roll like a jelly roll. Wrap rolls in plastic wrap; chill and slice.

Makes 2 rolls.

Mom is dying.

Mahmoud Ahmadinejad stole the presidency in Iran. The president invited a professor and a cop to share a beer.   There’s a warming trend.  A bridge collapsed in China.  Ricky Henderson will be inducted in some hall of fame.  Mom is dying.  In hours or maybe days, Mom will die.




And I’ll live.  The warming trend will continue.  Or it will cool.  My husband asked me how Dad is doing.  He asked how I am doing.  I don’t know.  How does one do while watching the one person on the planet who really knows everything prepare to leave forever?  I don’t know how I’m doing.  How should I be doing?  I’ve never known less than I do right now.

Yesterday we talked about feeding tubes and breathing tubes.  Mom had a stroke we think.  Her right side does nothing, her left hand and leg still move.  When she tries to talk it’s the left side of her mouth that moves.  But the sounds are gutteral, animal like.  Her tongue is the problem.  Limbs are irrelevant after all these years suffering the losses gifted by alzheimer’s.  But tongues we need.  Tongues allow us to swallow.  Mom can’t swallow.  And when people can’t swallow they die.  People need food.  And water.  So we could put in a feeding tube and she would live.  Making funny gutteral noises when she wants us to know something.  Sitting with pillows all around her, because she can’t really sit but has to be propped, with her mouth open staring vacantly at the wall of pictures that have accumulated over the last several years.

My children have grown up on that wall.  They don’t remember when Grandma was still Grandma.  When the brilliant woman who raised me could take care of them…when she talked to them and loved them and taught them.  They know and love the woman that she is now.  The Grandma who says words that aren’t real and doesn’t know who they are but holds their hands anyway and looks into their faces with all of the love she can’t express.  Until yesterday, when her face went blank.

No, I don’t think she’d want a feeding tube.  Or a breathing tube.  I think she’d want to go with whatever grace she’s allowed.  When she’s ready.  If we wait for me to be ready, really ready, that day won’t come.

goldenhills, an introduction

Mom used to read all the time. Now she occasionally reads the exit sign. Or part of the menu printed on the whiteboard next to the kitchen. She’s forgetting how to read. She’s forgetting how to walk. She’s forgetting how to feed herself. But she still looks at us with the love that is inside of her, at least some of the time. She takes my face in her hands and kisses my cheek. Sometimes. And other times she’s angry and she hits. She’s often loud. She’s more and less of the woman who raised me with saintly devotion.

She lives at Goldenhills now. She needs attention every moment of every day. They have taken us all in, not just Mom, into their family. Our new family grows and shrinks, grows and shrinks. Right now our family is the cowboy and the happy lady (they’re an item), the knitter, the moaner and the opinionated one (they’re an item too, even when his wife is visiting), the one with the big eyes, the bossy teacher/nurse (it depends on the moment), the kissing lady, the runner (they found her in the next town once), the fbi. The spicy one is gone. The conductor is gone. The man who wore his belt backwards is gone. The lady who walked and walked and walked is gone.

One day Mom will go too and I’ll have to deal with that final loss and the loss of my Goldenhills family. In the meantime it’s a very touching, a very funny family. They love me, even though they can’t remember my name. They tell me I should be a movie star. I’m sure each one of them would have wonderful stories to tell if they could remember them. But since they can’t, they create new stories every day. Every moment. They meet one another over and over. They have conversations using sounds that don’t make words and they smile and commiserate. They hug and kiss and they argue.

It’s just like life outside of Goldenhills but magnified and shrunk down all at the same time. It’s more and less of life before alzheimer’s. I like being there and when I’m not there I like thinking about being there and writing about being there. You may hear about it a lot if you choose to.