Category Archives: Dealing with dementia

Mom’s new watch

Maybe it’s having come back from five months in New York, a time that gave me an extended break from caring for my mother, that has her so much on my mind.

I’d been back for a short visit in late March, and taken her for a checkup with her neurologist–about an hour drive each way to Indianapolis and back from the facility in Lafayette.  When I got back to New York, one night I cried and cried.  Felt like I’d abandoned her.  Felt like a failure that I couldn’t fix things or make her happy.

When any of us (me, one of my kids, my ex-wife) visit, Mom talks almost obsessively about wanting to move in with, or near, one of us. “I want to be with the family.  I want to be with the Edbergs.”

Well, who wouldn’t rather live with family than in an assisted living facility?  (OK, I know most college-aged people are happy to be living in the assisted-living facilities that are college residences and dining halls, rather than with their parents. But at a certain point you’d rather live with family than alone.)

“We don’t live together, Mom,” I explain.  “Allison lives in once city, I live over an hour away, Pete is moving to China, and Kullan lives in New York.  When there are a bunch of us together, like today, it’s a special occasion.”

She doesn’t understand.  We try different things.  Deflect and change the subject.  Lie and say we’re looking at places.  Say her piano won’t fit in any of our houses (true).  What we don’t do is say is, “Mom, you have Alzheimer’s Disease and can’t take of yourself and you can’t live with us.”  If she had a broken leg, she’d understand.  Telling her her memory doesn’t work and she might wander off and we can’t afford to have someone be with her all day and any of us would go crazy ourselves living with her . . . I can’t do that, and she wouldn’t believe it anyway.

We went to dinner Saturday night, then to Wal-Mart to get her a few things.  The young women at the jewelery counter couldn’t get the back of Mom’s Timex off to change the battery, so we bought a new watch.  Six or seven minutes later, in the car, I asked her about the watch.  “It’s lovely,” she said.  “It’s seven-twoey,” she announced.  The little hand on the seven, the big hand on the two–what the rest of us would call 7:10 or ten after seven.

“How long have you had that watch?” I asked her.

I don’t like testing her, playing with her, but I was really curious.  She’d been so proud of the watch now in my pocket, to take to a jeweler to fix.  And then quite excited about this new one that she picked out.

“Oh,” she replied without having to think about it, “since I was about twelve.  I’ve had it my whole life!”

Inside, part of me wants to scream.  “MOM, WE JUST BOUGHT THAT FUCKING WATCH FIVE MINUTES AGO!”

Laugh? Cry? I just smiled and said, “Oh, I didn’t know that.”

It’s hard, but I’m used to it now, and pretty accepting.  Something inside me feels like it dies a little, when these things happen, but it doesn’t hurt so much I can’t be around it.

I love her.  I like being with her.

And then, “When do you think I can move near Allison?  I just need my clothes, my piano, and my music and I’m all ready to go!”

“Well, Mom, your piano won’t fit in Allison’s house.”

“Well, then just a little place near her.”

“Well, there aren’t any places for sale near Allison.  But we’ll keep looking.”

“I want to live with all the Edbergs!”

“I understand Mom, but we don’t live together. I live in another city. Not near Allison. Over an hour away.  And Pete’s moving to China. . . .”

And we go around in that circle every five minutes, sometimes more often.

I went to hear a late show at a bar that night, and stayed over at Allison and her boyfriend’s house.

The next morning, I wanted to go visit Mom again. But I just couldn’t take another session of dealing with her incessant pleas to move. So I went home.  And got nothing done.

I want to spend time with her, and I don’t.  I can only last so long, go only so often.  I go as often as I can take it.  Does something shut down in me when I don’t? Does something shut down in me when I do?

So I’m writing about it.  I’m seeing a therapist.  I’ll find a support group.

I used to look forward to being an adult.  To not having my parents controlling me.

Ha!  The joke is on me.

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Filed under and everything, Dealing with dementia, family life, fatigue

My mother, so present in her absence, at last night’s concert

“I’m not quite sure how to follow that!”  The audience laughed.

Nariaki Sugiura had just finished a virtuoso performance of Alan Jay Kernis’s Superstar Etude No. 1, a rock/classical mashup of a piece, which included Nariaki leaning over and using his (shoeless) left foot on the keyboard.  Very theatrical and really energizing.  Talk about pianistic athleticism.

The concert began with a solo set by Nariaki.  He’d also played a movement of a Haydn sonata and two Cowell pieces.  And then this bombastic entertainment, which the audience loved.

So as a kind of transition, I told a couple of stories.  How my mother and Laura Sias, the strings teacher at Parker Elementary School in Royal Oak, Michigan, conspired to get me started on cello.  How I agreed, with my own eleven-year-old silent conspiracy, to play, knowing that if I refused my mother would be on my case for not trying.  If I played for a few months, however, I could then say I didn’t like it, and my mother would be off my back about playing an instrument.

The joke was on me, though.  I liked the cello and kept playing.

(Despite several attempts to quit, when I’ve been frustrated with my playing, or with myirregular practice habits, with my performances, with the anxiety attacks before (and occasionally during) performances, with the depression and self-recrimination that has sometimes followed performances . . . I always came back.  At some point, I quit quitting.)

Anyway, here I was, almost 43 years later, playing a concert.  About to perform the Schumann Five Pieces in Folk Style for the first time. As I wrote about yesterday, as a boy I used to fall asleep listening to the Pablo Casals recording of them.

Nariaki and I started playing.  And my mother was suddenly very present for me.  A pianist, she was my first accompanist, and we performed together for years.  A wonderful mentor and colleague as I became an adult and a college music professor myself.  We used to love shop talk.

Now, parts of her brain experiencing the effects of Alzheimer’s Disease and vascular dementia, she’s in a (lovely) memory-care facility.

Her grandson, my son, visited her Tuesday.  At first she started to introduce him to others as her husband, then when Pete interrupted to say he wasn’t her husband, she said he was her son. He tried to explain he was her grandson, but she ignored it.  “She did not want to be corrected twice,” he told me.  “Her social sense is still intact.”

Howard Hanson (a major 20th-century composer who was the head of the Eastman School of Music for years) visited the University of Tampa when she taught there, and she was the piano soloist on a concert he conducted.  The poster is on a wall of her room.

Now she conflates him with whatever composer she is playing.  So she told Pete about Beethoven visiting her in Florida and the concerts they did together.

I hadn’t played in Greencastle since last summer (I was on sabbatical for the 2010-2011 academic year/concert season).  My parents moved to Greencastle about four years ago.  I’d taken Mom to every concert I’d played here since–and she’d played a few herself.  So this was the first time I’d sat in that church with my cello and not had her there.

And I was playing these pieces that I used to listen to when I started playing the cello.  My 11/12 year old self was very present.  The music is so beautiful.  Memories of how much I loved a particular passage started flashing into my awareness, more strongly than when we rehearsed.

My love and gratitude for my mother, who’d gotten me playing, who’d always supported me, who’d played with me, was so strong.

She was so present for me in her absence.

Somewhere in the first movement, I started to cry.  I held it back, but I was on the brink.  Teared up, for sure.  Afraid I’d lose it.

I didn’t, though. I got through the Schumann, and the rest of the program, just fine.  Had an especially good time playing the Saint-Saëns Concerto and Piazzolla’s Le Grand Tango.  

I’ll see Mom Saturday. I’ll take my cello, the cello she and my father took out a second mortgage to buy, and we’ll play some pieces together. She can tell me about her concerts with Beethoven, or whomever.

I’ll probably go over to my ex-wife’s house and cry after that.

(There’s more to say about the experience of last night’s concert, which a friend not there asked me to write about.  When I started to write this post, I didn’t know that it would be about missing my mother. There were many other dimensions, of course–and, writing muse willing, I’ll write about them soon.)

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Filed under Dealing with dementia, Eric Edberg performances, family life, Greencastle Summer Music Festival, Nariaki Sugiura

My Mother’s Tour with J. S. Bach

“Look!  All this music is by Bach!” my mother exclaimed, pointing to the pile the table in her room.  “Isn’t it amazing there’s so much by just one composer?”

79 years old, and she’s played the piano for, probably, 75 of them.  And now, Alzheimer’s Disease, despite its cruelties, brings surprising joys.  A stack of Henle editions, over a foot tall, culled from her bookcase of music, now assembled on the desk in her “Legacy Neighborhood” room, there to be discovered, as if for the first time.

“That really is something, Mom.”

She plays the piano every day.  That was the big challenge, finding a place where she could be taken care of well, and have her piano.  Memory-care facilities, the ones based on current thinking, anyway, don’t have individual apartments with kitchenettes.  Everyone has nice big bedroom with a sitting area, but the place is designed so you want to come out of the room, so you need to in order to eat.  It’s to keep people from isolating themselves (plus few if any of these lovely people with Alzheimer’s and other forms of dementia could cook for themselves).  The director of this place, which I’d initially ruled out, found a room where my mother’s Steinway B could live. It’s a large “private dining room.”  The idea is you can bring the family over and have a meal together.  It sounds and looks good when you look at the place.  But not many people bring over the whole family to have dinner with Grandma, especially when she can’t remember who you are. The piano looks good in there.  A win-win solution.

She recognized me today.  She always has.  Never addressed me by name, though.  That was a bit tough.  I kept waiting to hear it.

It’s been a couple of months since we’ve seen each other.  I’ve been living in New York since mid-January and have made only one trip back before this. She’d recognize my name.  It just didn’t come to her.  She was excited to see me, my daughter, and my ex-wife.  We’d been to my son’s college graduation.

“He came to visit me in Florida, you know.” She beamed.

My daughter and I were a bit startled. “Who, Mom? J. S. Bach?”

“Oh, yes.  He brought me this music himself.”

One voice inside me wanted to say are you fucking crazy? He died in 1750!  Another said, relax.  You’re in her world for now.

OK.  Might as well play along.

“Wow, Mom, I didn’t know that.”

“He and I went around to schools. I played for them and he gave them Bach’s music.” (Interesting sentence formation, I thought.  Not, “He gave them his music.”  “He gave them Bach’s music.”  Was “he” still “Bach”?)

She seemed so happy at the memory.  Sharing the music.  I have a lot of nice memories.  Some not so nice ones, too.  When and if my actual memories dissolve, a nice replacement would be a tour with J. S. Bach.

it was that kid of morning.  I cried some when we left.  Allison, my ex-wife and such a dear friend, reminded me that I’d told about someone who said he’d fallen in love with the woman his mother, who had dementia, had become.  I’m there, I guess, but I still miss the woman she used to be.

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Filed under and everything, Dealing with dementia, family life

Where are we going?

Man, have I been going through a lot of stuff.  Maybe you have, too.  Seems like when I talk with someone honestly, we all are.

Took my mother to deposit some checks into her savings account.  On the way, she asked three times what we were doing.

I took most of July “off” from helping her.  Since my father’s death in January, it’s been a second job.  (Two people have now given me the book The 36-Hour Day, about caring for a loved one with dementia, so I guess I should read it.)  A wonderful young woman appeared in our lives and I’ve been able to hire her to spend time with Mom.  Not that I have been entirely absent;  just was able to take a trip, and to not go over every single day.

Now I’m enjoying being with her again.  And am off on another short trip, with my son and ex-wife, to visit my daughter in New York for her birthday.  When I get back, a focus on places that might be good for my mother to live in;  I think she needs not just more care but especially more community than we can give her.

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I used to have a website, an Eric-Edberg-the-cellist promo website, and a separate blog.  Then, when the website got screwed up, I combined them here.  That’s made the blogging thing a bit confusing.  Is it a self-promotion blog?  Is it a bare-my-soul blog?  Is it a commentary blog?  I’m interested in so many things–music, classical music revitalization, spirituality, theology, religion, politics, LGBT issues.  “Successful” blogs seem to have a primary focus.  I’ve been doing some private journaling, which is great.  One doesn’t have to put everything online.  And yet there’s something wonderful about the conversation a blog can be part of.

All of which is to say I’m in a process of letting what form this wants to be in reveal itself.

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Filed under Dealing with dementia