Wednesday, September 20, 2017

A Palpable Sense of Sadness

It's one of those nights I really appreciate living in the city.  I have a trial on Friday so after the boys went to bed, I drove over to Blvd. on Belmont Boulevard (about 1 minute from my house) and camped out to work on one of the picnic tables in the bar.  It's one of my favorite nighttime work haunts, where I can settle in with a glass of wine when I really need to prepare for a deposition or trial.

After I finished working, I went for a walk and called my sister to talk about - what else? - my mom.  I can't remember the last time Tracy and I had normal conversation about our children, a television show or book I gave her to read.  Our relationship has changed - irrevocably, I am afraid - since my mom really began to struggle with Alzheimer's disease and we moved her into assisted living last November.  I miss the days when we talked on the telephone late at night just to catch up with each other and not to compare notes about how rapidly my mom is deteriorating.

I am still struggling with the decision to move my mom from her 1 bedroom apartment (2 rooms total) in the assisted living section of Maristone to an efficiency (1 room total) apartment in the memory care section.  Tracy strongly feels it is the right thing to do and that it needs to be done now.  Other people I trust feel the same way.  I know it's the right thing to do, too, but I am having a hard time accepting that this phase of my mom's life is over.  Moving her to memory care section at Maristone is an acknowledgment that she will not be with us much longer, I fear.

I am in denial, I know, but I am struggling with the loss of independence she will experience when we move her.  The doors are locked and she will not be able to come and go as she pleases (not that she does a lot of that now).  Her apartment will be much smaller and that makes me sad.  I worry that it won't be comfortable enough for friends or family to sit and visit with her for extended periods of time.  I worry that she will wonder where the rest of her furniture - her stuff - is after we move her.  Most of all, I worry about the transition for her, about how she will handle being in a new apartment.

The constant, ever present worry is so draining emotionally.  The feeling of  helplessness is overwhelming at times.

This afternoon, when I stopped by, one of the nurses I talked with (Beth) told me mom had been tired all day, napping on and off.  When I peaked in her apartment, she was fully reclined in  her lift chair, covered with blanket, asleep.  I gently touched her arm and woke her, just to say hi.  She looked up at me, confused, smiled and went back to sleep.  I quietly slipped out and walked to my truck, tears in my eyes.  I felt as down as I have felt about her situation in a while.

That's the hard part - every time we hit a plateau with my mom and how she is doing and I get comfortable where she is, her conditions further deteriorates and we hit a new low.  Damn, it is hard.

Looking back to November of last year when we moved her into Maristone, it's hard to believe we convinced her sleep in the bed for a while and that she could call us on the telephone.  She new who my children are and who my wife is.  She could climb in and out of my truck, with difficult, and even attend Kaitlyn's basketball games.  None of that can happen now and it never will happen again.

Sunday, September 17, 2017

Elvis Presley and the Power of Music

I'm sitting in the Frothy Monkey on Sunday morning having a cup of coffee before I head down for to visit my mom.  "In the Ghetto" by Elvis Presley is playing and I'm feeling a little melancholy and contemplative.  

My mom loves Elvis Presley.  The day he died (August 16, 1977), she and an old friend, Betty Gant, drove to Super X (a long forgotten drug store) in Brentwood and bought a bunch of Elvis Presley 8-track tapes.  I guess they thought since he was dead, all of Elvis Presley's music would disappear.  It was funny then and it's funny in its naivete now.  My mom was 37 years old then, 40 years ago.  So much has changed, obviously, in the world of music and with her.

One of the last times I brought my mom to my house for dinner was last November or December, she and I arrived before anyone else and spent a hour or so together.  She watched with childlike innocence and delight as I played music for her by talking to our Amazon "Echo."

"Alexa, play 'In the Ghetto' by Elvis Presley," I said.

Alexa, ever the dutiful helper, replied, "In the Ghetto, by Elvis Presley."

Like magic, Elvis began singing "In the Ghetto."  My mom laughed and smiled in wonderment.  And I smiled with her.  This continued for awhile, as I played DJ for my mom, asking Alexa to play songs from the past I knew she would like.  The Carpenters, Johnny Mathis, Paul Anka, etc., almost all of which we had on 8-track tapes in the playroom in the 1970's.  My mom and I just hung out together, listening to music and forgetting about life for a little while.  

At the time, I didn't realize how quickly things would deteriorate for my mom.  I didn't realize it would be one of the last times - maybe the last time - she would be at my house with my family.  Had I known, I'm not sure I would have changed a thing though.

It's a memory I will always cherish.  

Wednesday, September 13, 2017

Where the Light Gets In



Ring the bells that still can ring.
Forget your perfect offering.
There is a crack in everything.  
That's how the light gets in.

- Leonard Cohen (Anthem)


Several months ago, my sister bought me a copy of Kimberly Williams-Paisley's book, "Where the Light Gets In:  Losing My Mother Only to Find Her Again."  The book, a memoir, details Kimberly's struggle to find peace and acceptance as she and her family adjust to the fact that her mom has primary progressive aphasia (PPA).  Very similar to Alzheimer's disease, it robbed her mother of her ability to speak, communicate and ultimately took her life.  Jude read the book later and had suggested I read it, too.  I finally did, finishing it a couple of nights ago.

For a long time, I simply wasn't ready to read the book.  I was afraid it would hit too close to home, which of course it did.  It was wonderfully written and a poignant account of what Kimberly's family went through as they watched her mother ravaged by PPA.  At times, I felt like Kimberly was describing my life, my children, my family and my mother.  It broke my heart.  It was as if she had written my story and my family's story.  And I was thankful for that.  

I found myself wanting to e-mail her, to get a cup of coffee with her, to sit down with her so she could listen to me tell my story, which is really my mom's story.  

Why?  Because it's clear, after reading the book, that she would understand exactly how I feel.

Why?  Because her mom was so interesting, funny, vibrant and full of life.  And so was my mom. 

Why?  Because she could tell me how she found a sense of perspective about her mother's illness and all the future memories that she, her children - 2 boys, just like mine - and yes, her mom, were destined never to have of times spent together that were never to be. 

Why?  Because she could tell me how to find the places where the light gets in, so I can learn to accept and love my mom unconditionally for who she is now, not who she was and who she will never get to be.  She could tell me how to live in the moment more, appreciate the now more, and regret less. 

Why?  Because she has walked this walk I am on and she could tell me that things will be okay.  Someday, things will be okay.

Strange and irrational, I know, but these are strange times for me in so many ways.  My mom is gone and yet she is still here, at least for a while longer.  Also here is the helpless feeling that I'm losing a bit more of her every day and there is nothing I can do about it.  That's one of the hardest parts, for sure.

Kimberly Williams-Paisley wrote a beautiful book.  I'm glad I read it.  There's comfort, I think, in knowing there are other people and families, like me and mine, who understand.

Kimberly Williams-Paisley's mom, Linda Williams, died on November 16, 2016.            

Sunday, September 10, 2017

Joe and Dikembe Mutombo

Yesterday, like every Saturday this fall, was a day filled with sports.  Joe played soccer at 10:00 a.m, followed by J.P.'s soccer game at noon.  Then, it was off to J.P.'s baseball game at 1:00 p.m.  The finale was Joe's baseball game at 3:00 p.m.

Joe was in rare form.  First, during the first half of his soccer game, a kid on the other team had a breakaway and was dribbling full speed toward our goal.  Joe ran the length of the filed - not a particularly long field for 5 year olds - and slid feet first into the goalie box, kicking the soccer ball and clearing the ball out of bounds, right in front of us.  He jumped up, looked at the kid who had the breakaway, and wagged his index finger back and forth, like Dikembe Mutombo after a block in the pain during his N.B.A. playing days.  J.P.,  Jude and I roared with laughter as Joe looked over at us smiling.

When he walked up to the plate for his second and final at bat of his baseball game, Joe said, "Hey, Daddy, look."  It's a coach pitch league, I'm the coach and I pitch, so I looked up at him.  He stood in the batter's box with a serious expression on his face, staring at me, then held his bat up with his left hand and pointed to the left field fence, like Babe Ruth calling his shot.  Remember, he's 5 years old.

I started laughing, of course.  Then, he popped the first pitch up right in front of me, probably his weakest hit of the fall season so far.  Maybe he should consider celebrating after a good play as opposed to before it, huh?

I love his personality and especially his confidence.  And I love the way he makes me laugh.

Saturday, September 9, 2017

Memory Care

I've known this day was coming but I had hoped it wouldn't come so quickly.

Earlier this week, we learned a spot had opened up in the "memory care" unit at Maristone.  My mom is first on the waiting list, so we have a decision to make.

Memory Care is a smaller part of the facility where 12 residents live with 3 caregivers on duty at all times.  The apartments are smaller and the residents can't come and go as they please.  There are organized group activities.  The residents have their meals in a common area there, as opposed to the dining hall.

I've struggled with the idea of her moving to an apartment in the Memory Care unit.  What little freedom and independence she has will be gone or so it seems to me.  She won't have all of her stuff in her apartment, like she does now (although maybe that's a good thing).  It's also a tacit admission, I think, that the disease is winning, as I knew it would, and that the end is nearer.  That's really hard for me to accept.

On a personal level, I don't think the visits will be as tranquil and peaceful for me.  There won't be as much space and I'm not sure we'll be able to sit and visit quietly, as we so often do.  As my sister, Tracy, said yesterday in one of our regular telephone calls, moving mom to the Memory Care unit will be probably be better for her and harder for us.  As I pondered the dilemma yesterday afternoon, I was reminded that it's not about me, it's about my mom.

On the positive side, she will undoubtedly be safer in Memory Care.  We won't have to worry about someone checking on her every 2 hours, which I don't think happens regularly.  She will be monitored more closely, so it's less likely visitors - like my in-laws, Jane and Jim White earlier this week - will find her in her wheelchair, wedged between her chair and the door, facing the wall and not sure how she got there or how long she's been there.  In other words, hopefully there will be fewer of those heartbreaking moments we know about, not to mention the ones we don't know about.

Theoretically there is less of a chance of a bad fall, or so we hope.  Multiple visitors to her apartment, including me, have arrived to find her walking from the bathroom, stooped over, without her walker or wheelchair.  Many times when I arrive, I find her in her chair with the walker and wheelchair against the wall across the room.  As hard as we try to help her remember, she forgets and somehow gets out of her chair and walks across the room to her walker or wheelchair if she uses them at all.

The bottom line for me, I guess, is that it's better to move her too soon rather than too late.  If falls and breaks a hip and has to undergo surgery, it's a game changer.  Or, more likely, game over.  What's left of the game, anyway.

Lastly, one of the nuggets of wisdom - if you can call it that - I try to pass on to my clients is that if you're hearing the same thing from several people you trust, it's probably true.  My mom's close friend, Patti Sparks, my mother-in-law, my sister, and the physical and occupational therapists who see my mom at Maristone all recommend we move her to the Memory Care unit.  So, I guess we will.

There is nothing easy about Alzheimer's disease.  Nothing.  And this decision is no different.  

Wednesday, September 6, 2017

Visiting Mom

I had a nice, peaceful midday visit with my mom yesterday.  She's always so happy to see me, which makes me smile.

We talked and she watched The Bold and the Beautiful, one of the few remaining soap operas on television.  It's funny and a little bit sad to watch television with her, because she gets confused easily and seems to believe the actors on shows or commercials are real people.  "Who is that?" she routinely asks, nodding when I tell her it's an actor and not someone I know.  She does the same thing when we watch the local news.

Over the years, we always kidded her about watching The Young and the Restless.  I never understood how someone with her intellect and education could enjoy regularly watching a soap opera.  Her mother (my grandmother, Mary Alice Ussery) and aunt (Aunt Sara) were the same way, though, and I think they used to enjoy comparing notes about what happened on the show on a particular day.  To each his (or her) own, I guess.

She napped a little yesterday and, truthfully, I did, too.  It was nice.  I stayed for a little under two hours, then stepped back into my busy world of lawyers, judges, children and youth sports.

Wednesday, August 30, 2017

Losing My Voice

I received a telephone call last night and learned that my first cousin has suffered an aneurysm and was in the emergency room.  It could have been worse, I guess, because she is alive.  She's scheduled for surgery later today.

It struck me this morning that I can't call my mom to talk about Ann's condition.  I can't call her to try and talk through why this has happened and to just try to make sense of it all.  My mom was always so good at helping me keep things in perspective.  Toughest of all for me, no doubt, is I can't rely on my mom's faith and her unending belief that everything will be all right.  Not with her and not with my cousin.

At times like this, I'm reminded of how much I relied on my mom for emotional support and wisdom.  And now, I can't.  I used to talk to her every day about issues big and small.  Politics, sports, work, family and personal stuff.  She always was there with a kind word or just a listening ear.  Always.  And now she's not and worst of all, she never will be.  Not again.

I think a large part - maybe the largest part - of the reason I feel so alone and helpless at this time in my life is I don't have my mom to talk to and help me process what's going on.  I miss that most of all.