Mom’s Laugh

When you are a parent, your kids’ laughter is the best sound. It doesn’t matter how old said kids are, it is infectious and revives you. At least, my kids’ giggles have that effect on me. But an underrated source of energy is the laugh of the mother, at least my mom.

My Dad has always had a pretty healthy regard for the silly. Growing up the two of them put great value in exposing their unruly lot to arts, books, music, you name it. That’s a pretty tall order when two of the sons were special needs guys, but the folks were pretty successful. We all read a lot and my sisters and I managed to not be slouches at the wisecrack, my own kids picked up on that with their own great skill. Dad remains appreciative of anything humor laden, but you knew you made it when you got audible laughter out of Mom. She usually smiled and had a bit of a silent laugh.

I started to think of this the other day as the battle she was fighting against dementia and enough TIA ischemia based episodes to fill a tv season has taken the laugh among the other things those diseases have robbed. She lost that fight Monday morning

I harkened (I can hark? who knew) to a late Sunday morning a few years ago. I was out visiting the folks. They were still in the family house of what would eventually be 51 years. My mom was telling me about a party they had attended the previous night. Dad had volunteered in one of the labs at Roswell Park sharing his considerable computer programming acumen with the folks there.

My mom takes a sip of her coffee “Michael, you should have seen it, all these little nerds came up to me raving about your father…they kept telling me that your father was a fucking genius!”

I couldn’t help, I laughed. My mom does not haul out the f-bomb that often and hearing it suddenly with all the gusto got me right in the giggles, which got her audibly laughing. It was great and not the first time my dad was deservedly lauded, but I think mom deserves her share of accolades.

My daughters gave voice to the notion that somehow “the bagels just taste better at Grandma’s!” My daughters, as is their habit, are entirely correct.

Mom has been aiming for that “better bagel” for a long time. From running the family she was born into, to getting connected with the NAACP to make for a better world shortly after arriving in Buffalo, to setting up a camp so my older brother and kids with similar intellectual disabilities could have that summer camp experience, stepping to the forefront of numerous campaigns from disarmament to who could build what in the town they call home, all to chip away at making that better world, that better bagel. She spoke up for her kids and for those who couldn’t. During her time as the Deputy Town Supervisor, on numerous occasions, she made many a petitioner to the Town Board consider their words carefully.

The summer of 1986 I joined her cadre of workers in an up hill climb to get a democrat elected into what is now the New York #27 Congressional District (Then our home turf). We didn’t win, came with 10 points, so a morale victory for whatever those can be worth. I was a little bummed about that. Mom asked why and I told her my thoughts while we were driving home. She thought for a moment and then with a sly grin “Maybe so, but we sure scared the shit of em, huh?”

It’s not easy to be a force of nature when you are 5’4. My grandfather had a bit of local celebrity to him when he passed thanks to a long stint at the Editor in Chief’s desk at the Akron Beacon Journal. When Cleveland media sniffed around for a few quotes, my mom effortlessly worked them for good stories. It’s a good thing that my St.Bonaventure Media Studies professors didn’t see that solid public relations was just basically common sense who knew somebody.

She’s a rocker. The Eagles, Neil Young, Little Feat, Bruce Springsteen were always greeted with enthusiastic shouts of “Turn it up” from her at her sewing table in the next room from mine growing up. Any parent who equips you with the knowledge that having the Beatles Love Songs collection will be just as important if not more so than Rock and Roll Music? That’s parenting done right, that better bagel.

And in a story my kids have heard much too often, she was a little humored to be in her mid 40s to be thinking of queing up for concert tickets, but did just that in 1980 when my history teacher had the chutzpah to schedule a test. Mom took my best friend’s and mine princely sum of $22.00 and went to National Record Mart while we were acing our tests (at least I did) with front row seats.

Rest easy, Mom, I’ll see you in my dreams. We got it from here

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Dementia Blues

Multi-infarct dementia – A term that will never ever leave my functioning cerebral cortex. It took residence there for good on my birthday last year when it officially took up residence in my mom, inflicting a soul crushing, dignity beating afflication on my mom from which she is never going to recover. I didn’t know about ischemia related concerns and TIA related episodes or even the concept of ministrokes. All of which are now permanently fixed in my lexicon.

There are regular episodes where something temporarily goes cataclysmically wrong, and then, most comes back. What gets lost in the translation is never immediately obvious. It’s a harsh reminder of the vicious cruelty of the disease as for my birthday this year, mom experienced another episode that temporarily stole her ability to do any body control.

I mean, I’m grateful to the gods that my dad is still around and healthy, largely and that I’m into my mid 50s, so I’ve had my mom there a lot longer than many folks I care about so I’m not getting cheated, but the way she is getting taken is flat out cruel. For somebody who never put herself first, that is just a horrible abomination.

I believe I’ve heard her laugh 3 times in the past 18 months. The disease is cruel that way taking dynamic souls rendering them into near mannequinness. Thorough the experience of the past 18 months, I was able to keep a cool head when it became obvious that she didn’t have the ability to participate at all in getting bundled up in coat and scarf to return across the street to her long term care facility where thankfully the right nurse was working.

It’s a far cry from days of yore. My parents sold their house after 51 years at the start of this odyssey. A year or two prior, I remember going out to visit and my mom and I were having coffee. The night before they had journeyed to a party for the Flow Cyctrometry lab at Roswell Park and she was telling me a little bit about the experience.

“Michael, one by one, these little nerds kept coming up to me and telling me that your father is a “fucking genius.” Hearing her f-bomb made us both laugh a little. It’s not really news to hear that my dad was the smartest kid in class, but I hope my mom wasn’t and isn’t selling herself short.

As an exercise, character building or not, she dispatched me to sell some raffle tickets for the Clarence, New York Democratic Party. The very likelihood that the area Democratic population was the contents of our house was a secondary concern. My best Friend’s dad bought a punch with the proviso that his name did NOT go on the tickets. My little brother never knew how close he came in his first 50/50.

In the MC Esher building block that was the family house. My room was on the upper level of the second floor and my mom’s sewing machine and desk area was in the adjoining room. The reason this matters was I discovered my music about the time the red and blue Beatles greatest hits records came out and dutifully got copies. A few years later, two more collections came out, Love Songs and Rock and Roll music. I dutifully wanted a copy of Rock and Roll Music. As girls were just starting to be a concern that I was just starting to do badly with, I was more concerned at the time with Rock and Roll. When Christmas rolled around, a copy of Love Songs was waiting. Mom was counter programming me. I learned to love em, even the mushy numbers,

That, there is a flipping genius.

A disease that attacks in such a way doesn’t play. Mom managed the family she was born into, built a home for the one she married into, and spent her life keep us all safe. Health care Karma doesn’t matter. It doesn’t matter the thousands of nights she kept us all safe, the wrongs she tried to right, the world she dared to be better. She’s getting punished. I’m not exactly sure for what. When the ministrokes come, they subside, but you can’t help but wonder what won’t come back, as if to say, just in case the trauma wasn’t enough, here’s something you can’t do anymore, or a phrase that won’t come easy.

That’s what is unfair. I don’t know if the instrument exists that can accurately measure my levels of emotional exhaustion and depression, but those things take a back seat, when you are literally holding your parent up. When the nights they’ve protected you are in the thousands, you keep fighting

That’s All Right, Mama

I was thinking a lot about a scene from the West Wing episode entitled “Two Cathedrals.” It’s an extraordinary bit of television and the most captivating scene is when President Barlet is alone in the National Cathedral and address God in with a eloquent diatribe. At one point, Bartlet used the phrase “Feckless Thug.” The way that Martin Sheen delivered the line just stuck with me.

I loved that show, but that scene popped into my brain as I’ve watched my mom struggle since  primarily with multi-infarct dementia since last fall. One of the most do-good of do gooders has been getting punished regularly, slowly and cruelly. To paraphrase Aaron Sorkin, her sole religion is decency. Her sole goal make the world the best it can be for her family and the followers under that umbrella.

I’m 55 and fortunate that my parents are still with me, when so many family and friends have had their mom or dad taken too soon. When you are this age, you are playing with the proverbial house money.

That imagined scene sticks me as much as a harder real one does. The scene is this past February 9, a day after my 55th birthday. On said occasion, I was at a local er with my mom and dad as mom was rushed there with all the evidence of a stroke (at that point, a whole new avenue of ailments). We collective spent the 8th (my 55th birthday) as my mom got assessed. The following morning she had been moved upstairs for observation and consideration for rehabilitation therapy. The choice was where. A good family friend is the chief of medicine at the hospital and recommended the facility that connected to the hospital. Late in the day, we relocated to a room at the facility. Mom could be cared for, evaluated and a VIP patient all in one swoop. The circumstances left her quiet and a bit disconnected to what was happening, which was hard to watch. We got her belongings stowed in the room and took her out the common area where dinner would be served. The image of her sitting at the table by herself with the windows behind her full of the night darkness will never leave my mind. I felt like it was the best possible thing that could be done and I’ve never ever felt worse doing something supposedly noble.

Her ability to get around had been suspect for awhile. It was largely chalked up to increasing arthritis, then a misdiagnosis of Parkinson’s then the realization that is was something else entirely, something that eventually killed her mom.

My dad and I skulked the winter conditions to our cars, parked back by the hospital, both with the same realization that Mom might not be headed home anytime soon. We each made plans to get comfort take out after the long day. After collapsing into tears and a hug goodbye, I found myself at my take out joint awaiting comfort sweet and sour chicken, with a side of malaise and as I realized this morning (4 months later) grief.

Instead, I’ve got a ring side seat to watch bits of my mom getting taken away by dementia. It hits in phases. Foggy in the morning, clear and mostly herself midday and then the fog settles in the evening. It’s cruel and unrepenting and seemingly never satisfied. And never predictable.  It’s the cruelty of the disease that gets you.

She is still here, but bits are getting taken away, painfully, slowly, cruelly.

That makes me both angry and morose at the same time. I’m told that on my sunniest of days, I’m not exactly overflowing with mirth. But this tends to curdle even the sunniest of dispositions. In sitting with her the other night, she looked at me and answered that she was getting depressed and that obviously I am too as she could see it in my eyes. Even then, she’s still trying to fix other people. While at the same time, asked me to write as snotty an email as I could to get staffers at her place reprimanding for patient neglect. She wasn’t wrong. Staffers who could sit and finish their dinners before helping patients back to their rooms. The patients would have to wait. I wrote the email. I can be snotty. I know that is a shock

It’s been a couple months since I started writing this and the similar scenes have been replayed basically every few weeks, a new variation gets staged. There gets a new issue to be dealt with from movements, to falls, to phobias. As her spaces increase in familarity, it dawned on me with the latest trip that my knowledge as been taken for a shuffle. The track order of “Darkness on the Edge of Town” has been replaced with how to find the “good cafeteria” in one hospital. The Yankees’ lead in the AL East has been supplanted with where exactly the coffee stand is in another hospital. And I actually have developed parking strategies for various medical facilities. She tells me that she can see despression in my eyes…I just thought I had the bags. She’s still in there, but it sucks on a scale I can’t measure that she has to fight through such a fog.

Fate doesn’t seem to have much regard as it ought for souls. Nobody deserves the battles brought on by these afflications

“It’s been a real lousy year, Michael”

“Yes, Mom, yes it has.”