Showing posts with label Parkinson's. Show all posts
Showing posts with label Parkinson's. Show all posts

Tuesday, April 17, 2018

The Journey

The news finally broke that Barbara Bush had passed away.  It was not surprising – the press had reported days earlier that she had decided to forgo any more medical intervention and live out her last days on her own terms in her own home.  Even up to a few hours before the announcement there were stories that she was still talking as best she could to well wishers and sipping bourbon waiting for her own inevitable journey.  The news stations already had her obituary reeled cued up – just as I’m sure they have her husband’s ready to go as well when the time comes. 

I started to cry when I heard.  I had always liked her even if I did not agree with her family’s politics.   More than that, it stung because my own mother had passed at age 90 barely six months ago.  I had the sad knowledge of the preparation but knew that everyone who needed to be there was, even if George H. might not have been able to comprehend what was going on. 
I understood how important that last birthday was for both her and George – how it must feel to know that it would be your last one.  


My mother requested a special birthday for her 90th  and we obliged.  All my brothers and sisters were there – all five of us along with grandchildren and great-grand children who called my mother “G-G” for Great Grandmother.   She ate slowly as Parkinson’s had taken its toll over the last seven years.  Her caregivers were there to wish her well.  As best as we could guess – she knew people were there and she had a great time.  This was the second time in 16 years since my father’s funeral that all five Cody kids had been together.  The time before that had been at my mother’s 89th birthday – another milestone to celebrate.
 

For years now at Christmas, I made a point of getting our home-movies transferred to a
digital format and putting it on DVD so my mother could watch the memories she had chronicled so lovingly.  I sat with her after both her 89th and 90th birthday and we watched the home movies but with songs that I had dropped in like the Jackson 5’s I Want You Back or Johnny Cashes’ I Walk the Line since back then there was no audio to capture.  We stayed up late – past midnight when my kids had gone to bed – to watch my mother’s younger visage pushing strollers as a new mother of a young daughter and a toddler son.  We watched later as my mother and dad were in a financial position to go to Puerto Rico and  Mexico leaving their young brood in the capable hands of our maid Etta.  Going on vacation without your kids?  Unheard of in this age of helicopter parents and yet my parents were married almost 50 years until death did literally do them part when my father passed away in 2002 just a day after his 81st birthday and months shy of their half century milestone.  There must be something to not being around your kids 24-7 and just being a couple to insure your marriage's longevity.


Barbara and George H. Bush had been married for 73 years when she passed – the longest married presidential couple in history.  Of course, many of our presidents from the previous centuries did not live to see 73 much less have a marriage that lasted so long – but it’s a tribute to Bushes and my parents that they stuck with each other through thick and thin – no matter what.  Back when they were married – getting a divorce was a stigma and literally for better or worse so you had to figure it out.  That’s what made the Greatest Generation great – the ability to focus and not be distracted by an arrant Tweet or Facebook rant.  I remember seeing Betty White on SNL when she hosted. She thanked all the people on Facebook that had campaigned for her to be on the show and then said, “I’ve seen Facebook and frankly it looks like a big waste of time.”  She got a huge laugh from the very people who put her there.

I loved that Barbara took control of her passing – deciding to go into that good night with a few sips of bourbon and her husband nearby even if he probably didn’t understand what was going on.  He, like my mother, is in the end stages of Parkinson’s.  He’ll ask repeatedly where his wife is and there will be the constant painful explanation that she’s gone.  He will seem to comprehend it and then ask again an hour later with no memory of the explanation.  

These are the rituals that the sons and daughters of elderly parents must endure.  My sister Kathy was a rock the whole time my mother was up in Tallahassee after she was diagnosed.  She was the key caretaker for Mom, coordinating healthcare workers, schedules all while at one point battling stage 3 colon cancer (she is now happily cancer free).  Her dedication to my mother was heroic and she took ownership of Mom’s care.  Most of what the rest of us could do seemed inadequate and the responsibility was overwhelming.  I knew because we had taken care of Max’s dad who had suffered a stroke decades before and moved in with us after Max’s mother Joan died of a brain tumor when we had been married less than two years.  He was under our roof, so we had to get up in the middle of the night and help him to the bathroom, eat, bath and shave.  I knew hard it was to see a strong vibrant woman become someone who depended on the kindness of strangers to help her do life’s bare necessities.  She would ask me and Kathy – “I always exercised and took care of myself – how did this happen?”  We’d listen and tell her no one knew why.

I understood how you had to have the same conversation repeatedly and how you learned to hide your frustration because as much as you want to believe that they might be “out of it” they can sense when your nerves were becoming frayed.  George, Max’s dad, could sense that so I learned to try to hide it as best I could. 

I feel for the Bush family because their force of mother nature is no more, and their father can’t comprehend the loss.   At least my father went when he was still in full control of his faculties – it was quick – he sat in his favorite chair fell asleep and basically didn’t wake up.  My mother found him and called the EMTs but by the time they arrived it was too late.  The last time I saw my dad was over the Christmas holidays that year and the last thing I said to him on the phone was “I love you!” so I was lucky that I had no regrets in that department. 

So when we got the call that Mom might have about 48 hours at best, me we hurried down – praying we would get there in time.  We prayed my brother Steve would get there as well by bus from Miami and he did.  We made sure my mother was never alone and were told to watch for changes in her breathing.  Our 24-hour vigils sometimes included calls to come in and see Mom because we were sure this was it – but for many times that weekend – Mom was not ready to go.   She was not really conscious but I think she heard us.   She smiled when we sang her favorite song – “Almost Heaven – West Virginia,” by John Denver.  It was therapeutic to do a sing-along with a young hospice caretaker who probably saw this all the time but still managed to sing without a hint of sorrow – it was more like rejoicing.   My mother smiled with her eyes closed and even tried to mouth some of the words.  

Later that day, I pulled up the recording that we did the night before Danielle was born in 2000 which was a recorded rendition of The Night Before Christmas.  It was my dad, mom, Max and me reading the book and reminiscing with Amber who was four at the time.  It was a joyous time and looking back I was so happy I had captured the sound of that night – we’d have it always.  In fact when my niece and her husband Julio heard it, they couldn’t believe it was her – the voice was so strong and sure – it was the mother I knew.
 
We got Mom’s arrangements in order the day before she passed and it all seemed to surreal. Maybe it was because you had 12 people sleeping in Mom’s house which could only really sleep 4 people comfortably and we were sleep deprived even though we took shifts throughout the night.  I worried how my kids would do seeing their grandmother pass away and being in the room was optional – I was also not sure about my own reaction.  But even as we knew Mom would pass soon, everyone stayed positive – any squabbles that might have been brewing were brushed aside for the sake of my mother which is what she would have wanted.

On day three, it seemed like Mom still had lessons to teach us and she was not ready to yet.  The Sibs had been in such a good place after her birthday that having us spend another day together might have been part of her plan.  As the afternoon wore on- my niece Beth sat by her bed as Max, the girls and I took a walk.  When we got back – we watched a little of the 4th quarter of the FSU football game which was close but the Noles lost.  My sister Kathy and her husband Sal had gone back to their home to let out the dogs and were about five minutes away.  Beth came out to tell us that Grandma’s breathing had changed and after numerous false alarms this time it seemed like the time had come but Kathy and Sal were not with us.  I prayed she would get back in time.  My mother’s breathing started to falter and still no sign and Kathy and Sal.   Our large group started to filter into the room and I kept an eye out for my kids knowing that they had my blessing not to be there if the spirit did not move them – just being near would be good enough but they stood steadfast with the rest of us. 

I remember the left artery in her neck kept pumping wildly and it seemed rather surreal that she was going.  My mother, my jogging buddy, my mentor, my cheerleader – the person who encouraged me to “write your book,” she was leaving this earth in spirit.  Maybe the mom I’d known had been gone for a while but as she was passing I remembered how warm her hand was as we watched home movies to the beat of “We are Family” by the Pointer Sisters. 

Kathy rushed in and told her to “Go towards the light, Mom!” which I thought was strange because of course that’s where she was going to be with Dad, her older sister Elyse, her baby sister Ruth, her parents, and all her ancestors – they were just waiting on the other side – I was pretty sure if it.   Betty White’s mother once told her, “Death is that great secret and when it’s your time, you’ll finally know the secret.”  It was that pearl of wisdom and oddly enough not a bible verse that gave me comfort.

We called the funeral home to pick Mom up which is another part of the whole funeral business that just seems strange.  While we were waiting, we changed Mom’s clothes, picked out the ones for her to wear for the final journey and we decided to do her make-up.  Not in an over-the-top “Let’s make her look really alive!” way but more as a tribute because my mother would have wanted to feel like she looked nice.  This was another surreal moment as I picked out foundation and eye shadow to put on my mother’s now lifeless face.  I wondered if I would freak out but again this non-sequitur seemed to come and go and my mind somehow grasped it.  It was Sal’s idea to toast Mom before she went into the hearse.  

We all got a drink, for me and Amber who is 21 it was a very light wine cooler while other’s got wine, beer and the younger kids got a soda. We stood around the bed that had been the monument of vigils and toasted my newly deceased mother who was in a new outfit and fresh make-up.  It was very Irish as we told stories about Mom and the funny things she used to do and we laughed together as a family which is what she would have wanted.  My sister Sharon even quipped, “She must have thought – ‘Well the Noles lost again, I might as well go.’” There was laughter but make no mistake there was heartbreak as the reality set in.  The tears flowed in the hours, days, weeks and even months later - which is normal.  Someone who brought you up, nurtured you, hugged you, cheered you on and believed in you when the world didn't was gone - in a better place no longer limited by their physical maladies but gone to you now on this earth plane. The hole in your heart seems gaping but as time goes on it will seem less painful but losses by others can pull it open again. 

The death of another 90 something has triggered these fresh memories – and I feel for the Bush Family – I cry for their loss.  It sucks to lose someone you love but at least she was coherent to the end- making her own decision to die at home like my mother.  That’s a blessing to live 92 years and have the legacy of children, grandchildren and great grandchildren.   I’d like to think that no matter what your political affiliation – you can offer sympathy for a family’s loss  and offer empathy.  These are not empathetic times that’s for sure – but if nothing else, a grand woman’s passing should invoke respect, love and the awe of the gift we call life.   No one’s journey is ever the same but each journey is remarkable and recognizing that should bring us closer as human beings no matter which side of the political spectrum you sit on.

Wednesday, August 20, 2014

The Long Goodbye

I came home from work on August 11th to find my husband looking shocked.  He was slowly taking out dishes from the dishwasher and said, “You know Robin Williams,” he started.  “Yes,” I said smiling wondering what the punchline was going to be.  I didn’t expect the next sentence.  “He died and the early reports are that he killed himself.”  “Wait - how? Why?” I asked as millions of people around the world did when they heard the news.   Those of us who do comedy improv, looked on him as our Pavarotti - the man with perfect pitch and timing.  

I was in shock and I hoped that this was some sad prank like the fake internet hoaxes for Eddie Murphy and Bill Cosby.  I figured if I waited a couple of hours, the internet would figure out it was all a big cluster fuck and the man who made me laugh thousands of times would be fine.  But once I went to the computer, truth was all too real.   Legitimate news sources were reporting on his suicide.  Suicide - I knew he had a problem with depression but Jesus, suicide?  I was numb.   I mean I’m a very emotional person, but I could barely cry.   I posted my shock on Facebook as many people did and even posted his best moments on Whose Line Is It Anyway? a show that does improv games.   I cried a little more but not the soul wrenching sobs that should have come.   This guy was a comedy legend - what happened?  

As the days went by, and the details emerged it got more heartbreaking - he had financial set backs, his sitcom The Crazy Ones was cancelled - he was deeply depressed.   The depression was the one that was getting me.  I’ve suffered from depression off and on since high school and when people would talk about how selfish he was for killing himself it was obvious they just don’t understand depression.   Some people self medicate with drugs and alcohol.  For me, it was obsessing on my weight, purging, crying and never feeling good enough no matter how pretty and thin people thought I was.  I tried to explain on Facebook that depression is like a cancer of the mind.  You would not say, “But she has such beautiful breasts, they had everything how could they get cancer?!”  It’s the same thing with depression, you can have wealth, success and be considered the funniest person on the planet but once that tumor takes hold of your psyche, it can over power you if it goes undiagnosed and untreated no matter how big a movie star you are.  

I remember in college having crying jags so bad, I was not sure if I would ever stop crying.  It was pretty bad after Danielle was born which really sucked because I had this beautiful baby but just felt like I was letting everyone down.  That’s what depression does, it pulls you into a vortex of self doubt, zaps your energy and you close off from people.  Worse is when people take the “just get over it” attitude because once you go down that slippery slope, it’s hard to pull yourself back up.  You would not tell a person with cancer to just snap out of it, don’t ask a depressed person to do the same thing.  But still the commentators on FOX, Rush Limbaugh (who also self medicated and has experienced depression) commented on how cowardly it all was.  Fucking A - these people had no idea and just because you are laughing on the outside doesn’t mean you’re not hurting on the inside.  

But you learn to cover up and for some people, humor is a great defense mechanism.  It keeps people at arms length if you can keep them laughing they won’t get too close - just keep them distracted by good humor and they will think everything is fine.  When the life of the party actually stops trying to crack you up and is serious, it’s a good sign - it means that they trust you enough to let the walls down and they want you to come in.   So I understood in my own way what is was like to be a funny person and still be someone who could walk off stage after making a packed house laugh and feel unworthy. 

A few days after his death, I was feeling a little better but then word came out that he was also suffering from Parkinson’s which had been recently diagnosed.   That hit me hard because my mother has Parkinson’s and I know first hand how that disease can take a healthy person and make them lose the ability to walk and do things for themselves.   It clicked as to why he might have done this - maybe he wanted to go out while he could still do things for himself.  My mother ate right and exercised and she got it - what was to keep me from getting it too - even if they have not be able to establish a link through heredity?  Shit, is that my future?  Would I want to be a burden to my family?  I sat on the computer that Saturday, tears rolling from my eyes because while I hate what he did maybe that was a saner reason than just depression.   

I needed to shake this funk and the kids really wanted to see a Robin Williams movie.  That night, we watched Mrs. Doubtfire and decided to recreate the cake in the face 
“Heellooo!” scene.  Each one of us - the kids and Max and I got to have a ton of whipped cream on our faces with all the giddy silliness of toddlers.   You can see the video see by clicking here.   After it was edited and posted - I have to say I felt much better because I was remembering him for the comic genius he was not the person who had killed himself. 

I would have left it at that until I saw the Twitter posts from Rob Schneider claiming that the Parkinson’s medicine is what killed Robin Williams. That really fucking pissed me off because again my mother suffers from Parkinson’s and if he was in the early stages then he was probably not taking a ton of medication but then I don’t know that and frankly either does Rob Schneider.   To use the reasoning that he had lived with depression for 20 years without offing himself and then blame the dangers of Parkinson’s medication is stupid and fucking irresponsible.  My conjecture (because I don’t know for sure and won’t make an declarative statement) is that his wife was probably keeping a close look at his medications and would alert a doctor to to any severe side effects or complications beyond the depression he had already been experiencing.  If you use that argument then why isn’t Michael J. Fox a victim of suicide as well?  He was diagnosed in 1991 so by using that logic, he would have been gone by his own hand long ago and yet here he is raising money and doing the best he can with what he has.   

I think in the end, we’ll never really know what happened and that’s the sad part.  It leaves us mourning harder then if it had been a random act of fate like a car accident.  I don’t know if Robin will be our generation’s Marilyn Monroe - it’s still too fresh to figure out and there will always be someone who will try to give you the definitive answer as to why - but unfortunately there is none.   In a more spiritual sense, I’d like to think that maybe the manner of his death encouraged people to call suicide hotlines which kept them from taking the same sad path.   There will be no way to know the number of people his final act might have saved.  

I was running with my earphones and Never Had a Friend Like Me came on from my Pandora feed.  I went from a run to a walk and started to cry.   My prayer is that I’ll be able to hear his voice and not feel loss but a genuine joy that this comic genius brought to the world.  Now when I look at a plate of whipped cream - I giggle.  Laughing with him and not crying because of him is what he would have wanted.