When You Feel the Air

Currently reading:  Stranger in the Woods by Michael Finkel / The Invention of Wings by Sue Monk Kidd / Forever by Pete Hamill which one day I may finish….

Weight:  IDGAF

Current Mood:  I used to be funny.  That’s my current mood.

Current Temperature:  Approximately the temp of Satan’s thong during a spin class

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It’s utterly oppressive outside.  I can feel the humidity cling to me like wet, muffling spider webs as I walk around my tiny garden, obsessively checking the progress morning and night; willing it to grow and show me something tangible.  This palpable heat, this heaviness, is apropos and so is my single minded drive of growing a garden.  On some level I realize that this stems from the need to bring life forth and nurture it; but it also stems from the need to take control of something…anything.  If these plants grow, I can take solace in their beauty and the success of a joint diversion and accomplishment.  If these plants wither, it’s because I did or did not do something.  I didn’t fertilize or water or watered too much or planted them in the wrong place with too much or too little sun; but control.  I can assume the blame or credit as is fitting.

My daughter is in the process of buying a house with her fiancée.  I will have an empty nest shortly and will have to fill my time that is currently occupied by Wee Baby Child and Mei Mei.  I will have to rediscover….me.  In some ways, though I relish the opportunity, it’s a scary thought.  Who am I if not…

Wee Baby Child’s grandmother?

Mei Mei’s mother?

My dog’s sorry ass substitute for my husband?  She’s a one hooooman kind of dog.

Magilla’s wife?

My parent’s child?

My cousins’ daily source for eye rolls?

It’s amazing how much my identity is invested in the health and joy and well being of these individuals.  I wouldn’t change it for anything in the world, but it’s the first time in a long time that I will have the opportunity to live a life for me on my terms.  My husband and I are just fine, thankyouverymuch, but he has never been one to tell me what to do.  Nor do I tell him.  We are incredibly independent and singular people and have struck the magical balance of togetherness….autonomously.  I’ve always been the kind of person that can only handle so much togetherness before I start to gnaw at the restraints.  I need and covet my alone time, mostly because I’ve always lived on some level of organized chaos.  I seek some level of solitude on a daily basis.  Well…I’m about to get it aren’t I?

On Sunday, I posted a picture on Facebook of me with my Dad.  It reminded me of happier days, of easier days when I didn’t have to watch him struggle.  Do you see that smile of his?  That smile told me every day that no matter what this life threw at me, I’d have the strength and humor to bull through.  His humor and that smile were amongst his gifts to me.

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A young Mrs. Magilla on her way to a prom

I also took the opportunity on Sunday to go see my Dad.  Without betraying his right to privacy, I’ll let it suffice to say that he is in a place which is for his own protection and those around him.  He is violent now – physically and verbally and they are desperately trying to find the magic combination of medication and therapy that works.  He didn’t know me.  Do you want to know the definition of irony?  I wished my father a happy father’s day and he didn’t know me.  It seemed to me, that if I had to take a guess at it, he was in his twenties in his mind.  I, literally, wasn’t a glimmer in his eye yet.  I struggled to converse with him, desperately trying to find something, anything that could keep a conversation going.  We mentioned family and friends to no avail.  We spoke about the weather.  I made shit up just to keep the conversation going in a positive direction.  It’s a two hour drive one way to see him because he’s in a highly specialized facility to help him get through this violence.  A part of me was performing some quantitative exercise to figure out how to extend the time with him.  If we drove four hours round trip and he’s only capable of a half hour visit, can we drive around again for an hour and come back to get another decent half hour visit?  These are the kind of mental calisthenics we went through.  My mother was diving through the decades as well and we both realized that any control or authority we may have once wielded is effectively mute.  His hands started twitching restlessly, one chasing the other in a display of burgeoning agitation.  I watched it growing in him as he wrung his hands and then tapped them rhythmically – all fingers tapping at once with a gradual intensity.  Finally I saw him drumming his fingers over and over and over a gesture I remember from my youth which inevitably meant I was getting a lecture about whichever transgression I had committed that day.  It was a measure of control he used to keep focus on the task at hand of disciplining his once again (and again and again) wayward daughter.  It prevented him from saying things like, “Well, if you weren’t such a stubborn _____”, because he knew how much words matter and how much they can either wound or heal depending on how they were used.  He always tried to use his wisely and they were always memorable.  My dad knew how to turn a phrase.

The picture below is from his last diagnosis in February 2017; in addition to Alzheimer’s and vascular dementia, he was also diagnosed with Lewy Body.  The doctor who was evaluating him and asked him to draw a house.  Then the doctor instructed him to write down the instruction just given in it’s grammatical entirety.  Then the doctor asked him to write down what was on his mind.  He had labored to accomplish the first two lines, but when the final instruction was given, he looked down at his hand which started to slacken.   When he looked up again, he looked right at me and right through me with that famous smile and wrote the last line.

Dad note

I realized then and there, that as gentle as my father is/was; he has the heart of a lion and the soul of Henny Youngman.  One day, it may be my turn to stand where he is now.  I’ve got a 50/50 chance that my loved ones will battle this unseen force and debilitation.  In keeping with the lion’s heart, I will probably face it roaring.  Maybe that’s what Dad is lashing out at with what little rationality he has left.   And while I am filled with sorrow at this loss of gentility, I will rage on with him if this is the last vestige of his ability to fight.  I started this wondering, who am I if not….

I am the lion’s daughter.  Which makes me a lioness.  With an attitude.

Rage, rage against the dying of the light.

Rock the hell on, Dad.

 

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Confessions of Groddler

I feel like a grown up toddler. A groddler if you will. A groddler in dire need of a time out.  For a week.  In Paris……with wine but no email or phone.  The only way people can reach me is carrier pigeon.  That’s my idea of the time out needed.

Things are changing fast.  We are going up against the very basis of a very broken system in which our elderly are cared for.  I got chastised by the social worker the other day that I wasn’t around enough.  That’s cute.  In addition to this…I have 18 other things to address today.  Oh while you’re lambasting me on my social etiquette of dealing with dementia…have you done your job yet?  No?  Dad isn’t placed and he’s still restrained to a bed because you’re blaming anybody and anything else; because you want another facility to do the job for you.  Or my mother.  Or me.  You may as well lay a human being on my dining room table and tell me to perform open heart surgery.  I have not a clue as to how to navigate this.  But sure, tell me of my shortcomings.  I’ve NEVER heard those before.

But that’s my groddler talking.  I’m mad.

I’m mad at the hospital.  I’m mad at the healthcare system.  I’m mad that my father worked like a dog his entire life and this is what it boils down to; which facility will take him only because it’s lucrative for them.  I’m mad that our culture denies the elderly basic decency.  I’m mad that I can’t talk to my father anymore on anything other than a 50 word basis.  I’m mad that nobody is equipped to deal with the very harsh reality that sometimes, Alzheimer’s patients get violent.  They’re not doing it on purpose, but the family is left with the aftermath of these events like we personally cultivated a psychopath; as if we planted the seed and have been waiting in the wings with a watering can and fertilizer waiting for this particular whackoblossom to bloom.   You can buy those psychogardens on QVC on easy pay right?  Of course!  They grow well right next to rose bushes and honeysuckle vines…that way they have something to perfume the stink of all this BULL CRAP that they are handing these vulnerable families who are terrified for the safety and well being of their loved ones.  That somehow, this very unpredictable facet of Alzheimer’s becomes a character flaw on the part of said patient and/or family.

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I got your garden right here

I don’t know the rules to this game.  I don’t know why he’s doing this.  The man spanked me once in my life.  Some would argue that I probably should have had more than a few spankings, but there is the reality.  He spanked me once and it was the equivalent of being whacked by a feather.  That was the blunt force behind that disciplinary action (TEENY THWUMP…let that be a lesson to you).  This is not a violent man.  He’s trapped in his own mind and sadly has little say in the working of said mind any longer.  But because it’s a smaller portion of patients who do actually have this awful consequence, there is little in place to help them or their families.

They don’t offer classes on how to steamroll headlong into the system so I throw baby tantrums.  It’s never without purpose.  I don’t throw myself on the floor and wail.  But I do this.  If anyone in power is reading this…anyone in healthcare or government or care facilities that are supposed to care for patients…shame on you.  I hope you cry when you read this.

GRODDLER…OUT!

Go Home Alzheimer’s…You’re Drunk

Preface:  There has been a mandatory hiatus from this.  Sorry/not sorry.  I know it was abrupt.  I know it was unexplained.  I’ll try to explain now.

As for finally breaking my silence?  This is partly my own therapy because the grief/anger/fear/horror/grief/anger/fear/horror/fatigue/grief/anger/fear…just sometimes gets to be bigger than rationality.

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My father is in a lockdown unit.

He’s restrained to a bed because at this point he is a danger to himself and others.

He is racing from one stage of Alzheimer’s to the next, over and over again until it seems that there are too many stages to list.  I’ve railed at the world, I’ve retreated, I’ve not yet cried.  I’m still waiting for that.

He told me yesterday that he lost the keys to the apple strudel.

And while I had a private chuckle for that brief second, the day more or less consisted of a loop from hell in which he’d struggle against the restraints telling me he had to get to work and me telling him he didn’t have to go to work but needed to rest.

I have to go to work

No Dad, just rest.  I’m here

I’m late

No Dad, you need to rest.  You weren’t feeling well last night.  Please just rest.

What am I stuck on?  I can’t get going.

You’re in the hospital Dad.

What the hell is going on here?

Good question.  What the hell is going on here?

I had to be escorted by a guard into the wing of the hospital where he’s being kept.  I had to leave everything in a locker; my purse, my coat, my phone, my kindle…everything.  I had to be checked for anything that could be construed as a weapon.  They wanded me.  Like I was walking into a prison.  Like he was dangerous.  Like he was violent.  Like he was a crazy.  Like hell….

What the hell is going on here?  I walked to the nurses station to hand over legal documents and living wills and it was all clinical and tidy.  I didn’t even notice the restraints at first.  My first thought was “Are you frigging serious?”  His joy at seeing me faded within less than thirty seconds.  His face was covered in patches of red, irritated skin; a sure sign of stress.  He smelled of sweat.  His eyes were unfocused.

24 hours earlier, he was calm and smiling and happy.  16 hours earlier he was removed from his nursing home and brought to the hospital because he attacked someone.  10 hours earlier I was finally leaving the hospital to drive in a torrential downpour and heavily weighed the option for a moment of driving to California.  4 hours earlier I woke from about 2 hours of sleep to face the facts that we are rushing towards the last stage of Alzheimer’s like a freight train and I can’t stop it.  We don’t have a timeframe because physically he’s probably the healthiest he’s ever been.

I feel like some hapless, helpless heroine.  Like Jenny from Forrest Gump.  Dear God, make me a bird…so I can fly…far, far away.

Alzheimer’s is like the party guest that you never really liked anyway but they happen to be married to your friend.  They’ve eaten all the hor d’ourves and drank all the martinis and tell the most inappropriate stories and is staying at the party until well after you’ve hit your limits of patience, kindness, rationality, endurance and civility.  Kind of like leaving the hospital at two AM.  It’s just not conducive to reason.  Alzheimer’s outstays it’s welcome.

It robs you of your loved ones.  It slowly and methodically kills their thoughts and abilities with no signs of remorse.  At one moment after I told him he should rest yesterday, I saw the violence there.  It lasted for less than a second, but it was there.  It was pure anger.  What I suggested was not part of whatever narrative was in his mind.  I saw it lurking under the haze of confusion and I realized that even though my mother and I know this man better than anyone, we don’t know Alzheimer’s and that’s the bastard that’s taking over.

And he would hurt me.

And that’s why he’s restrained on the bed.  And the violence is explosive and sudden and without warning.

Last Sunday I was at the nursing home at 11:30 at night because there had been another incident.  They tested his competency the following day.

John, I’m going to say three words and you repeat them, okay?  Soap.  Blue. Bed.  (Pause 15 seconds) What were those words?  

I don’t know.

What day is it?

I don’t know.

What year is it?

I don’t know

What month is it?

I don’t know

Who are these people sitting with you?

My wife and daughter

What are their names?

I don’t know.  

I wanted to scream.  Stop.  Stop asking him because he doesn’t know and if he doesn’t know any of the answers then that make this bullshit real and I can’t fix it and I fix everything so stop.  Shut your damn mouth and stop.  I wanted to scream that in his day…lady…he could’ve answered every one of those questions and then tied her in a pretzel knot with the weight and breadth of his knowledge.  He was smart!  Damn it! Who the hell do you think you are?

What I did instead was reach over and hold his hand and smile like this was the most normal thing in the world that he couldn’t remember my name.  And who she is has no bearing on this situation.  She’s a lady who is simply doing her job, but that’s the level of horror we carry daily in this family now.  That somehow I felt that I needed to defend him against the reality that a disease with no conscience is killing him slowly and taking with it the one thing he prized.  His intellect.  I’m usually the warrior.  Now I’m an observer and a passenger.

Soap. Blue. Bed.

Last Tuesday I was there walking him up and down the hallways until he collapsed in exhaustion in a chair and I could finally get him to agree to take his medicine after refusing it for hours.

I don’t know what will happen after this.

I don’t know how we’re going to keep going.  We will, but I just don’t know how.  I don’t know how much longer he will last in this hellish in-between world.  I find myself rushing through the stages with him because he’s dictating the pace in which we run in this downward spiral.  And the really horrendous part of this?  The finish line is something I actually welcome at this point, simply because he would hate this.  I do know that I miss my Dad.  I want him back.  I want my Daddy.  I miss his advice.  I miss his wit.  I miss his quiet bravery.  I miss that smile that told me it was time to pull one over on Mom.  I miss his mind, his humor and strength.  I miss him.  I’m scared and torn and angry and I always leaned on him to tell me what was right.  I always trusted him to tell me the truth, even if I didn’t want to hear it.  So tell me Dad, is it wrong to wish you peace?  Because the truth of that is unutterable.

I would like to give a shout out to the nurses and staff who care for him.  You will never know how deep my gratitude for you goes.   Even the bitchy one in the red shirt who looked at me like I had six heads when I asked if the doctor had evaluated him yet.  You too.  You snot.

The Nuts On My Family Tree (No Really It’s Just Me)

I am woman….hear me blow snot bubbles…..

I am also a card carrying member of the “sandwich generation”.

And I would like to punch whoever came  up with this notion of superwoman right in the left boob.

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Suck it Enjoli!  What’s wrong with asking for help?  Idiot!

#ineveraskforhelp  #becauseimstubbornnotbecauseiminvincible #letsjustgetthatstraight

Last night I hit a proverbial wall.  I tried to body slam my husband into it with me as I flailed through my house looking for a lost item.  This was the second crisis phone call of the week.  The first one was Tuesday night with my mother pleading that I speak with my father who insisted that…

… three men…

…picked him up from somewhere…

…drove him around and threatened him…

…scared him and said they would hurt people…

…and dropped him off at the place he is now and he has no money and nowhere to go and he can’t pay the bill for where they put him…

I did the precious little that I could to assure him that he was safe and I would never let harm come to him which he promptly forgot because he has little to no short-term memory left.  And round and round we go.  He doesn’t know his home.  He doesn’t know my mother.  He doesn’t know where his money is or if he should go to work.  He tries to help but only gets in the way.  He tries to remember and can’t and we get frustrated with him and then feel the guilt because none of this in our control, let alone his.

Last night I got the call that he lost his wallet.  I searched and at one point stood in my living room covering my face with my hands as I fought off tears.  Maximum fusion was met.  Critical mass.  Defcon status.

When they tell you that a loved one is ill, I think it’s human nature to cling to the furthest marker of the health barometer.  My father was diagnosed with Alzheimer’s in 2013.  The life expectancy of an Alzheimer’s patient is five to ten years.  So ten right?  Ten years is great.  One whole decade.  We can pack so much life into ten years.  We got this.  By then, who knows, they’ll have a cure.  This is what went through my mind upon his diagnosis; coupled with an overwhelming relief of finally being able to define what was happening to him.  Isn’t that a grand word?  Define.  Oh it’s been defined alright, but we all deluded ourselves into thinking that somehow we’d escape the dirty details.

They don’t prepare you for things like how to tell your mother that her marriage of almost fifty years is effectively over.  There’s only one participant left in it.  Spouse has been replaced by caregiver which is a modern-day synonym for superhero.  Screw Batman….he’s an idiot.  Have you met my Mom?  That’s a superhero.

They don’t tell you that you’ll have to face the stark terror in your loved one’s voice as they imagine horrible things happening and you can’t comfort them because in their mind they don’t remember who you are.  They don’t believe you when you say it’s alright because they’re old and tired and truly believe that all of their money is gone and they’ll be arrested momentarily for being a bum.  That some days they believe they’re 25 and not even married yet and the lady who is so nice and cares for them isn’t their wife but a nurse and then they catch a glimpse of themselves in the mirror and don’t see the hale and hearty 25 year they think they are.  And you have to watch their face drop in horror as the reality settles on them again and again and again.

They don’t tell you that Medicare covers relatively nothing in terms of adult daycare or visiting nurses.

They don’t tell you that your marriage vows…the mind’s eye promise that as their spouse you’ll see it through to the bitter end rarely happens.  It’s too much and at some point you will have to offer up your spouse to strangers to care for them.  Or that your daughter who tries to help truly sees what a marriage is all about.  It’s not the wedding day or the pretty ring he bought you for your anniversary.  It’s dressing him.  Bathing him.  Blocking the door at night so he won’t wander.  It’s loving him in spite of sometimes a very unlovable behavior.  It’s smiling at him when you want to cry.  It’s quietly redirecting his attention not to remembering the good time, but forgetting the bad times he’s grappling through right now.  My mother has truly shown me what marriage is.  So has my husband as I reconcile all of this information.

They don’t tell you that in addition to balancing your own life, work, house, chores, children; that now you’ll have to keep tabs on keeping the caregiver in balance as well.  Because if they go, this whole house of cards goes with them.

They don’t tell you that you have to discipline your parents for hiding stuff from you.

They don’t tell you that you get angry.  That some days, you resent your entire life being put up in the air ad infinitum.  They don’t tell you the horrible weight of guilt for ever feeling angry about any of this.  They don’t tell you that to feel this way is human and very, very forgivable.

So my husband has stood by me through all of this.  This post is truly a love letter to the man who doesn’t like facing his wife falling apart.  I yelled at him that he wouldn’t even hug me because he was such a caveman and that women cry and it wasn’t tears of sulfuric acid that would dissolve all of his chest hair and what the hell was wrong with him that common sense couldn’t dictate in his world that perhaps I need comfort.  What kind of a monster???

SO WHAT DO YOU WANT SHANNON?

ME WANT HUG CAVEMAN.

So he held me as I choked and sobbed.  My father is gone.  He’s still here but he’s gone.  And I faced that fact down yesterday as I calmly tried to reassure my mom that we’d all be okay through a series of phone calls to gauge the status of what needed to be done.  I cried until I semi dry heaved.  I cried for my Daddy.  I cried for the fear I heard in his voice.  I cried for my Mom.  I cried for my husband who is forever helping me pick up the pieces.  I cried for my dog who was upset that I was crying.  I cried for my daughter who is trying to juggle her own Titanic sized list of responsibilities.   I cried because I needed a pedicure.  I cried because I can rarely make plans anymore.  I cried because the only comfort I can give my father is to shelter him and feed him and read to him just like he did for me as a child.  I cried for things I can’t control and even a few that I could.  I cried for the frustration that I, the one who always comes out on top, couldn’t win this one.  There’s no winning.

So Magilla, God bless his dear heart, tried to comfort me with sweet words.  He said softly, “One day at a time babe.”  I snarled back that this wasn’t AA.  He lamented that there was so much weight being put on me, “Babe, Mei Mei went back to school and you’re watching Wee Baby Child 4 nights a week, and he just started school and your Mom is leaning on you a lot”.  Queue my mouth railing and ranting that my mother was a strong woman and he just didn’t get it and Mei Mei needed to further her education because what if I got hit by a bus (pretty sure this sounded like an excellent alternative at the moment in his world since I’d made it clear he couldn’t even breathe correctly on this fine evening BUT HOLD ME).

He finally shook his head and informed me that I wasn’t the only one.  “We’re all in this”.

That’s it.

We’re all in this.  Whether our loved ones are fighting a large battle or a small, we’re all in this.  Whether we are fighting a large battle or small, we’re all in this.

There is no level of sympathy required.  I do what I do out of love for my family.  I was raised to believe that family is the only thing that matters.  It is the end all be all of our existence.  That being said, we do what we do for those we love and who love us.

We’re all in this.  None of us are immune to aging.  None of us are immune to watching our loved ones die.  None of us are immune to our peculiar reactions to these events.

I don’t write this for pity or for any other purpose than that of stating simply for anyone going through something….

Therefore the grace of God go I.

I lean on the strength of others in my life that I know love me and don’t judge me for my humanity so that one day they may lean on me while I do the same.  If this isn’t the bare essence of what our lives are meant to be, then I don’t know what is.

We’re all in this.