Tuesday, October 28, 2014

My Dad has Dementia. And It is Hard.

"It doesn't matter who my father was;
it matters who I remember he was."
--Anne Sexton
You know where you are at this moment, physically at least.  You know that you like cereal versus toast for breakfast, that you prefer your tea hot and coffee iced, that you’re partial to all manners and shades of pink.  You know this.  You know the kinks in your character and have tested their limitations.  You know you’d prefer to read than run and look forward to the stretch of a yoga class.  You remember lines from movies that make you smile to remember them.  You can recall just what you wore when you saw it, and the perfume in the air that day.  You can close your eyes and recall your first kiss, the first time you held your baby, what it was like to break…anything.  Over time, the peaks and valleys of your mind and brain have sharpened and intensified.  You’ve given up the New York Times crossword in favor of a daily mediation.  You’ve finally mastered the cryptic tones of your teenager and can decipher exactly what is needed for breakfast.  You feel full of love and can locate it.

Suddenly or slowly, then, pieces of what you knew are gone.  It becomes difficult to discern if bacon always made you happy.  Flower names fade.  You ask for a cup of coffee and do not understand the register of shock of those around you.  You ask for a piece of cake instead of fruit and you think a small bomb went off for all the consternation that follows.

As days pass, and weeks fold into them, the rhythm of daily tasks become decidedly off-key.  The toothbrush is there, but then what?  You put the kettle on and forget that it is there, opting to take a walk instead.  You get in the car and forget where you’ve got to.  One day you wake up, and, nothing at all seems the same.  You may rebel at first, it is scary, you don’t remember the blanket everyone says you made!  Resignation comes later.  An
acknowledgment that perhaps what you know is only the step in front of you.  And that everything else is just moving by like a slide show with pictures, colors, movement and speech but it all comes differently, slowly and with the most extraordinary difficulty.

Dementia does this.  It is like a roiling snake, swallowing whole your life of memory and deciding bit by bit what skeletal remains you are allowed to keep.  There is still so little we know about the capability of the brain to focus, rewire, adjust and compensate.  We are just on the cusp of learning more, ever more about it.  What we do know is what happens when dementia strikes, the bite marks of it darken and corrode, a hole whose crater spreads until areas for breath, touch, taste, and sight becomes enveloped in it.  The progression can be rapid or slow.  It all depends on the size and the type of snake. 

My Dad has dementia.  And it’s hard.  The piece of my story here is just one of the puzzle of how it has come to reside in my family.  There are so many other threads of this vast blanket of loss, each one different and each one important.  It doesn’t seem to affect you, until it does.  Here’s a length of my thread along with a place for some direction and answers if you happen to be navigating this road now.

“I’m sorry Dad.”
“Dad, you cannot talk to her.”
“I said GO!”

If my father could be outlined in color, I think it would be a fierce red.  Angry and passionate, filled with indignation and hunger with a base of the most murky and impossible blue.  They are, interestingly
enough, not in opposition on the color wheel but on the same side.  Which makes sense, I suppose, when you think of artists always speaking of such highs of creativity followed by bouts of true melancholia.

Is he an artist?  I don’t think so.  Not in the traditional sense that we know of artistry, that we applaud or consider.  He has not painted, acted, sung or written.  His performance has solely been for an audience of immediacy.  And I was an unwilling, captive observer.

I’ve mentioned him before here, but a fault line has occurred since then.  And I find myself wondering, selfishly, why it is that he cannot seem to see the love his family has for him as he feigns left and straight toward a life that utterly broke him.

You need some backstory here, but it’s a tale that is so layered and complicated, I don’t know if I’m the one, just yet, to tell it.  But I can tell you a little, and this is only one small piece that can be added to and embellished to fill up a life.  This, in other words, is not the whole story.  But it is a tale in the collection that makes him who he is to me.   

There is the fact that my father seemed to me to be taller than the trees from way on high and that his judgments would fall hard from such lofty heights.  There were years, too many, of anger, drinking, accusations and emotional haranguing that left me often bewildered and looking, if not for a way forward, at least a way out.  A hot temper combined with an unquenchable thirst for whisky then vodka and wine to even things out, left daily imprints on the life my mother and I shared with him.  There were hurtful things, very hard to forget, contradictory joys that seem impossible to remember:

“You are too stupid to live.  You will never make anything of yourself.  You will be a failure.”

“You are my only asset.  The greatest gift I have ever received.”

There are worse things of course, and better things certainly.  But it gives the sense of the balance beam on which I walked, often with my mother an arm’s reach behind me.  With the wisdom of hindsight and life, of my own sorrows and joys that grew me up, I can see now that his rage was utterly misdirected towards me.  It was his own schoolboy self that was in pain.  Of parents who never felt he was good enough, of a profession that he did not attain, his perceived inadequacies come to rest sum total on my narrow shoulders.  I am aware of this now.  But then, no, I just knew I could not.  Not anything.  Those were confusing days.

When I married, there was in my small family a collective sigh of relief I think.  John could be relied upon, for my father, most seriously, it also meant that he could finally have my mother all to himself.  Her life’s work, although she never signed on for it as a newly graduated B.Sc. candidate, was to take care of a broken man she barely knew.  My parents met once before they married.  An arranged marriage that turned, into all things, a love story.  But all that changed when my mother passed away.  And the bottled rage of a life that was just mending, with an uncertainty of an endless future, sent my father into such a shock that he turned to his addiction as a way of coping with his loss and his fear.

He remarried, against my wishes, I thought it too soon, less than a year after my mother died.  An arranged marriage to a widow with four adult children living in the States.  Her sister and brother made these introductions to my mother’s uncle who began the process.  They kept moving up the date.  John and I desperately tried to keep pushing it back.  We secured a prenuptial agreement.  They were not happy.  My father, screaming at me as I was newly pregnant with our first child, blamed me for both my mother’s death and stopping his last chance for happiness.  I was exhausted.  They married.  And then, the truth came out. 

My father’s new wife had no inclination of tenderness or companionship for my father.  In fact, her sister and she planned very carefully and strategically to set her up financially through this marriage—and they did so, with catastrophic consequences.

My father, who was never, ever happy after my mother’s death, spent his days when he would visit here from the flat they shared in India, trying to find a way into her heart.  She denied him again and again.  His drinking increased and I was eventually summoned halfway around the world to come get him.  Without a settlement to his wife, I would never be able to get him out of the country alive.  So, with my aunt’s help, I paid her and I listened to it all.  I even cried for her, because I knew all too well what it was like to be on the receiving end of such a temper.  But in the end, she ruined him.  And he still loved her.  I brought him here and his diagnosis baffled the doctors who saw him, he was not entirely Wernicke-Korsakoff, because huge segments of his long-term memory had also been severed.  His short-term memory was completely gone.  A few truths remained: he had an unspecified dementia.  He would never get better.  Any further drinking would kill him.

When we came to visit this weekend, John checked the phone he had to receive calls from relatives and friends who wanted to know how he was.  When I first brought him here, it was a child’s cell phone (they do not make these anymore that are U.S. compatible), something he could not dial out on because it was essential that he no longer contact the woman whose negligence contributed heavily to his state now.  His diagnosis though, his dementia has no defined path.  He could decline rapidly or plateau for years.  In the four years since that trip to save him, his decline has been such that we thought it safe to get him a regular mobile. 

I stepped foolishly in this belief.  A synapse fired and a number was recalled and he and his (former) wife have been in contact.  She has been calling constantly wanting to see him and, apparently, have him sign something for her. 

When I see my father now, with my children or without, he doesn’t say very much.  He remembers very little.  He still knows me and the children and John, he remembers my mother, but he wants very little to do with us, with me.  He is usually irritated after an hour and sends us away as he stares into something I cannot see—a vortex of memory, a stormcloud of life’s decisions?  He has not remembered my birthday in almost 10 years.  It has come home to me, very clearly, how important these moments are for a child and how a parent is the only person who holds that particular key to that particular lock in your
heart.  I always leave him feeling resigned and a bit more chipped away.  It has been hardest on my eldest son, whose name is shared with my father’s, “Api doesn’t talk to me anymore.”  I hardly know where to look when the earnestness of such a statement is given to me.

And yet, at the mere voice of this woman, he has such strong feelings still.  Of wanting to be loved, of longing, it is maddening.  For him it will always be the elusiveness of wanting complete and utter earthly devotion that will signify love.  Only the corporeal will do.  Something tangible, I think, something that he can touch and feel, if compassion and loyalty and devotion and passion can be made visceral.  But this disease—what in the world does he have left to give her?  We took the phone.  And I feel so small.  His life has shrunk so much; he has so little to look forward to.  His days are endless, and the same and he cannot recall it otherwise.  He cannot take care of himself anymore and needs assistance with the smallest of tasks.  A man who treated justices on the Supreme Court now needs assistance to bathe.  If there is any consolation of the daily injustice of having your mind slip from you, it is that there is no cognizant recognition of that loss.  But the sorrow of it, the whole, huge sadness of what could have been and should have is the burden for
the witness who bears it.

His anger towards me is palpable.  It has been that way for a very, very long time.  This return to red has been pretty slow as his broken mind has tended toward the blue.  But when he turned away from me, curling on his bed toward light and hope that the window provided, a hand flipped over with a finger pointing toward the door, nails that I just clipped minutes before…I feel defeated.  And that I have lost my parents all over again.

I realized then, in my sorrow and my swallowed anger—anger that is so big and bulky that it is hard to force down past your throat—that I had forgiven my father and all I wanted was an acknowledgement of the love that I had being enough for him. But illness and wanting leaves no remedy for this.  His love for me may not have an end, but it is no longer visible. 

“When he shall die,
Take him and cut him out in little stars,
And he will make the face of heaven so fine
That all the world will be in love with night
And pay no worship to the garish sun.”  III.ii Romeo and Juliet


While I’m not sure of how the story will end, the trajectory of dementia is such that I believe the blue will intensify until it becomes the darkness of oblivion.  And, at that point, God will place stars for guidance to carry him home to something green and vibrant so he can realize, at last, the world of color that has waited for him all his life.

For more information on dementia resources, the first place to look is your local hospital’s dementia care unit.  Social workers there will have a list of places, specialists and care providers that can help you transition your loved one.

For more information about dementia and to donate to dementia research, please contact, the four star charity navigator ranked: Fisher Center for Alzheimer’s Research Foundation.


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