Tuesday, December 23, 2014

Clowncar on the Front Line

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I work and write from the sidelines of life with dementia, where Activities offer a much needed R&R&R (rest & relaxation & recreation). My longtime blogfriend Jeff, however, whom some of you may remember as Clowncar, lives on the front line: 
his middle-aged wife, mother of their two teenage daughters, has early onset atypical Alzheimer's. This year it forced her to moved into a nursing home.

I asked Jeff if he'd guest blog here. This is his report from the front lines, as of yesterday.


My wife didn’t recognize me today.  I have been expecting to cross this particular threshold for over five years, with an odd mix of dread and wonder.  There was a moment this afternoon, as I held her face, where she pursed her lips for a kiss and I gave her one, so somewhere inside that tangle of neurons she must have known who I was.  I am holding that moment close. 

I found her crying when I first entered her room, though I was assured that doesn’t happen too often.  When I sat next to her bed and put my arm around her as I held her hand, she put her head on my my shoulder and clung to me.  I don’t know if that was due to her recognizing me, or simply an inchoate need for comfort. 

She doesn’t make eye contact, with me or anyone else.  I have never seen her do this before, and it is unnerving.  It is not that she is avoiding eye contact.  Her gaze is sometimes wandering, or entirely absent.  The nurse attending to us said she has not seen this in many patients, so it might be peculiar to her particular flavor of dementia.  She seem to have problems with depth perception, reaching out for a spoon or a cup and missing it by several inches.  Sometimes she reaches out to something when there is nothing in the vicinity.  This may not be a fault in her depth perception, but a hallucination.  I have never seen her hallucinate before. 

Another new behavior is her mumbling nonsense words. Before today she was often non-verbal, or would get three or four words into a sentence before losing her train of thought, but she always spoke in actual recognizable words.  Today she was mumbling, and while you could occasionally pick up a sentence fragment or two, most of it was unrecognizable, a tale told in a foreign tongue.

The last few weeks have seen her agitated and aggressive and unhappy.  She has been bounced from her nursing home to the ER and back several times, with neither institution willing to take responsibility, and was finally transferred to a behavioral unit about an hour away.  Her drug regimen has been interrupted and off schedule, tweaked here and there, one drug added, another taken away.  All that stress—the changing locations, the disruption of her drug routine--seems to have stripped away what little remained of her personality. The real her. My real wife.  Or maybe personality is an illusion, and the veil has simply been lifted.

There is, of course, that kiss. She saw my face close to hers and pursed her lips to kiss me.  So it is not quite true to say she didn’t recognize me today, for in that one moment she did.  Some piece of her is still inside, resilient and unyielding, attempting to break through all the mental static.

I don’t know what will happen next.  All I know is I have seen this day coming, growing ever closer, picking up speed, a rolling train, tracks rumbling.  Today is that day.  We have arrived.


The Crow said...

Heartbreak! Utter, unending heartbreak.

Thank you, Jeff, for writing about this. You're helping dozens of us see what might be down the road for us, for our loved ones.

The Crow said...

And thank you, Fresca, for asking him to post here.

bink said...

Dementia is heartbreaking, as Crow said, and early-onset especially so.

You are right to cling to your wife leaning in for that kiss...it is still her.

Everything you describe, I have seen before in other early onset patients (I used to work on a dementia ward, and a friend's mother developed it at age 56.) The early dementia really does present a different set of challenges than aging dementia-- and sadly, the loss is more dramatic.

Hopefully, once a routine can be reestablished, your wife will become more peaceful again.

It's a hard road you are on. Be extra kind to yourself. God bless.

Zhoen said...

To love is to grieve, to grieve is to love.

Fresca said...

Thank you, Jeff---Writers such as you are a special kind of gift to because you can catch experiences such as this for the rest of us, like catching fireflies in a jar, so that when it's dark we can see flashes of light.
May you and your daughters know some comfort and joy with Christmas.
Love, Fresca