December 3, 2014

The Thing You Fear

A quote that originated in a Virginia school for wayward boys and wound its way through a long chain to Pennsylvania has never left my awareness: "the thing you fear is probably the thing you need to do the most."

Keep that in mind as I tell you the story that begins with this.
 Which goes with this.
Every Monday, both of these go with me to visit the residents of a local nursing home.

No, you are not misremembering. I did say in some spring post that we entered Therapy Dogdom in order to work with young children who were having problems reading. But while we were waiting for local schools to return from summer vacation, I saw that the events of my life had been slowly edging me toward one of my last remaining Zones of Discomfort.

That zone circles inward from the unwell elderly in the institutionalized elderly in particular...and, right at the very core, the demented old person.

I left home for college and really never returned as my grandparents' generation moved from vibrant and Yiddish-accented sparks of life into the frail homebound. I did visit my grandmother. She was once a thriving one-woman black market, who routinely used her "little old Jewish lady with babushka" act at the Detroit-Canada border to smuggle gold, liquor and agricultural sundries past the clueless Customs Agents (sometimes with us kids in tow).

Now, she sat in a fog in a leatherette chair, in a row of women deep in their fogs in their chairs.  She opened her lips for my mother to spoon in strawberry ice cream.

I turned my eyes and refused to open them in that direction again.

But since my parents moved here, I am front and center in their aging. I try to surrender to the cognitive decline in one, the physical decline in the other. I try to understand who they have become, who they are becoming and yet ...I notice that none of us makes jokes about nursing homes anymore.

At the same time, this book crossed my path.

Still Alice
(And in a further demonstration of synchronicity, the movie will be released this Friday!)

Alice is diagnosed in her late 50s with early-onset Alzheimer's and this novel, written by a Harvard neurophysiologist, takes you on the wings of the disease into her mind. I was afraid to read it but found it startling in its tenderness. Then, the incredibly moving film Still Mine mysteriously appeared in our Netflix Watch List and I saw dementia from inside of a marriage in the hands of the lovely, lovely Genevieve Bujold (remember  Anne of a Thousand Days?)

It just seemed I was being invited to jump. Right into the center.

So I called the local nursing home and, in the last days of summer, Clutch and I went for our job interview. The volunteer coordinator walked me through all three units (when you strip away their euphemistic titles, they are assisted living, skilled nursing care, and dementia care) and invited me to drop by any of them on my weekly visit. Yeah, well, I thought, we would just stick with the assisted living residents for now.

Except that when the next Monday rolled around, I remembered the quote. The thing you fear is probably the thing you need to do the most.

I pushed open those big fire doors to the dementia unit... and I haven't looked back.

I wish I could show you pictures of my friends there, and in the other two units as well.  Of course, I cannot. I can tell you stories...of women who used to sew all their childrens' clothes or work for the local IRS, who were married to men who used to train police dogs or farm the land that is now our hospital...who claw through their strokes or their confusion to let Clutch kiss them....who I think are trying to tell me they want to pet Clutch but are actually yelling at me to stop standing in front of the TV!

And yes, many of them are lined up in those rows, those nightmarish rows. But Grace (the virtue, not the blogger) has come into my life in the form of a drooling boxer, who knows how to just be...with any one in any place. And so I follow his lead and I stay with them in their who they are...however they are.

In their stories that involve a father who died in WWII one week but prevented her from getting a dog the Thanksgiving dinners that "were at somebody's house but they wouldn't tell me who" or in agitated recounting of "the really large lady that came in here and scared me." In memories of scoring a dining room table with five leaves at a secondhand shop, of going on Sunday drives so Dad could see how all the other farmers' crops were doing.

This week, I visited a 90-year-old woman who splits her time between sending handwritten advice to the Democratic National Committee and working her way through all the Nancy Drew books she never had time to read in her younger years. We had a spirited discussion about Nancy's beau Ned Nickerson and why they never seem to get it on.

She gives Clutch a fortune cookie before we go. This was his fortune this week:

Of course, the ability to be with residents in who they are is easy for me, because they are strangers and I am not stuck in the memory of What Was.  But it is damn good practice for me, so that perhaps I can stay that place...when it comes time to be with those that I have loved my whole life.

Epilogue: I googled the "thing you fear most quote" and found out that it got pretty mangled on its way to me from Virginia. It actually comes from Mark Twain, who said it better: Do the thing you fear most and death of fear is certain. 


  1. have read three times so far. need more. but each time, there are soft love tears.

    1. I think it was the image of you sitting next to Betty during singalongs that first cracked the door open for me, Grace.

  2. brave you for entering the world of scary people, to put it bluntly; I too fear this world of dementia, loss of dignity, foggy unknowns......I have heard that 'in the end' that is if we live long enough, we all become more or less demented, even if only for a day, your last one. I'm still trying to understand why we do, why our bodies and minds reach this stage, after you've managed to survive everything else life has thrown at you, and I sometimes think, that in a so-called natural state we perhaps would then just stop eating and drinking, go and sit in a corner and wither we go and live in old peoples's homes et cetera and we're not allowed to wither, but are spoon fed and kept alive, but I'm probably being to black-and-white about it all. I have hardly any experience in this field, my husband's mother has been living in a care home for the past two years, on a 'safe-floor' she doesn't seem happy, mostly bewildered and she's becoming more and more confused and is now at a stage where she often doesn't recognize her children; she used to be a fairly independent woman, with a full-time job, outdoors a lot in her garden and with her dogs, all that has disappeared, I'm not sure she still is who she once was, if any of that is still in there.
    My parents (80 & 83) are both in very good shape, of course they are elderly but nothing for us to worry about, yet.
    On a positive note, I'm convinced you and Clutch are helping to make these people feel a lot better, that stroking a dog awakens a sense of connection, of being connected with other living beings, on a wordless level. I saw a documentary a few weeks ago about a guy+dog who do what you and Clutch do, and it was amazingly cheerful to see their faces light up as soon as the dog entered the room!
    I'm sorry to hear your parents' health is failing, for indeed you know these two persons well and their demise must be confrontational, aging and everything involved becomes personal, again I admire you for having confronted your fear and decided to dive in.....

    am also reminded of The Love Song of Miss Queenie Hennessy (sequel to Harold Fry) where we catch a glimpse of life (and death) in the hospice, although this is not quite the subject of your post, it does deal with life-chapter-four.

    you have a wonderful way with words Julie, the exact right amount of compassion, humour and seriousness to make this whole difficult subject matter digestible and bearable, thank you for writing it here and thank you too Clutch!

    1. So much here to bite off...well, the thing I am learning, trying to move from learning to Knowing, is that Who She Was is what I think turns her into Scary Person to those of us on the outside. Again, it is easier with strangers, but what if we could just say, "this is who she is now.." Maybe we wouldnt be so apprehensive, maybe we could be with them more. The way we are comfortable with toddlers...maybe "age appropriate" is a concept that can be applied at the far other end of the spectrum.

      Last week, a peaceful woman I know well marched out of the bathroom very agitated and Clutch just trotted over and within minutes of petting him, her smile returned. I I know we make a difference but the difference is two-way, since it is a way for me to connect as well.

      Still haven't read Miss Q yet, its definitely on my list.

      And by the way, I am a big talker because we don't really have much to do right now with the residents who are just vacant-eyed in their chairs...I am hoping to find the strength to meet them there as well, but that's going to take a lot.

  3. When I first read your post, I chose not to look at my local library to see if they had Still Alice ... but upon re-reading it, I have placed a hold on it, for this is indeed the thing I most fear.

    And Saskia's comment about going in a corner and refusing to eat ... when my dad was diagnosed with bladder cancer, five years after losing my mom, that is exactly what he chose to do ... called Hospice, checked himself into a nursing home and starved himself to death. Dear God ... it was awful. We as a society need to find a better way to depart this world when our minds/bodies are no longer capable of sustaining our essential selves.

    But until then, having contact, close physical contact, with a warm, living, breathing creature is surely a gift beyond measure ... a way to salve the losing of that essential self.

    1. So sorry to hear this about your dad, Liz, it must have been brutal to be in this experience. I just read that many nursing homes are allowing residents in the assisted living units to bring in their pets to live with them, how wonderful that could be.

      Do you remember Tuesdays with Morrie...the author is aghast that this vibrant man now needed to be sponge bathed and changed and Morrie said, "its so nice to have someone do this, isn't it?"

  4. Oh golly. This post does touch my heart...and my fears too. Loud cheers for you and your willingness to walk past your fears into the fog. Deep thanks to Clutch for going with you and with everyone there. Sometimes a companion makes all the difference.

    Ned Nickerson...shadow man.

    1. Thanks, Dana...I definitely hid behind him at the beginning. And oh, you must have read The SEcret of the Old Clock?!??

    2. Of course. I read every Nancy Drew that was available in the fifties and sixties. They all blur together now, but I remember especially liking The Secret of the Black Keys.

  5. this is beautifully written, Julie...bringing in so much in such a clear much that
    is difficult to express and difficult to describe in a clear seeing objective way.
    and yes. Unless there are directives written, you will become the next Spooner.
    "i wish i could show you a picture..." and you can't, but you can TELL us pictures as it goes. You can tell us stories.
    Still Alice is a truly excellent book as is The Forgetting by David Shenk.

    and then, how beauty Full, Clutch's fortune.
    I think of you, how you love beauty, colour, treasures, details, questions, the
    quirks of human behavior and i think how really prefect this is. You will be able to
    "meet them where they are"...appreciate small and odd things with your writer's eye.
    This is just GRAND. just really really GRAND.
    Much love to you and your Partner in the work. a great soft soft Smile

    1. I will be the next Spooner and then, probably, the Spoonee. I want to be okay with that, if such a thing is possible.

      And thank you for these words.

    2. many do not go into the Spooning space. However it goes, they die before that.
      I don't know the percentages. And also there can be advance directives that
      just call a halt to it at the point of needing to be fed. as Liz said, it takes
      some time. But Death is an honest process. Biological.

  6. beautiful post Julie, the fugue state may not be pretty to look at from the outside looking in but from the inside looking out there are beautiful moments... there was a post a few years back by one of the cloth conjurors describing a visit to her elderly father who spent most of his time curled up, drooling in a fugue state, his daughter wondered what the point of it all was until one day he roused for a few minutes, looked her straight in the eye and said " It's a beautiful life"
    Another brilliant book about aging & memory is 'A Map of Glass' by Jane Urquhart

  7. You and Clutch, compassion and courage, and some of the most clear, honest and eloquent writing on this subject that I have ever read. Julie you have an incredible way of getting to the heart of a situation and putting it in a context that we all can understand, even those of us who lost our parents many years ago. I was in my early 30's when I lost both of my parents from cancer within 2 yrs of each other so for me, reading about those of you whose parents are in their 80's and the choices that must be made is an education. When you are a young adult, it is much harder to know how to accept what to father waited until I reached the hospital before dying in my arms. My mother came home and lived 7 weeks before she died and I was also with her as she passed. All of these years later, I wish that I had been wiser and more comforting rather than scared and so distraught. Age gives one a sense of Grace and understanding that would have helped them as well as myself cope in an easier way with their deaths...

  8. I cannot imagine going through this at that age and I am assuming you probably were a mother at the same time. I would have felt frantic for myself...What you have done is captured what they meant to you, esp your father, in all the things you share about them in your writings and probably in your Living as well.

    1. Yes Julie I was a Mom: my twin girls were 8 when my father died and 10 when my mother died. I left my home for 7 weeks to help care for my mother (I had a lot of help from family and Mom and Dad's friends) and I relied on my dear husband and my dear friends to help with our daughters. I would go home on the weekends. I should add that my Dad was 73 when he died and my mother 67, the age that I am now and my birthday this year gave me pause... I should also say that I loved them dearly but my Dad was and always will be my hero.