On Death, Duty & Dysphoria

On March 17, 2010 my beloved 89-year old grandmother was referred for hospice care. Her dearest wish was die at home surrounded by those who love her. Because she has been living with me for the past few years,
this meant that she would die in my house. On March 21, she got her wish.

I started this blog because I discovered that writing about the situation helped me to process the tide of new
information and swirling emotions that comes with being a hospice caregiver. By documenting my journey,
I hoped it would help me to cope with everything that happened in the days to come. It has.
I continue it now, both as a tribute her remarkable life, and as a means of coming to terms with her loss.

Everyone handles the death of a loved one a little differently. If you are dealing with a similar situation,
or if you are one of the many adult children or grandchildren faced (as I have been) with making end-of-life care choices
for an elderly relative, I hope these posts will help provide some perspective. Perhaps, in some small way,
my experiences will help you cope during your own journey.

Friday, March 19, 2010

A Snowy Evening

It's snowing... AGAIN.  It's not unexpected - the local weather reports have been predicting it since last weekend -  it's just one more inevitable thing that I wish wasn't happening, but is.

It has been a rough winter - more than 60 inches of snow have fallen in our part of the world since October - something of a local record.  It has melted very rapidly, and many areas are already being flooded as lakes and rivers surge and overflow their banks.  Yesterday, when we brought Grandma home from the hospital, it was nearly 70 degrees.  Tonight the temperature is in the 30's.  By Monday, it is expected to climb back up into the 50's and melt everything away again.  It seems that Nature is reminding me of the transitory condition of all life.

Tonight, after I gave Grandma her latest dose of medication, I sat for a while next to her bed. Through the window behind her, I could see the curtain of falling snow reflected in the street lights, covering the rooftops behind our house in a fluffy, pristine blanket.  Quite beautiful, really. I know that if Peggy could see it she would not believe it - in fact, she would probably find it annoying.

Every spring, when the temperature climbed above 60 she could not wait to start packing away her winter clothes and unpacking the sherbet-tinted shorts and lightweight cotton shirts she brought with her when she moved here from Florida.  Every year, I would always have to remind her that, just because we were having a warm spell, that did not necessarily mean that winter was over, and she needed to keep those long pants and sweatshirts out of storage just a bit longer.  Not this year, however.  Her beloved Birkenstock sandals will remain in the closet. The Cherokee brand cotton pedal pushers she has worn for more than 30 years (now faded from turquoise to robin's egg blue, but never worn out) will not be unpacked.  The signature floppy turquoise hat with the slightly-tatty, violet silk chrysanthemum sits on the shelf in her room, gathering dust.  She will not be needing them this summer.

My mother went home several hours ago.  There was no need for her to stay, there's really nothing for her to do.  Grandma has been resting quietly most of the day - she hardly stirs, even when you touch her.  She is somewhere inside herself now, some secret place we cannot penetrate, but she seems at peace.  Perhaps she will never come back to us at all - at this point, it's hard to say.

I give her medication at four hour intervals.  After several tries, I have finally mastered the art of crushing the Lorazepam with the spoons and getting the diluted solution into the syringe.  At our hospice nurse Toni's suggestion, I have spiked the morphine (which is a clear solution) with a drop of food coloring to make it easier to see when drawing it into the syringe.  "Don't use red, though, " Toni cautioned. "It looks too much like blood."  I find a box of neon food colors my mother brought over - when my 5-year old niece was visiting last month, they used it to make frosting for sugar cookies.

The morphine is now a bright shade of turquoise.  I think Peggy would approve - she has always loved the color.  She would not, however, like the trickle of blue that stains the corner of her mouth when a little of the solution dribbles out.  She barely stirs when I poke the syringe into her mouth and squirt in the liquid.  It's a very tiny dosage - not enough to make her choke, even though I am basically giving it to her while she's sound asleep.  My fingers, too, are stained - I know the blue will fade in time,  much more quickly than the memory of of how the stains came to be.

As I sit with Grandma, watching the falling snow, I try to find some sense of inner peace to match the quiet, delicate landscape outside.  Our dog Chauncey comes into the room, as he periodically does, to check on Grandma.  Peggy and Chauncey (she hates the name and refuses to call him anything but "Doggie")  have a very special relationship.  Chauncey is a high energy dog - half Border Collie, half Australian Shepherd - and smart as a whip.  When I walk him on the leash, he sometimes gets so excited he nearly yanks my arm out of the socket.  Yet when Grandma put him on the leash to take him out (which she did often, in days past) he never so much as tugged. He seemed to have a preternatural awareness that she was not as strong as I - he just knew he had to be careful with her.  He loves his grandma, and Peggy adores him.

Whenever I go to Grandma's room now, Chauncey follows.  He puts his front paws up on the bed and sniffs.  If he can reach a place where her skin is exposed - a hand, a cheek - he "kisses" it, as he has done every day, a dozen times a day, for the last four and a half years.  I know he would like to climb up on the bed next to her as he always has, but the hospital bed is too small - there is not enough space for his 55-pound frame.   This morning, when he licked her hand, Grandma smiled and said, "Doggie."  It was one of the few lucid moments she had all day.  Tonight, not even their special bond can penetrate her silence.  He rests his nose on the the blanket next to her and sighs deeply.  I pat his head.  "I don't think she's going to wake up, Buddy."  He sighs again, then climbs down and trots out of the room, his toenails clacking on the hardwood in the hallway.  It's too hard for me to sit there after that, so I follow him.  There's nothing we can do for her right now.  Nothing to do but wait.

I go to our room, where Brian is dozing.  He had to work overtime today, and I know he is beat.  He has another 8-hour day of overtime tomorrow, partly due to the fact that he left work early yesterday to come home and help get Grandma's double bed out of her room to make room for the hospital bed.  I crawl into bed next to him, and he wakes up, ever solicitous of my comfort.  We are immediately joined by two of the cats - Gatsby, who wants to cuddle, and Stella (also known as Meep, because of the sound she makes in lieu of a meow), who only wants to climb over us to get to the table by the window so she can watch the snow.  Chauncey is curled up on the rug at the other side of the bed.  Here is the peace I couldn't find in that other room down the hall - it is here in the warm, drowsy presence of the four-legged "children" who love me unconditionally, and the man who, despite the fact that he knows me better than any other soul in the world, also, somehow, loves me unconditionally.  In this moment, I feel blessed.

We watch the snow as it begins to cling to the barely budding branches of the tree outside our window, and I tell him about my mother saying this afternoon that she wished we'd had hospice care when my grandfather (Peggy's husband) was dying.  I can hardly believe that nearly twenty years have passed since he lost his battle with lung cancer.  It was a long, difficult dying process - much of it was spent in hospital rooms being poked and prodded by strangers, terse conversations with dispassionate doctors, and an endless menu of medications. When we cleaned the house after his his death, I counted more than 40 different pill bottles on the tray by his favorite recliner (where he slept many nights because he could no longer breathe when lying in bed.)

Grandpa's death was a terrible ordeal - both for him, and for everyone in our family - but especially for Peggy.  He passed away just one month shy of their 50th anniversary, and she was devastated by the loss.  The experience also gave her a pathological fear of doctors and hospitals - one of the reasons, I am sure, that she begged us to allow her to die at home.  Looking back and remembering those horrible days with Grandpa in the hospital, I know that this is better.  It is a kinder death - a more gentle, peaceful passage from this world to the next.  It is not easy, but I know it is a gift - both for her, and for us.

I am still too restless to sleep, so here I am, back at the keyboard.  I think about the snow, and the conversation I've just had with Brian, and I am reminded of that famous poem by Robert Frost called The Road Not Taken.  If you don't remember it, the last few lines are:


"Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference."


In respecting my grandmother's wish to die at home, I am, in a sense, taking a road less traveled.  It does make a difference, and I will never regret the choice.

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