Monday Author:  Susanne Skinner

I borrowed this title from the book of the same name, by Warren Hanson. It’s a book I have loved, read, gifted and shared. Originally written to explain death to children; it transcends age and religion with a beautiful 500-word explanation when everything else is just too complicated.

I turn to it with the hope of comforting my sister as we prepare for our Dad’s passing.  She has Down’s syndrome and Alzheimer’s. Her cognitive world is shrinking and she struggles to understand what it will mean when Dad is no longer with her. I struggle to explain it to her.

I do not tell her he is going to a better place; there is no better place for our loved ones than to be here with us. I tell her we must give him permission to go to The Next Place.

I Don’t Know What to Say

We are in Maine, sitting at a booth in Ruby Tuesday’s. My Dad has been in the hospital with a severe kidney infection.  We are not strangers to this routine. In the past four years Dad has been hospitalized five times with life threatening illnesses. Each time he wills himself to return from what doctor’s call “no meaningful recovery.” He does this for my sister.

He is frail and weak, and I settle him into his assisted living apartment. He immediately falls asleep and I suggest my sister and I go out for dinner. I order a grapefruit cosmo, she has strawberry lemonade.

She takes a sip and suddenly asks, “Is my parent going to die?” I am unprepared for this question, even though I know the answer. She has never asked me before, and I wonder if she knows. When I hesitate she says, “It’s not his time yet.”

But it is his time. Dad is tired; he is almost 97 and his body has no fight left in it. The nurses and I agree it’s time for hospice.  He will not survive another hospitalization and I want him surrounded by all that is comforting and familiar; his pictures, his record collection, military medals from two wars, and most of all, my sister.  He has lovingly cared for her since Mom died 16 years ago.

Everybody Dies

This is not a great opening line but it’s all I have, so I go with it. I tell her Mom has been in Heaven for a long time, waiting for Dad. She tells me he can’t die; if he does she will have no parents.

I understand that feeling–when Dad is gone I will feel like an orphan.  I have spent the last 10 years as their caregiver, increasing their level of support as they aged.  It meant moving them twice and recognizing that my sister’s increased confusion was early onset Alzheimer’s. I became their legal guardian, took over Dad’s finances, and ultimately managed their lives.

Their life changes became mine. I structured my time around their needs. I cancelled travel, delayed birthday and anniversary celebrations and forfeited vacations. We rearranged our lives to make their lives our priority.

It felt like I had two full-time jobs and sometimes it overwhelmed me. I do not regret a single day and when Dad is gone I will feel a diminished sense of purpose.

In his book “Being Mortal” Dr. Atul Gawande reminds me that “Our ultimate goal, after all, is not a good death but a good life to the very end.”  In that respect, I have done my absolute best. I tell my sister he has lived well.

Holding on and Letting Go

Sis:     “Can the Sky open up?”
Me:     “No, it can’t—why?”
Sis:     “I want it to open up so they can look down and see me.”
Me:     “They can see you and they will always be watching over you.”
Sis:     “How come I can’t see them?”
Me:     “You can. Just look up at the sky and see the stars.”
Sis:     “I want him to stay.”
Me:     “So do I.”

I want to hang on and will my father to stay for both of us.  He has been an integral part of our family and it’s hard to imagine that light going out of our lives. I realize I am struggling with this as much as she is.

Dad is an old soldier and devout Catholic. I invite the priest to administer the Last Rites, now called Sacrament of the Sick. It is a solemn ritual of absolution and blessings, and I see that it comforts Dad. Perhaps this is the reassurance he needs to let go. After the priest leaves I tell him he can lay that rifle down any time he is ready.

When I get home, I will read my beloved book again, looking for the comfort I hoped others found when I shared it with them, desperately seeking it for myself and my sister.

Letting go is hard, holding on is harder.

Peace Like a River

It’s time for me to make the drive from Maine to Massachusetts. It is my birthday and my family made wonderful plans to celebrate in the midst of my sadness.

I put my arms around Dad; tell him I love him, and that I will be back in a few days. He seems confused and does not answer. I’m afraid he doesn’t know me. I ask, “Do you know who I am?”

He responds, “Yes, you’re my daughter.”  I laugh and say, “Well, you have a few of those, do you know which one?”  He thinks about it and says, “The one who’s here.”

As I am leaving I hear him say “Susanne Marie.  Your mother picked your name”