Falling Back

Thursday, November 2

My dad dies at 10:15 in the morning.  My mother is asleep next to him with her hand on his arm. The cat is lying on his legs, purring loudly.  My sister is sitting in my dad’s wheelchair next to the bed. And I am standing next to her.

I was on my way out the door to take some magazines to the recycling bin when she called, “Linda, don’t go!  I think he’s going…”   He had been taking those long breaths followed by longer and longer silences.  Just about the time I would think, he’s gone, there would be a startling catch in his throat and he would take a long gasp.

His head was tipped back and his mouth was opened at that unnatural angle that I see so often in the dead when I am working in the hospital. –As if he is frozen in the act of  taking a large gulp of air.

My sister, like her father, is a scientist: an organized, problem-solving, critical thinker. A few minutes earlier when he took one of those long, gasping breaths she set her phone to work as a stop watch.  I watch the numbers change so quickly, they can only be tenths and hundredths of seconds.  To the left the numbers climb more slowly until at 6 minutes I say, “He’s gone, Nan.”

The odd thing about death is that nothing changes. The cat is still purring, my mother is still sleeping, my sister and I are still waiting.  Everything–and nothing–has changed. He is gone and the world goes on.

Friday, November 3

Mom was up and down all night last night.  I would be watching tv and I would hear the scratchy shuffle of her calloused feet on the carpet. I would look up and there she was at my elbow, looking confused.

I would walk her back to her bed, lightly stroking her back and help her into bed.  Early on, I offered to sleep with her.  She said, no, I didn’t have to do that.

The second or third time as she climbed back into bed I heard her say to herself,  “I just have to get used to it.”

The last few times, as she put her head down on the pillow, she would say,  “Now, where is Nan?”

“She is home sleeping. She will be back in the morning.”

Then, later, again, “Where’s Nancy?”

“Nancy is at home, sleeping.  She will be back in the morning.”

“And where is Linda?”

“I’m Linda, Mom. And I’m right here. I’m not leaving.”

The last time I helped her back into bed and tucked the blanket around her chin, she said, “Do I have everything together?”

“Yes, Mom, you have it all together. You can sleep now.  I’m right here.”

Sunday, November 5

The time changed last night. We “fell back” an hour.

My mother is still in bed, sleeping, I hope.  –Although she has this habit of lying in bed with her beautiful, startlingly blue eyes open, looking at the ceiling and doing, I don’t know what.

I awoke in the night and realized I had slept several hours uninterrupted.  Even that much sleep makes a difference in the morning when I wake again.  I get up because I am cold.  How I can be cold in an apartment which is kept at 75 degrees is a mystery.  I don’t try to solve the mystery, I just take a hot shower in what was Dad’s bathroom and lay down on the love seat and stare at the ceiling.

Nan and I both feel Dad’s presence in the apartment, as if he is still here with us.  I don’t think Mom feels that way.  I think it comes at her in waves: lifting her on the crest of realizing his absence–then dropping her into a trough of forgetfulness.  Night seems to be the hardest time. She is like a small boat unmoored and she will ask, “Where’s Dad?”  “What happened?”  “Are we going home tomorrow?”

Nan and I are ruthless, I suppose.  When she asks we answer, “He is at the funeral home.”  “His heart failed.”  “This is home, Mom.”

–“No it’s not,”  she said fiercely, once, last night.  She’s right. This is not her home.  Not really.  Their home is gone.  Her husband is gone.  Their old pets are gone.  Many of their friends are gone.

And the world rolls on.

The clocks don’t stop.  Time doesn’t skip a beat.  We fall “back.”  But “Back” is not a direction time and life recognize.  They move relentlessly forward and we are carried with them, like boats, unmoored, carried on their waves.

 

 

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Seeing Stars

I got up last night to crack the window for some fresh air and saw stars I have never seen in Chicago!  Not only Orion’s Belt, but all of him. And a host of pinpricks of light magnificent and calming. The only way to see the stars over the trees was to kneel in front of  the window. That seemed like a fitting posture to be in: kneeling before the stars and creation.

When the maintenance man came on duty yesterday morning at 6:30 am, he found my mother on the floor outside her door.  He helped her in and found my dad on the floor by their bed.  It seems my dad had tried to get up in the night to use the bedside commode and slipped off the edge of the bed onto the floor. He called for my mother and she made her way to the door.  But once outside, the door closed and locked behind her and with her short-term memory loss she did not know why she was outside or what to do.

Later, my father said he thought he had been on the floor for 4 hours.  My mother, thank goodness, appeared not to remember the incident. But later that afternoon, coming in from having her hair done and walking down the hall, she said quietly, “I was in the hall.”  I can’t imagine what it was like to be outside the door: confused, unable to get help, help herself or even understand what was going on.

“I was in the hall.”

Each day seems to bring a new hurdle.  Or maybe it’s that the trail we are on that winds through this dark night of the end-of-life, just descends a little more sharply each day.  I cannot keep my footing.  And neither can my parents.

But the worst of it, I will say, selfishly, is that my sister and I disagree on what these signs mean and how to respond to them.  I am the daughter that has swooped in from afar and said, “Wouldn’t they be more comfortable, more safe, more part of a community they fit into, in a good nursing home?”  My sister who had done all the heavy-lifting is fiercely protective of them and what she believes is their right to die in their (new) home.

My sister said to me yesterday, “I am the person that makes things work.  I will make this work.”  And she will, at whatever cost to herself.

I don’t know who I am anymore.  I believe I am the person who has learned in the last 15 months that I cannot, in fact, force the universe to fit my expectations, or desires or demands–no matter how just those are.  To my sister, I am sure this looks like I give up too easily. As if I am willing to sacrifice my parents’ deepest needs to my comfort.  She may be right.

From my perspective of having been seriously ill, I want my parents to be comfortable, cared for and to avoid the frightening accidents that can happen when you are alone and helpless.  She would say they are not alone.  But in fact they will be, for hours each day, maybe not long hours.  But hours.  And if neither of them moves out of their chair, maybe things will be okay.

Neither of us knows what will happen.  I would choose safety and comfort–even if it is medical and institutional in nature.  (Because I have had very good experiences with that kind of care.) She would choose to preserve what she believes to be their deepest wishes:  to be independent with dignity.  And she is their power of attorney and she has done an admirable job so far.  It will be according to her will.

Yesterday I got off the campus of the retirement home for the first time in 5 very long days. I can tell you, I was getting a little squirrely.  We only went into town to take Mom to get her hair done, and for my sister to get a massage (a late birthday gift from me).  I had 30 minutes alone.  I mean, I had 30 minutes when I was not trying to comfort my mom in her confusion or watch my dad breathing and sleeping. Thirty minutes while Mom got her hair done.

I spent it walking up and down a couple blocks of Maine street (I think that is really how they spell it) in the rain.  I went into 2 different chocolate stores.  (What can I say?  I need comfort, too.)  And, unfortunately, only at the last minute did I discover this awesome, independent bookstore called “Gulf of Maine.”  OMG, as the young people say, OMG.

I never got past the first table, just inside the door. It was filled, books layered on books, standing on edges, laying down, perched on piles.  Books about nature, sustainability, the environment, about wildlife, illness, thoughtful, respectful, award-winning books (ALL of them, award-winning!)  It was like finding a bunch of field guides to living on the earth in a thoughtful, funny, reflective, intelligent way.  It was like finding the end of the rainbow.

I only bought one book.  But I am desperate to go back and write down the titles of the others so I can find them in the library or buy them. What a find. What a gift. Most of all, it awakened my interest in being one of those writers who can look at tiny pieces of her universe and see a larger world reflected in them.  I wanted so much to read it all and learn from them.

Let me tell you, it is quite a gift to be my age and feel like you have found a piece of your passion or a new way to give to the world–to leave something behind.  Especially, if you believe, as I do, now, that it may turn out that I am not, after all, immortal.  That I may be approaching a time when I will only be able to see the stars from a narrow window of life.

If I am approaching a time when I will be on my knees more than I am standing, I want to learn how to kneel–so as to see the stars!

Paraphernalia

I was tired today.  I woke around 2am (my worry time) and worried about my parents and their getting enough care. Then I read awhile and finally fell asleep again. In the morning we got what the locals call “a soaker.”  Raining cats and dogs, we said when I was young.  The maple outside my 2nd floor room which has been a yellow torch against the lawn, was first dishevelled and is now completely undressed.  Another across the road has lost all of its leaves on top and from the waist down, still has a raggedy slip of yellow on.

Still, the air is not chilly. It is humid and warmish. I could sit out on the porch with a cup of coffee this morning and enjoy the fresh air. But no more walks.

Today was largely uneventful except that I was watching the clock and counting the hours until my sister came in after teaching (4pm) to relieve me.  I didn’t take a break away from the apartment because I expected the delivery of the wheelchair and other hospital paraphernalia and I didn’t want my mom alone there when it came. She is understandably confused and angry by all the sudden changes in their lives with the advent of hospice.

Of course, the wheelchair was delivered while my sister and I were downstairs in the dining room and Mom and Dad were alone in the apartment and by the time we got there I could already hear Mom’s voice in the hall. I set up the bedside commode and moved the bedside table into the dining room until we find a permanent place for it. The wheelchair, while not as big as I had feared, is still a presence, and my sister was unhappy with it.

In a totally unexpected turn, when I asked my father about placing the commode by his bed, he said that was “good.”  And in a strong voice I only rarely hear now, he addressed my mother directly when she asked what he needed that thing for.  He said, “It is a miracle that I haven’t fallen in the bathroom before this!”  And I thought I was the only one whose heart raced whenever he was in there alone among tile and sharp corners and holding on to the towel bar.

Tomorrow the hospice nurse comes back to talk to Nan and I together. I think that will not be a happy conversation. I think we see my father’s abilities differently and being the prodigal daughter who has taken no responsibility for my parents’ care during the last very hard year, I have little or no credibility.

The one thing we do agree on, though, is that we don’t want to lose each other in this.  To lose my dad and then my mom–and then each other?  That would be tragic. So we will be okay.

I have always been a worrier. If worrying were a triathlon, I would qualify for an Iron Man. But living with cancer has leant me some perspective.  I have learned–am learning–sometimes–to open my hands and let go.  To recognize when I can do nothing more than accept.

I have to trust that my sister and I will do the best we can by my parents. –And they will still die.  And all we have done–especially all my sister has done–in the name of love–will be enough. Simply because it is done in love.  We have no other gift to give them now.