by Cathy Arden on September 28, 2013

Sun Porch View 2My mother is the chorus I keep coming back to for the past 8 years.  Maybe it’s 9 years.   Sometimes we lose track accidentally, sometimes it’s on purpose.   Or it’s accidentally on purpose.  I forget the year my father died.  I always have to look it up on my computer.  I never count the years when it comes to his death.  I always remember when my sister died.  I always count the years when it comes to my sister.  That number just turned 32.

Why is grief sometimes one way, and sometimes it’s another way, even inside the same human being?  When I wrote a book about my sister, MY SISTER’S PICTURE,  I was unable to look at photographs of her after she died.  This lasted quite awhile.  I’d trick myself, though.  I’d hide a photo inside a book.  Not a book I was actively reading.  But a book that would perhaps be at my bedside, or on my coffee table.  When I moved the book to clean, the photo of my sister would sometimes fall out.  Not all the time. Just sometimes.  That was the important part.  I’d never know if it would appear.  I’d even forget the photo was inside that book.  Perhaps I was testing myself, testing my grief, testing pain.  Is it okay now?  Has there been any healing?  How does it feel to see the picture now?  Does it surprise me?  Startle me?  Or both?  Do I have to shove it back inside the book quickly, or am I able to look at it for awhile?

My sister’s photographs went unseen in my house for a long time.  And then they didn’t.  I don’t recall the moment when I was actually able to frame one of the photos and put it out, or hang it on a wall.  But I always knew that was the goal.  I always knew it had to come to that.  Even though I believe grief continues to move through a human being’s psyche and body for as long as they are on this earth and have all their wits about them, I knew that at some point, the photographs would have to come out.  My mother, on the other hand, no longer feels grief, not for her own lost life, not for her daughter, not for her husband, not for her lost memory.  The curse of dementia has, when it comes to grief, morphed into her blessing.

I’ve been grieving for my mother for all these years that she’s been alive and has been, as she would have said, non compos mentis.   It’s been a long time since I had a mother.  And, yet, I seem unable to let my mother go, even though she’s already gone.   A month ago I had to move her out of my house and into something called Board & Care.  I lost my trusted and long-term caregiver.  I had lost her before for 9 months and I barely got through the nightmare parade of incompetent and irresponsible caregivers that marched through my house on a daily basis.  So when the person I trusted most had to leave for the last and final time, I knew I had to make a different care giving decision for my mother, who is already in home hospice care.  She has always needed 24-hour assistance, since the sudden onset of demential 9 years ago, and hospice doesn’t offer that.  They don’t offer that until the final hours.  My mother is now living in a residential house, in a residential neighborhood, only a five minute drive from where I live.   There are only 6 residents, and very competent caregivers around the clock.  My mother seemed actually more alert after I moved her there.  I was surprised.  Stunned, in fact.

The room I chose for my mother in this new place has a sun porch attached to it.   I loved this sun porch, and I loved that it was attached to her room.   I chose this room in this house because of the sun porch.  My mother has a roommate now, even though she is unaware of this fact.  So I wanted a place where I’d be able to sit with my mother privately and talk.  Well, I’d do the talking, I suppose.  But maybe she’d respond.  So I imagined being out on that sun porch with her every day when I would come to visit, and it would be where my children could visit with her as well when they were in town.  I took photos of the sun porch and sent it to my children and my friends.  “Beautiful,” was the response I got back from everyone.   I was so happy my mother would have a sun porch in her new home, with a garden to look at outside the windows.

What I didn’t know was this – it’s a shared sun porch.  It’s shared by two men in wheelchairs who live in the adjacent room.  One man, perhaps sixty, stays in his room or on the sun porch all day.   He has slight dementia and his wife visits with him daily.  He is in a wheelchair for some reason other than dementia.  The second man, who is perhaps only fifty, does not have dementia at all.  He has a crippling disease.  He sits on the sun porch with a hospital gown on, and the gown barely covers him.   I’ve heard he’s not a very nice man, and so I do not interact with him.  Although I wouldn’t anyway, due to the open hospital gown.  He sits on the sun porch all day.  The recliner chair I had intended to go on the sun porch for my mother has never been put there.  And I’ve never pressed the issue because, clearly, there is no need.

I was talking on the phone to a good friend in Boston the other day, someone who I haven’t spoken to for a long while.  I was catching her up.  I was describing the Board and Care.  I was describing how last week my mother came close to death – again – as she was diagnosed with pneumonia, had a high fever, and was put on oxygen, an oral antibiotic, morphine and Ativan.  I had to make the decision about the antibiotic.  It was the toughest decision I’ve ever had to make.  I’ve been fantasizing all these years that my mother will, in the end, go quickly.  I never imagined the decision about the end of her life would be in my hands.  My friend in Boston pointed out that I’ve expressed a lot of fantasies over the years about how my mother will die.  Chances are none of these scenarios will occur.  Like the scenario about the sun porch, she said.

There is, in fact, no sun porch.  It was merely a fantasy.  But it sure did give me hope.

{ 3 comments… read them below or add one }

Sharon September 28, 2013 at 8:34 PM

Dear Cathy,
I don’t get invitations to read blogs and wouldn’t know where to find one if it weren’t for your email.
Crazy, but my son Matthew is going through the same kind of experience. His father suffers from frontal lobe disease and is going down rapidly. He has been in a nursing home for a little over a month. He is 74 years old and most likely will not come close to seeing 75.
I wish my son were writing a blog. He thinks he is in touch with his feelings but he truly isn’t. It drives a big wedge between us.
From his standpoint, I have no role in his ‘drama’ because I divorced his father. It seems as if he’d rather stay angry than let me in the door. A loss for both of us.

Your blog, I suspect, is cathartic for you. It is sensitive, as I would have expected, and draws analogies from realities.
I wish you comfort and peace of mind in the new year. You’re right…there is no sun porch.
As ever,


Cathy September 29, 2013 at 8:40 AM

Sharon — I’m so sorry about your son and that he is unable to share his grief with you, nor you with him. Everyone experiences grief differently. There is no rhyme or reason. When my sister was dying, I threw every book about grief against the wall. I hated them. I don’t believe in cut and dry stages as they describe. Stages are fluid. Sometimes it’s hard to differentiate them. But I know your son is going through this in the only way he is able to. Perhaps in the future it will be different. Sometimes anger is the only emotion one can muster to protect us from the darkness that lies beneath. I hope your son can find comfort with you, and within himself, sometime in the future. Sending you lots of love.


Deborah Rubin Cooper June 15, 2014 at 2:20 PM

How do I go about getting notified when your blogs are updated? I really enjoy your writing.


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