Torment.

Torment.

No sleep.

Torment.

Torment.

Why?

Any time but the present

I fear I am at once an adolescent girl just wanting to start my life and rebel and rejoice and reject, while at the same time I am grievously wounded by my childlessness.  I look for daughters everywhere.  I will never have any daughters.  My behavior strikes me as bizarre.  I'm caught in at least one time warp, and I desire to be living in any time but the present.

The Liar

     About a week ago, my brother asked me to find my Mom a room in an Alzheimer's facility near me.  When he asked me, he said pointedly, as though it was a sales pitch, "I know it's something that you wanted".  Also, he said, he thought it would be better for her to be near me since we have a "better dynamic".  He wasn't being altruistic.  The truth is that he doesn't want the responsibility of being "the go-to" person any longer. 
 
     Getting back to the present, there is a wonderful place a couple of miles away.  I know this because I spent quite some time in the fall of 2010 visiting the facility and researching their Virginia Department of Social Services inspection records with the hopes of having my Mom and Sam move down here.  They didn't come.

     There is a long dramatic back story surrounding that outcome which I prefer not to share.  The importance of the back story is that it left me feeling very angry at my brother at the time.  I'm still angry because I haven't told him.  The last time I started to talk about it he shut me down.

     Unfortunately, they don't have any room now, but my mother is now first on their waiting list.  The manager there suggested an interim plan - to relocate my mother to their "sister" facility in Herndon, Virginia, which is at least an hour's drive from my home.  At first I had been excited about this option, and not only embraced it, but was ready to proceed and get the process going.  However, I changed my mind.  I'm very nervous about telling my brother that Mom is going to need to stay in the Memory Unit in Manhattan for an indefinite period of time.  


     This is the letter I wrote that I probably won't send to my brother.  I have not used names in this version of the letter to protect the innocent and the guilty.

Dear Brother,

     After some further thought, I have some serious concerns about relocating Mom to Herndon to wait for an opening at Potomac Place.  My first concern:  How would Mom react to being uprooted twice - first to Herndon, and then hopefully, to Potomac Place.  Since one move is traumatic, what would be the effect of two?  My second concern:  Believe it or not, I always tend to look on the bright side of things, and armed with my enthusiasj and eagerness, I sometimes agree to something that isn't in my best interest.  I was overly optimistic about the ease with which I will be able to visit her at Herndon.  It's really quite a hike , and involves travel on some high-volume highways.  I drive into the District to see Dr. B. Monday through Thursday mornings, and then I frequently meet with students in the afternoons near my home in northern Virginia.  Logistically, visiting her would be quite difficult for me.  My third concern:  After all these years, I am finally beginning to feel better, and have been going places, doing things I want to do.  Moreover, I actually want to do things.  I was psychologically paralyzed and imprisoned for most of my life.  I think my analysis has given me the freedom to finally live my life.  I don't want to twist myself into a pretzel having to squeeze these long drives off the beaten path into my (now) busy schedule.

     I'm still thinking about the Herndon option, but I'm leaning toward waiting for something to open at Potomac Place, whenever that may be.  Although you and Mom, and yesterday Dr. G, have all told me how miserable she is, I'm not sure visiting her is going to solve that problem.  Of course, I would visit her quite frequently at Potomac Place because it is so close to home, but I think she might very well be just as miserable and lonely there except (possibly) for the time that i am physically there with her.  Mom has never been able to function well when she feels alone, she doesn't let people in, and she has never been able to tolerate separations.  I'm not convinced her moving close to me will alleviate her pain and misery.

     I will meet with the admissions person at Herndon.  I am also going to speak to Mom's psychiatrist again to get his take on two relocations within a relatively short period of time.  In addition, I'm also going to address her separation issues with him to get his sense as to how much that contributes to her current depression.

     I want to restate that I totally understand that you have difficulty talking to or visiting Mom.  I don't blame you at all.  I'm not crazy about it either. Frankly, it's only just recently that I can tolerate her at all.  I can only speak for myself, but in my case, I believe it's because I've worked out most of my rage toward her.  She was a horrible mother, at least as far as I'm concerned.  She was never there for me when I needed help, when I was alone.  She always said, "Call me when you feel better."  However, if it turns out that she remains at The Classic for a few more months, I'll continue to call her, and will hope that she can relocate to Potomac Place when a space becomes available.

Love,
Your Sister

     The truth is I have decided to wait until there is an opening at Potomac Place.  The other truth is that I don't want my mother to move nearby.  I don't need her anymore.

DNR

                                                Christmas/Chanukah 1998


I can't sleep.  I am consumed with grief, regret, loss, and questions.  Earlier this evening, I was told that Sam is going to die.

My stepsister called after dinner to let me know that Sam will be placed in hospice care within the next few days.  At least that's the plan for now.  I feel ridiculous calling it a plan.  But there it is.

There is no hope that he will recover.  He is, as my stepsister said, "in limbo".  Per his request, she is honoring the papers he had signed stating that no extraordinary measures be taken to prolong his life.  Since he cannot swallow, and since his only source of nutrition cannot remain in place for longer than two weeks, once that life-sustaining NG tube is removed, no further action will be taken other than to "make him comfortable" and try to ensure that he doesn't suffer.

But I will suffer.

I had no idea I would be so devastated.  I am sick at heart.  I am in mourning before his death.

Up until the past few days, I didn't realize how deeply Sam has affected my life.  I didn't know I loved him.  Even though he has always been a bitter reminder of my father's death, and has never been a replacement for my father, he has been a part of the fabric of my life and psyche since 1967.

I'm not a religious person.  I don't believe in God.  This is a great disappointment to me, but it's true.  However, last night, before I went to sleep, I said out loud:

Now I lay me down to sleep, I pray the Lord Sam's soul to keep.  If Sam should die before I wake, I pray the Lord Sam's soul to take.

I'm going to say it again tonight.

I wish Sam could hear me.

The POW

                                   POW Camp in Remagen, Germany



My stepfather of almost 47 years has suffered his third stroke.  This massive one  has affected most of his right brain.  The other two happened with the past couple of months.  Each has successively and significantly impaired his mobility and mental faculties.  This last one has rendered him speechless and "lethargic".  I've learned that's a euphemism the medical community has invented to denote endless sleeping.  My brother sent me a photo of Sam from his hospital bed yesterday.  He is almost unrecognizable.  Sunken closed eyes, mouth agape, shriveled.  All I could think of were the stories that Sam used to tell us about his six months as a POW in a German camp after The Battle of the Bulge.  He's ending his life as a POW.  His body is his prison.

Sam is not my father.  He tried to be my father.  I'm trying to be his daughter.

The Bully

Yesterday, thoughts about Mitt Romney gave rise to my subsequent blog about altered memory.  Mitt has inspired me yet again.

Do we all have a bully inside of us waiting to come out?  More to the point, have I ever been or will I ever be a bully?  Given that I have always tried to be conciliatory and accommodating, being mean in any manner constitutes bullying.

It's very hard to admit that I have felt mean, and that I have been mean.  I'm not always mean.  But sometimes, particularly lately, I'm aware of sometimes being unkind and spiteful.  At least I feel unkind and spiteful.

I have previously written about being angered by a member of my family:

"A family member enraged me today.  She is not a blood relative.  Her intent was to give me professional advice regarding my mother.  In fact, she stipulated that she was writing as a professional and not as a family member.  I would have preferred to hear from a family member.

It was unsolicited advice and most unwelcome.  Although I'm sure she would disagree, her letter seemed heartless and condescending.  She attempted to convince me to stop calling my mother in the Memory Unit, but she failed to make a persuasive or a cohesive case for her position."

Since then, without going into particulars, I have won the war.  We are all calling my mother, and some of us are visiting her.  I wanted to call the source of the unsolicited advice and yell, "I was right, and you were wrong,  and by the way, you are a horrid person and I've decided not to get you the birthday present I had promised you".  I wanted to be a bully.

Instead, I wrote an email to all of my family members to say how happy I am that we are all having some kind of communication with my unhappy mother.  Still, I must confess that I felt rather triumphant and vengeful when I pressed "Send".

However, I still am angry, and I still feel mean.  Yet,  I intend to send the offender the particularly special birthday present that I had previously promised her.

Maybe Mitt Really Doesn't Remember

Most of the pundits on television are astonished that Mitt Romney can't seem to remember the details of a nasty event that happened during his last year in high school.  They are absolutely sure that they would remember doing something so dastardly.  I'm not so sure.

If the event did happen, and if the the account in the Washington Post is true, I think it's entirely possible that Mr. Romney has either sublimated the memory, or remembers it in an altered way,

As my step-father declines, my brother and I seem to be revisiting and reliving the death of our father in the summer of 1965.  He will have been dead 47 years on August 22.

I was recounting the last days of my father's life in analysis and told Dr. B. that the last time I was with my father was after he had been admitted to the hospital.  He was in a coma by the time my brother and I went to visit him.  He died that evening.  Alone.  No one was there with him.  Not even my mother.

He was in a coma by the time my brother and I went to visit him.

The thing is, my brother wasn't there.  He wasn't even at home.  He was hundreds of miles away at summer camp.  My father died before my brother was able to get home.

And yet I was so sure that my memory was correct.  I was so sure that I wasn't alone with my father.  I don't remember anyone being there other than my father, my brother, and me.  I'm not sure what this means.

A Member of the Family

A family member enraged me today.  She is not a blood relative.  Her intent was to give me professional advice regarding my mother.  In fact, she stipulated that she was writing as a professional and not as a family member.  I would have preferred to hear from a family member.

It was unsolicited advice and most unwelcome.  Although I'm sure she would disagree, her letter seemed heartless and condescending.  She attempted to convince me to stop calling my mother in the Memory Unit, but she failed to make a persuasive or a cohesive case for her position.

I called my mother tonight.

In defiance?

Two Mothers

I have two Mothers.
My pre- and post-Alzheimer's Mother.

My pre-Alzheimer's Mother could not be a Mother.
She never seemed to love me.  She never seemed to care.

My post-Alzheimer's Mother needs me.  I think she loves me.
I feel closer to my post-Alzheimer's Mother.
I no longer feel like a Motherless child.

Are my two Mothers the same Mother?

Who's the Mother now? 

Why Is She Moving?

I just spoke to Vedette, the aide who has been living with my mother.  She asked me, "Why are they moving your mother?"

I didn't have an answer.

My Mother's Legacy

     Although it was a bit late,  I decided to call my mother last night. "I have nothing new to tell you.  Everything's okay here.  No news is good news.  It's the same old story", my mother said.  "It's a good story, Ma.  Nothing is new here either.  I'll call you in the morning.  I love you.  Good night, Ma", I replied.  "I love you, too, dear", she answered in turn.  I hated to hang up the phone.  I was so happy to hear her sounding so calm since she has been so miserable and frightened for the past week and more.  I'm sure she had no idea my heart was breaking. She didn't know what I knew.

     Before speaking with her, my brother had called to tell me that her move to the Memory Unit is scheduled for today.

     During that earlier conversation, my brother and I seemed to be speaking at each other rather than with each other.  He was focused on the logistics of the move.  I wanted to talk about our feelings.  Against my better judgement, I warily tacked into uncharted waters.  I had been thinking about something odd, and wanted his opinion.  My mother has had no trouble recalling my name, his name, or my step-sister's name (someone she rarely sees).  Perhaps she kept forgetting my step-father's name, and sometimes his very existence, because she was enraged at what she perceived as his abandonment of her.

     I hoped he would give some thought to my idea.  However, my brother summarily rejected my hypothesis and, moreover, my "psychoanalytic take on things". Feeling wounded, my reply was instantaneous and rather bitter.  I heard myself reacting the same way my mother used to react to me when I had said something with which she didn't agree.  "End of conversation", I said.  But I regrouped and tried to salvage our tenuous connection.  The rest of our talk revolved around a less controversial subject, my niece, the heart of my brother's life. The call ended pleasantly enough.  My mother's legacy is not destined for the Memory Unit. 

Letting Go

     I came across a poem written by the daughter of a mother with advanced Alzheimer's.  My mother has not yet let go.  And therein lies some of her pain.  And some of mine.  This is so complicated.  So hard.  I'm at a loss for more words at the moment.  Memory Unit Moving Day is fast approaching.


by
Judith Scott
I tried to imagine how you felt
Incredibly frightened, yes, but
Also
So bitterly angry and frustrated
By the things you couldn't do,
That just - WOULDN'T - be done
No matter how hard you tried.
The words that wouldn't come
When you so wanted to put a
Good face on things
The way your mind let you down
And forgot what you were doing
Where you were going
And why.
That anger spilled over into everything
And blazed out against everyone.
I did understand, and grieved that
There was so little I could do:
You fought me as if I was the devil himself,
Accused me, abused me, rejected me
When I tried to help.
I knew it was the disease you hated,
Not me. The doctors said it would be easier
When you stopped fighting it, so
I prayed for that day to come,
But I didn't realise how it would be -
Not easy at all - to see you finally accept
Defeat and give in. And I didn't know
how I would weep, to see you,
Letting go.

Death of a Family

     I've been trying to remember to call my mother at least four times a day since my step-father has been hospitalized.  I think she forgets that I have called within a minute or so, but I persist in calling.  However, when I called yesterday afternoon, another familiar voice greeted my "Hello".  It was My Little Brother.  He had come not just to visit her, but for a tour of The Memory Unit, and in particular, the room that my mother will occupy in a few days.  He seem positively delighted to hear my voice, and he spoke with a lilt and also some relief.  Big Sister was on the line.  The Big Sister he had depended on when we were children.

                                   Me and My Little Brother - Happy Days


     He's not generally this happy to hear from me.  We don't speak that often.  But the current health crisis precipitated by my step-father's stroke and my mother's precipitous decline into a deeper dementia have brought us together again.  Yet, although we are both adults, having lived many decades apart since our youth, we are still, sometimes, Big Sister and Little Brother.  I was literally the Big Sister until he suddenly shot up past me like Jack's Beanstalk to nearly six feet.  I can't remember when that happened.  Like so many things.

     For years, I have tried to understand the affect my father's death had on me.  It's only since I've entered psychoanalysis that I've begun to get a fuzzy understanding of how his death might have affected my brother.  We hardly talk about "Daddy" at all.  I'd like to, but I think it's too painful for him.  Or maybe, he just doesn't want to talk to me about it.  You see, I believe my Little Brother has been angry at me all these years.  I let him down, and I wasn't aware of it.  There's nothing I could have changed, but my father's death resulted in an unexpected casualty -  the death of our family.

My Authentic Mother (Part 2)

     "You know I've never asked for anything before, but I've never felt this bad.  I need you to come here", my mother said.  She called me at seven o'clock this morning.  I told her, "I know you've never asked for anything before, and I understand how bad you feel.  I'm so sorry.  I understand.  I wish I could help you. I will do everything I can do to help you."

    Yet I was thinking as I tried to comfort her: "I can't count the times that I've needed you, that I needed your comfort, that I hoped that you would say, 'I understand how bad you feel, and I love you'.  You were never there for me.  You pretended I didn't exist.  You couldn't cope with an imperfect unhappy daughter.  You abruptly ended phone conversations when I even hinted that things might not be fine. You left me alone to fend for myself, and I did."

    I am angry at my mother.  Yet, I cannot abandon her.  I want to help her.  I want to be with her.  I want her to know I love her.

                                          My Mother and Me (circa 1951)

    But I wish she could apologize.  When she was hospitalized in February, I went up to Yonkers to be with her.  She was clearly comforted by my presence.  During the course of a mundane conversation we were having, she suddenly said, "I wasn't a terrible mommy, was I"?  I wanted to say, "You were a horrible mother, but I know you did the best you could do."  Of course, I replied, "You were a wonderful mother, and I love you".  And I meant it.

The Memory Unit (Part 1)

     I dreamed the phone was ringing.  Unfortunately, it wasn't a dream.  I fumbled for the handset in the darkness and finally pushed the talk button.  "What are you going to do to help me?  I'm locked in here?  Where am I? What's wrong with you, can't you see I'm not well?  Where are you?  Where's your brother? What are you going to do to help me?  I've got to get out of here!"  My mother was yelling at me.  Her aide took the phone and apologized for  dialing my number but explained that my mother had insisted.  My mother took the phone again and resumed her tirade.  According to my sister, after I spoke with my mother, she somehow managed to escape from her apartment and started banging on all the other apartment doors on the floor.  Thus began her journey to the Memory Unit.

                        Ilustration of Beta-Amyloid Proteins Forming A Plaque


     I called my mother the next morning.  My mother did not know she had a husband, and when I confirmed that she did, she could not remember his name.  Alarmed by this, I immediately called Sylvia, the Director of Nursing, to inform her that my mother's mental state had shifted dramatically.  By early afternoon, my brother had met with Sylvia and the psychiatrist.  According to my brother, Sylvia walked into my mother's assisted-living apartment, took one look at her and said, "Memory Unit".  A cruel euphemism considering its residents are suffering from a lack of memory.

     The move is scheduled to happen within the week.  I will not be there.  In fact, Sylvia preferred that family members not be present.  Thank you, I thought to myself.  I felt a quick rush of relief at the time.  In fact, since I was told of the decision, I haven't spoken to my mother.  It's hard to admit this, but I'm angry at her, for at least two definitive reasons that come to mind that I'm unable to share right now.  Thankfully, my brother has been handling all of the details, and apart from the stress of having to deal with new leases and logistics, he doesn't seem to affected at all.  I know that is not true.  I wish we could talk to each other about our ambivalent feelings.

     About two months ago, the landline voicemail box was full, so I decided to listen to the messages one by one to decide which to save and which to delete.  I accidentally deleted an old message.  It was  from my mother.  She had called during one of the great blizzards of 2010 to ask if we were snowed in and if had power.  It was her last phone call to me.