Theme and Variations Part 2

A Swift Current || And Don't Be Afraid of the Dark

At the end of the storm Photo by Hallie Swift

We lost Mike.

My Mother called my Dad’s closest friend from work. She spoke three words and dropped the phone.

We lost Mike.

She let out an anguished wail; a strangled sob from the deepest part of her.

We lost Mike.

She ran into their room and slammed the door.

We lost Mike.

They were married for 34 years. And for 34 years, he called her Darling.

On their first date, they saw Walt Disney’s Fantasia and had dinner at a neighborhood restaurant. Year after year, for birthdays and anniversaries, we joyfully returned to the scene of that immortalized first date, creating our own family folklore.

Every night as he came home from work, my Father walked down the street loudly humming bars from whatever symphony or concerto happened to be running through his brain. The neighbors, hearing my Dad before they actually saw him, laughed and waved. And my Mother invariably called out…

Here he is…our husband and father!

They were older than the other parents; graying hairs, aging profiles. They were thoughtful, careful, deliberate. Yet at the same time they built a home bustling with new ideas and discoveries. They challenged our thinking; embraced our interests; encouraged vigorous debate. Politics and religion were lively dinner table topics; homework a serious family endeavor.

And our door was always open to the neighborhood kids; our house teeming with activity on warm summer evenings– tag on the front lawn; the Beatles on the turntable; hamburgers on the grill.

I remember one night studying in my room when I heard the muffled sound of unfamiliar music coming from the living room; the rhythmic beat of castanets and guttural Spanish cries; a new record on the stereo.

I peered into the living room and there they were–

My parents

dancing

to Flamenco!

My Mother turned to me, beaming:

Oh Hallie, doesn’t this just stir your Spanish soul?

I was incredulous. To my teenaged eye, they looked ridiculous.

And thrilling.

My serious parents

dancing to Flamenco.

Who knew?

Then

only a few years later,

after a brief, excruciating battle with cancer,

We lost Mike.

She was only 61.

I thought she was old.

I thought she was old and an adult and
of course, adults know how to handle these things.

I gave little thought to her loneliness; her sorrow; her grief;

their marriage.

Until decades later, as dementia set the stage, and my Mother’s mind became obsessed with certain subjects. Unresolved issues rose to the fore. A single topic would kidnap her brain. If I tried to change the subject, I might succeed for a sentence or two, but in a flash she would reintroduce her latest theme.

Each theme would take center stage for months.

And just when I thought she couldn’t possibly explore it any further, she would circle back to her opening lines.

It was unyielding.

It was exhausting.

And one of those themes:

My Father.

Where is he? Why doesn’t he call? He is living down the street. I saw him walk right by– but he doesn’t visit. He is paying my bills but another woman lives in my room. Who is she? Why does he let her live here? She has no right to be here. Why is he doing this? Why is she here?

Get out!

Despite the do-not- argue dictum for families of dementia,

I simply could not go along.

When the WHERE IS HE? theme first emerged, I gently reminded her that he had died years ago.

He died? No one told me.

Mama, he died. We had a funeral.

NO. If we had a funeral, I would know. I would have been there.

But you were there.

NO! You did it without me. You and your sister; How dare you go behind my back!

I am his wife;

I have a right to know!

For at least a year, this theme underscored our every encounter.

I am his wife. I have a right to know!

She created scenes in the hallways, accusing other residents of cheating with my father. She upset their families. The nursing staff explained that false accusations are a normal part of dementia; not to worry.

I am his wife. I have a right to know!

But even the nursing staff had its limit. One day the social worker pulled me aside:

Your Mother keeps saying: I have a right to know…

This doesn’t just happen.

Her insistence is too overpowering, too relentless.

Is it possible that she is confronting a deep wound?

Did your father have a secret?

Perhaps we were confronting the ultimate indignity of dementia:

It pulls back the curtain:

Dark suspicions aroused;

Fissures revealed;

Pain relived;

Wounds stripped bare.

Perhaps we were confronting dementia’s ultimate truth:

Buried questions exposed;

Secrets succumb;

Sorrow turns to rage.

The theme continued, month after month, variation after variation:

He is alive; he isn’t calling; he’s been murdered; you girls are hiding the truth…

After my initial efforts to dissuade her, I simply gave up.

I listened. I couldn’t argue. I couldn’t agree.

The most I could muster:

I don’t know, Mama. I just don’t know.

Of course you know.

Mama, I don’t…

One day, as abruptly as it started,

the theme simply disappeared.

She let it be– as though she had finally reached a resolution

in her own private purgatory.

And as if awaiting their cue, other themes captured her. Each recalled a past trauma– the deaths of her sisters; a baby lost more than sixty years ago. One by one, each past agony, real or imagined, was confronted; relived; then extinguished,

never to be mentioned again.

It was brutal to witness her war with the past. And when each theme finally dissolved, I felt complete unmitigated relief.

During her final years, I tried not to mention my Dad. If I accidentally referred to him, I held my breath; but she never resumed her diatribe.

In fact, she even seemed at peace.

My Father;

Perhaps he was less perfect than I once thought.

Perhaps he was flawed.

But for me, his song remains the same.

The man who loomed large then still looms large now.

And I know what I know.

My great man;

He will always cry at the end of Carousel.

And so will I.

When you walk through a storm

Hold your head up high

And don’t be afraid

Of the dark…

A Swift Curent And Don't Be Afraid of the Dark

And Don’t Be Afraid of the Dark Photo by Hallie Swift

You’ll Never Walk Alone, composed by Richard Rodgers and Oscar Hammerstein II, published by R&H Music Publishing Company, an Imagen Company, All Rights Reserved

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14 thoughts on “Theme and Variations Part 2

  1. Hallie, I just read part one and part two. It amazes me how many similarities there are between your parents and mine and how we were raised. My parents were older. My Father was 53 when I was born and my Mother was 33 which doesn’t seem that old except that she had my brothers at 20 and 22 and in that day and age, 33 was an older woman. You mention sitting at the table and talking politics and religion. Those were my Father’s favorite topics aside from asking my brothers about how much they practiced their piano and violin lessons that day. My Mother turns 90 one week from today and up until recently she had not really said much about my Father through the years actually but now he is almost a daily topic. I can’t imagine her not remembering his illness and his death. It gives her so much pleasure now to have those memories. If they were ripped away from her through dementia, it would be a travesty and when she does have a lapse of memory of sorts it terrifies me that this would be an area that would be affected. I was much closer to my Father. He sort of groomed me if that is the right word. We would sit for hours and discuss politics and social issues. He was born in 1903 and died in 1990 and was an immigrant in 1921 to Ellis Island. He had very strong opinions and his presence in the room was strong and it was felt by all. He was a published author in English in 1945 “An Italian Tragedy” and he spoke 4 languages. How could my Mother ever forget him?
    Once again I learn from you and am in awe of every word you commit to paper. I am so glad to have found you again.

    • I appreciate your comments and the similarities between our lives! Also, thank you for reading the two parts together…I am hoping people will do that!

      Of course, there many types of memory loss, and simply forgetting things does not necessarily equal dementia, which does not necessarily equal Alzheimers. As I have said before, the frustration for me, as a family member, was 1) I had very little knowledge of what could happen, and 2) available advice for family members, like “do not argue,” is so abstract it is not really helpful.

      Also, I wanted people to be aware that when a person adopts a “theme” and cannot drop it, based on my experience it could be a telltale sign of dementia. I recently visited an elderly friend, who kept insisting I meet a friend of hers who also lives in NY. I recognized that she couldn’t let the topic go, and it was like a flashing yellow light that my friend’s illness had taken a new turn. There is a tendency to think the person is just being forgetful, and get frustrated with the amount of repetition, but actually obsession with a topic is a sign that something more complicated is unfolding.

      I hope by relaying these narratives, families like yours might be better prepared to recognize signs of bigger issues, and be better able to respond (and call on the huge wells of patience that are required).

      Another revelation for me, and I have tried to underscore in these narratives, that there was often logic and/or truth in what my Mother was saying. While her statements might sound nonsensical or be deeply upsetting, I believe it is important not to dismiss the dementia patient (which is tempting to do). I believe that the demented person has to be taken seriously; they might not be saying what we want to hear, but we must recognize their words are often coming from a place of deep resonance.

      Finally, it should go without saying that language is only one way to communicate. Sometimes we forget that in our frustration with the demented patient. But I’ll stop now…I am almost writing another post!
      Thank you for your support of my efforts, and Happy 4th, H

  2. Oh H, this one is so beautiful. I wish you and I had been closer in our childhood so I could have known your parents better. Lovely, lovely, sad. So much empathy–I know exactly what it was like/is like!!

    • Thank you! I loved writing it. I know this is a tough post, but I do hope people comment so we can continue the dialogue. I know that as I get older, the friends of my youth play a particularly poignant role; all the competition of our younger years just fades away as we face similar issues, and cheer each other on. Once again, your comments spur me on! H

  3. H,
    You should also be writing fiction too! You have a compelling voice. This was one of your most beautiful remembrances for me.
    V
    Sent from my iPad

    • A few weeks ago you wrote that you set the “bar” high for me, and so this comment thrills me completely. I remember a few years ago, meeting with someone very prestigious in the music industry…I told him I would love to be a “ghostwriter” for autobiographies, and he responded…”you need to tell your own stories.” And then I told him I didn’t have any stories, and he laughed and said…”yes, you do…you just don’t know it!”
      Maybe it was because it was before my Mom died; I didn’t realize how the decade had influenced me…it was only then that I realized that what had unfolded was, to use your word, “compelling”– if not unique, and as the decade was complete I was a very different person than I was before.

      One of my cousins recently visited me and said, “I have to tell you–I like my cousin even more than I did before.” My old self might have been offended; my new self loved both his observation and that he was willing to share it with me…THANK YOU for you comment, H

  4. it was such a good idea for you to start “A Swift Current” — each addition throws a new light on the inside world of people with Alzheimer’s, as well as sharing the trials of those who love them — it’s so easy to take our health for granted, and to forget about the problems of those having to deal with illness on a daily basis

    • Thank you! Your comment underscores what I hope to achieve…I don’t think I knew this when I started, but telling the story of the decade through a series of relatively brief narratives parallels how it actually unfolded for us…discovery upon discovery, revelation after revelation. I know I have said more than once that I didn’t know what to expect, but in fact maybe it is just not possible for health professionals to communicate to family members the enormity of what can/will unfold. I hope that if family members access A Swift Current, they will recognize particular situations and know that behavior that might seem bizarre/upsetting/offensive is actually a “normal” part of the disease.
      And remember that their loved one has no control over the behavior.
      And I like your observation that it’s easy “to forget about the problem of those having to deal with illness on a daily basis.” It might sound trite, but I do try to remember that the person standing right next to me might be dealing with an unbearable dilemma, loss, sorrow. I know as I walked around in a fog in the months after my Mother’s death, I was not “on” in the way one needs to negotiate the streets of NYC! You are right; it is so easy to forget…Thank you again, H

  5. It’s one thing to be introspective and contemplative after going through a long journey such as this, and quite another to share it with others as you have in this blog. While the topic of dementia is near and dear to my heart, I’m finding that I eagerly await each story as you take me on a wonderful journey of beauty, hope, love and life. You are a great storyteller!

    • “Storyteller”–I think that word is a high compliment. I am of course feeling my way here…and the “art” of telling a story is new to me. I am learning; this post is an example. Originally Themes and Variations was a single long post; but then I realized that my father had never appeared on the blog. If I discussed my mother’s where is he? obsession in a vacuum, the readers would have no frame of reference and the impact of her anguish (and my confusion) would not resonate.

      Hence, I developed my discussion of my dad (Part 1), and then discussed my home life as a child and teenager (Part 2) as the groundwork for the painful discussion of her reaction to my dad during her demented years.

      After I changed my approach to this post, I happened to listen to an interview on NPR with one of the chief scriptwriters for Pixar, who emphasized that is it crucial to make your character sympathetic at the outset– however flawed the character is revealed in the later part of the story. (It might sound obvious, but they struggled for more than a year with the original Toy Story script because they had not make the lead character very likeable in the first versions). I was delighted to hear the interview, as I had just figured that out for myself, and it made me think my instincts are getting better! THANK YOU for commenting and for “eagerly awaiting each story”… Hallie

  6. Dear Hallie, I didn’t recognize “my line” – unless it’s you know what you know, which is a major theme for me typically. The chant of the intuitive personality! The post is lovely and sad. It seems so cruel to think the love of your life has abandoned you and have no way to correct that in your mind. This morning I stopped by a birthday breakfast for an older man named Bill, who used to slowly walk the lake giving treats to all the dogs. He’s an ex-minister, very bright and centered. Because my walking friend has a dog, I came to know him too over the years. But then it got harder for him to walk and his wife needed care for her increasing dementia, so we don’t see him anymore. Today was his 88th birthday and the old gang gathered. He’s crazy about his wife, spends most of his time with her at the home where she now lives and even sleeps there most nights. “She’s still got her mischief,” he told me. So I asked if she still knew him. Michael can’t believe I ask things like that, but I think people like it when you’re interested beyond the surface level. Anyway, he smiled and said, “Most of the time.”

    Does Theme and Variation have a part 3? K

    • Yes, a few days after I posted Part 2, I realized that your poem about your dad contained a similar line to “I know what I know” and I wondered if I had lifted it from you deep in my psyche…because I loved that poem and thought you hit it out of the ballpark!

      And your observation of the cruelty of dementia is spot on as well; I am not sure I have developed this idea enough at this point. But many times the source of her anguish was simply not true (they are spying on me, for example, as paranoia is a huge part of dementia). And no matter how you try to counter the anguish, there is no point…in that sense, “they know what they know” and if you try to dissuade them, you become part of the conspiracy. Again, the rational person gets caught up in the rational argument, and with dementia, you always have to remind yourself to enter their world and leave logic behind, even though you know their pain has no basis in fact. It does to them, and that is what matters.

      How lovely that you visited Bill and how lovely that you asked him if his wife knows him– I think people are too afraid to discuss the elephant in the room when lots of time the person welcomes the chance to be open. “She’s still got her mischief” is a GREAT line–it actually reminds me of the sly look my Mom used to get…

      There is not a Part 3…at least not yet…

      Thank you, H

  7. Tremendous. I look forward to every one.

    I have given the blog address to two more of my friends. One of them is starting to go this with her Father and the other friend had her husband die with dementia at a young age. I know your writings will help them.

    • Thank you for sharing my writing. I hope your friends find solace and advice and thoughts to help their reflections. I am grateful you think they will find it here. It is so important to know you are not alone.

      H

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