Monday, January 5, 2015

Confessions of a Brain Disease Widow

Am I a widow?  Not exactly. 

When I was still a very occasional guest blogger in these MIE precincts, Stan advised me that the best blogs are personal.  I believe him.  But most of the time, I lack the courage to be much more than a little self-revealing.   I’ve decided to take the plunge in a big way today.  In the back of my mind, there floats the notion that—on this first real workday of  2015—the  lovely regular MIE readers  will be too busy kick-starting the new year to pay too much attention, so I needn’t be too embarrassed.
Hippies get married.

A little background:  Nearly eleven years ago the love of my life started to get forgetful, would look at his to-do list and could not remember if he had called that client, or placed that order.  He was only sixty-seven, so no one was very alarmed.  It took the docs four years to figure out that they should do a brain scan.  When they did, in 2008, they discovered “brain changes consistent with Alzheimer’s disease.”  So today David and I are beginning year eleven of the sad business that is often called “the long goodbye.”

David's 78th birthday, last October, with the whole mishpucha.

Early last year, I moved David into residential care, giving him more security, a greater variety of daily activities, and access to therapies and professional nursing care.  And giving myself freedom from the stress of daily caregiving and more capacity to move about and concentrate on my greatest consolation, my late-life career as a novelist, something I wanted to be when I was nine years old.

It was just few weeks before my seventy-third birthday that I started living alone for the first time in my life.  It’s had its ups and downs.  Single personhood affords a great deal of freedom.   But for a someone who has never done it, it’s disorienting.

Fast forward to the holiday season that is now coming to a close.   So how was it?

Christmas Eve is a big deal for Italians.  Cultural traditionalists like me stage a huge fish dinner.  With lots of help from my friend John Linder, my ten-year-old grandsons—who are both wonderful cooks—and my son-in-law Ted, an extraordinary cook, who is also extraordinarily calm about the whole process, I gave it the full court press.  

It was a rip-roaring success.

The next morning, I woke up alone in the house on Christmas for the first time in my life.

David wearing his gift scarf and eating his favorite--Nathaniel's chocolate chip cookies. 

That afternoon we all—my daughter Kerry Ann, son-in-law, and my four grandchildren—went to visit David.  He recognized us, something I can’t always count on anymore.  We had a warm, bittersweet visit.   Later that day, I went to my daughter and son-in-law’s apartment, which was lively with affectionate dogs and the chaos of many newly acquired treasures multiplied by six.  Ted made us a lovely Scandinavian Christmas dinner.  Yummy.

The following few days were busy with visits from friends and good food and wine.  But New Year’s Eve loomed.  Gone were the grand opera performances followed by swanky dinners.  I told myself I would survive being alone.  I was sure I would.

Ghosts of New Year's Eve Past

Then came an email from a friend of decades who had recently moved to Philadelphia.  She and her husband had some low-key plans and if on the off chance (she imagined) that I was free, did I want to come and spend a couple of days with them?  Supper.  A visit with friends of theirs.  Fireworks.  And the next day the Mummers Parade.

I said yes.  What fun that was.


 The Mummers Parade

Lots of ruffles and gold shoes.

There must have been 200 of these Knights in White Satin.

On New Year's Day, Philadelphia is the cross-dressing capital of universe!
See what I mean.  More men in skirts than in Edinburgh and Glasgow combined.

Men in red ruffles and me.
This past Saturday I went for my weekly visit with David.  I left early because snow and sleet were predicted for the afternoon, and my car does not go well on snowy, icy roads.  The car is impractical.  It is also the swankiest gift David ever gave me—for my 60th birthday, as proof that a person could still be cool at that age.

I love driving.  And my buggy is perfect: little and quick, like me.  It feels like part of my body when I am behind the wheel.  If it’s impractical, so be it.

All of this is to say that I needed to visit and be home for before the snow flew, predicted for mid-afternoon.

When I got to him, David was not at all responsive to me.  I asked him if he knew who I was.  “Not really,” was his answer. “  We walked around a bit.  I talked to him.  He was uninterested.  He really wanted to go and sit in the activities room where a guy was playing the piano and doing a sing-along with the residents.  David chose a chair where there was no spot for me.  I stood near him for a while, singing along, too, but then, after having been there only a little over an hour, I figured there was no point in it, and I got in the car to go home.

The little red hot cars had their own section of the parking lot.  Mine is on the right.

As I exited the Lincoln Tunnel just before one PM, I found the snow already coming down.

While I drove down Ninth Avenue, my connection to David—the one my heart will never give up—glowed.  He always believed that I could do anything I set my mind to.  But he had also always been there, looking out for me.  Seeing the flakes hitting my windshield, I understood that, on some cosmic level, David’s behavior sent me home early on purpose.  You may not see this as I do, but you will never convince me otherwise.  My universe still includes him, and though I don’t know how, he still helps it function in a way that protects me from harm.

Annamaria -  the first Monday of 2015


  1. A wonderful and courageous post, Annamaria. I'm so glad that Christmas and New Year worked out well for you. I think you may be right about things at a cosmic level, too.

    1. Thank you, Michael. It's nice to know that someone as rational as a mathematician doesn't think I am entirely insane!

    2. I'm not so sure about 'rational'. Mathematicians are often better at music than common sense or arithmetic. And then of course there was John Nash (as in A Beautiful Mind). And he won a Nobel prize for Economics.
      By the way, the conventional wisdom is that there is no Nobel for mathematics because Nobel's wife had an affair with a mathematician. How irrational can you get!

    3. I stand corrected, Michael. Regarding your last point, considering how Nobel made his money--by inventing dynamite--I imagine he might have had something of a hot temper.

  2. Everything does happen for a reason I am sure. My granny's favourite saying was 'count your blessings until you have enough.' Not original but true.
    When two people have a strong connection, it takes more than a disease to break it.
    Best wishes for 2015, to you and David. You are blessed in the family you have. Truly blessed that they can cook! :)

    1. Caro, you know whereof you speak! In all ways as far as the comment goes. "Truly blessed that they can cook" to me means not only that I can enjoy the fruits of their labor, but that though my grandchildren are only one-fourth from my gene pool, they are culturally MINE!!

  3. You're a remarkable person, AA, even if Corvette fans would say you drive the wrong red car. To my way of thinking you're just perfect as you are...a blessing to friends and family...and the embodiment of carpe diem, no matter how it's spelled.

    1. Thank you, Bro. What lovely words. The spelling of the license plate stemmed from that fact that CARPEDM was already taken. I wanted it, so I found the spelling KARPAYDM available. It works backwards and forwards. David was a big honcho in the direct marking field, called "DM" by its denizens. So you can also read it as backwards: "DM pay car."

    2. I was lucky enough to be the passenger once in Annamaria's little red car. She is an excellent driver and one of the few who doesn't make me a nervous passenger ( I'm a control freak, I admit it!). we had a wonderful journey from Albany back to NYC and a tour of the Hudson. It was a delightful day and I will always treasure it!

    3. Lisa, I remember that trip VERY well. I hope there will be other road(ster) trips for us together in the future.

  4. That is a very courageous piece, Annamaria. And I echo all the comments by your colleagues above. Thelma Straw in Manhattan

    1. Thank You, Thelma. I thought a long time about whether to write this. With this warm reception, I am so glad I did. It was cathartic for me!

  5. A soul laid bare is a soul worth treasuring, AmA. Well, done!

    All my life I've valued both the dexterity of my body and sharpness of my mind, but if I had to lose one or the other, there's never been a second of doubt as to which I'd prefer to retain. Alzheimer's Disease and other forms of dementia have always been the boogeyman under my bed and in my closet. Fortunately, so far, I'm following in the receding footsteps of Jeff and only showing the normal momentary lapses attributable to advancing age. [fingers remain crossed]

    Thanks for what I am sure will be one of the highlight MIE posts of 2015, and all my best wishes to you and David!

    1. Thank you, EvKa.
      It is terrible to outlive one's brain. At David's stage, however, he is unaware of his predicament. He is not distressed about where he is or how he is. He is calm and at ease. They say we should try to live in the moment. He has no other choice.
      It's his loved ones--our daughter and her family included--who are feeling the pain at this point.

      Regarding your fears, I refer you to my previous post--The Fucket List. Do your heart's desire NOW.

  6. David is a lucky man to have had you for a loving partner all these years. Thank you for your story.

    1. Thank you, Juno. I think he knew that. I am lucky too.

  7. Vey moving piece. You have a great love in your life, and that warms you. And a wonderful family. Memories are like being there for me. You have a lot of love in your life.

    1. Thank you, Lil. I have a world of GREAT memories. It is a gorgeous thing to have spent 35 Years married to my best friend and the love of my life. I am well aware that not everyone gets half that.

  8. A fabulous and courageous post, Annamaria -- I would expect no less of you!

    I, too, have a highly impractical rear-wheel-drive convertible -- not the best car for snow. I bought a spare set of wheels from a breaker's yard and have fitted them with a set of full snow tyres, which I swap onto my car as soon as the bad weather looks likely. I can now venture onto roads where 4x4s fear to tread :))

    Hugs to you.


    1. Zoe, I knew we were sisters under the skin. Living as I do in one of the world's greatest public transportation hubs, I can get almost anywhere I want to without the buggy in bad weather. When the weather is fine, that car is a joy! Hugs back atcha! I wish we were going to cross paths in Italy this year. One day, we will.