The Starmaker Machinery

More than halfway through the first 30 days after J’s burial, and the myth is growing. J and I were together for 33 years. We were among the first same-sex couples to have children through artificial insemination and to take the necessary steps to legally make them ours.

And so, now that J is gone, others need to mythologize our relationship. From the outside, we were role models.  I can’t say how many telephone calls and cards I’ve gotten that say we showed others how to sustain a long marriage.  It did not always feel that way from the inside.  Indeed, for the last 10 years, likely through no fault of her own, J did not/could not fulfill the wifely duties she had taken on when we wrote our ketubah, the Jewish marriage contract.

Alzheimer’s joined our family in the mid-2000s, although we didn’t know it until later. J was not formally diagnosed until 2011, but with the help of the retrospectoscope I can see signs as early as 2005 or 6. J stopped covering her mouth when she sneezed. A committed environmentalist, she stopped cleaning up her cigarette butts. More painful for me, she stopped asking me about my life with any degree of interest.

The years before J’s diagnosis were less than ideal. J stopped wanting to travel or try anything new. She totally ignored my 50th birthday. She denied that our very old dog was routinely soiling our living room floor.

Publicly, we remained the ideal couple, feted and celebrated, and yet I sometimes fantasized about leaving.

We got the Alzheimer’s diagnosis and of course I stayed. I am glad I did. I learned so many lessons about love during the last 10 years.  That does not mean, however, that we should be placed on a pedestal.

Under Jewish law, mourners are supposed to tell the truth about the deceased and not exaggerate their praise.

Much about J was praise-worthy.  It is an exaggeration, however, to hold us up as a wildly successful partnership for all our 30-plus years.  I wish that outsiders could see the fullness of the relationship. There were hurts and losses and misunderstandings as well as joys and triumphs. J was wonderfully human, and our relationship was complicated, and ravaged by Alzheimer’s disease.  During our years together and now, it was sometimes tinged with pain and always filled with love.  At this stage of mourning, that is my truth.

Rounding Third Base

  

I am in the last full day of being away for a week and a half and the wear has begun to show on my wife J, who has Alzheimer’s disease. 

Her caregiver reported that J yelled at her a lot yesterday and said, “I just want A.”

 It did not help that J lost her wallet yesterday and felt bad about it. It was found today, but not before I had spent 40 minutes on the phone with the bank to cancel her ATM card.  The bank made me conference J in, and we had a Who’s on First dialog before I finally got J to communicate that it was ok to cancel her card and issue a new one. On a joint account. (Note to self: send a copy of the power of attorney to the bank.)

Since this has been so tough on J, I wish I were having a better time. I am at a mandatory education seminar where we have sessions from 8 am-5 pm and then usually a dinner with a speaker.  I’ve been here for six days. And it has been bitterly cold. 

I can’t wait to get home tomorrow and I am trying not to anticipate what it will be like. J might be happy and loving, or she might be furious that I was gone so long. I also am conscious that time has different qualities in Alzheimer’s world. It might feel to her that I have been gone for six months or a year. 

My sister, D, told me long ago that there is no point in predicting the future because whatever I imagine, it won’t be like that. 

So I will do my best to go home tomorrow with an open heart.