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.

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Scenes of the first days without

The last three days have been a blur. The funeral. The first night of shiva. The interment. The second night of shiva.

And then the heartbreak of cleaning out J’s room yesterday. What to keep? What to discard? They are only things, but will they bring comfort later?

The stories bring comfort. J as a teacher, a neighbor, a friend. Her students loved her. They were not the only ones.

Then there was the dream on the first night. Our children and I and the extended family were in a meadow. J was a large yellow and black butterfly, fluttering among us. Has she completed her metamorphosis?

She is still with us. Last night lighting shabbas candles, I felt her there.

There is finally comfort in knowing that she is always with us — not the J at the end, but the one who made her grandmother’s yeast rolls with our son, wrote funny letters to our daughter at summer camp, and danced in the kitchen with me.

The End

Our beloved J passed away peacefully on Sunday night. She was surrounded by family and Ella Fitzgerald singing, “Someone to Watch Over Me.”

As we attend to all the details involved in arranging a funeral and shiva, we reclaim the stories, the laughter and the love.

Comfort Potter style

J has stopped eating and drinking. We are told that if nothing changes she is likely to slip away in her sleep in the next week or so.

The family gathers in her room. It is becoming routine for us to drive out to J’s facility together: me, our son, our daughter and our son’s life partner.

There is comfort in the familiar. We are a Harry Potter family. Our son, T, is exactly Harry’s age. We read each book aloud as a family as soon it came out. We read them multiple times: silently alone, all together, in various duos. J, who has been living with Alzheimer’s disease for at least a decade now, was the best reader. No one could come close to her voices: jovial Hagrid, stern Prof. McGonagle, evil Dolores Umbridge.

We still read Harry Potter aloud, but now we read to her. Surely she doesn’t understand it at all, but it clearly calms her.

We also read it for ourselves, and it comforts us, too, reminding us what we had even as it also reminds us of what we have lost.

Of Ice Floes and Broken Hearts

Occasionally my father would talk about death. He fantasized about going out on an ice floe, very late in life, and meeting his end. He said there would be no pain. He would simply fall asleep and not wake up.

He had no such luck. At 79, he went to see his cardiologist and was told he needed emergency quintuple bypass surgery. Extended time on a heart and lung machine allowed the repair of his heart but also damage to his brain. He was never the same.

Most devastating for him, he never returned to work. A neighborhood doctor, medicine was one of his great loves.  My mother, his five girls, the woods and his vegetable garden were some of his others.

My mother struggled on in the single-family home my sisters and I had grown up in, but she grew increasingly isolated. Eventually, my parents moved into a continuing care retirement community. My mother stayed in independent living, and my father in a skilled nursing unit.

It was the best solution for them. My mother could once again have a social life — playing cards, working in the CCRC store and singing in the choir. She also could see my father several times a day and keep an eagle eye on his care.

I have been thinking of them even more than usual lately as J continues her accelerating and inexorable decline from Alzheimer’s disease.

One of the many things I learned from my mother is the fierce advocacy needed to ensure quality care even in a good facility. What I learned from both my parents is that love endures even the greatest heartbreaks. I saw right in front of me the beauty of living a long committed life together.

My father, the doctor, would be happy to know how much I appreciate the heart: our living organ that beats from our earliest beginning in the womb until after our last breath. It was built to withstand the greatest pain and still go on loving, perhaps even more strongly than before.

The living must go on living

More than a year ago, I signed up for an Adriatic cruise. Ten days before my departure date, J was placed in hospice care.

J has stabilized and here I am on a plane headed for Venice, but not without mixed feelings. I have strongly urged our adult children that the living must go on living. The hospice nurse has urged me on, stating with confidence (although she never knew her before Alzheimer’s disease) that J would want me to go.

Flaps up. Fingers crossed. Stay tuned.

False alarm – sort of

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(Creative Commons Oldish Fire Alarm by bmb is licensed under CC BY-SA 2.0)

Yesterday I got a call from the memory unit where J lives that her blood pressure was dangerously low. I got her doctor on the phone, who gave me the impression that the end could be very near.

So I called our adult children, who live within five miles of me. We all prepared ourselves for the worse as our son, his girlfriend and our daughter piled into the car, heading to J’s facility.

When we got there, the aide had given J a tranquilizer and she was sound asleep. Her breathing was easy and she didn’t seem in any pain. Her doctor, who had not seen J in person before asking the aide to call and alarm us, changed her level of care from palliative to hospice. This was good because it meant a registered nurse was immediately dispatched to evaluate her.

A full evaluation was impossible because of the tranquilizer, but at least the nurse could assure us that J wasn’t dying last night and she sent us back to our respective homes.

Who knows what comes next, but thanks to hospice, we will have more than the word of an aide with little to no medical training and an on-call doctor who hasn’t actually seen the patient. If I sound angry, it’s because I am. What a system!

I also recognize that I’m angry because we are going to lose our sweet J sooner than I thought. So hug your loved ones for us and wish J an easy passage when it comes.

UPDATE:  J’s blood pressure returned to normal today.  Quite the emotional roller coaster.