From Alzwife to Alzwidow

The headstone has been selected. Pink Vermont granite with name, dates of birth and death, and the inscription, “Love people and tell them so.” The unveiling will take place in September.

It has been a long journey from the first time J didn’t remember a dinner engagement with close friends to diagnosis to day care to home care to assisted living to memory care, hospice and death.

I started this blog four years ago to give myself a place to express my thoughts and feelings as I traveled through Alzheimer’s World with J, our family and our friends. I also hoped to help and connect with other Alzheimer’s spouses for whom there are still precious few resources.

As time and new experiences have separated me from J’s illness and death, I have posted here less and less.  My transition from wife to widow is complete. While J always will be part of me, my life has continued and my time in Alzheimer’s World has ended. It is time to wrap up this blog.

I am fortunate that I was usually able to find growth, love and even humor caring for a spouse with Alzheimer’s disease. I hope I am at least a bit more patient and compassionate than before (although I still need occasional help in the compassion department and more frequent help in the patience department).

In this season of rebirth, where in the Jewish tradition we leave the narrow place (Egypt, slavery….) for the expanse, my heart is full. I remain close with my children. I will soon own a home of my own.  I have a wonderful new partner who I love truly, madly, deeply and who loves me.  I look forward to continuing to build our life together.  This is what J would have wanted.  Indeed, I am certain she didn’t leave me or our children until she felt we were ready to go on and truly live without her.

Thanks to all the readers who journeyed with me. If you have a spouse or other family member or friend suffering from Alzheimer’s disease, I hope you find support and some comfort along the way.  I hope you come out on the other end at least fully intact and perhaps wiser and stronger.

Ken yehi ratzon.  Let it be so.

 

Reclaiming memories

Sprinting through the Dallas airport to make a connection yesterday, I was reminded of another run through this airport 33 years ago.

It was the summer of 1986 and J, her sister, nephew and I were going to west Texas to visit her aunts. That was how I found myself urging them on as we dashed from Terminal A to Terminal D and barely made the flight.

It was a memorable visit. The flat straight-arrow road from Midland-Odessa to Pecos. The warmth of J’s family. The chiles rellenos so good that we brought home as many as we could carry. And, of course, the rodeo which, other than family, is the only reason to ever visit Pecos.

J’s aunts are long gone, J’s sister died four years ago, and now J too is gone. But as I was told when we were going through J’s decline from Alzheimer’s disease, the good memories are now more accessible. Like flying through an airport in anticipation of time together and a new adventure.

7 1/2 weeks and counting

Shloshim was over more than three weeks ago. That’s the first 30 days of mourning in Jewish practice. As a mourning spouse, my obligation to say Kaddish every day has ended, and there are no restrictions on my activities.

It seems soon. J and I had 33 years together, 10 of them with the added partner of Alzheimer’s disease. Now I’ve had 30 days plus three and a half weeks and normal life is supposed to resume?

What is normal? In addition to losing J, I have ended one relationship and started another. For the first time since 1985, I am the only one on my lease. I have no one I’m obligated to care for. It is liberating and terrifying at the same time.

Of course I still feel the pain of the loss, but Judaism recognizes that the passage of time is able to ease and heal the pain. The shiva was the worst, the shloshim was very hard, and this stage is bad. In time, it will get better.

As time goes on, I remember the Alzheimer’s J less and the old J more. Last year, I asked our kids to take J to a Christmas light show she loved. They never got around to it. I was angry then, but now I remember the year when I couldn’t find J and called her. “Where are you?” I said in my concerned voice. “I’m at the light show,” J said with glee.

It is more than enough that she took herself there and experienced her own joy. I try to take from that example and enjoy what comes my way, regardless of what others think.

Happy birthday, J

24 days into Sheloshim, the first 30 days after burial, and the day after J’s birthday. Yesterday was hard: checking in with our children and her brother, remembering birthdays past, deeply knowing there will be no birthdays future. This notwithstanding that J hadn’t been home for her birthday in a number of years.

J had lived in the memory care unit of a continuing care retirement community for the last two-plus years, so we have gone through the first birthday, anniversary, Hanukkah, New Year’s, Pesach, etc. without her at home. Now we do it again, with a whole new level of intensity. It’s not just that she is not physically at home, a home, by the way, that no longer exists because I sold the house where we raised our children and celebrated countless holidays and simchas. Nor is it just that Alzheimer’s disease peeled away layer after layer of her J-ness. Now she no longer walks the Earth. There is a finality that is undeniable.

Through the stages of Alzheimer’s disease, J was transformed. Through death, she continues to transform for me. And so do I.

In all my sadness I recognize that she is and will be with us in every step we take. This will allow me, at the appropriate time, to go on living the life I want for myself, which is ultimately what she would have wanted for me.

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.

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.