A Good Death

My last-living uncle died last month at 92. He exemplified the Greatest Generation. Drafted at age 19, he fought in the Battle of the Bulge. After the war, he finished his college degree and returned to the small town where he grew up to run the family hardware store. He was a large part of the glue that held his community together, and his family and town returned his devotion with love.

Most relevant to this blog, he died a good death, lucid to the end.

I don’t begrudge him this. And I am happy that my mother, his sister, also possessed a clear mind to her final day, even requesting her last cup of coffee from my son.

Part of me, though, deeply regrets that my father was not accorded that dignity, and that J is long past the point where she will die as the same person who lived.

One of the most awful aspects of Alzheimer’s disease is that it robs the family of the afflicted person long after that person has any awareness of who she was.

Spending time with my extended family after my uncle’s death leaves me praying for good deaths for everyone close to me. It also reminds me that while many of us have little to no control over how we die (although that is changing), we have almost complete control over how we live.

I have been studying a Jewish mystical text, the Zohar, with a friend of mine for the last few years. We have no idea what we’re doing. We don’t read Hebrew and can’t begin to unpack the dense readings. But the teachings often still resonate. I recently read about Abraham’s kindness and generosity. The commentary concluded: “The spiritual principle here is that each time we do for others and those in need, we actually do it for ourselves. It’s a gift to be able to help others….”

My uncle lived this principle. I hope to take that gift from him and do my best to live a good life, hoping it will lead to a good death — many years from now.


Stop the presses!


Ink used to run in J’s veins.  Her parents owned two local newspapers, and she was a journalist when we met.  I have never known her not to read a daily paper.  So it was with much sadness that I recently canceled her subscription.  Her Alzheimer’s is advanced enough that just she can’t read it.  Worse yet, she doesn’t miss it.

On a more positive note, I have been able to arrange with a local nonprofit organization for a dog to visit J once a week.  I was lucky enough to be with her when the worker came in with the dog, Sparky.  J was so, so happy.  I wish I hadn’t been the only one to see her sheer joy.

I want a dog

If you’re one of those people who keep track, J is probably in Stage 6 of Alzheimer’s disease.  That’s 6 out of 7.  This is not a test where you want to score 7 out of 7.  Zero out of 7 is much preferable.

Stage 6 means that J has difficulty remembering details of her own history.  She can distinguish between familiar and unfamiliar faces but has trouble remembering names — even mine after 30-plus years.  She can’t carry on a conversation.

But she is clear about one thing:  “I want a dog.”  She says this almost every time I visit her.  Today was no exception.

It is sad that I can’t provide the one thing she wants.  J lives in the memory care unit at a continuing care facility and can’t have a dog of her own.

So I’m working on doggie visits.  The CCRC allows them with documentation that the dog is licensed and its shots are up-to-date.  Our son’s dog is ready to go.  I can’t begin to imagine how happy that visit will make J.

Sadness at the dawn of 2018

At the dawn of 2018, I find myself thinking of those I lost and what J lost in 2017. Facebook is sometimes the salt in this wound. Memories pop up from five years ago, or even two, and I am hit between the eyes with what J can no longer do or apprehend.

Was it just two years ago that we went to the Christmas Spectacular in New York? Did she gleefully vote merely 14 months ago? Either of those activities would be impossible now.

J’s increasing deficits, not surprisingly, make me sad. They are compounded by other wounds — the mysterious death earlier this year of a kindred spirit, and the sudden passing of a new friend much too young just before Thanksgiving.

The poet Elizabeth Bishop wrote, “The art of losing isn’t hard to master.” https://m.poets.org/poetsorg/poem/one-art. But it is. And it isn’t.

There was a marvelous article in the Sunday New York Times about a group of people over 85 and their outlook on life. “If they were not always gleeful, they were resilient and not paralyzed by the challenges that came their way. All had known loss and survived. None went to a job he did not like, coveted stuff she could not afford, brooded over a slight on the subway or lost sleep over other events in the distant future . . . each welcomed another morning, the start of another year.” (https://www.newyorktimes.com/2017/12/29/nyregion/want-to-be-happy-think-like-an-old-person.html)

A comment from an old, dear friend was even more instructive. In response to my message, accompanying the above photo of our blooming hyacinths, “Even in the darkest times, growth happens,” she wrote: “I am optimistic that things will — and must — turn toward the light.” This from a woman who lost her beloved teenaged son 10 years ago.

P reminds me that we cannot feel loss without something to lose. Unlike J, whose memories have been stolen by Alzheimer’s disease, I still have mine. And the ability to make new memories. Time to turn towards the light. Happy New Year, all.

Making a Big Difference in a Small Way

I know I’m a broken record, encouraging family and friends to visit their loved ones with Alzheimer’s disease. So on this day when so many spend time together, let me quote someone else who makes the same point.

Gary Chapman, the pastor who wrote The Five Love Languages, has turned his attention to Alzheimer’s disease. In a recent article in Time magazine (http://time.com/5054768/alzheimers-dementia-spouse-love-languages), he explains that visiting someone with Alzheimer’s disease is good for them and good for you.

“Many times, especially after they put them in facility, people will say, Why should I go visit? They don’t even know who I am. But there are two reasons: First, they still have the ability to feel love emotionally … And they need love, it’s the deepest emotional need humans have: to feel loved. So you are doing them a great service when you spend time with them and seek to communicate to them and try to touch them in an emotional way. But it’s good for you too, because you know you are doing the right thing. And so at the end of all of it, you’re going to feel you did everything you could do. There’s something about that that gives you a deep sense of satisfaction I think.”

Visiting someone with advanced Alzheimer’s is hard. There is no way around that. I try to focus on the satisfaction it provides, especially when J’s face lights up because I’m there. When you visit someone with Alzheimer’s disease, you have changed her world for the better for those moments. In a powerless situation, you have done everything you can do.

Love — and love

A woman whose wife had been suffering with Alzheimer’s disease for six years went on a silent retreat. She had been through a grueling time and wanted to rejuvenate in the beauty of the New Mexican high desert.  She planned to receive spiritual teachings, journal and sleep.

In the van on the way to the retreat center (and before silence started), she noticed a woman who looked interesting sitting alone.  She plopped down next to her and they began talking.

They had much in common. The other woman’s mother had Alzheimer’s disease and she had been her primary caretaker. They both were relatively observant Jews with complementary interests in movies, art and music.

One night, the two walked back to their cabins together and shared the infinitely starry night.

But they returned to their lives, corresponding by text and occasionally seeing one another.

The texting continued and they went to another silent retreat together.  The woman caring for her partner had effectively been alone for years, and she and the woman from the retreat embarked on a relationship.

You probably have guessed that the Alzheimer’s caregiver who started a new relationship is me. While I’ve shared this information with those closest to me, I’ve kept it from readers of this blog until now.

A recent article in U.S. News & World Report, however, inspired me to come out. (The link is below.) The article begins: “It’s private and few people discuss it openly. Couples who’ve spent decades together as lovers and equals – husbands, wives and partners – increasingly take on the roles of caregiver and patient as Alzheimer’s disease progresses. Sex and emotional intimacy give way to an all-consuming responsibility. During those difficult months and years, the still-healthy partner may ache for someone with whom to talk, share a restaurant or movie date or have a physical relationship.”


I wasn’t looking for a new relationship when I met P. If I thought about it at all, I figured I would outlive J, my wife who has suffered with Alzheimer’s disease for at least eight years, and then, if I was lucky, I might meet someone else.

No one was more surprised than me when P came into my life. Yet it has always felt bashert (Yiddish for “meant to be”), which doesn’t mean it has always been easy — for me or P.

I am not the only Alzheimer’s caregiver who has unexpected found new love, but most others I know keep quiet about their new relationship.  I understand. My children and in-laws have been amazingly accepting, but I have lost a couple of friends who can’t seem to adapt to my new relationship.  In my less evolved moments, I would like them to spend some time in my shoes (although I wouldn’t really wish that on anyone.)

How do I reconcile my life now? There is a Talmudic story of two great rabbis, Beth Shammai and Hillel, who argue about contradicting views of Jewish law. Each insists that he holds the correct view. They can’t both be right, or can they? A voice from the heavens announces, “The utterances of both are the word of the living G-d.” Both views have merit.

This story informs my thoughts about my situation. I am able to hold my love for J and my love for P. They are both great blessings.

So why not stay silent? Isn’t there enough confessional literature in our culture to last a lifetime?

I have written this blog post for me, for P and for you.  P is a big part of my life now, and I felt dishonest not acknowledging her.  It also can’t have felt good to her to be referred to generically as my “friend” when she is my great love and partner.

But mostly I write for the others in similar relationships who think you have to hide. In my experience, living with a secret is always corrosive.  I hope you can find your voice and find acceptance among your friends and family.

@love @alzheimers @alzheimersreadingroom @alzheimersassociation @alz @alzwife @dementia @jewish

Laughing says I love you

I had breakfast with J and our son T this week at our regular diner. J has early onset Alzheimer’s disease and is often confused. To the extent she talks, she mostly mirrors the last sentence she has heard.

Me: Do you want eggs?

J: Do you want eggs?

Me: How about bacon?

J: How about bacon?

I ordered her an omelet, toast and coffee.

During this visit and the last, J laughed a lot. Her laughter is not in response to anything we’ve said. Indeed, I’m pretty sure she only picks up bits and pieces at best. At first, this behavior disturbed me. It doesn’t feel like a connection when the laughter doesn’t relate to the situation or conversation.

Then I mentioned it to a friend who cared for her mother with Alzheimer’s. She said, “J laughs because she’s happy to see you.” Of course this seems obvious now, but I needed someone else to point this out. (Thanks, P.)

This revelation also underscored the importance of spending time with J, however painful it is. The whole family agrees, it’s also harder on us not to visit than to visit.

I was away for Thanksgiving, and so our daughter, L, saw J on her own. L was sad that the family was not together for Thanksgiving and that the home where we spent her childhood holidays is gone. (I sold it in May.)

L told J she was having a bad day and J took her in her arms. For a moment, L glimpsed her mother before she began slipping away and L was comforted.

So this is where we find the moments of connection eight years in: in laughter and sadness.