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.

 

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.

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.

Shanah Tovah 5779

“There is no calamity that does not have a kernel of blessing concealed within it….,” says the commentary to last week’s Torah portion.

So what are the kernels of blessing in having a spouse with Alzheimer’s disease?

First, despite some fits and starts, J’s Alzheimer’s disease has caused our family to get closer and pull together, especially now that she is in the most advanced stage.

Second, dealing with this disease teaches patience. Even something as simple as feeding J demands attention. I have to wait until she has thoroughly chewed and swallowed before offering the next bite.

Finally, there is blessing in the realization that all that is left for J is love. She freely gives it and receives it.

Although J has no idea that Rosh Hashanah starts tonight, may the same be true for us all in this new year.

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.”

https://health.usnews.com/health-care/patient-advice/articles/2017-10-27/when-the-partners-of-alzheimers-patients-seek-other-companionship

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

To Life!

Like a kid with a scab to pick, I couldn’t stop myself from asking The Question: Do you know who I am?

“Gggrwhhh.  Bltxfthhhhh.  Pthrrrx.  Lawyer.  Zhgggfff.  Gluuchhhh.”

A few minutes later, I casually dropped, “Do you know my name?”  J made direct eye contact and said matter-of-factly, “I really don’t.” “My name is A.”  “Of course.”  “Are you married?” “No,” she said, with a hint of incredulity. 

So the moment has happened: J has only a tenuous grasp on who I am after 30-plus years together. Such are the ravages of Alzheimer’s disease. 

Oddly, my heart did not break. This is just another milepost on the Alzheimer’s road. 

Instead, my heart turned to last week’s Torah reading, the final portion before starting the new year. Moses is giving his last instructions before the Israelites will cross into the Promised Land, a place he will not go. Instead of expressing bitterness, he lays before the Israelites the choices they must make to either embrace blessings or curses. “I call heaven and earth to witness against you this day: I have put before you life and death, blessing and curse. Choose life — if you and your offspring would live.”

As we all enter 5778, I wish for each of us to choose life. J still does, and so do I.

Love endures II

Having blogged now for more than two years and 100 posts, I worry about repeating myself. But this bears repeating. 

Love endures.

As I reported in my last blog, I’ve stopped taking J out for meals and have instead started taking her on errands. The trip to Discount Shoe Warehouse went well. She was able to express preferences for the shoes she wanted and we left with two new pairs.

Next up was a trip to the dollar store. My workplace is collecting supplies for a local school. (Don’t get me started on the need to donate basics like pencils and paper to public schools.)  J taught 4th and 5th grade for 12 years before her Alzheimer’s diagnosis, so I thought picking items to donate would engage her. I was wrong. She was fine with being at the dollar store, but she had no interest in shopping for gifts for children she doesn’t know. I don’t think she understood what we were doing.

That said, as often is the case, she clearly enjoyed going out with me and our daughter. Does she know who we are?  I think so, but who knows?

She has, however, gotten more loving.  She was always a hugger. Now, the hugs come even more freely. And not just to me or our kids or friends who visit. She hugs the staff people at her continuing care retirement community. She hugs her doctor. Given half a chance, she would hug the check-out person at DSW. There is also a sweetness that was hidden before.

Our love has changed. The eros is long gone. J has been unable to be an equal partner for more than seven years. We live separately now and largely have separate lives.  Our love has changed, and yet, it is still strong.

As one of my rabbis wrote this week, “Judaism teaches that a soul is never damaged. The body perhaps, the psyche perhaps, but the inner core of goodness that is the soul never. The essence always remains intact.”

As the disease progresses, J’s inner core of goodness is more manifest. Love is the only possible response.

A gift of apples

This is the first Rosh Hashanah where J has been living at a continuing care community because of her advancing Alzheimer’s disease. At her doctor’s recommendation, I did not bring her home for our usual holiday dinner. The dinner itself was joyous. Both our adult children were there as well as friends so close that they are family. We said the traditional prayers and discussed issues of the day. We laughed and ate and drank: gefilte fish, brisket, kugel, challah, apple cake. Washed down with wine. 

I missed J most in the kitchen. She was not there as I chopped the fish or kneaded the bread. Grating onions was not the only cause of my tears. 

I didn’t get the opportunity to visit J until last night. I brought her a bag of Granny Smith apples. She really lit up. “Oh!  These are my best,” she said. We washed an apple for her.  She bit in with a resounding crunch.  She giggled. Her eyes blazed. 

The metaphor of the High Holidays is that the Book of Life opens on Rosh Hashanah and remains open until the last moments of Yom Kippur. During the High Holidays, we repeatedly say a prayer called Unetanah Tokef.  It underscores that it will be written who will live and who will die in the coming year; who by fire and who by water; who by sword and who by beast; who by heart disease and who by Alzheimer’s disease. Only teshuvah (returning,) tefilah (prayer,) and tzedakah (righteous acts) averts this harsh decree. 

I still feel intermittent anger towards G-d. How could G-d take the vital, fiercely funny and intelligent J and turn her into someone who can only play dominoes with assistance?  

Jews also say a daily prayer, acknowledging that the soul we were given is pure, no matter what.  When I can practice teshuvah, the turning the tradition requires, I can see that J is returning to her pure essence. What a great deal we can learn from the way she eats an apple. There is unalloyed joy in the smell, crunch, juice, taste. Such laughter in her enjoyment. 

May all beings experience such joy in 5777. 

Memories

I’m spending a week at the beach without J.  It’s the same beach where we have gone for the last 25 years or so. I was on automatic when I made the reservation back in January. It didn’t occur to me that it wouldn’t make sense to bring her, even though it was so difficult to have her here last year that I called a friend in tears and begged her to come down and help me. 

One of the rituals of being here has been to frequent a particular ice cream shop with the best frozen custard I have ever had. It is thick and rich and has none of the artificial flavor of most commercial custard.  Our kids grew up chatting with the proprietors, Tom and Joe. Last year, Tom wasn’t there and I inquired of Joe. Tom, who couldn’t have been older than his early 50s, had died of a massive heart attack. This year, Joe showed me his scar from heart surgery he had during the off season. “I shouldn’t be alive,” he said. 

This, combined with J’s inability to come to the beach this year because of the advancement of her Alzheimer’s disease, underscored for me how quickly life can change.  We can be so fragile and our futures can be shattered in a moment. 

We are in the Jewish month of Elul, when we take stock of our lives and prepare for the High Holidays. We ask ourselves questions about what serves us well and what we want to change. We have full faith that we can break old patterns.  We are reading the last book of the Torah, Deuteronomy, where Moses retells the story of the Exodus, and what is added is love.

 In this coming year, may I turn towards love, both the giving and the receipt. May I extravagantly let all the important people in my life know what they mean to me. As J’s mother always said, “Love people and tell them so.”

Letting go


I’m on a Jewish mindfulness retreat in New Mexico where I’m not supposed to be in contact with the outside world.  It’s Shabbat, a day when we particularly are encouraged not to look at electronic devices.  It’s early evening.  I glance at my phone.  I have six messages from my wife, J, who has Alzheimer’s disease and who recently moved to a continuing care community.  I can’t help myself.  I listen.

1:18:33 PM:  “I need help.”

1:20:04 PM:  “One.  One.  Yes.”

1:23:31 PM:  “I … hemm…uh…it’s…uhhhh….”

1:31:16 PM:  [No sound.]

1:56:11 PM:  [Unintelligible background noise.]

5:50 PM:  “Oh, fuck.”  [Unintelligible.]

It is two hours earlier for me than in the East, where J and I live.  The latest message is two hours stale; the earlier messages are almost seven hours old.  I launch into action anyway.  I call the nurse’s station.  The certified nursing assistant on J’s floor doesn’t pick up.  I call the main desk.  The security guard promises to get the CNA to answer.  I call again in five minutes.  The CNA lifts the phone and immediately puts me on hold.  She eventually comes back and I explain the messages from J.  She says she has already gotten her ready for bed and everything was fine.

I nonetheless call J.  She miraculously picks up.  (She often doesn’t.)  She is clearly frustrated about something.  She says it’s in her hand. “Is it the remote?” I ask.  “No.”  “Is there a problem with the radio?” “No.  It’s in my hand.  I only have three.”

I have no idea what she is talking about, and I am getting upset.  I’m 2,000 miles away and I feel powerless.  One of the caregivers who took J on outings when she lived at home is getting together with J the next day.  I text E and explain that J needs something, but I don’t know what.  I ask her to investigate.

E texts the next day and says J greeted her with, “I have a problem.”  J showed E her dresser drawer and that she only had three Depends (even though I left her with a large supply.)  J said to E, “A lot more!”  So E made a CVS stop and all was well — except that I had spent an agitated evening because I thought I needed to swoop in and save the day.

So what is the lesson from this scenario?  I have to accept that I am not J’s full-time caretaker anymore.  I have entrusted her to a community I fully vetted, and I can’t fix everything.  One of the joys of living at the CCR for J is that she has greater control than she did at home.  I have to let her learn to solve her problems, which she obviously would have done without me if I had been able to trust her.  It’s a lot like having children and letting them go.

Many of my friends and family said the transition from home to continuing care would be harder for me than for J.  They are right.  Like so much in life, it is a process.