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

12 thoughts on “Love — and love”

  1. My wife and I moved into a continuing care retirement community in 2010 because she was diagnosed with Alzheimer’s disease. I cared for her in our independent living apartment with some home care help until early 2015 when her advanced Alzheimer’s required that she move to the memory unit in our building for full time professional care. During the last year or so of my full time caregiver role my link to sanity was a daily email exchange with a good friend who was a widow and who helped with Fran’s care to give me some needed breaks. After my wife moved to the memory unit, the platonic email exchanges with my friend became face to face conversations that blossomed into a romantic relationship. We made no attempt to hide our relationship and were accepted by all in our community including people I expected to disapprove. A comment by a person I expected to disapprove was that people who have not lived in our shoes should not pass judgement. After a year, my friend and I gave up our separate apartments and moved in together in a larger apartment in our retirement community. I think the fact that we were open about our relationship from the outset and did not try to hide how happy we are together contributed to the uncritical acceptance of our new relationship by our friends, families and acquaintances. Neither my new partner nor I were willing to hide who we were and how we felt because we were unwilling to give the impression to others that we thought we were doing something we should feel guilty about. I continue to visit my wife every day to sit with her and hold her hand. She has lost all cognitive and communication capability and most motor control. She is unable to feed herself and is dependent on others for all care, including diaper changes. She cannot stand or sit up by herself and depends on others to transfer her from bed to wheelchair and prop her with pillows so she doesn’t fall over. She spends most of her time sleeping. On a rare good day, I get a smile, but no sense that she recognizes who I am or what our loving relationship once was. I am blessed to have good memories of a long-time loving relationship with my wife, to be living in a present loving relationship that gives me great happiness, and to have understanding and acceptance by those around us.

    Liked by 1 person

    1. Ed, Thanks so much for sharing your experience. My heart goes out to you. As you know, you have been an inspiration to me, and I appreciate your continued kindness. Love, Alzwife

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  2. I’m also happy for you! As someone in an incredibly similar situation (my J has been in assisted living for 4 months now), I have very little to no interest in starting a new relationship- I’m jut trying to process what I’ve been through in the last 7 years and the toll it’s taken on me. Trying to get back to the person I was, with the addition of my new-found wisdom (for lack of a better word)
    But I celebrate your new chance at love! You deserve it. Mazel Tov!!!

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  3. Thank you so Much for sharing!! I am in a similar situation, only about 2 years behind you. My wife will most likely be in memory care by the end of the year (waiting list); and I have struggled with this very topic. It’s even hard to share about it in a support group for the fear of judgement factor. I love my spouse and will always take care of her but I miss the intimacy of a partner.
    Again, thank you and I’m happy for you. I hope to meet you and P. someday

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  4. I’m so touched by your story, dear old friend, and am rooting for all three of you — J., P., and you. From my vantage point, you’re handling your situation with dignity, grace and courage. I admire that you’ve managed to find blessings in what would otherwise be rather discouraging, sad circumstances. Please know that I’m sending you and your whole family unqualified love and support. You’re a true champ, A., and I continue to be honored to call you my friend!

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