Are You My Mother?

IMG_1612This photo was taken in October 2013, the last time I saw my mother. She looks just like herself, doesn’t she? That’s because I had just washed and styled her hair for her. (Although Dad had been reminding her to take showers, I’m not sure if or with what she’d been washing her hair.) I also picked out her outfit and helped her put it on in the right order. (She’d put on the wool cardigan without a blouse under it.)

I look like myself, too, if a bit red-nosed and puffy eyed. You see, I’d been crying. We’d just taken Mom on a tour of the assisted living wing, “The Hearth,” where she would be moving next week. I had willed myself to be strong and cheerful, but as soon as I walked through the door the tears brimmed up and over and would not stop. I wasn’t upset by my immediate surroundings. Rather, I was crying backwards, for my godmother Millie who died of Alzheimer’s in 2007, and forward, for my mother, whose Alzheimer’s guaranteed her the same fate.

The last time I visited Millie, she was in the assisted living wing of Whitney Center, sitting vacantly in a wheelchair. I had expected that she wouldn’t recognize me, but I thought she would still greet me with a jaunty, “Oh, hello!” Instead, she was utterly absent. Here, physically, was Millie. Yet she was gone.

At the time of this photo, Mom wasn’t gone yet. She still had her sweet, cheerful, anxiously do-gooding personality. She still recognized me. Speaking coherent sentences was difficult, as was comprehending anything but simple, concrete sentences. But she could still apprehend and communicate feelings: though her facts were often wrong, the emotions were true. Given how disoriented she was in time and space, however, I wasn’t sure she understood that she’d be moving to the Hearth—permanently and without Dad. But she knew that something was up, and she had mixed feelings about it. “I just want to make sure I can leave if I don’t like it,” she said in a jarring moment of clarity. “You’ll like it, Mom,” I replied evasively, more hopeful than confident, “You won’t be lonely here, and you and Dad can enjoy each other’s company again, without so much stress.”

Entering the Hearth with Mom felt like the first step in letting her go. Now, two months later, I feel like I’ve lost her because her new home has terrible cell phone reception and no WiFi. Cell phone service no longer matters: we’re past the point where we can communicate meaningfully by phone. But sitting face to face via Skype, I feel like I can still connect with Mom. No matter how garbled the words, we can still see each other’s expressions, gestures, and emotions. This will change, of course. The last time I Skyped with her, Mom told me I looked different. Meaning: I don’t look familiar to her. Meaning: soon she won’t recognize me.

“Gone” is the language we use to describe the effects of Alzheimer’s. After a bad patch, when Mom didn’t recognize Dad—thought he was the gardener, though we never had a gardener—he cried and said, “she’s really gone.” Then, on an another day, “she was almost like herself again.” But the following day, she chose to stay and finish watching a movie with her new companions, rather than joining him for their ritual glass of sherry. Was she turning down an invitation from her husband of 50 years, or from a strange man who, in that moment, she did not recognize? And if she didn’t recognize him, was it Mom who turned down the invitation, or someone else? Was Mom “gone” again? Will she reappear? When will she resurface for the last time?

These unanswerable questions suggest the inadequacy of our language, both for dealing with Alzheimer’s and for embracing the complexity of selfhood. Alzheimer’s is a disease that, in attacking the brain rather than the body, destroys what we think of as the essence of the self. How much of ourselves resides in memories of our life experiences and in our ability to recognize the people we love? If I can’t remember my life, my lover, or even my own name, am I still myself? If I’m “gone,” but my body still breathes, eats, and sleeps, who has that body become?

This fear of losing the self rests on a false understanding of selfhood as something bounded and constant, rather than permeable and changing. David Hilfiker, who writes a blog reflecting on his own Alzheimer’s, draws attention to this common misunderstanding of selfhood in Western culture:

Buddhist teachings remind us that there is no constant “self.”  (See my “Letting Go of Self.”)  The Western idea that our self stays the same throughout our life just isn’t very accurate.  In fact, our self changes continuously and dramatically throughout our life.  The Buddhist teachings point out that clinging to any particular self-image is sure to bring suffering because the self will not fit the desired image forever.  Let it go!

We change throughout our lives, in mind and body. Twenty years ago, I was not a mother or a professor, now I am both, and someday I will stop being a professor, but keep being a mother. My fear of heights has gotten worse, and my fear of embarrassing myself has lessened, though I’ve had plenty of practice with both. And I used to love chocolate, but hate wine and coffee; now, fortunately, I love them all. Have I mentioned my grey hair?

We are always changing, and Alzheimer’s accelerates the rate of change, rendering it more palpable and volatile. Other degenerative diseases have similar effects, diminishing the capacity of the body rather than of the mind. When a person with ALS wakes up one day and can’t move his arms or legs, we don’t say, “he’s gone.” So when my Mom wakes up one day and can’t recognize me, I won’t say, “she’s gone.”  I will know she’s changed, and so have I.

But the immeasurable ways in which we have changed each other—molded each other’s selves through the impressions (including the bumps and bruises) we’ve left upon each other along the way—cannot be undone. I like to think that, even when she can no longer recognize me, Mom is still carrying me with her, if only in her muscle memory. And I’ll carry her with me for as for as long as I can remember her and as long as my heart beats.

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Comments

13 Responses to “Are You My Mother?”

  1. Michelle says:

    Sorry to hear about this…..very touching…..you will be in my thoughts and prayers as you continue this journey….

  2. Kim says:

    this is so touching and beautifully written. It makes me stop and appreciate the mom I have right now. Thank you for sharing.

  3. Gretchen says:

    You brought tears to my eyes. My mother died from Alzheimer’s in 2007, spending a few years in assisted living. She seemed happy and stayed ‘busy’ as her memories of family faded. She was always delighted to have visitors and I think she knew we were important in her life, although unsure who we were.

    Your mother’s love will always be with you.

    Thank you

  4. Pat Millen says:

    Suzanne, we have recently started down this road with my father. The road seems steep and out of control right now. The Dept. of Transportation would not allow this road to be built. Your sentiments are lovely. I see my brother, sister and me latching on to all the advice and insight you and others with similar experiences can offer.

  5. Sue Toumazou says:

    Dear Suzanne
    I just read this and have tears in my eyes. My father has Alzheimer’s and is very close to the stage where your dear mother is. It is heart breaking and my dad lives far away and the phone just doesn’t cut it anymore as far as communicating with him goes. My dad’s mother had it, and his brother. I hate that Dad has this and can’t enjoy the things he used to love to do. Now he spends days working his crossword puzzle that usually has not even one word completed at the end of the day. He is lucky only in the sense that he can still be in his own home as his wife takes care of him but that will not be forever. As it was with my grandmother I know I am saying the long goodbye and one of these times on the phone he will not remember who I am. I just feel that somewhere, deep inside them, they love us and know we will always love them.

  6. KM says:

    Thank you, Suzanne, for using your gift with words to help so many process this painful and confusing journey. Your essays are just more evidence that you carry Valerie with you, especially the part of her that focused on doing good in the world. Much love, KM

  7. Debbie says:

    Suzanne I’m so sorry about your mom. My mom had Alzheimer’s and I can identify clearly with everything you wrote… I could have written this piece myself, our experiences are eerily similar. It’s very frightening for families of dementia sufferers when the disease really starts to take hold. How do you hold on to the person who is still present physically but not mentally? My mom passed away this year, but I know I will carry her with me and within me until I see her again. Your piece is beautifully written.

  8. Cindy Rice says:

    Suzanne, thank you. I have described my father, who has some unknown but frightening form of dementia, as a shell of himself. Your insight that he is still “himself” although different, gives me something to ponder. This journey is painful for all those who love someone with dementia, but we do not travel it alone. It is good to know that at least.

  9. Vivi and Chris Woodman says:

    We are sending so much love and emotional support across the miles. Please remember that we are one phone call away. We love you and our family so much.

  10. Amy Love Klett says:

    Suzanne – this is as beautiful as it is sad. I suspect you will help many others who are struggling through the same feelings with your ability to put your feelings into words so articulately. I am sorry for your losses….even though we can acknowledge the inevitability of change…it still really hurts. Thank you for sharing.

  11. Jaletta Desmond says:

    Suzanne,

    So beautifully written from the heart and the mind…touching, revealing…AND informative and enlightening. The quote about the Western sense of self provided brilliant insight for any stage in life, really…but especially those times when one is out of sorts or suffering.

    Your transparency will be a comfort and encouragement to many.

    Thank you for sharing this.
    Jaletta

  12. Lou O'Brien Berl says:

    Suzanne, words cannot describe the emotions I am experiencing having read this. Your writing is beautiful, poignant, raw. I wish you love and hope as you process all you are thinking and experiencing. Know you are helping others process as well. With love, Lou

  13. Sylvia Schnople says:

    Suzanne, thank you for sharing your journey with us. I, like you, have a mother who has recently entered an assisted living facility. My mother was always a strong willed, curious and highly intelligent woman who would be mortified if she knew that she had Alzheimer’s. As her daughters, my sisters and I try to bring back the “old” mother…while we are reminded by those around us to accept the woman she has become. It’s hard, but we try. Instead of correcting her when she talks about living in Paris (which she didn’t) or walking across the Golden Gate bridge (ditto), instead of correcting her…we go along with her. In her world, she has lived a most exciting life! In our world, we tuck away those memories of our normal lives shared with this woman and try to enjoy her for where she is or isn’t in the present. It is the most difficult journey imaginable. Thank you for sharing. Sylvia

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