As my mother nears her 98th birthday in June, the dementia that has consumed her brain is taking more and more of her away. It’s as if there’s been an invasion of a body snatcher.
My mother is, on the one hand, still there. She sounds, smells and feels the same. But increasingly, she has entered into oblivion.
In my last three visits, she didn’t know who I was – I, her son of 65 years.
In my visits these days, I try and discover where she is and what she thinks about and remembers. I’m no longer asking her if she knows who I am. She may indeed know, but I don’t think she easily remembers my name.
One of the tragedies of advancing dementia is the utter isolation that sufferers progressively experience as they move through the fog left by lost memory. It’s also difficult and painful for us who love them because we can’t help but grieve as we watch them disappear.
My mother’s world has become so very small. She had always lived an active and fully engaged life invigorated by family, friends, people, Jewish community, causes, and ideas. Then, she began to forget things. She couldn’t find the words that had once flowed so easily past her lips. She couldn’t recall the memories that made her who she was and defined her world. She didn’t know the names of the people she loved. And she couldn’t recognize anyone in the room.
My mother has always been exceptionally verbal, and though she still talks up a storm, her words are nearly impossible for me to understand, and I know her better than most people.
I’ve asked myself what is actually left, what remains of all that she was, learned and knew. Thankfully, certain things haven’t yet left her. She retains her essential sweetness, gentleness, kindness, generosity, and joy when she looks into my face and has some recognition that I’m an important and familiar person to her, but I wonder what the content of the familiarity is.
For those who suffer with dementia, it’s as if the life cycle has been reversed. They undergo a great unlearning, an unmaking of themselves, a reversion to a uncluttered brain – but this time, the mind is shutting down and not opening up.
Sometimes, nevertheless, my mother offers a pearl of wisdom. Last week she said, “We all have to love each other – for what else is there!?”
Because my mother can’t hear, can’t see and can’t walk, I sit very close to her when we interact, touch her constantly, look into her face from five or six inches away, and speak very loudly into her left ear, the better ear of the two. If I’m able to break through the fog of her confusion, she may know me, but most of the time I’m not sure that she does.
In being with people with dementia, it’s important for us to remember that when the mind goes our bodies carry powerful memories too that may remain. A mother never forgets the vibrations, smell and energy of her child, and I, her son, certainly have never forgotten my mother’s vibrations, smell and emotional presence.
After all the years, what’s left between her and me has come down to this – the purity of a love between a mother and a son. I cherish this and pray that she still does too.
Each time I leave her I kiss her and say directly into her ear: “Mom – I love you!”
“I love you too,” she always says.
I hope she knows that it’s ME who has spoken those words, and not just some stranger showing her love and kindness.
Susan Meyer said:
This is absolutely beautiful.
david kanter said:
John: Making the very sad, very loving, for all who might experience this passage in the life of someone they love.
John, I read your words this morning on the eve of my mother’s first eyar Yarzeit and I recall the pain and disbelief of the last months of her life. I believe that somewhere in the reaches of the heart the words come through and the affect reaches the Soul. I hope that is comforting in this very difficult time. The pain never leaves but the memory of all that I shared stays embodied in my heart even today! Thinking of you Lynn Greenwald
My heart and prayers are with you. My mom is going through Parkinsonism dementia–she still knows me but it is very hard to watch her fading away from us. My job is to bring some light into her life, a lot of love and touching, and memories ….take care.
Rabbi Susan Laemmle said:
This is a helpful and moving account. It reminds me of a fine Israeli film that shows on Tuesday April 23 at the Laemmle Music Hall as part of the Jewish Wisdom & Wellness festival of learning. In it, a central character who is moving into Altzheimer’s says that “she is disappearing” and this moves her to want to end her life before that happens. The film will return to the Laemmle Theatres in June for a full run, and I recommend it as a good trigger for serious discussion of end of life issues, as well as a wonderful experience with the distinctly Israeli comic-serious sensibility.
Marsha Pinson said:
What a moving understanding of the slow loss of your mother and still you see her for who she was and for what relationship you still share. And still, you hope.
My heart goes out to all of you.
Mitch Gries said:
John, Thanks you for sharing your experiences with your mother. Sounds like you are doing the best you can, getting the most out of this deterioration.
“After all the years, what’s left between her and me has come down to this – the purity of a love between a mother and a son. I cherish this and pray that she still does too.”
Very beautiful words!
I too grapple with similar experiences with my son on a day to day basis and feel that at times all there is is a love between a father and his son and pray that he does too.
Terry Heller said:
Beautiful. I am going through the same journey with my mom, although from a too-far distance. This reminds me to remember and hold precious the lovely moments. Thank you. – Terry
Rabbi John Moscowitz said:
Very poignant John
Do you know Christopher Hitchens last book, Mortality ? A collection of his pieces in Vanity Fair on his dying over a couple of years. You Might collect your pieces on your mother, do whatever ( not much ) editing is needed. Write an intro, maybe an epilogue and publish a book. Maybe it’s called ‘”Mother” Or: ” When My Mother Disappeared”
Sent from my iPhone
Martin Weiner said:
This is among the most beautiful and powerful comments I have ever read on the challenges of dementia. Thank you for sharing your loving spirit. As you may know it is a very troubling issue for Karen because of her dad’s Alzheimers.
As ever, Marty to
David Brumer said:
That’s a beautiful essay. I’m sorry your mother is going through this, but it sounds as if you’re doing the best one can with it.
Yaron Shavit said:
Dear beloved friend. Love and compassion is lots that is left. Kol Hakavod
You are a good son. God bless you and your mom.
Rabbi Heather Miller said:
Expecting my first child, I have been reading a lot about mothers and sons lately. And, this exemplifies the best of these precious relationships- when the giving of oneself is not determined based upon any kind of material reward, rather, just based upon love, honor, responsibility, care, and dedication. Jewishly, this is the concept of “Hineini”- here I am, wholly present before you. You have written a touching tribute in time for Mother’s Day 2015. Thank you for sharing.