Mom and the Alzheimer’s Journey
Just when you get enlightened, they call it Alzheimers. ~Byron Katie
A couple a years ago I was driving through the Swedish country side on my way to visit my mom and sister in my old home town Orebro. It was the first time I would visit my mom in the dementia care facility where she now lived. The fall colors were just starting to explode in the Swedish forests, it was raining from a grey sky, it was cool, it was moist, it was cozy; it was wonderful manna for my Swedish soul who have lived in the California heat for a several decades. I was humming a tune from an old Swedish song when the phone rang.
My sisters familiar voice, with the home town accent in my ear; we chit chatted about some practical details and then she said: “You know you can’t carry on a normal conversation with mom anymore. She has lost pretty much all her short-term memory. She may not recognize you.”
I knew mom had Alzheimers, I knew she was in a special dementia care facility but the reality of it sank in as I heard my sisters’ words. It was an oddly unsettling feeling to consider that mom, the woman who gave birth to me, who had been a constant my whole life, my roots, would not recognize me anymore. I felt sadness, anxiety, grief and a sense of loss. If mom didn’t know who I was anymore, what was the point of visiting? Did I even have a “mom” anymore?
Grateful to have another hour in the car to work through my fears I did some inquiry. I listened to the sad thoughts in my mind and picked the one that summed it all up:
“I need mom to remember me.”
-Is that true? YES, said my sad little girl.
-Can you absolutely know that you need mom to remember you? As I let the question sink in a NO came. The NO came from realizing that I didn’t know what the experience would be like with mom and Alzheimers, maybe something new and even better would be present, something more fulfilling than “remembering” an identity?
-How do you react, what happens, when you believe the thought: I need mom to remember me?
Sad, worried, scared. There is a sense that I have lost something, that I won’t get to receive love and support from my mom. I see images of my mom as a sad, lost figure in a lonely place. I feel lonely.
-Who would you be without the thought?
Open. Not knowing. Grateful that my mom is still alive and that I am blessed to be able to come visit. Feeling my love for my mom and looking forward to sharing it with her.
I turned the thought around:
“I don’t need mom to remember me.”
I am OK in this moment without my mother’s recognition, so I’ll be fine in those future moments too without it. I have a heart full of love that I can share regardless of what my mom remembers. I just need to be present and open to learning new things, I don’t need anything from my mom.
“I need to remember myself”
Yes, I know who I am, I remember myself, I don’t need my mom for that. As I walk in the doors of the care facility I need to stay within my own center of love and remember that that is who I am.
“I need me to remember mom.” That turnaround really hit home! Yes, I needed to remember mom, the person, the soul, the woman who she still was. I was going to visit my mom, not to visit Alzheimers. Instead of walking in there and seeing the disease and “how bad it has gotten” I needed to remember mom, the person, the wise woman who had lived a full life.
I realized I had been too focused on Alzheimers, and my list of meanings that came with that diagnosis.
My mom has Alzheimers and that means:
I have lost my mom. She won’t recognize me. My mom is lost, helpless and have no quality of life. It’s going to get worse. She will die an awful, slow death. No one can reach her anymore….etc.
It is never the disease diagnosis that depresses us, it is the list of meanings we attach to the diagnosis that cause our stress, pain and fear. I have cancer and that means….you hear that sad, fearful litany of the mind. Each thought brings images of the worst possible future outcome and you scare yourself to death in that moment. The fight/flight response kicks in with some adrenaline and now the fears really seem true! Pausing the mind and questioning it breaks that negative loop and brings you back into the moment. Back into the heart, your essence, where you can meet even cancer or Alzheimers with love. Open to learn and finding new solutions.
As it turned out my mom did remember me. As I walked into the dining room of the dementia care facility for the first time, my mom looked at me and said: Hej Lena! (my family nick name) as if I had just gone to the store for a few minutes. We had a wonderful visit. I was so glad I could walk in there and see her with presence, remember my mom, and not see Alzheimers. We had some hilarious conversations since she didn’t remember from one minute to the next what we just spoken about. And you had to watch how much coffee she drank, because as long as the pot was on the table she would keep drinking since she didn’t remember how many cups she had had.
We shared a few wonderful days of visits, putting some All Souls Day candles on dad’s grave and just hanging out talking about nothing and everything in a divinely, circular fashion. Instead of having a conversation that went from A to B to C; a “normal” conversation that started at one point and had some kind of order and then an ending. This was so much more fun. I had the best time ever with my mom. Her sense of humor was still intact. She shared love more freely than she ever had; she hugged me so much and so long. Before Alzheimers my mom had not been comfortable with physical affection.
This year I returned to visit mom, bringing my sweetheart with me. My sisters’ reports said, “it has gotten worse.” I could see my mom’s physical body had shrunk up a bit more, she was in a wheel chair now since she had a hard time walking and keeping her balance. I gently sat down by the side of her wheel chair and said: Hi mom. Mom lit up and said: Hej Lena, I am so happy you came!
This time mom was not trying to keep up a conversation anymore. She had moved closer towards her center of stillness, a quiet peace emanated from her. It was wonderful to just share presence with her. Both Hubert and I fell in love with her and her new way of being. We took some strolls around the gardens, admiring flowers, picking some red wine berries, watching birds. We sat in her room, massaging her feet, giving her hands-on-healing and just sitting in a wonderful stillness together. She kept twirling her hands, so I inserted my hand into hers and she massaged my hands so sweetly. (Something she never has done before.) Then she would have a moment of realizing there was one more hand in her hands, her eyes would follow the arm, my arm, attached to the hand up to my face and our eyes would meet in a deep, silent, loving gaze and she would give me a huge, happy smile. She was radiating love. I could have sat there for an eternity, there was no need to have a conversation or to “remember” anything. Who would you be without your stories, your ego (your memory)? A presence of love. We were sitting at the feet of the guru.
Mom showed me that even if the mind is losing some capacity, we can still remember how to love, how to show affection, how to truly see a soul. Again, we shared a few wonderful days of visits with mom. Honestly, it was the most deeply beautiful time I have ever shared with her.
I cried as we left Orebro; Stockholm and other events was calling us, I wanted to stay longer to be with mom during this last beautiful stage of her life and to just be a loving presence with her. Despite whatever is going on in her mind and brain, I know she felt us there, she felt our love and affection. I miss her and genuinely long to come back. Not because it is my “duty” as good daughter but because it is a gift to me.
P.S I am aware that Alzheimers can take many more turns, that some Alzheimers patients become aggressive, paranoid and very hard to be with. I don’t mean to make light of that and make it all sound easy-peasy. And I do know when you listen to and pause the mind, question and release your own aggressive, paranoid, hard thoughts (about Alzheimer or any other disease) you open to come back to peace and your heart. Through that you can find new ways of being with, learning from and meeting Alzheimer’s patients with love.
The four questions I asked myself and the turnarounds is a process called The Work of Byron Katie, created by Byron Katie. I have been a Certified Facilitator of The Work of Byron Katie since 2012. www.thework.com
Next round of the Making Peace with Disease class starts Sep. 17. It is a 6 week online exploration in an intimate circle of truth finders where we question and release the thoughts around any kind of disease or condition, our own or a loved one’s, that cause us stress. https://lookwithininstitute.com/product/making-peace-with-disease-sep-17-oct-22/
We have come full circle, Mom.
Returning to that unconditional love we shared when I was a baby.
Now, you are the fragile one in diapers.
Me putting your shoes on; like you put mine on a thousand times.
You are resting in silent stillness, like a baby, as you pull closer to your center,
preparing for your journey into the great mystery.