Abstract:
Tom Allen, a care partner for his wife, Julie, shares his story about how he learned to support her in living well with dementia, how he needed to be the best version of himself, learn and grow as they went, and trust the choices he might need to make for both of them. Also, Tom needed to support Julie in finding purpose and meaning, keep their values at the forefront as they made decisions, and join Julie in her reality. Tom’s experience serves as an example for other care partners and care providers as they learn to support the person with dementia to live well.
Key Words:
Alzheimer’s, dementia, caregiving, caregiver
My spouse Julie was diagnosed 12 years ago at age 57 with Alzheimer’s disease. She has lived in memory care for the past seven years. She is now in hospice. It has been my honor and challenge to be her caregiver. These are my thoughts about what Julie needed from me as her caregiver for us to live well with this disease.
Julie needed me to be the best version of myself.
One weekend I left Julie in the care of relatives. I had completed the Christmas shopping and wrapping. Upon my return, I could not find the gifts. I asked Julie, “Where are the Christmas gifts?” She said, “What Christmas gifts?” Eventually I found them. The next day, we went through the same routine again. Julie could sense my frustration, even though she could not understand why.
Julie was my teacher in life about how to go with the flow. The need for me to live that way increased exponentially with her diagnosis. It called upon me to experience my impatience and frustration without having to judge, fix, or suppress it. Nor could I expect her to change.
We did not choose Alzheimer’s. It chose us. We both ended up choosing it back so it could be life giving, and yet we knew that Julie was going to die from this. Thinking of it as a battle was pointless. What we could hope for was that the disease would bring out the best in both of us. And it has.
Alzheimer’s and Julie became my teachers and spiritual practice. Every day, I asked myself, “Am I a healthier version of myself? Have I kept myself fully defined apart from Julie, and yet interdependent?
Have I been fully present to my own suffering and limitations?” I found it helpful to talk to Alzheimer’s as an embodied person and say, “You have a hold on us. But I am not letting you go until you bless us.”
A sense of humor became essential. In the earliest stages, I would use Julie’s memory loss against her, and she knew it. I would try to convince her that it had been months since we have been physically intimate. Julie would reply, “You know, there are certain parts of a woman’s brain that know the truth, no matter what.”
Julie needed me to learn and grow as we went.
We had the opportunity to go to Florida. The trip was filled with joy. We went to the beach. We went to see the home where she grew up. But I knew that if I left her alone she would have no idea where she was or how to find her way back home.
When we went to Disney World, she went into the women’s restroom. She came out without her purse. We went back together to look for it and couldn’t find it. We found it later at the park entrance. The joy of this trip was constantly accompanied by sorrow at seeing the woman that I loved decline. Joy and sorrow became companions.
‘Alzheimer’s and Julie became my teachers and spiritual practice.’
Gratitude for small things became an important practice. Moments when, unsolicited, someone chose to help us—moments of laughter—moments of intimate conversation, a good meal, or hearing music from our past. Hope often came from knowing I could count on these things, when I could not count on Julie getting better.
I also learned to embrace the “positive” and the “negative”—to trust that it all belonged. Sometimes that has been hard. These days, Julie seldom opens her eyes and barely responds to my presence. I am no longer sure she knows me. I hold her hand as I imagine her doing the internal work of moving on, assuming that my presence is contributing.
Ambiguity is always present. Julie is still the same person in some ways, but in many ways she is no longer here. She is still my wife, and yet, she is no longer my marriage partner. Embracing “both/and” is critical.
Julie needed to know she could trust me to make choices for both of us when she could no longer participate.
Julie developed seizures, sometimes twice a day. She was doing things that seemed dangerous. I had reached the limit of my capacity as a caregiver, and felt it might be time to move her into memory care. I had spent the previous year looking at different facilities. She chose not to participate in the search. She knew that placement was inevitable, but she didn’t know when.
I had volunteered at a group home that I thought might be the best choice and ultimately made that commitment. This was the hardest decision that I have ever had to make. Some of our relatives did not agree that it was yet time to do this.
The move did not go well. Julie accused the staff of stealing money. She tried to jump out of a second floor window. She thought the staff worked for her and gave one of them a raise and fired another. A consulting therapist explained that Julie had had a psychotic break. She eventually adjusted. I wondered whether I had made the right decision.
‘I learned to trust my inner voice, even when others around me disagreed.’
Eventually, Julie needed a higher level of care. Moving her into long term memory care seemed the wisest option. I had heard horror stories about the difficulty of moving someone in mid-stages of memory loss to accommodate new surroundings.
Through these difficult choices, I learned to trust my inner voice, even when others around me disagreed. I wanted to make choices from the right place, beyond my ego, avoiding choices driven by fear, anger, my need for control, to be liked, or for my financial security.
Julie needed me to support her in finding purpose and meaning.
Julie had had to retire from her work. But, once we had a diagnosis, she was “all in.”
She quickly became engaged with the Alzheimer’s Association. She helped make phone calls to those newly diagnosed to help them know that life would go on. She began speaking publicly, including the closing keynote at a gathering of 800 people and at various events nationally and internationally.
She helped form a choir for persons with the diagnosis and their caregivers. She participated in a day program that included singing in a choir, which performed in nursing homes.
When we needed to bring in additional outside help into our living space, I was told by the person that we hired that she liked supporting Julie, because Julie listened well to her and helped her resolve some of her own family issues.
Julie needed me to ensure that we kept our values straight in our decision making.
Early on, we had conversations about our values. We put a premium on time together and minimizing other tasks.
Despite the advice of our attorney to own a home for asset protection reasons, we chose to look for an independent senior apartment. I also decided to leave my full-time job. In the apartment to which we moved, I went to work as a part-time janitor, which made it possible for me to check on Julie during the day.
Julie needed me to lean into reality—let go as reality required—and let come whatever was next.
Our entire marriage had been built on honest communication and trust. I needed to have conversations with others about her condition when she wasn’t there. That felt so unfaithful. I needed to engage in therapeutic fibbing. Using logic no longer worked. Nor did arguing to correct her misperceptions.
For the first few years, we did everything Alzheimer’s-related together. Eventually, I realized that she was going to her death alone and I could not go with her. I could be an important part of her life but her path was different.
She contracted COVID and pneumonia and survived both. Both times, I was preparing myself psychologically and emotionally to lose her. I am now ready for her to go, and even wish for her sake and mine that it will be sooner rather than later. It is time for the suffering to end.
Life has required me to embrace the reality of what was, not the way I wanted things to be. I had to lean in, let go, and let come whatever was next, trusting that life would go on.
Tom Allen serves as a caregiver to his wife, Julie, and as a spiritual director at Loyola Spirituality Center in St Paul, MN. He has been the executive director of a nonprofit that provided spiritual care to those who find themselves on the margins of society, a corporate executive and a self-employed organization development consultant.
Photo: Tom Allen and his wife Julie making lunch.
Photo credit: Courtesy Tom Allen
