Hi Blog Readers, I want to
share this journal article with you. I usually do not post an entire article,
but this one requires an exception. It is a profound and moving first-person
account of the blessings and challenges of Tom Allen, who cares for his wife
who has Alzheimer’s Disease. Tom doesn't take the role of martyr or victim. Rather, Tom sees his caregiving role as an opportunity for personal growth and deeper spirituality. It is raw and funny. Get a tissue. AgeDoc
Living Well as an Alzheimer’s
Caregiver
By Tom Allen
Reprinted from Generations Journal,
April 2023, A publication of the American Society on Aging
https://generations.asaging.org/living-well-alzheimers-caregiver
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
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