started seeing the signs years before the diagnoses.
This brilliant man, the love of my life, had begun
acting peculiarly. This man who had worked as
an accountant at the World Bank — who was always
meticulous, always organized — could no longer
even balance a checkbook. He started forgetting
conversations. He turned suspicious about everyone
and everything. He once hid my purse in the dryer
for fear someone would steal the money.
This was not the man we all knew and adored. He
was ill. That much was clear.
We met for the first time before Mass one morning.
Our priest introduced us. We married in 1983. We both
had teenagers from previous marriages, five children in
all. We called ourselves a “blended family.” He was a
Knight of Columbus. Upon his retirement in 1986, we
traveled together. We played golf. We battled at check-
ers. We loved Irish music. And we joyfully watched as
our number of grandchildren increased to 13.
Now here he was — my Bernie — barely 72 years
old and his cognitive functioning deteriorating. In
2009, we had our explanation. He was diagnosed with
Alzheimer’s. Two years later, he was diagnosed with
Lewy Body dementia and Parkinson’s. Our lives were
turned inside out. I would come to know that dementia
is a “family disease.” That is to say, it affects everyone,
emotionally. His disease was terminal. There was no
turning back. It was an intruder. It moved in on us. We
knew it would write its own end.
All the while, we leaned on our faith. God gave me
the grace to know the depth of his love for me and the
depth of the love I had for my husband. Through my
tears, I came to understand God’s plan for Bernie and
me. God would remind us of our mortality and how our
real home is with him in eternity where there is no pain
and no disease.
In the meantime, brick by brick, I was determined to
build a life here on earth that sought to fulfill my role
as a spouse. This “intruder” was bent on separating
Bernie and me, tearing us apart, but I wouldn’t allow
it. Our bricks would be our faith. The work to assemble
these bricks consisted of prayer and care — praying theDivine Mercy Chaplet a
nd the Rosary,
and caring for
this man to whom I vowed my life in sickness and in
health. Our mortar was an ever-binding love.
Upon his diagnosis, I began studying the lives of the saints
and soon discovered examples of faith amidst
calamity. I began to go to daily Mass. I studied practical
guides on how to spiritually
and physically care for loved ones dying
from a cognitive disease. Sharing such information
would become a ministry of mine that I continue to
The world is filled with people who experience a similar
situation to mine — of witnessing a loved one dying. And
as we all soon figure out, we have to engage in two seem-
ingly contradictory things: preserving the bond we have
with our loved ones while also preparing to let them go.
Let me share how I chose to handle it. I would touch
him more gently and not have him see me cry. I would
tell him how much I loved him, how the family loved
him, and how very grateful we were for him. I would
laugh with him. I would pray with him, each day giving
the Lord thanks for our life, our love, and our family.
Of course, I never wanted to let him go for even a
moment. But for all of us who have traveled this path
— whether caring for an ill child, parent, or spouse —
we do get pulled into the darkness of sorrow. We some-
times walk in fearful solitude along hospital corridors.
This journey, however, must be one of hope. We must
pay tribute to our love by reaching for consolation in
our faith and seeking to comfort those around us.
Bernie died in 2012. I was with him when he drew
his last breath.
He was a beautiful man. In his life and in his death,
he showed me how to cry, how to laugh, how to love,
how to live, and how to feel good.
Jane B. Sweeney of Fort Myers, Florida, is the author
Caregiver: My Love Story — Facing Dementia
for more information.
the story of a wife
DO US PART
By Jane B. Sweeney