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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 the

Divine Mercy Chaplet a

nd th

e 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 th

e 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

this day.

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

. Visit

for more information.


amily matters

the story of a wife



By Jane B. Sweeney