By Jeanette Muller
A well-traveled butterfly sun-catcher hangs in my
window. Since college, its bright red and
yellow panels have cheered me. The green
panels have faded badly, but I remember in my mind’s
eye. Change and loss are hard; so we must
remember with love and look forward with hope.
Three years ago, I moved back to NE Iowa and
became a caregiver for a parent with serious memory
loss. Mom has been a widow many years and
fiercely independent her whole life. We’d
always had a close relationship, and I called from
wherever I was working to swap stories. She’d
given wise advice and been my hero, but now needed
help. Fortunately, there has been help from
many neighbors and “angels” along the way.
Reading good books and writing also help me put
difficulties in perspective. How
daunting to be responsible for Mom and to try be
grateful in the face of slow death. The
serenity prayer: changing what we can, accepting
what we cannot change and the wisdom to know the
difference – is a tall order for few words.
Folks ask, “How’s your Mom doing?” Mostly, I answer:
“Slowing down, but in good spirits.”. I don’t tell
them that it’s the most heart-breaking challenge in
my life, but that I‘d regret not taking it on.
Some days, she doesn’t realize that she needs help,
and resists any assistance or accepts a little “to
humor” me; other times, her real vulnerability
worries me. Keeping calm and poised in the
face of oft-repeated questions may be the hardest
task. Often, I get openly frustrated or testy;
other questions just leave me sad.
Recently, I had her sign a birthday card for my
older sister and Mom wasn’t sure that she was a
blood relative. Not wishing to upset her, I simply
said, “It’s early, you’re still sleepy,” and managed
not to cry until leaving for work. Granted, we
have a large family, but she’s forgetting those not
present and recent additions. How long before
her mind fails to recognize my fiancé or me?
How well will we handle her not knowing family or
old friends as her awareness shrinks?
While at an autumn church supper with Mom, I
looked down the table. Having used up his
napkin, a frail man wiped his mouth with a paper
placemat. Most people ask for only our human touch
and occasional assistance. Some go without;
either they don’t or won’t ask, or folks don’t
realize their needs. I watched him and
several others struggling and shaking as they walked
or ate. These vulnerable elders get out of
chairs with great effort (like Mom) and look to
loved ones for support, direction or reassurance
while fighting to retain some dignity and
These now-frail people survived childhood
illnesses and the Great Depression; fought in World
War II or remember the short lives of friends and
family lost. People on the home front worked,
gathered any usable materials, wrote letters and
accepted rationing of food, tires, fuel, lumber,
etc. Their sacrifice made our lives possible.
Do “modern” people recognize and honor the courage
and perseverance of these hidden heroes?
Simple gifts and short visits make them so happy –
even the ones who may forget when you last spoke.
A friend asked me what being a parent’s caregiver
is like. “A long journey,” I replied.
Some days, the stress feels like driving a car on a
strange, icy road in fog or blowing snow. I don‘t
know the route and can’t see the road ahead.
Directional signs are difficult to read, so we must
slow down and navigate on faith. Occasionally,
stress overwhelms us and we get scared or mad at
each other or slide into the ditch. We need
help to travel on, or just a safe place to spend a
Was I led here? Perhaps. I didn’t seek to
be a caregiver, though I‘d often been Mom‘s
confidant since Dad died many years ago. My
gifts are not “helps,” “healing,” or
“administration.” Frankly, Alzheimer’s disease
scares me. But, unlike some of my siblings, I
can’t turn away and pretend she’s OK. I
must trust that God will bring us through. Do
I struggle with this? Yes, we both miss our
freedom. But the situation is also a blessing: a
chance to help a woman who served others her whole
life; and the love and laughs we share are real.
Her powerful intellect, pride and independent
nature are blessing and challenge as memory and body
decline. Some days are not bad, but more
often, her memory is as fleeting as fresh snowflakes
on a warm spring day. A bit of the essence
remains, but beautiful shapes/details melt away as
soon as they land and both of us are frustrated.
As time passes, her lows get lower and her recovery
lessens. Many times in the first two and a
half years, my faith and hope vied with anger and
depression for control in the face of a relentless
Grief and mental and physical exhaustion may
result in physical pain and can teach one to accept
help. Help that I took several months ago was
starting a low dose of medication after being
diagnosed with depression and anxiety. Overwhelming
emotional pain, and learning that 50 percent of
people caring for an elder family member suffer
depression, motivated me to finally seek treatment.
It is not a cure, but I’m calmer now, more hopeful
facing our daily adventures. We still get grumpy,
but my response to the situation has improved and
that affects Mom, too.
I feel more balanced when I take time for myself and
realize that what I do IS enough. Admitting “Mom
needs more than I can provide” means more diverse
visitors for her, more freedom for me and both of us
are healthier. Northland Agency on Aging and a
caregiver support group have given me pointers and
hope. Finding the right lady to visit Mom a few
hours a day wasn’t easy, but was worth it for the
peace of mind.
My gratitude list includes: Mom’s ability to live
at home; her joy at flowers or photos; the excellent
respite caregiver who helps us; a cousin who manages
finances; my fiancé’s generosity and humor; a summer
job in my field. Simple joys include
uplifting songs, birds at our feeder, cross-country
skiing a quiet trail, sharing a meal with friends
and a good book. Human kindness comes in many
forms: neighbors looking out for us; a stranger‘s
cheerful words or smile; a friend helping plant our
garden; a visit, note or call for Mom and friends’
Two years ago, a co-worker asked why I gave
up/postponed my career to help Mom. “Because
she needs help,” I answered. Why should we explain
doing what is “right”? I found blessings in
serving, slowing down; though some days, it’s tough
to balance even basic needs. Sharing Mom’s
life has taught me much about faith in action, daily
courage “in the trenches,” compassion and grace.
To truly live, we must be grateful on the tough days
and celebrate happy ones. Would a caterpillar stop
eating, make a chrysalis and go into what looks like
death if fear consumed it? Continuing to face
my fear and grief has not made me a butterfly, but I
am being transformed. Peace and joy to you and