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 independence.  

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 dark night.   

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 disease. 

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’ prayers.  

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 yours. 

Jeanette Muller was raised on a dairy farm in NE Iowa and did biology and botany for 15 years out west before moving back to take care of her mom.  Writing, friends, hiking, cross-country skiing and prayer all help her cope. 

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