The mom I used to have

 Caregivers are forced to let go of a loved one little by little, again and again, sometimes over a span of many years.” — Leeza Gibbons, Take Your Oxygen First

Crafted from fine cotton yarn, the black cardigan sweater became a staple in my spring wardrobe after my mother bought it for me 10 years ago. Rediscovering it in the back of my closet last week, I suddenly recalled a happier memory of Mom – a time when I wasnt overwhelmed by what social workers describe as “caregiver burnout.”

closet2

And then came an unexpected flood of tears.

Its not like me to fall apart over a sweater while Im reorganizing my closet. Usually, I welcome the chance to shove my winter-weary woolens back into storage and replace them with the lighter fabrics of spring.

But then again, my mother hasnt been herself for several seasons, either.

Things began to unravel after my son left for college — just when my husband and I earned the freedom of our newly emptied nest.

First, we noticed Mom was repeating her favorite stories more often than usual. Then her friends would call to report that she’d forgotten to show up for club meetings and lunch dates. She’d drive herself to the ER during her panic attacks, which started occurring with alarming frequency. Not long afterward, her doctors told me to confiscate her car keys.

Mom was 79 and had been widowed for 16 years when she was officially diagnosed with vascular dementia in 2009. She was also battling heart disease and severe hearing loss.

Her only child, I was handed full responsibility of her medical care along with a checklist outlining her worrisome diagnosis.

“Start researching senior housing with memory care – now — so youll have choices,” her primary care physician advised. The doctor also asked if I had durable power of attorney (which I did) and reminded me to get all the legal documents in order.

At the time, Mom lived alone in a condo near my house. She refused to consider any type of senior housing, regardless of the fact that she’d been in and out of William Beaumont Hospital half a dozen times, and averaged 45 medical visits annually for countless illnesses, real and imaginary. (I took her to every single one.)

Facing the reality

More than anything, I wish my mother would have helped map the course of her own future. But no matter how tactfully I approached the topic of assisted living — and offered to schedule tours of the best facilities — shed look at me as if Id asked her to move to the Outer Hebrides with nothing but a toothbrush.

Regardless, I researched several senior housing options on my own. And just as the doctors had predicted, the decision was made for us — after yet another trip to the ER with Mom in December of 2011.

The research Id done earlier made our next step a little easier. While my mother recovered from heart surgery at the hospital, my husband and I put a deposit on a studio apartment at an assisted living residence near our home. We moved her there the day she was released from rehab.

By this time, Mom’s dementia had progressed to the point where she couldn’t remember that she’d had surgery and spent weeks in the hospital. I tried to preserve her dignity while sugar-coating the progressive dementia issue. I reminded her that her health and safety were our biggest concerns. Through it all,  she insisted she was “perfectly capable” of caring for herself at home.

And how could I blame her for denying reality?  Lately, I wish I could rewrite the whole scenario, too.

The grieving process 

Momand me1Saddest of all, dementia robbed Mom’s interest in almost everything she once enjoyed — Early American history, needlework, reading, lunch with friends. And clothes shopping.

In her prime, Mom had elevated bargain shopping to an art form, taking pleasure in scouting for gifts for people she loved. Even when I reached middle age, she’d insist on purchasing a new item of clothing for me whenever the seasons changed.

Which brings me back to the black sweater I mentioned at the start.

Ten years ago, Mom knew Id been hunting for such a sweater — a classic black cardigan that would bridge the seasons. I’d shopped at several stores in two malls — but with no luck. Id nearly given up when I discovered a T. J. Maxx shopping bag hanging from the side door of my house one afternoon. In it was the perfect black cotton sweater, which Mom had found on sale at one of her favorite haunts.

When I rediscovered it last month, my unexpected tears released a tsunami of mixed emotions.

Until then, Id been raging inwardly at the dementia that had devoured my mother’s mind and rendered her incapable of making her own decisions. I hadn’t fully realized that I was grieving the loss of my “real” mother — the woman who had shared her wisdom and recipes, encouraged my career, babysat my son, and took delight in buying me new clothes.

Facing the unfixable

The ongoing nightmare of dementia is hard to explain to others who haven’t walked through this dark tunnel with a parent or a spouse. Whether you’re talking about Alzheimer’s disease or vascular dementia, helping a loved one with a memory loss disorder isn’t the same as nursing a heart condition or a broken limb.

“With memory loss disorders, there is no comfort to be found in hoping for future recovery or improvement,” writes Leeza Gibbons in Take Your Oxygen First, an excellent guide to caring for a loved one with memory loss.

“If we don’t grieve for what we have lost, we can’t experience what we have now,” Gibbons goes on to explain. “In the end, life isn’t about choosing what happens to us; we only get to choose how to respond to it.”

As I write this, Mom is in a nursing rehab facility after fracturing her back at her assisted living residence last month. Her team of physical therapists can’t determine, at this point, if she’ll learn how to walk again. She is twice as fearful and confused. I do my best to remain strong for her, though I’m often exhausted, hopeless, and resentful — and ashamed for feeling that way, too.

In my better moments, I learn everything I can about my mother’s health problems and advocate for her 24/7. I’ve also learned to guard my own health — and my time — knowing that I’m not the only one who depends on both.

Meanwhile, the black sweater serves as an emblem of my mother’s best years; a tangible reminder of her former self. But I doubt that I’ll wear it again. It doesn’t wrap around me as well as it did when Mom first gave it to me — as if to remind me that I’m not the same woman I was 10 years ago. — Cindy La Ferle

For tips on dealing with caregiver stress from the Mayo Clinic, click here

Birthday blues

Growing old is mandatory; growing up is optional.”  ~Chili Davis

Doug and I just returned from a long birthday weekend in St. Joe. To be perfectly honest, my birthday (Saturday) felt a bit sad this time around, as if someone had let the air out of all the party balloons.

I suspect my blue mood had a lot to do with the fact that my mother totally forgot my birthday again this year. Of course, I’m not surprised. Mom’s dementia has progressed to the point where she no longer looks at the calendar I gave her, nor does she care what day or month it is. She still remembers her own birth date when hospital staffers ask her for it, but she can’t keep track of holidays and other special events — even when we write them down to remind her.

Not so long ago, before vascular dementia consumed her former, thoughtful self, my mother would call to schedule my birthday dinners at least a week in advance. And she’d always treat me to something special on a shopping trip we’d take together. Though I’ve learned how to deal with a new and difficult version of my mother, last week I found myself battling the same waves of grief I experienced on my birthday following my father’s death in the summer of 1992.

Watching our parents turn ill (or die) is a grim reminder of our own mortality — not exactly the frosting anyone would choose for her proverbial birthday cake.

It didn’t help that August 4th was blistering hot in St. Joe. And just before we left for dinner that night, a huge turkey vulture swooped down to perch in a poplar tree behind our house. It seemed like an awful omen of some kind. (Another vicious year ahead? Or am I reading too much Alice Hoffman?) Topping it off, a violent storm erupted while we were driving to a local restaurant for my birthday dinner.

Thankfully, my dark mood lifted with the brighter weather on Sunday. Doug and I spent a memorable evening on a gorgeous Lake Michigan beach, then rode the Silver Beach carousel after a casual dinner in St. Joe. (I chose the horse representing Michigan State, my alma mater.) Riding the carousel with my dear husband made me feel like a kid again, which is quite a feat, given that I just turned 58 years old.

Taking a long walk back to the car, the two of us watched the sunset on the beach. The majesty of Lake Michigan — my favorite lake in the world — reminded me that my problems are relatively small; that my mother’s dementia is part of a midlife journey that many others have traveled before me. Blessed with an incredibly patient and loving husband, I know I can handle any rough water ahead. And so turns another year. — Cindy La Ferle

Top photo: The sun begins to set on Lake Michigan in St. Joe. Bottom photo: Doug walks the beach.