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

Extreme self-care

Over-giving is often a sign of deprivation — a signal that a need isn’t being met, an emotion isn’t being expressed, or a void isn’t getting filled.” — Cheryl Richardson

I’m finally starting to shake the sense that I’ve been wandering through a dream this season. Managing my mother’s ever-changing healthcare needs — while gearing up for Nate’s late September wedding — felt surreal at times.

If I wasn’t driving Mom to the oral surgeon or the pacemaker clinic (or tracking down a pair of shoes she could wear to the wedding), I was reviewing menus for the rehearsal dinner or writing names on place cards in calligraphy.

Not that I’m complaining. The wedding was absolutely beautiful — and I’m still savoring memories of the highlights, including a dance to a favorite Roxy Music tune with Nate at the reception.

Most important of all, I’ve come to realize that guiding an elderly parent through her final years while helping a son launch a new life of his own are inevitable steps in the ongoing circle-dance of life. Needless to add, I’m blessed to have a freelance schedule that gives me the flexibility to step up when others need me.

But as Cheryl Richardson points out in her newest guide, The Art of Extreme Self-Care, it’s easy to lose oneself in the service of others. If you’re a caretaker, a professional caregiver, a people-pleaser, a mom with kids at home, or anyone else who puts the needs of others first, you know what Richardson is talking about. And I hope you’ll make time to read her book. It’s been a life changer (and a game changer) for me, and I’m very grateful that I stumbled on it while doing some research for a column on “caregiver burnout” earlier this summer.

Richardson used to be a woman who couldn’t say no. To anyone. She taught seminars and workshops, mentored clients, volunteered for organizations, and “supported needy friends who were struggling.” She was often exhausted and had little time left for her marriage. “I was a good girl. I was so used to playing the role of caretaker that it had become a normal way of life,” she writes.

Richardson’s life coach challenged her to make some changes. Encouraging her to “desensitize” her fear of stirring conflict and letting people down, he suggested that she practice “disappointing” someone every day. As soon as I read that, it made my palms sweat. Like Richardson, I’ve often said “yes” when I should have said “no” — even when I knew I didn’t have the time or my heart wasn’t in it. All because I hate to disappoint people.

It’s not easy to break out of this pattern. As Richardson notes, “One of the harsh realities about practicing Extreme Self-Care is that you must learn to manage the anxiety that arises when other people are disappointed, angry, or hurt. And they will be.”

When you stop worrying about what others think, you’re changing the “rules of the game,” she warns. Some of the folks who claim they can always count on you will play the guilt card when you dare to admit that you’re too tired to help, or that you can’t change your schedule to accommodate them.

Yesterday I finally visited Dr. Paul Ehrmann, my family doctor, for a complete physical. After driving my mother to every medical specialist in Oakland County on a monthly basis for the past four years, it felt a little odd to focus on my own healthcare, my own needs. It hit me, while the technician hooked me up for my EKG, that I knew less about the general state of my own health than I do about my mother’s. (I’ll get test results Monday.) And when Dr. Paul began my exam with the words, “Cindy, this time is about you — not about your mom or Nate’s wedding,” I nearly dissolved into tears.

“If you want to live a meaningful life that also makes a difference in the lives of others, you need to make a difference in your own life first,” Richardson reminds us. “When we care for ourselves deeply and deliberately, we naturally begin to care for others — our families, our friends, and the world — in a healthier, more effective way.”

So … what have you done for yourself lately, my friend? — CL

— Top illustration: A detail from “Renaissance Woman,” an altered book by Cindy La Ferle. Bottom photo: Cheryl Richardson (Hay House) —

 

 

Update on Mom

The human spirit is stronger than anything that can happen to it.”  ~C.C. Scott

First, a big thank you to all who’ve inquired about my mom. It really means a lot to know that she’s remembered in your thoughts and prayers, and I always pass along your messages to her.

Secondly, I apologize for not being a very good blog buddy or Facebook friend recently. Like 3D friendships, online connections should be reciprocal. But with so much going on, I haven’t kept up with friends as often as I’d like. Once things settle, I hope to change that.

Right now, Mom is in healing mode. Her pacemaker was inserted on Monday and the surgical wound looks good. The challenge for the next few weeks, in addition to rebuilding her strength after the heart failure, will be to keep her from moving her left arm too much. (It’s essential to prevent the pacemaker from being dislodged or disconnected while the tissue around it heals into place.)  This week, she’s recovering at Woodward Hills nursing center, an affiliate of William Beaumont Hospital. It’s her third time at this facility in the past 10 years, so she settled in without much fuss after Doug and I drove her there from the hospital yesterday.

If all goes well, Mom will be ready for discharge from Woodward Hills later next week. Right now, everyone is monitoring her carefully to determine if she’ll be able to care for herself again in the long run. Once she’s home, I’ll be staying with her through her recovery, working closely with a team of home-care nurses and a physical therapist. And there will be several field trips to the cardiologist as well as to the doctor who keeps the pacemaker ticking.

Meanwhile, Mom’s memory loss remains a big concern, especially since she was terribly confused during her long stay at the hospital. Crossing my fingers, I’m hoping she’ll adjust to her new heart medications and gain emotional as well as physical strength during therapy. One day at a time.

I’d be lying if I told you I was anything but pooped out and fried. But I’m fortunate to have a husband who’s right there with me at every hospital visit, and who doesn’t seem to mind hanging out in medical waiting rooms. I’m darned lucky, too, to have so many friends who care. — CL