Tag Archives: caregivers

‘Motherhood: All love begins and ends there’

I just saw a friend at the dog park whose mother died about two weeks ago. I had seen the news on Facebook. Instinctively I greeted her with a warm, wordless hug, the one that says, “I’ve been there. I understand.” The greeting that has become all too common among women in later middle age.

Like my mother — who died on September 24, 2015 — this woman’s mom had suffered from Alzheimer’s disease. We commiserated over the reality that our mothers had not been themselves for years. “I have to go back to 2011 or even 2010 to remember when Mom was really Mom,” I told her.

And for a moment it was back, the wistful sadness I have held at bay for 13 months. As I looked at Jill’s tight smile and moist eyes, as I listened to her describe crawling into bed with her dying mother — allowing her mother one last chance to be a mom — I felt my stomach drop and my throat catch. I wanted to see my mother one last time.

Is this grief? I can’t tell you. I don’t know how to grieve. All I have done since she died is to keep busy, keep moving forward.

“Grief can be exhausting or a relief,” says a handout from the hospice whose nurses cared for my mother in her final days. A bereavement coordinator sent a large refrigerator magnet that I stuck in a pile of papers. It reminds me, now 13 months later, to:

  • Take some walks: Check. I walk to work.
  • Stick to a routine: Check. I’m a creature of habit.
  • Create soothing bedtime rituals: Check. I go to sleep at night listening to music or a podcast.
  • Do some activities you enjoy: Check. I’ve been practicing yoga more often since Mom died, and my husband and I rescued a wildly affectionate puppy at the Animal Humane Society 10 days after her funeral.
  • Expect a wide range of emotions. OK, but what if I can’t find them?

I have dreamed once about my mother in the year-plus since she died; she was old and gaunt, and she had cancer. Maybe my guilt was speaking to me. I was relieved — and shocked, and sad, and scared — when she was diagnosed with blood cancer a mere four weeks before she died. For her, it was a release from the indignity of her decline. For me, it was the end of having to watch it.

My younger son, Nate, recently asked for the code to my iPhone. I told him it was the date of Mom’s death. He paused and turned to look at me. Nate is a truth teller, and I cherish our feisty and fearless conversations. “Do you think you would cope with this better if the code was her birthday instead?” he asked.

Good question, though I never did respond. First, I have to think about what mourning means.

mom-scattering

One year after our mother died on a windy autumn night, my brother posted a photo on Facebook of himself and Mom. They look young, happy and vigorously alive. “We need happy memories today,” I responded. But in truth, I cannot access them.

My memories of Mom are either grim or morbidly amusing, like this anecdote I jotted down in August 2012, six months after we learned she had Alzheimer’s: My brother consulted a colleague whose mother-in-law has advanced Alzheimer’s. The woman told my brother that obsessions are common at this early stage. We should be grateful that our mother is obsessing about her checkbook, she said — even though it drives us crazy. Her relative became obsessed with constipation, and talked people into giving her laxatives and prunes daily. “I laughed, too,” my brother said as I tried to choke back my guffaws. “But my colleague’s father-in-law had to clean up the bathroom every day.”

My friend Janey, who was like a daughter to my mom, recounted the details of caring for a frail, 91-year-old parent only weeks before her own mother died. I was reminded of the daily schedule, the frequent phone calls, the sense of helplessness, the constant worry.

Now, all I have left of my mother is photos and the purposeful distribution of her possessions. “It’s so unreal,” I wrote a former colleague whose mother died recently. “The person who has loved you unconditionally, who’s known you literally all your life, who was your greatest cheerleader and supporter — suddenly she’s gone!”

I sift through notes, the abstract musings that I can’t seem to stitch into a cohesive whole. None of them are dated, which accurately reflects the confusion and unreality of the three and a half years when Mom gradually slipped away and then suddenly, traumatically left us, gasping for air, bone thin and incoherent in a morphine haze.

Here is where I can start to pinpoint my version of the stages of grief:

  • Reflection: “As my mother goes blank behind the eyes — as the light of her intellect dims — I am thinking about my role as a caregiver and about how it didn’t end when my children were grown. I never dreamed that I would have to care for her.”
  • Resentment: “My aunt died in her sleep in June, with no apparent warning. Hard as I know that was for my three cousins, I envy the simplicity, the lack of ambiguity. When will this be over?”
  • Resignation: “In all the years of dealing with my mother’s weaknesses and neediness, I’ve never thought about how much I needed her.”
  • Regret: “I’d like to do it all over again, without the whirlwind and the fear. I’d like to be more present for her dying.”

I didn’t want to lose my mother, but it was time for her to die. I still wrestle with that potent mixture of regret and sheer relief.

“It’s a complicated grief,” says the minister who performed Mom’s funeral service last October, “because dementia is an incremental death. She was both here and gone. You experienced her physical presence but her psychological absence. There’s no possibility of closure or resolution.”

My companion and my confidante, my caregiver and then my charge, my mother was present for every significant moment in my life. I have to live with the reality that I was often at my worst with her.

Maybe, in the end, that is where grief leads us, toward perspective and acceptance, seeing our loved ones and ourselves as perfectly human, imperfect people. “Yes, Mother,” wrote Alice Walker. “I can see you are flawed. You have not hidden it. That is your greatest gift to me.”

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Elder-care duties call us to seek the best inside ourselves

I’d heard the news about women and memory loss by the time my sister sent her foreboding e-mail — “a little scary, sisters” — with a link to a story headlined: “Women Descend into Alzheimer’s at Twice the Speed of Men.”

One in six women has a chance of getting Alzheimer’s by age 65, compared with one in 11 men. I recognize that truth every time I count the female heads at our mother’s memory care building.

What is less in the news — but ever-present in the lives of thousands of Baby Boomers, the majority also women — is the stress of caring for a loved one with Alzheimer’s.

I’ve been my mother’s primary caretaker since February 2012, when she was diagnosed with the disease. I get the 6 a.m. phone call when she refuses to take her shower. I press the doctor about why he prescribed an anti-depressant without consulting me. I clean the toilet and the sink every time I visit.

These chapters of my life are writing themselves as I rush through them. Unlike my journal, I rarely linger long enough to reflect on how I really feel. All I can hope is that my sons observe the constancy and discipline, and that, one day, they will do the same for me.

Chapter 1: The Professional Caregiver

I joined 40 other scared, sad middle-aged people at a talk in late April by Charles Schoenfeld, a Wisconsin-based author who retired from truck driving and studied to become a certified nurse assistant in dementia wards.

“Human kindness can often reach where medicine and textbooks cannot,” said Schoenfeld, the only man in his CNA classes. “It takes a special person to work in these facilities.”

We daughters and sons or spouses and partners were invited that evening by a physicians’ group that services upscale memory-care facilities. But 800,000 people in the United States who have dementia live alone, without benefit of the long-term-care insurance that allows my mother to reside in a well-appointed place with daily activities, on-site nursing care and an aide-to-patient ratio of 8:1.

The cost of $5,500 a month will drain her financial resources and exhaust her insurance within five years. At that point, if she’s still living, county assistance will kick in.

“So, what do low-income people do who have Alzheimer’s or dementia?” I asked Schoenfeld, adding that every resident but one at my mother’s home is white and all of the aides are people of color, many of them first-generation immigrants.

“That’s a head-scratcher,” he said, clearly not expecting this twist at a white-table-cloth dinner hosted at a country club. Next question?

Chapter 2: Caregiving and Work

It would be dramatic, and inaccurate, to say I downsized my career a year ago solely to care for my mother. It is absolutely true, however, that a non-management job — and the 15 hours a week it nets me — makes my time with her more possible and more pleasant.Audrie Gage_06.15

Now that Mom can no longer shop or talk politics or converse on the phone, I focus on what we can do. I wash and style her hair when I visit. I attend and sometimes lead the seated exercise class — and tear up when the residents close by singing multiple verses, from memory, of “You Are My Sunshine.”

Mom has lost 12 pounds in six months as the disease has claimed her appetite and sense of taste. I sit with her at mealtime and urge her to eat. I bring her candy bars and sugared coffees from the Caribou nearby.

I’m grateful for those moments when my maternal instincts take over, when I sit beside her on the bed and rub her shoulders or stroke her cheek. When I am thinking less about my loss than her own. And I do it all unquestioningly and mostly without complaint. I take the responsibility as seriously as I did my duties to my children.

“Working at home,” “on vacation” and “sick child” are among the dozen or so descriptive magnets on the check-out board at work. Not one of them says “elder care” or “Alzheimer’s” or “gone to see my mother while some shell of her is left.”

Work-life balance is still defined as moms with kids.

Chapter 3: Caregiver Support Group

The first time I heard about the caregivers’ support group at The Alton Memory Care, where my mother lives, I pictured the group therapy sessions on The Bob Newhart Show of the 1970s. Kooks and cranks sitting awkwardly in a circle while a droll, befuddled expert tried to lead them back to mental health.

The image amused me till I recognized the kook and crank inside myself — and felt my resistance and resentment at having to sit around that table.

Two weeks ago a woman named Julie dominated the conversation. Her mom was just diagnosed at age 86, and Julie wanted to know every fact and facet about Alzheimer’s:Alzheimers word cloud

  • How many stages are there? (“Most experts say seven.”)
  • What’s the difference between Alzheimer’s and dementia? (“The former is a subset of the latter.”)
  • How is Lewy bodies dementia different from Alzheimer’s? (She had me there.)

“What does it matter?” I finally asked her, as kindly as I could. “You won’t be able to predict the course of this disease. Your mother will have good days and bad days. Every time you see her will be different.”

Our group leader steered us back to the strengths of people who have dementia. They live in the moment, observe non-verbal cues, always appreciate music and experience a range of emotions.

I note the absence of emotion every time I leave Mom’s building. I turn off the car radio and drive home stony-faced, in silence, seeking the distance between myself and the inevitable.