Thursday, December 3, 2015

Loving Till It Hurts: Women, Dementia, & Caregiving

During what turned out to be our last phone conversation, my Guideposts editor, Phyllis Hobe, talked about a book that she wanted to write: it was going to be based on her own experience as a caregiver to her stepfather, and she wanted to call it Loving Till It Hurts. She died before she had a chance to write a single word. That title haunted me, however. This is my small tribute to one of the best editors I ever worked with.

                                   *************************************

Dementia, my oldest brother once said, robs you of your personality. We had ample proof of that in the three-and-a-half years that the disease sucked away our mother’s personality, leaving her a stranger both to us and to herself. The most poignant image I have is of Mom sitting in her chair during her last holiday with us, holding gifts that she ordinarily would’ve delighted in – a pretty pink-and-white afghan, a stained-glass bluebird – and just staring us, her beautiful brown eyes completely blank.

For Rebecca Penarroya Blanchette, her mother’s dementia meant trading places with her. “I was feeding her,” she says. “I was changing her diaper. It was like a 48-hour work day.” When Blanchette came home from work, she would change her mom and brush her teeth before she even thought about starting supper.

Then there was the financial burden. “You’re not prepared for it,” Blanchette says. “They can live one year to twenty years. Every person is different.” The only silver – well, pewter – lining in the scenario was that her mother knew her most of the time. “I adored my mom. I am an only child. To see her slip away into dementia was devastating. She was good at everything.”

“The truth is, there is no knowing,” observes Carol Child, who writes under the pseudonym Samantha Mozart. “Every situation is different, and every moment within that situation is different: expect the unexpected.”

There’s a reason I start with three stories/quotes from a female perspective. Caregiving is, of course, largely a women’s issue, though some men do take on the role. “Yes, it’s a cultural thing,” agrees Patty O’Brian, the North Central Regional Director of the Alzheimer’s Association, Connecticut Chapter. “It goes back to roles in the family, roles in the community. Specifically in the Latino culture, it’s the female that takes on the role – it could be a daughter, a daughter-in-law, or a granddaughter.”

Most of the caregivers I’ve known over the years have been female. In fact, three out of five unpaid caregivers are women; 2.5 more women than men provide 24-hour care for someone with Alzheimer’s. And 20 per cent of the women caregivers with jobs have gone from working full-time to working part-time because of those caregiving duties.

“Within our complex system of long-term care, women’s caregiving is essential in providing a backbone of support,” maintains the Family Caregiver Alliance. “In fact, the value of the informal care that women provide ranges from $148 billion to $188 billion annually. Women provide the majority of informal care to spouses, parents, parents-in-law, friends and neighbors, and they play many roles while caregiving—hands-on health provider, care manager, friend, companion, surrogate decision-maker and advocate.”

In other words, we’re playing that same caretaker role that women played in earlier times. And the cost is very high, as the Alliance points out. Aside from the physical and emotional toll, caregiving “places a further strain on the precarious nature of many women’s retirement income, particularly since time out of the workforce does not only have short-term financial consequences. For most women, fewer contributions to pensions, Social Security and other retirement savings vehicles are the result of reduced hours on the job or fewer years in the workforce.”

“Anyone who has been a caregiver knows that no matter how much help you have, when you are in the middle of it, you are alone,” writes Mozart/Child in Begins the Night Music: A Dementia Caregiver’s Journal; “you feel guilty for not doing better – and you wonder if this moment, this hour, these hours will ever end, if you’ll ever get out; and when you do, then what?” Mozart’s book – and its sequel, To What Green Altar – should be required reading for all caregivers. She writes about a world peopled by health aides who don’t show up on time and doctors, hospice workers, and agencies with red tape coming out their ears, the better not to hear you with. About what it’s like watching her mother “gradually shutting down” and how she feels as though she’s “shooting in the dark, often blindsided and with the strength of a jellyfish.”

“One of the things we always repeat during our caregiving seminars and support group is that it’s O.K. to ask for help,” says Elizabeth Marquis, the director of marketing at McLean in Simsbury.

It’s important, too, she adds, to acknowledge that a loss has occurred, even though your loved one is still physically present. “With that dynamic, you can feel sad. You can feel the loss of that relationship. It’s O. K. to pause and notice how this change has impacted your life.”

It’s easy to forget all that when you’re in the trenches. And it’s even easier to let go of friends and activities you enjoy. But they’re precisely what caregivers need to hold on to most.

“It’s those relationships and those things you like to do that sustain you through the process of caregiving and beyond,” Marquis insists. “They sustain and support you and can provide balance and well-being.”

Connecticut now has a statewide respite care program, courtesy of O’Brian’s organization, the Area Agencies on Aging, and the Connecticut State Department on Aging. This program “offers relief to stressed caregivers by providing information, support, the development of an appropriate plan of care, and services for the individual with Alzheimer’s disease or related dementias.” (Remember, dementia is, as the Alzheimer’s Society in the United Kingdom points out, “an umbrella term....[and t]here are many different types of dementia although some are far more common than others.”)

Under the Connecticut program’s guidelines, you, the caregiver, can go the traditional route and obtain said services through agencies. Or you may hire a companion/aide of your own choosing. Either way, there is a maximum of $7,500 in services available on a yearly basis, subject to an Agency on Aging Care Manager’s approval. The individual you’re caring for may also receive a yearly maximum of 30 days of out-of-home respite care services. (This does not, however, include adult day care, which is a godsend to many caregivers.)

You need a doctor’s written statement that yes, said individual does have dementia. And then there are the finances. You have to show that the applicant/patient has income of $44,591 or less and liquid assets of $118,549 or less. Income includes Social Security (minus the Medicare Part B premiums); Supplemental security income; Railroad retirement Income; veterans’ benefits; and any other one-time or recurring payments. Liquid assets include checking and savings accounts; stocks and bonds; IRAS and certificates of deposit; and any other holdings that you can convert into cash.

Last, but not least, a co-payment of 20% of the cost of services is required unless the Care Manager decides to waive it on account of financial hardship. So, this is not necessarily “easy money.”

Caregiving may be a women’s issue, but so, unfortunately, is dementia. Nearly two-thirds of the 3.2 million people suffering from Alzheimer’s are female. Women in their 60s are twice as likely to develop Alzheimer’s as they are breast cancer. “Once a woman hits 60, the figures really change in regard to breast cancer and dementia,” observes O’Brian. “At age 65, women without Alzheimer’s have a one-in-six chance of developing Alzheimer’s; for men, it’s one in eleven.”

Alzheimer’s is considered the sixth leading cause of death in this country, ”but we should be higher,” she adds. “We still have a lot of questions and not a lot of answers. We still have a long ways to go.” For instance, nearly of quarter of men and women mistakenly believe that “Alzheimer’s must run in your family. But everyone is at risk. This is not a disease that discriminates.” And yet Alzheimer’s research is significantly underfunded compared to other diseases.

So caregivers slog on the best they can. On a personal level, you can’t help wondering where the person is that you knew so well. Occasionally, you see firefly glimmers of that old self.  "It is difficult to watch a loved one’s life slowly slipping away,” observes Mozart/Child. “[I]t is hard to know what goes on in the mind of a dementia patient – other than ‘movie trailers’ of seeking lost loves, of being lost and trying to find the subway and the way home.”

Blanchette has her own response to what has been called “the Alzheimer’s crisis”: a silver bracelet that she has designed in her mother’s memory. Twenty per cent of the proceeds go toward Alzheimer’s research. It’s a very simple bracelet with a single rectangular charm that reads, “Dementia, find a cure one bracelet at a time.”



-- Alzheimer’s Helpline. (Lines are open 24/7). 1-800-272-3900.

-- For more information on the Connecticut Statewide Respite Program, call 1-800-994-9422 to be connected with the Area Agency on Aging representative nearest to you.

-- Rebecca Penarroya Blanchette’s bracelets can be purchased at http://www.puramente.jewelry.com.

-- Samantha Mozart’s books can be purchased on Amazon.com.

Friday, November 13, 2015

A Fine and Friendly Place


                 The grave’s a fine and private place,
                  But none, I think, do there embrace.
                      -- Andrew Marvell, “To His Coy Mistress”


Or maybe they do. In Peter S. Beagle’s novel A Fine and Private Place, two ghosts – Michael Morgan, a possible suicide, and Laura Durand, a shy bookstore clerk – fall in love. They cannot move beyond the confines of the cemetery, and their posthumous romance will only last as long as they can remember life, love, each other...and themselves. Once they forget these things, they will quietly fade away, remembered only by a talking raven and a bankrupt pharmacist who has been living in the cemetery for almost 20 years.

When I was a kid, my dad used to sometimes drop me off at the old library on Saturday afternoons. After a few hours of rummaging through the books, I’d go outside and sit on one of the marble benches, waiting for him. The town cemetery was right next door. I was always tempted to go exploring there – the old gravestones fascinated me – but never did.

Not till many years later, that is. I was working on my novel A Time for Shadows: parts of it were set in Simsbury, and I wanted to use Antoinette Eno Woods, a prominent figure in town, and her nephew, conservationist Gifford Pinchot, as minor characters. So my son Zeke and I drove over to the cemetery and wandered about the older section, where Woods is buried. That section is situated on a gently sloping hill, and her mausoleum is right at the top. As I stood there, gazing down at the main street and the brick and redstone buildings, I was struck by how little it had all changed since my days of hanging out at the library. It was like one of those antique tinted postcards come to life….

Still much later, I walked through both the old and new —well, newer --sections of the cemetery. My husband Tim is in the former; the latter is the final resting place of many familiar souls, people I either knew or heard my parents speak of while I was growing up.

But maybe “resting place” is the wrong term. To me, they speak; and as I wander among the headstones, bits of conversation, funny and colorful, come to me, making me smile or laugh. I hear Betty, my friend Kathy’s mom, roaring when she walked into the bathroom and discovered that their puppy had chewed her dentures: “Who’s the congenital idiot who let the dog in here?” And there’s my mom’s old friend Cora, one of my very best favorite people. Cora had a very distinctive voice: she was also extremely blunt. One day, my mother and I stopped to see her at the local department store where she worked. Coral smiled at us and, as usual, cut directly to the chase. “I made the mistake of saying hello to your brother-in-law this morning,” she informed Mom. “My God, he is the most boring man alive!” Another time, she was telling us about when she broke her ankle years earlier: she turned to my mother and said, “And your husband said, ‘If you were a horse, we’d shoot you --!’ I could’ve killed him.”

(She actually thought very highly of my dad. Just not at that moment.)

I have a few relatives buried here, too. One aunt – “Ol’ Porkpie-Hat,” Tim always called her -- I was not particularly fond of, but she made for great stories. Like the time she turned to Dad’s best friend, Al, and said, “That was when your wife left you. You remember when your wife left you, Al?”

And just as clearly, I hear my late sister-in-law’s voice: “Of course, he’s going to remember it! He might rise above it, but he’s not gonna forget it!”

Along with the voices come a slew of memory-pictures. My father’s grammar-school teacher is buried here. She was over 100 when she died, and I remember Dad bringing me to see her after my Bat Mitzvah: he brought her the flowers from the bimah (the podium where the Torah is read), too, and talked gently with her for awhile. I stop at the graves of Amos and Pearl George. Amos was the caretaker at the McLean Game Refuge, and I remember how he used to poke fun at Mom for the red poncho she always brought with her to work on. (Mom was a whiz with all sorts of needlework, but it took her forever to finish that poncho.) Pearl was a sweet lady, and I visited her  when I was doing an article at her convalescent home. I didn’t do the flowers thing, but I did bring her a cat picture because Mom had told me how much Pearl was missing her cat.

Cora’s son, who predeceased her, is here, too. I remember the funeral, which was a military one, and how Cora held the folded flag close to her chest, like a child clutching a teddy bear.

A few summers ago, I went to the cemetery with my friend Cel, who wanted to visit her mother’s grave before she moved down South. I figured I’d go look up Cora, as I’d been to her funeral service but not to the internment. It took me awhile, but I found her, buried next to her husband, Pete. There was an elegant little cat carved on the stone. It was very Cora.

Cel and I paid Tim a visit, too. We talked about a lot of things, including the fact that her father (who remarried long ago) was going to give her the plot next to her mom’s.

“Oh, good,” I said. “Tim and I’ll float over and visit you.”

It’s really quite a little township, the center cemetery. And when I walk here, I think that both Marvell and Beagle got it wrong. This graveyard’s a fine and friendly place, and these ghosts aren’t about to fade away any time soon. For me, they are just as quirky and vivid as they were in this life. It’s The Spoon River Anthology but with a much less mournful twist.

Friday, August 7, 2015

Janie

(I had a sister-in-law who was very much the big sister I had always wanted.  She died young, but something of her lingered in her garden. This is for her. 5/19/54 -8/16/83.)

Sweetpeas you planted
          ten years ago --
their petals butterfly-shaped
          rose-pink, almost magenta --
keep their color
long into the fall,
their poetry
dulling the pale-purple chives
          and star-blossomed sage
          to prose.
Their leaves and stalks,
joined like an antique doll’s
                   hands,
reach their twisted fingers
          out of the dark earth.
You -- your eyes, your laugh,
          your lightning-bursts of temper --
have gone to ashes
but your sweetpeas keep
you before me,
          a memory I can touch.
Ground could not hold you,
          a spirit too restless
                    to be stilled.

Tuesday, May 19, 2015

The Unseen Traveler

(From The Way-Back Files:  Until We Meet Again.  Guideposts, 2003.)


The rain that early July Tuesday had been monsoon-like, forcing me to pull over to the side of the road at one point during my travels. By 7:15 p. m., it had stopped, but the roads were still dangerously slick. I’d just gotten off the phone with my husband, Tim, and could tell from his voice that the swing shift he’d worked the night before had finally started catching up with him. “You sound like you need to be off the road,” I’d remarked, telling him to skip the trip to the store he’d been about to make.

“I really want to be home,” he’d said just before signing off.

A funny queasiness took hold of me shortly afterwards. I wandered restlessly about the house, then headed up to our three-year-old son Zeke’s room and began reading to him. I happened to look up at one point and went even sicker inside. The walls of the room began pulsing, the colors in the wallpaper draining away.

A few hours later, my in-laws came to tell me that Tim’s van had crashed into a telephone pole, killing him instantly. The time of death was 7:31. (“I can’t say for sure,” a friend said later when I told her the wallpaper story, “but I’ll bet you that’s when Tim died.”)

Pain set in, followed by an eerie numbness, a winter of the soul like nothing I’d ever known before. I made the funeral arrangements, picked out the monument, gave away many of Tim’s belongings, and probated the will, hoping that once these things were done, I would somehow come back to life. I was a ghost wandering through a lonely dark wood, searching desperately for a clearing, some space between the branches that a ray of light could pierce through.

Two weeks after Tim died, I came back from running some errands and went up to my room to lie down. I couldn’t sleep, so I figured I’d just rest a bit in the cool shadowy room while my mother took care of Zeke downstairs.

Suddenly, out of nowhere, a white-gold light appeared to the left of the headboard. It hung in mid-air, glowing like a flame and deepening in intensity as I gazed into the heart of it. The light flickered and danced before my eyes, then slowly…ever so slowly…faded away.

I sat up, amazed. The room, as I’ve said, was a shadowy one, thanks to the huge oak tree shading the window directly across from the bed: in the past, I’d hung crystals in that window in vain attempts to work a little rainbow magic. There was no prism in the window now, only an enormous aloe plant snaking its arms against the pains…and, anyway, a prism would’ve cast its rainbows against the walls, ceiling, and floor. It wouldn’t have conjured up that firefly flame that hung suspended in the air, beckoning and reassuring me….

The June after Tim died, Zeke and I traveled to Prince Edward Island. It was the vacation that Tim and I had planned for the three of us to take for what would have been our tenth anniversary. It was a tough trip on my own with a four-year-old, and Zeke was homesick. So I cut the vacation short and drove the rental car to Charlottetown the day before our re-scheduled flight. We stopped at the airport first to confirm the flight changes. The woman at the counter was genuinely charming and helpful, waiving the change fee. “Now,” she said brightly, looking up at me, “there’s a third person traveling with you?”

I did a double-take – after all, it was 1996, and surely a single parent traveling alone with a child shouldn’t be that much of a novelty – but explained the circumstances. The woman shivered. “That gives me the willies,” she admitted, as she directed us to a motel close to the airport.

I found it easily enough. The woman who ran it was just as friendly, and we chatted lightly as I filled out the necessary paperwork. “There’s a third person traveling with you?” she asked suddenly.

I guessed there was – an unseen traveler who wanted to make sure that we were all right and had landed in a good place.




Sunday, March 22, 2015

Fitz's Robin

(From The Way-Back Files:  Eternal Moments. Guideposts, 2004.)

I picked up the wooden robin. Perched on a piece of driftwood, it was simply and beautifully carved with a friendly, inquisitive face. “Where’d you get this?” I asked admiringly.

Fitz chuckled. “Oh, Fran Snow, an old friend of mine, and I have this contest about who sees the first robin. So she sent this to me.”

Fitz – her real name was Dorothy, but she loathed it, preferring the abbreviated form of her maiden name – wasn’t a blood relative. She was my late husband Tim’s maternal grandmother. But from the beginning, I’d felt a kinship with her. A private, reserved soul, she shared my love of books and gardening…though she had her reservations about cats, having given her heart over just once to a feline named Brutus, who’d broken it when he died. Still, she admitted that my cats were “pretty” and that she enjoyed looking at pictures of them.

We had some similar tastes in literature. Supernatural stories, for instance. “You know, I’ve always been fascinated by vampires,” she told me once with something between a lilt and a chuckle in her voice after reading a vampire yarn I’d just written. And she listened attentively to the otherworldly experiences that I was weaving into my novel Souleiado. “No foolin’,” she’d say. Her blue-green eyes – Tim’s color exactly – larger and more luminous than ever. Whether or not she believed them, she, like I, had an ear for a good story.

After Tim and his mother, Bobbie, died within a year-and-a-half of each other, I began visiting Fitz at her condo on a weekly basis, often bringing my son, Zeke, with me. Mostly, however, I came by myself while Zeke was in school. Fitz, knowing that I was stopping by, would leave the door ajar for me. Sometimes I’d find her asleep in her big chair. So I’d sit down from her and, pulling out my quilting, work on it till she woke up. Then we’d visit with each other for an hour, our silence as comfy as the scraps of old fabric in my quilt and interwoven with reminiscences and the latest Zeke bulletins.

I’d share my writing news with her, too, of course. She followed my novel Souleiado’s progress along with great enthusiasm, telling me that she thought the prologue was “truly inspired.” I wrote my acknowledgements page out ahead of time, with a special mention of her and sat there quietly while she read it. She looked up at me, wide-eyed. “You do me too much honor,” she said.

She was always incredibly generous with what she laughingly called her “interesting clutter” – the hodgepodge of knickknacks and curios she’d brought with her when she’d closed up her old house in Springfield, Massachusetts. “If you see anything you want,” she’d say, “please ask me. I may say, ‘No, you can’t have it,’ but ask me.”

So, on one of my visits, I finally asked her for the robin whose upturned face had intrigued me from the beginning. And Fitz, with the graciousness that was as much a part of her as those large expressive eyes, gave it to me. Now, despite my fondness for bird-watching, I never had any luck when it came to spotting the first robin. Everybody else always saw it before I did. But I put Fitz’s robin on the table across from my bed so that I could see it first thing every morning.

About a month after her ninety-first birthday, Fitz finally gave up the fight. On my last visit, I stayed barely ten minutes: she was in terrible pain and had precious little energy left. “I’m so glad to have been part of your writing,” she told me, reaching up to stroke my hair, her blue-green eyes shimmering.

I smiled at her through my tears. “I’m only sorry I couldn’t finish my book for you,” I replied, referring to Souleiado.

She gave me messages for Zeke and my mother, whom she’d been very fond of. Then she smiled at me, and I could see something of the vibrant young woman she’d been. “I think you’re wonderful.”

I gave her smile for smile. “I think it’s always been a mutual admiration society.” I rose from her bedside and forced the next words out, knowing that she would understand. “I won’t be back unless you need me.” I bent down and cupping her pointed face in my hands, kissed her good-bye.

A little over a week later, she was dead. At the simple memorial service, her daughter, Caroline, read the opening lines from the 121st Psalm, which had, she said, been Fitz’s favorite:

“I will life up mine eyes to the hills. From whence does my help come? My help comes from the LORD, who made heaven and earth.”

I was surprised and moved. Fitz had been something of an agnostic, and we had never really discussed religion. It had certainly never occurred to me that there might be a psalm that had held special meaning for her.

And when Zeke and I arrived home, the funniest most perfect thing happened. Two or three robins were strutting about our yard against the backdrop of Avon Mountain. No foolin’.