Many overwhelmed by role of caregiver

PHOTOGRAPHER: Bethany Bump

It was lunch hour, and Debbie Lumia had just spotted a friend from church walking by the post office in downtown Albany. She stopped her to catch up and make some casual conversation.

“Violet, hi, are you on your way to lunch?” asked Lumia.

It was 30 years ago, and Violet was working at the time as an interpreter for the FBI. She looked in a hurry.

“No,” sighed Violet. Actually, she was headed home as part of her daily routine to make her mother lunch and make sure she was OK.

“Oh, that’s so nice,” Lumia remembers responding, with a big smile.

Lumia always recalled the interaction as strange because Violet had just stared at her — with no smile, without changing the topic, without saying a word. It wasn’t until last year, when Lumia became the sole caretaker of her own mother, that she realized why her friend could only stare.

“It’s not nice,” she said. “It’s not so nice at all. It’s horrible. It just hangs over you all the time. I look at the world now, and there are people who understand this and people who don’t. I didn’t understand at the time. But I’m that person now.”

Growing trend

Lumia is one of a growing number of people dealing with the emotional and physical stress of caring for another person. She spends so much time focused on her mother — preparing her food, cleaning up after her, bathing her, dressing her, making sure she takes her medicine and sleeps at night and doesn’t burn the house down — that her own health and psychological well-being are suffering. If she can get through a day without crying, well, it’s a good day.

Most Americans will be caregivers at some point in their lives, outside of typical parenting. Whether it’s caring for a parent, a disabled child or a sick spouse, nearly 44 million Americans are considered informal caregivers in any given year, according to the U.S. Department of Health and Human Services’ Office on Women’s Health. Most caregivers are middle-aged, and most are women.

It affects them emotionally, physically, professionally and financially. And yet, many are so focused on the person who needs care that they never seek help.

Lumia’s mother, Gerolene Snavely, is 92 and has dementia. It didn’t take hold of her mind until the fall of 2011, and when it did, it hit her only child like a baseball bat.

“We were sitting there putting a puzzle together one Sunday afternoon after church, and she said to me, ‘Debbie really likes to do puzzles, too,’ ” recalled Lumia, who is 64 and retired. “And I, of course, am Debbie, and it was just like having a knife go through my heart. I could only look at her.”

The lapses grew worse. She stopped recognizing her grandson. She started confusing day and night, calling her daughter at 1 or 2 a.m. to chat. The once-avid reader could no longer read her favorite books. She stopped driving and sold her car. She became easily confused, and worse, she became aggressively defensive about things.

“Some days, she will start making up stories,” said Lumia. “One day, she kept saying one of the cats was outside, and I said, ‘No, the cats are inside, they’re OK.’ And she sees it as me being defiant, and she insists that, ‘No, he’s outside.’ And it goes on and on and on.

“You never know from one minute to the next what you’re going to be dealing with. She gets up at 3 in the morning and fixes breakfast. She asks who I’m married to. She thinks I’m different people throughout the day, so that by tonight, she’ll be asking who’s coming in after me, and I will say, ‘Listen, honey, it’s me. It’s only me.’ And she just won’t believe me.”

For 12 years, Snavely lived in an independent senior housing facility in Malta, less than a mile from her daughter’s home. She had her own apartment and could use the facility’s community room, library, exercise room and laundry. When her mind started to go, Lumia hired Meals on Wheels to deliver lunch and dinner.

And then one day, Snavely forgot how to use a microwave.

Lumia applied for a spot at the 277-bed county-run nursing home in Ballston Spa and landed her mother on a waiting list. When the county began the process of selling Maplewood Manor to a private company, her mother’s condition had deteriorated to the point where even a nursing home wasn’t going to be enough.

She moved into her daughter’s home last spring. Lumia had no idea that soon the only relief she would get most days would be a quick cry in the garage. Her days became full of changing diapers, filling prescriptions, cleaning, cooking and waiting on another person hand and foot.

When she wanted to go out with her husband or go out to lunch with her son, she had to hire a sitter. A trip to the store or any other quick errand was never quick. Time to herself was unheard of.

Don’t forget self

“These people become so focused on a loved one that they are not taking care of themselves,” said Maureen Hopkins, general manager of Home Instead Senior Care’s Gansevoort office. “Even the little things — sitting down reading a magazine, going to the gym or going for a walk — they fall by the wayside.”

Home Instead Senior Care, an in-home care agency that helps keep parents, grandparents and friends in their home as they grow older, has a network of 900 franchise offices throughout the country and abroad. Their staff does everything from taking clients to the doctor, reminding them to take medications and preparing meals to grabbing a can of soup from the top shelf or tying shoelaces.

In May, the agency launched a public awareness campaign to help caregivers determine if they are at risk for distress and, if they are, to minimize any problems before they escalate. It set up a website, http://familycaregiverstressrelief.com, that offers an “Are You a Caregiver?” quiz and a “Family Caregiver Distress Assessment” tool that helps caregivers determine whether they’re at risk for emotional and physical distress — which can lead to depression, heart disease, high blood pressure, diabetes and obesity.

“So many spouses and adult children are unaware of their potential risk of caregiver distress because they don’t see themselves as caregivers,” said Nelson Carpenter, a local Home Instead Senior Care owner in the Capital Region. “These new resources enable them to understand their role, the stresses they may face as a caregiver and how that stress might lead to more-serious health effects.”

A recent study conducted by the agency showed caregivers tend to hide their emotions and, as a result, their health suffers. In fact, 74 percent of caregivers who hide their feelings reported fatigue, 53 percent reported difficulty sleeping, 37 percent reported depression and 30 percent reported weight gain or loss, the study shows.

Other studies have shown these stresses can be even greater among those caring for a family member with a cognitive impairment, such as dementia or Alzheimer’s disease, because of a symptom known as anticipatory grief. Beth Smith-Boivin, executive director of the Northeastern New York chapter of the Alzheimer’s Association, describes this as the grief felt when you have to take care of a loved one who changes into a person you no longer recognize.

“You’re living with someone that you’re losing,” she said. “When somebody no longer recognizes you or remembers you as their child or their spouse of 30 or 40 years, you can feel like you already lost that person, even though they are still here. I met today with a woman taking care of her husband of 54 years who doesn’t know her by name anymore. He calls her ‘that lady’ and it breaks her heart.”

Lumia admits to being depressed for some of the obvious reasons.

“I am not by nature domestic,” she said. “I love intellectual things and writing and thinking. Now, my entire day is cooking, dishes, laundry, blah blah blah, and I just spend so much time doing things I really don’t want to do.”

But it’s more than that, she continued. Her mother has always looked down on her, she said, in part because Snavely’s own mother looked down on her.

Growing up, Lumia was never allowed to have friends and was made to feel guilty if she didn’t spend her time with her mother doing what her mother wanted to do. As a result, Lumia spent her childhood constantly trying to please her mother and feeling she never quite could.

Adulthood was wonderful for Lumia because she could distance herself from the experience, learn and grow from it. By the time she retired, she never thought she’d have to deal with it again.

“Being with her every day now, all of this has come back again,” she said. “The easiest way to describe what this is like? It’s like living in a mental institution, a hospital and a prison all at the same time, and I am not exaggerating. If I can get through one day without crying or cursing or shouting in the garage, it’s a good day. I wake up in the morning feeling like, ‘OK, another day has started, and I can’t wait until it’s over.’ And that’s a horrible way to spend your life.”

Getting help

In cases where the caregiver had a strained relationship with the parent they are caring for before they ever became sick, health care officials recommend hiring outside help.

“Caregiving is a hard job to do for a person that you love and admire and adore, but it’s an even harder job to do for someone that you resent or have anger with,” said Smith-Boivin. “So, when an adult child has a poor relationship with a parent, we urge them not to provide the direct care to avoid further straining things.”

While the cost can be prohibitive for some, outside help can be worth it.

Home Instead Senior Care has certainly helped Lumia, sending staff to her home for a four-hour block every Tuesday and Wednesday. They play games with Snavely, make her food or take her to the park. As soon as they walk through the door, Lumia can breathe.

“I feel like a different person because I know I can sit down or go outside or start a project without her calling for me or looking for me,” she said.

For all of the pain of her childhood, her tormented mother-daughter relationship and her utter exhaustion at the end of every day, Lumia wants only the best for her mom. Her mom, whom everyone described as “such a wit” and “such a personality.” Her mom, an intelligent, athletic, funny lady. Her mom, the life of the party.

“My mother is gone,” said Lumia. “She is just a person who used to be. Every day, you just want to cry and scream.”

There are days when she questions her faith, which taught her God doesn’t give you any more than you can handle. And just when she starts to question whether that’s really true, when the unthinkable starts to creep into her mind — “Why is she still here?” — Lumia takes a step back and thinks of those worse off, those without the money or the means to take care of their parents at all, who have to live with the knowledge their parents struggle to get by on the streets, some days lucid, some days not.

These are the times when she thinks to herself, “I am very blessed.”