Mom, 92, Shoulders Caregiver Burden

By Sharon Hill, The Windsor Star April 11, 2011 6:47 AM
WINDSOR, Ont. — Helen Watters should have moved into a retirement home years ago.

Her hearing is failing, her eyesight has dimmed. She has suffered mini-strokes and had a heart attack last year.

Yet at 92, she remains at home to care for her 68-year-old developmentally disabled son.

Now Watters fears she won’t live long enough to see her son receive the care he needs.

“Just that he’s comfortable when something happens to me,” Helen said as she held back tears.

“It’s something you worry about all the time really, more or less.”

Her son, Pat Sanford, is one of about 200 people in Windsor and Essex County and 12,000 in the province who have developmental disabilities and are on waiting lists for residential care.

Locally there are about 75 primary caregivers like Helen Watters over age 65.

More than 1,450 people over the age of 70 across Ontario are providing care to an adult child or family member, according to a survey by Community Living Ontario, a non-profit association that advocates for people with intellectual disabilities. Twenty per cent of those caregivers — about 290 people — are over the age of 80.

Gordon Kyle, director of social policy and government relations with Community Living Ontario, said making families in crisis wait for funding is “inhumane.” He said he can’t fathom the stress for the elderly caregiver.

“We have many aging families who have been supporting their sons and daughters at home and find it increasingly difficult to do so. For many of them they feel time is running out,” Kyle said. “They want to know that their government is paying attention to their needs.”

With an aging population, it seems likely the situation will grow worse.

“It’s heartbreaking,” said Bonnie Vidal, a support manager with Community Living Essex County.

Vidal said it’s important for Helen to see her son make the transition to a new home and caregiver soon.

If the Watters family had known there was no funding even for someone with such an elderly caregiver, they would have got on the waiting list sooner than a few years ago.

Last week, although Helen hated to leave her Kingsville home of 28 years, she and her son moved to an apartment in town with support services such as meals and laundry. It’s an improvement, but not what she’d hoped for.

Most of his care still falls to her, which means making sure he gets dressed, eats his meals, takes his medication and showers.

Pat would sit in his favourite chair all day if she didn’t tell him what to do, she said.

Her daughter Karen Taylor had been coming over to the house every morning to make sure her older brother woke up to attend day programs with other developmentally disabled adults. Taylor said fear followed her out the driveway when she left them, especially at night.

She approached her mom at age 88 to see if she’d move to a retirement home but she wouldn’t budge without a place for Pat. The push had really been on in the last two years after her mom turned 90.

“We just couldn’t wait any longer,” Taylor said of selling the house.

Pat can’t tell you what he’s thinking. He’ll repeat a few words and doesn’t speak in sentences. Pat seemed to be progressing normally as a baby but something went wrong. Doctors told Helen he must have suffered some head injury when he was two or 2 1/2 years old. He went to live with family for a bit and then on the doctor’s advice stayed in institutions in Orillia and Cedar Springs until he was in his late teens.

He goes to Leamington three times a week now, where he’s with other people with intellectual disabilities in a Community Living program. They do some piecemeal work for local businesses and get out for recreation. “He needs to be with people,” Taylor said.

When he comes home from Leamington, he heads straight to lean back in his chair. His grey hair shows his age but his mom’s reddish hairdo makes her look at least a decade younger than her recent 92nd birthday.

Watters, who worked at the Kingsville Dairy as a secretary for decades before doing the books for a number of Kingsville businesses into her 70s, has been taking care of her only son for almost 50 years, including 10 years on her own after her second husband died.

“By himself he’d be lost.”

Even as she spent one of the last days in her Kingsville house, she was reluctant to rip into the provincial government for her fretful wait. If she got
angry, she said, she might slam a cupboard door.

But Joyce Stover, who has a son with Down syndrome, doesn’t hold back her frustration.

“I’m appalled,” the 60-year old Windsor woman said. “We live in a country that has so much. For somebody to be at the age of 92 taking care of a disabled child is a shame. That’s a shame for us as a people.”

Stover became more of a fighter for herself and her son when she was diagnosed with breast cancer in May 2007. She’s endured a double mastectomy, chemotherapy and a divorce in the last few years. She survived the cancer but tires more easily now.

She takes care of her 18-year-old son Alex, but within 10 years Stover would like to see him living on his own with support. He’s already on a waiting list
for that.

Stover said society has to work together more like bees in a hive instead of seeing people with a developmental disability as a financial burden.

“Looking after the most vulnerable, the fragile of our population, is a barometer of how well our society is working,” Stover said. “We’re not operating
all that well.”

* * *

Helen Watters is careful to put out her hand as she walks down a hallway so she won’t fall.

She walks past her son’s bed which is covered with an orange star blanket she knit in 1983.

She recalls that, but it’s her son who has the better memory for some things. Without fail, Pat puts out the garbage and recycling on his own on the right

They watch television together at night although, because he mostly repeats words, she doesn’t know if he likes the show she’s chosen. He’s easygoing anyways, she said.

When each day is done, Watters repeats a ritual that has gone on for decades.

She picks out her son’s clothes for the next day and sets them on his dresser.

If there’s more than one set of clothes, Pat is anxious, wondering if mom is leaving.

When she was healthier and would take trips, her son would follow her every move as she set out extra piles of his socks, underwear and shirts. He’d settle down when Helen explained she’d be back, but on her return he was quick to get that suitcase back in a closet.

“The not knowing what’s happening is the worst part for him likely.”

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