More MS news articles for February 2000

Young, disabled and not at home in a nursing home

Wednesday, February 2, 2000, 08:03 a.m. Pacific
by Steve Johnston
Seattle Times Eastside bureau

Linda Hetland said most of the people she lives with came there to die.

Some might live another 10 years or more, she said, but they know this place is their last stop. Yet if Hetland lives her expected life span, she will be in this nursing home for another 30 years or more.

"You are surviving among the dying," is how she summed up her life in the Shoreline nursing home where most of her roommates are in their 80s and 90s.

Hetland, 42, has had multiple sclerosis for more than 20 years. Before going into a nursing home, she was in her own apartment and was an artist who did oil paintings. She was also a lifeguard and a skier.

She was diagnosed with MS when she was in her teens. As the disease progressed, Hetland had to depend on outside help. But sometimes the help didn't arrive and eventually Hetland found herself trapped inside her own apartment.

Most people with disabilities know it doesn't take much to go from having their own place to sharing a room in a nursing home or some kind of care facility.

If you rely on a parent to help out, eventually the parent will become too old to do the lifting, cleaning and all the other daily chores that go into making a life for a person with a disability.

Or a spouse throws out her or his back moving someone from a wheelchair to the bed or the toilet and is no longer able to provide the necessary care.

Or, in several situations I have seen over the years, a spouse decides he or she doesn't want to follow that part of the marriage vows about "in sickness and in health" and they split.

In some cases, it only takes a small event - like the unexpected snowstorm that put Karen Stanton in a nursing home.

Three years ago, Stanton, 41, had her own apartment and relied on hired caregivers to help with the daily chores of living. Even in good times, Stanton said the people coming to her downtown Seattle apartment were "flaky." They didn't show up when they were supposed to and some didn't seem to be trained in what had to be done for her.

"When it started to snow, my caregiver couldn't get to my apartment," Stanton said. "I couldn't get out of bed, so I stayed there for three days until finally someone called the fire department."

When the firefighters showed up, they found her seriously ill and took her to the hospital. From there it was a straight ride to a nursing home.

Stanton has been there ever since. She hopes she will eventually be able to move into a more suitable home ("I don't want to meet someone and say, 'Hi, I live in a rest home' "), but at this time it doesn't look like she will be going anywhere else.

The hard reality for a lot of people in nursing homes is that they need around-the-clock care, so they aren't candidates for the few facilities that do take in younger people with disabilities.

With only a handful of such facilities in the state, the choices are often limited to nursing homes or full-time nursing care at home - both expensive options.

For people in their 20s to 50s, the daily routine of a nursing home is just too routine, say Hetland and Stanton.

A typical day for the two women starts around 6 a.m. when they get up with the help of staff, get dressed and go to breakfast. Then, while the older residents may want to sit in the day room and visit, the younger ones try to find something to fill up the hours.

Sometimes they are able to get out for a meal at a restaurant by riding on a Metro bus or go shopping at a store that can accommodate the large power wheelchairs they use. But most of their days are spent in the nursing home, just filling the hours.

Nursing homes aren't a place for young adults, but there aren't too many other places for them, said Merrill Ringold, executive director of the Multiple Sclerosis Association of King County.

Within six months, however, the association hopes to open its first group home exclusively for people disabled by MS, Ringold said.

A donated six-bedroom home in West Seattle, already wheelchair-accessible, is being further renovated with accessible fixtures and bathrooms.

Ringold said the association will try to find future tenants who are living in nursing homes or in apartments and can't get around very well.

"They should be able to live on their own, but can't function in their current situation," he said.

Unfortunately, he said, they won't be able to take people who require help transferring from their wheelchairs to beds or showers. There will be caregivers coming to the house during the day but there won't be any staying overnight.

"The residents have to be able to transfer because of fire danger,"Õ Ringold said. "They also have to get along with each other. They will be sharing common space. It will be like living in a college dorm."

The monthly rent would be about $300, with residents responsible for their meals and daily housekeeping. Volunteers would help keep the house running and do major home-maintenance tasks.

Bill Brayer, who heads the Multiple Sclerosis chapter for Snohomish County, is also working on getting a house for people with MS. Like the other MS chapters, Brayer said he isn't happy with living conditions in nursing homes for people with MS. Brayer, who has had MS since 1954, is trying to raise money to buy a home through an organization called Multiple Sclerosis Community Services.

Susan Duncan of ADAptations Inc. of Bellevue is working with the King County association on the group-home project. She is a designer and consultant who believes most homes can be converted to accommodate people with disabilities.

Duncan became involved in accessible design as a nurse when she found herself sending patients back to their homes when those homes could no longer accommodate them.

Sometimes it only took some small adjustments - ramps at stairs, handles on walls - to make those homes accessible, she said.

Sometimes it takes much more, but many people will do whatever is necessary to stay out of nursing homes or group homes and remain in  their own homes.

Patty Heflin of Seattle said she didn't want to sell her home when she became disabled "so I took all of my retirement and savings and made my kitchen and bathroom handicap-accessible."

"What I do is rent out my rooms and trade the rent for help," she said. "I can't get dressed by myself, so I have someone help me. I also have Catholic Community Services come in once a week.

"You have to be adjustable and, thank God, I am that," Heflin said. "I think going to a nursing home is a quick way to get off this earth."

Jeff Welsh of Seattle is involved in the nursing-home community in two ways. He has a brother who has been in nursing homes since his 20s and Welsh works as an advocate for people with developmental disabilities through a King County program.

Welsh's brother has multiple sclerosis and just recently moved out of a nursing home and is being taken care of by his mother. He said his brother had several roommates die from old age or illness during his stay at nursing homes.

"My own feeling is that there is never a time for a person to go into a nursing home," said Welsh. "They should be allowed to stay home, and with a little help, they can."

It's usually cheaper for the state to encourage people to stay in their homes, added Welsh. Nursing-home care can cost up to $50,000 a year.

Welsh wants to improve both the training for the state's 2,500 caregivers and the pay they receive. People working in nursing homes caring for society's elderly and sick receive about the same pay as the guy taking an order for a hamburger at a fast-food place, he said.

Many nursing home aides start at $6 or $7 an hour and the pay for nursing staff doing home visits isn't much better.

"It takes 500 hours of training to become a manicurist but it only takes 20 hours to become a caregiver," he said. Next Month: Businesses that go out of their way to be friendly or accommodating to people with disabilities. Tell me about those businesses you've encountered and what they do to make you feel welcome.