All About Multiple Sclerosis

More MS news articles for March 2003

'They just said my care was too hard'

MS sufferer set up for home care only to have it cut off last fall

http://www.canada.com/vancouver/news/story.asp?id=%7BB6F599A7-C8A5-42E8-890D-403A23968C01%7D

Saturday, March 08, 2003
Kim Pemberton
Vancouver Sun

KELOWNA - Sherry Wonitoway lies motionless in her darkened bedroom, calling for her mother who is busily washing dishes in the bright, airy kitchen.

Sherry, who has multiple sclerosis, strains to raise her voice to be heard, but she is barely audible in this room, never mind over the clanging of pots down the hallway.

"Mom ... Mom ... Mom." She pauses to rest for a moment, then tries again. "Mom ... Mom ... Mom."

A few minutes later, Mary Wonitoway appears at the doorway.

"Were you calling me?"

At 78 years of age, Mary is a petite woman who is full of nervous energy. Her hands are in constant motion, fidgeting with something in her cardigan pockets. Mary is one of the unknown number of family members in B.C. caring for a relative who is either ill and/or disabled.

Although Sherry's 23-year-old daughter Chrystal tries to come by and help when she can, she is also busy raising her own own child in Penticton -- more than an hour's drive away.

Sherry's two brothers have families of their own and are also not nearby to help. One brother is in Fredericton and the other is near Winnipeg.

"I'm stuck here. My mom and I are alone," she says.

But the problem is that Mary herself is not well. She has lymphatic cancer and chemotherapy is no longer an option.

DYING WHILE HELPING OUT

Mary is matter-of-fact about the terminal disease she is facing. She states simply that her doctor has told her there is no point in doing any chemotherapy because the cancer is too widespread.

"The doctor said if I want to do something, I have to do it now," she says. "I'd like to get away. It's been two years since I've had some time for myself. But I can't leave Sherry. She has to have somebody around."

So although she is dying of cancer, Mary finds her final days are being spent caring for her 52-year-old daughter seven days a week, 24 hours a day and worrying about the future.

"It's sad Sherry doesn't have any help. They [health authorities] say if I need help they'll send someone to come and talk to me," says Mary. "I don't have time to sit down and chat with a counsellor. I don't have time to get depressed.

"What I need is someone to help me cook and clean."

Mary adds that she can't even go shopping because she worries Sherry could need help with something as simple as straightening her arm if it was to spasm. She used to be able to leave for brief times to visit the nearby mall by calling a neighbour who was willing to come over if needed. But since the neighbour got a job during the day, that bit of respite has ended.

At this moment, Sherry is clearly in pain after a muscle spasm.

"Can you fix my left hand. It's hurting my thumb," Sherry tells her mom. A muscle spasm has caused Sherry's left hand to jerk off the soft towel across her stomach and land on her right thumb. Mary reaches out to reposition her daughter's hand. To do so requires bending Sherry's thin arm, which is covered with small bruises.

Sherry says she doesn't know why her skin is so sensitive but warns me not to touch her. Even her mother's gentle touch as she replaces her hand back to a comfortable position causes her to grimace in pain.

Sherry's multiple sclerosis -- a chronic and progressive disease of the nervous system -- has progressed to paralysis. It usually appears between the ages of 20 and 40, and affects twice as many women as men.

Ten years ago, Sherry lost the ability to walk. But even worse, she says, was the loss of the use of her arms and hands seven years ago. Not being able to move at all has forced her to be totally reliant on others to meet her basic needs.

"Mom washes my face, straightens my arms and neck, puts lotion on me. She cooks my meals and feeds me. I don't want her to do too much. I try not to ask. I'd prefer just to sleep all day so I didn't have to call her.

"Mom's angry a lot of the time. She's so tired and she's angry. They [health officials] are just pushing people to the maximum."

Sherry's only recreational activity is "staring at the idiot box," as she calls the television.

"If I just had one arm, even if it was mechanical, I'd be the first one to go for it. It would be a brand new world just to be able to scratch your nose," she says.

Sherry's only connection to the outside world is a sip-and-puff device that allows her to turn on the television, adjust the channels and volume, and use the telephone.

A microphone beside the sip-and-puff device is taped to a bendable, gooseneck lamp that hangs directly above her mouth. Because Sherry is able to move her head slightly she can catch the plastic sip-and-puff device and pull it towards her mouth. By doing so, she is able to connect to the phone. If Sherry puffs once into the device she is connected to the operator, who will dial the numbers Sherry has memorized. Numbers dialed less often are written on yellow sticky pad sheets that are also taped to the lamp, within Sherry's view.

These days Sherry's world is limited to her bedroom. It's a small room simply decorated with a wooden cross over a homemade shelf, an angel calendar, an assortment of earrings she no longer wears, a framed pencil drawing of her daughter at the age of eight and artwork from her three-year-old grandson. A rolltop desk is where her medication is kept.

"It's not the way I'd decorate. But I don't have any choice," she says.

For a while Sherry was able to leave the confines of this room. A short ceiling track over her bed would allow a sling to be lowered to her and once she was rolled on it she could be electronically moved to the sip-and-puff wheelchair that Sherry herself could control.

But to get out of bed requires help. Mary is simply not physically able to help her daughter out of bed. As a result, Sherry is stuck in bed and gets out only when her own daughter comes by for a visit.

Having to rely 100 per cent on her family started in September. This was when the Interior Health Authority stopped providing funding for a home care worker to come to the house and provide the assistance Sherry needed to get up.

"They [the Interior Health Care region] just said my care was too hard."

Sherry said officials want her to move into a long-term care facility, but she is adamant she won't go there. She has already had experience in such facilities, having been placed there for brief periods in the past.

"Most of the people there are in their 80s. I'm 52 years old. I grew up in the '60s. I have nothing in common [with the other residents]," she said. "How do you communicate with people who are 30 years older. They don't speak the way I do. I went into the rec room to watch a program and one lady wanted to watch her show and she had a fit. I can't do anything there," she says.

"In a facility there's so much yelling going on. There was a woman screaming there so much just one door down that I was shaking by the time I left. She didn't stop the whole time."

Sherry adds she can't understand why the health authority is willing to pay for a more expensive long-term care bed when home support would be significantly cheaper.

FOLLOWING THE CARE PLAN

Health ministry figures indicate it costs an average of $125 a day for residential care, compared to $50 to $75 a day for care support in specialized housing.

Christine Gordon, an advocate with the B.C. Coalition for Persons with Disabilities, said the Interior Health Care region has been particularly "intransigent" in not providing funding to help Sherry and her mother.

"Sherry is determined not to go into an old age home and I don't blame her," says Gordon.

"She's already gone some distance to get her environment up to the point where she can cope. It is so wrong [of the Interior Health Authority], especially when the support hours she is asking for [are] so small. She just wants to be able to get up and keep clean. They are very modest expectations. But it's the way home support is going across the province. On any given day I could put my head in my hands and weep. I keep hearing stories like this one. To deny people the little bit of help they need to stay at home is just cruel."

Interior Health spokeswoman Alison Paine said while the health authority wants to keep people independent in their homes as long as possible, Sherry's health has deteriorated "to the point where her own safety and the safety of her workers is an issue."

Paine says Sherry needs 24-hour nursing care, but Sherry insists her physical condition has not changed since she last received home care support.

Alice Mah Wren, director of the Okanagan's community care program, says the decision not to fund the home support worker was not taken lightly. In the last week Sherry received government support, she says, a nurse had to go to her home to supervise the home care worker to ensure the care plan was followed.

Wren says the health authority simply couldn't maintain that level of service. But Sherry insists a nurse wasn't necessary.

Asked why Sherry would go from 120 hours of home care support -- the maximum allowed under the health ministry guidelines -- to nothing since September Paine said there is nothing the ministry can do if Sherry rejects the health authority's decision.

"The care plan is laid out based on medically sound criteria and if the patient decides not to follow the care plan that's their choice and the consequences follow," she says.

Sherry, however, is continuing to fight to get her home care restored. Prior to the cutoff, a home support worker used to come at 8:30 a.m. every day to get her up and out of bed, give her a sponge bath and feed her breakfast. The worker would also put Sherry's contact lenses in for her and give her the medications she needs to lessen her pain.

At lunch, a worker would return to feed her a meal, prepared by Mary, and at dinner the same help would arrive. At bedtime, around 9:30 p.m., a worker returned to help move Mary from her wheelchair to the bed -- the same type, with safety rails, that is used in hospitals.

And although her life was certainly more restricted than most, Sherry considered it a good life because she was able to remain in her own home and at least get out of her bed and move around the ranch-style home that had been especially outfitted to meet her needs.

FITTING INTO A MODEL

Ironically, the government paid for the hospital bed, special shower, commode, carpeting that wouldn't hinder the wheelchair, a ceiling track, paved the driveway, and built a wheelchair ramp leading into the home. There were also plans to install a door opening device that could also be controlled by the sip-and-puff wheelchair.

"They encouraged me to stay at home, so it's not making sense to take away my home support," she says.

With a disability pension of $750 a month Sherry says she can't afford the cost of a home care worker.

But because she doesn't want her mother to clean her after a bowel movement, Sherry has been forced to pay privately for that type of care.

"I won't ask my mom for that type of help," says Sherry, noting Mary already helps by emptying her urine bag.

"She's already stressed. She is just beside herself. She's not healthy. This is no way to spend your last days."

Joanne Calkins, Sherry's advocate and herself a former nurse, says Sherry doesn't require full-time nursing support.

"There's no justice in all this. It's such a shame. Sherry's home has been renovated. She wants to stay and I support her in that decision. When people are forced to move into facilities, their well-being goes down.

"What I'm not getting is [that] Sherry's of sound mind. She's aware of the risks [of staying at home] and she says she'll take the risks, so why does anyone dispute that? The health care plan is somebody's idea of how she should live her life. It's like a regime has been set up for her and she has to fit into their model."

But both Sherry and Mary say they won't give up the fight to maintain Sherry's independence.

"I'd rather have my daughter at home," adds Mary. "But she needs help."

"They [health officials] say they feel sorry for me. If they felt sorry for me, they wouldn't be unloading all the work on me."
 

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