She has been the primary caregiver for her parents, Charles and Carmen Vigilant, since they were diagnosed with Alzheimer's disease.

She has been caring for her parents at her Wasaga Beach home for three years and the strain has driven a wedge between her and everyone she knows.

"I don't have time for relationships," said Spalding. "It's not fair to the other person."

Caring for her parents requires all of her attention, every minute of each day. She provides the care it would take six professionals to provide in a day, if her parents were in a nursing home.

Spalding is conflicted about sending her parents to live in a nursing home because she would feel guilty but in the process she is putting her own health and wellbeing at risk.

The condition is referred to as caregiver burnout.

Her only lifeline is her support counsellor Heidi Haupt, who is employed by the Alzheimer Society of Greater Simcoe County. She is one of only two counsellors in the region, home to 5,800 people diagnosed with dementia.  

Last year, Spalding attended her first Alzheimer Society support group meeting and talked about what a struggle it is to care for her parents on a daily basis.

The divulgence prompted the facilitator to refer Spalding for support counselling.

Spalding's parents, both 89 years old, were diagnosed with dementia in 2004.

Her father was diagnosed first and her mother shortly after. They were living independently in Barrie at the time and it became clear they would not be able to go on living alone.

So Spalding moved her parents into her home.

Her mother has Alzheimer Disease. Her father has Lewy body dementia and is in poorer health.

"The disease is different from any other," said Spalding. "They have to be reminded of everything."

She said she has to remind them to eat, even remind them what it is that is on their plate.

In addition to experiencing memory loss, people with dementia also lose the ability to express themselves, to recognize people, objects and sound, to complete regular tasks and initiate an activity.

Haupt said people with dementia are often apathetic and anti-social.

Spalding has had to cover the mirrors in her parents' quarters because her mom doesn't recognize her own reflection and is frightened by the sight of the old woman.

They are also prone to hallucinations and lose depth of perception.

They don't have regular sleep patterns because they don't know day from night so Spalding is up with them at all hours of the day and night.

Haupt said although they are not at all like children they require the same type of care that a young child might and caregivers may experience associated sleep deprivation.

On top of everything, her father can be unkind and her mother is stubborn, characteristics that are amplified by the disease.

"You have to have patience to take care of people with dementia," said Spalding. "I don't know how I do it."

Both parents use a wheelchair and Spalding spends her days making their meals, dressing them, cleaning up after them, administering medication, getting them to medical appointments and making sure they are alert for at least part of the day because all they want to do is sleep.

"I have no social life," said Spalding.

"Most caregivers are very isolated," said Haupt, adding that Spalding doesn't drive and has only a limited income, which makes getting around town difficult and makes her more isolated.

"I feel very alone," said Spalding. "I pray a lot - every morning, every night."

She said she has lost weight because she has no appetite and forgets to eat.

"Often caregivers end up in the hospital before their parents do," said Haupt.

She said the caregivers in more than half of her caseload experience similar struggles and challenges.

Spalding said she consulted with her husband of 10 years before she moved her parents into their home and he agreed but the marriage disintegrated shortly after.

He left home almost two years ago.

"I had to make a choice between my parents and my husband and the choice I made was to keep my parents and let my husband go," said Spalding. "It was a difficult choice to make."

Haupt said any existing strain on the family is heightened by the responsibility of caring for family members with dementia.

Spalding has two adult children who are very supportive but do not live close by so they are not able to help with the physical care.

Haupt said there is a five- to six-month waiting list for personal support workers (PSW), a service offered through the Community Care Access Centre in Barrie. PSWs come into the home and help provide care.

"Unless you are absolutely dire, you are not going to get the service," said Haupt.

Spalding's parents receive 24 hours of PSW service each week.

The time allows Spalding a chance to get groceries and run errands.

She said she also tries to head out for a walk around the block when the PSW arrives in the afternoon and takes small pleasures in a cup of coffee and listening to music.

Spalding can purchase additional PSW hours through the VON (Victorian Order of Nurses). She does have someone come in every two weeks for an overnight shift.

But Spalding says even when the PSW is in the house she still feels she must be there to comfort her parents because she is their world.

Spalding knows that she must admit her father into a nursing home and is making steps to do so. Lewy body dementia makes him more prone to falling and when he falls in the night she cannot get him up.

But she worries that her mother will miss her husband of 69 years and believes her parents have a better quality of life at home with her. She says she is willing to admit her father into a nursing home when a bed becomes available but is still unwilling to admit her mother.

Spalding says she is making many sacrifices and she needs help but finds she has to beg for it.

Haupt said there are services available to those caring for people with dementia through several different organizations but said it is a patchwork of approach and there are gaps.

"It's not running as smoothly as it should," said Haupt.

The Alzheimer Society helps fund research, organizes support groups, counseling and other services.

Haupt said people should urge all levels of government to make dementia a priority.

Although it is not known what causes dementia, age is a factor and with an aging population, dementia is on the rise.

Research shows more and more people under the age of 65 are suffering from Alzheimer's disease and related dementia.

A caregiver support group now meets in Wasaga Beach at the Wasaga Beach Community Presbyterian Church, located at 208 Mosley St. from 7:15 p.m. to 9:15 p.m., the second Monday of every month. For information contact the Alzheimer Society at 722-1066.

The Alzheimer Society has also launched a new program called First Link, which urges health care professionals to refer people who are diagnosed with dementia to the organization right away so they can be educated about the disease. Haupt said it is meant to help people care for their loved ones longer and get access to services sooner.

Visit www.alzheimersociety.ca.  

On the rise

Alzheimer's disease is not a normal part of aging.

It is a progressive and degenerative brain disease that destroys memory, reasoning, orientation in time and place, along with other cognitive functions.

About 500,000 Canadians have Alzheimer's disease or dementia.

More than 71,000 are under the age of 65.

About 50,000 are under the age of 60.

Women make up 72 per cent of Canadians with Alzheimer's disease.

Within five years, an additional 250,000 Canadians could develop dementia.

Within 25 years the number of people living with Alzheimer's disease in Canada could reach between 1- and 1.3-million.

-Alzheimer Society of Canada