CARING FOR THE CAREGIVERS
It’s easy to overlook the price dementia patients’ families pay
More than 22,500 Manitobans have dementia — either caused by Alzheimer’s disease, stroke or some other neurodegenerative illness. While an Alzheimer’s diagnosis may feel like the end of the world for people, they have little choice but to live as best they can with the disease. That’s a key message behind the Alzheimer Society of Manitoba’s theme ‘I live with dementia’ for Alzheimer Awareness Month
THE blank expression of Kerri Pleskach’s father, Terry Law, often melts into a warm smile when she visits.
His eyes sparkle with delight at her sight — even though he may not exactly know who she is.
And that’s all right with Pleskach, and the rest of the family too.
What counts is the visits brighten his day.
“When my sisters and I are there, he loves to talk to us about ‘his daughters’... despite not realizing that we are right there,” says the
38-year-old Beausejour mom of two young children. “To us, it’s a sign our dad is still in there.”
Law’s family has learned to embrace these moments after seeing their father deteriorate rapidly over the last three years since being diagnosed with dementia around his
Each visit to the geriatric program at Selkirk Mental Health Centre is another chance to be with their dad, a once gregarious man whose mind and body are gradually being chipped away by a disease with no cure or effective treatment.
More than 22,500 Manitobans share a similar fate as Law. They have dementia — either caused by Alzheimer’s disease, stroke or some other neuro-degenerative illness.
While a diagnosis may feel like the end of the world, they have little choice but to live as best they can with the disease. And that’s a key message behind the Alzheimer Society of Manitoba’s theme ‘I live with dementia’ for Alzheimer Awareness Month.
The campaign not only aims to raise awareness, and funds, for Alzheimer’s and other causes of dementia. It also seeks to highlight that no matter how much the disease strips away what made people what they once were, it does not diminish their humanity.
Yet it’s not only individuals with the dementia who are living with the disease. It’s also their families and close friends.
“It’s estimated that for every person living with dementia there is a minimum of two individuals providing care,” says Norma Kirkby, program director for the Alzheimer Society of Manitoba.
“It’s like a pebble in the pond.” The person with dementia is the pebble, yet the ripples “go far and wide” affecting many other individuals, she adds.
Those individuals bearing much of the burden of care often see their lives change dramatically, facing challenges they never imagined, Kirkby says.
Chief among those is “that individuals with dementia are not as able, and progressively less so, to do the things they used to do for themselves and the family.”
And that can leave primary caregiver — often a spouse — thinking for two people instead of one.
“Another key challenge family members really find stressful is that as people with dementia progress, they lose their ability to emotionally read the needs of others,” she says.
“That makes people feel very alone and lost because that person who was beside them as a partner isn’t there anymore.”
This is often referred to as “ambiguous loss,” Kirby says. “So caregivers frequently have a sense of unmet needs that arise as the disease progresses.”
That’s where organizations like the Alzheimer Society can often help caregivers cope.
“We tell them that you don’t have love or like these changes, but you can gain an understanding and then problem solve how you can work through them.”
Of course the difficulty can be that each day brings a new sense of loss because dementia is an unpredictable and often a worsening condition, Kirkby says.
Indeed the experience of Pleskach, her sisters and their mother Jan has been just that.
WHAT started as forgetfulness and a faltering sense of direction progressed to profound disability for Law. “It’s very hard,” Pleskach says. “He’s now in diapers and has trouble getting up and standing on his own.”
Among the most difficult changes for the family was the decision for Law to go into care about a year ago. For some time before that, Pleskach and her sisters had been trying to convince their mom that caring for him at home was no longer feasible.
The day-to-day burden of care — helping him shower, brush his teeth and get dressed — was wearing her down.
“Just getting him dressed up to go out would take 45 minutes,” Pleskach says. “He wouldn’t want help, and then would often get distracted by something else.”
The turning point came when her mom left him at home so she could run some errands. When she came back, he was there, but the van and the family dog weren’t. Law — who had his driver’s licence taken away after being diagnosed — had gone for a drive with the dog, parked somewhere and walked home.
“He didn’t remember doing it or where he went, so we had to search the town... hoping that nobody was hurt.”
The dog and van were found safe, but the event led their mom to agree to place their dad in respite care for a few weeks.
“She needed a break, and we told her that she’s no good to him unless she’s healthy,” Pleskach says.
Eventually the family, with the help of a health-care team, determined Law could not return home and would remain in long-term care. Pleskach says her mom felt tremendously guilty about the decision, and still grapples with it to this day.
Kirkby notes guilt is common. But at the Alzheimer Society, caregivers are frequently reminded they must care for themselves too.
And that often means eventually placing their loved one with dementia in care.
Although difficult, it is also an opportunity to reset the relationship.
“What often changes is the person who was the 24/7 caregiver — worrying about dressing, toileting, bathing and all those sorts of things for the other person — can now get enough rest and be emotionally more present and energetic when visiting.”
They can now enjoy just being with their loved one: sharing a snack, sitting in the garden or listening to music together.
These are now words to live by for Pleskach and her family.
“Our motto is ‘memories matter’ so everything now is about spending quality time with him,” she says. The past few years have been hard, Pleskach admits.
“But in the end, we have come closer as a family.”
Kerri Peskach walks the halls at the care facility in Selkirk with her father Terry Law, who is a long-term care dementia patient.