Winnipeg Free Press - PRINT EDITION

Without help, 'I couldn't have got through it'

Alzheimer Society there each step of way

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Susan Gustafson didn't know what was happening at first when her husband began making inappropriate comments to people and had problems with his memory.

David Gustafson himself never realized anything was happening.

David, who died on Feb. 28 at 59 years of age, was diagnosed in 2007, with frontotemporal dementia, a form of dementia that leaves your cognitive abilities mainly intact at first, but changes your personality and causes continued memory loss until the end of your life.

It most often affects people aged 40 to 60 years.

"He never had any insight into his illness," Susan recalled recently.

"He never thought anything was wrong with him at any point."

Susan profusely thanks the Alzheimer Society of Manitoba for the help and support it gave her during the most trying time of her life.

"It was right after the diagnosis -- I started looking for supports. I found the society and contacted them.

"If I didn't have that support I don't think I could have got through it."

Gustafson said the people the society linked her up with told her in advance the signs she could watch for as her husband's illness progressed. They also told her how to access home care and that she should be taking the car keys away from her husband.

"You can ask people for advice who have walked in your shoes before you," she said.

Gustafson said it was tough for the couple because before the diagnosis was confirmed, her husband's illness caused him to lose his job, but he never knew why.

"He was having some issues with co-workers and not doing his job," she said.

"He was in an environment where you had to produce, but at that point, we didn't know what was happening.

"In the early stages, you want to talk to them about their illness, but he would only say when he gets another job things will be good. It was frustrating not being able to talk to him."

Gustafson said at first she wondered why her husband, who the family always jokingly called the absent-minded professor during the 21 years she was with him, seemed to be even more absent-minded.

As her husband's illness progressed, Gustafson had to do things to keep him safe, such as putting better locks on the doors and selling his vehicle. Later, she had to add audible alarms to the exterior doors.

"He was in danger," she said.

"He would walk in our community and he couldn't remember the number of our home. Once when he went missing, we found him two hours later on Main Street."

She thought taking away her husband's ability to drive would be the toughest thing she'd have to do, but it ended up being fairly easy. She said one winter day, the battery on his car froze and he couldn't start it.

"He would try it every day until he forgot about it," she said.

"A year later I had it removed and I was so worried he'd notice, but he never noticed when it was gone."

As the illness continued to progress, home care began coming to help. In 2011, David had to live in a nursing home.

"My husband was still fairly active. He lost his ability to communicate. He could say 'hi' and had a few responses, but the loss of language was really hard.

"Some people do have insight into their illness, but if it's a behaviour change, there is often not a recognition they have an illness."

Wendy Schettler, the society's CEO, said it has an array of services to help both individuals diagnosed with Alzheimer's disease or dementia and their family members.

Some of the other services and supports the society provides are supportive counselling, an identification bracelet with the MedicAlert Safely Home program and professional education.

"Although we're called the Alzheimer Society we're really here to provide services for all types of dementia," Schettler said.

"This is an illness that progresses over a long period of time. Sometimes you just need someone to talk to, and we provide that. We also have support groups and not just for the person with it."

There are 20,000 Manitobans diagnosed with Alzheimer's, and about 4,000 new cases of dementia are diagnosed each year. One in three Manitobans has a family member or close friend living with dementia. It costs the provincial economy about $885 million.

Across the country, about 747,000 people are living with cognitive impairment including dementia.

Schettler said the society, which this year is celebrating its 30th anniversary, expects those numbers to go up as baby boomers continue to age.

Schettler said they also help individuals and families with issues including end-of-life care, managing finances and communication.

Schettler said many family members and friends of people caring for a person with dementia will receive helpful information at the third annual Care 4U conference on Nov. 2. Last year more than 300 people came out for it. Call 204-943-6622, Ext. 203 for more information.

"Our goal is to help support people and plan for those times coming."

Schettler said the society also supports research and it does advocacy to ensure people get the help they need.

"Some people say they didn't reach out to us because their family member didn't have Alzheimer's, but dementia. It's important for people to know we provide service for all people with dementia."

Gustafson said she is so thankful for the society's help when she need it that she is now giving back by volunteering for it.

"I go to discussion groups and I support people, telling them this is what I did and don't worry about that," she said. "I always appreciated the help I received from diagnosis to death.

"It was trying, but you can make it with the support of others."

kevin.rollason@freepress.mb.ca

Republished from the Winnipeg Free Press print edition October 26, 2013 A29

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