A Gananoque area woman has received a provincial award for the care she has given her husband after he was diagnosed with a degenerative brain disease four years ago.
Vicky Willis, who lives between Kingston and Gananoque, was one of four caregivers across Ontario honoured last week in Toronto at VHA Home HealthCare’s ninth annual Heart of Home Care Award ceremony.
The award recognizes the extraordinary efforts of a friend or family member who has gone above and beyond the call of duty to provide a loved one who is disabled, elderly, or chronically ill with the support needed to live at home with more independence.
VHA Home HealthCare is a provincial non-profit organization and home care provider.
Willis was nominated for the award by the Alzheimer Society of Kingston.
“This year’s winners truly embody the dedication, strength, compassion and positivity of caregivers,” notes Carol Annett, president and CEO of VHA Home HealthCare in a statement. “The job of a caregiver is a demanding one with lots of challenges and often isn’t acknowledged by the outside world. Caregivers really are the backbone of home care and the health-care system. This is really VHA’s way of saying ‘thank you’ to these extraordinary caregivers, shining a spotlight on them and bringing attention to the need for caregiver support and relief.”
After her husband, Jeff, was diagnosed with frontotemporal dementia, Willis took it upon herself to be his primary caregiver.
The couple has two children who were away at university.
The disease has taken its toll on Jeff. Since 2010, he has gone from an officer in the Canadian military and a busy, active man in his late 40s to someone who needs care almost 24 hours and who has to be watched all the time in case he wanders from the couple’s waterfront home.
Since his diagnosis, Vicky has provided constant care, which has included bathing, shaving, preparing meals, dealing with incontinence and finding creative ways to keep Jeff from wandering.
He would also wander around their home, always moving around, even during meal times. As well he would often repeat the same words or phrases over and over again and be unable to participate in conversations.
The couple’s story was told in January in a special Whig-Standard supplement for the Alzheimer Society of Kingston, Frontenac, Lennox and Addington.
It was the society that nominated her for the award.
“It was based on the experience I had,” Willis said in an interview, acknowledging a reporter’s comment that the award is somewhat bittersweet.
“I feel very honoured that they nominated me and thought of my caregiving, but it’s kind of bitter to think that I have to go through what we went through to get it.”
Proving too much to handle, Jeff Willis was moved in March to a care facility in Gananoque.
“It was one of the hardest decisions to make, but things were regressing and I couldn’t handle it any longer,” said Willis.
She says she tries to visit him every day and spends upwards of a few hours daily with her husband.
Although she’s no longer his primary caregiver, she still has a responsibility to the man she’s been married to for 28 years.
“I have to be an advocate now for him. I have to make sure that he’s treated well and looked after where he is.”
Willis is now trying to help others affected by the disease by speaking to the Alzheimer Society about the family’s situation and has spoken to Queen’s students about geriatric medicine.
“I hope to do more talking engagements to get the word out and help as much as I can.”
Willis also hopes to work with support groups.
Having gone through her situation she has advice for other caregivers who may be entering similar circumstances.
She seek out the Alzheimer Society, she said, because they have a lot of resources and can provide support.
“Personally keep as much of a positive attitude as you can and look at the funny side of things and don’t dwell on the more difficult and sad side. If you don’t you can really go to a dark place yourself.”
“Keep a smile on your face.”