'It’s almost too bad today wasn’t a bad day'

Suzanne Salituri knows the moment her mother is lost when she fades into her dementia-induced episodes.

“I know when she has gone somewhere else because she will speak English to me. When she is with me, she speaks French,” said Suzanne during a recent speech to city council in advance of this Sunday’s Alzheimer’s Walk.

At 80 years old, Suzanne’s mother Fernande LeClair was diagnosed with Vascular Dementia in June.

The changes Suzanne has seen since her mother’s diagnosis have been shocking.

Suzanne had never heard of Vascular Dementia and had no sense of the dramatic changes to come for her mother, herself and her family.

Her mother and father — married 61 years — moved from their apartment to a studio unit at Collegiate Heights, only to have her mother move to Extendicare Van Daele Manor to rehabilitate after breaking her arm during a bad fall.

She required an armband with her name and room number, because she spent so much time wandering the halls and riding the elevators — unsure of where she was.

The day of this interview with SooToday, her mother was placed into the Davey Home.

“Today she is bang-on. Her memory is really good. In fact it’s too good because she knows for sure she won’t be with my dad now that she’s moved into [the Davey Home]. It’s almost too bad today wasn’t a bad day,” said Suzanne.

Fernande went from being an active independent woman who walked everywhere, to requiring a cane, then a walker to finally requiring a wheelchair — all within the last seven months.

Suzanne took a caregiver burnout leave from her career to take care of her mother. 

Since her mother’s diagnosis, Suzanne accompanied her mother on 93 appointments and they spend most of their time together.

In total, Fernande has spent 39 days in hospital since the June diagnosis and been taken to the emergency room five times.

Soon after her mother’s diagnosis, Suzanne gained consent from her mother and father to allow her to share their stories in an effort to advocate for awareness about Alzheimer’s Disease and dementia — no matter how embarrassing they may be.

Fernande's 'social filter' often disappears as result of the illness.

“Yesterday we went to a wake and she was smiling, laughing and cracking jokes. She never realized at a wake you don’t quite do that, but most people understood,” said Suzanne, who also recalls an instance when her mother called her 'ugly' — in English.

Fernande and her husband Hector were both born and raised in New Brunswick and speak Acadian French.

The couple moved to the Sault in the early 1960s to raise their family, living in the same house for 35 years, before downsizing to an apartment in 2008.

Moving three additional times since her diagnosis has been difficult on Fernande.

“Especially when I started to lose my mind. I didn’t know where I was. That was a nightmare,” said Fernande.

Being separated from her husband of 61 years has been difficult for Fernande.

“When I used to sleep with my husband I would put my two feet on the back of his leg — and they were freezing,” said Fernande.

Suzanne chuckles.

“It’s funny — that’s the one thing he misses. Just the two of them lying back to back and having her cold feet on his calves,” she said.

The couple were given an opportunity to sleep in the same bed together for Christmas.

“And he didn’t snore,” said Fernande.

Suzanne became a leader in the Francophone community in Sault Ste. Marie, acting as trustee for the French Catholic school board and president of the Centre Francophone de Sault-Ste-Marie.

Frustrating for Suzanne and Fernande, out of the 93 appointments attended since June, only one was offered in French.

Because her father was also dealing with health issues simultaneously, Salituri attended even more appointments with him. 

Her father’s doctor offered to take on Fernande as well, which helped take some stress off Suzanne, her daughter and siblings who share responsibilities.

“My sister Micheline has been amazing through this whole thing,” she noted.

Caring for her mother has taken time away from her work and other commitments, but Suzanne says there has been many precious moments between the difficult ones.

“There’s nothing better than to share a laugh with her, a gentle touch, a smile, a glimpse of the person we once knew,” she said.

Suzanne said she isn’t sure how much longer her journey as caregiver will be, but said the time she has spent with her mother has been a blessing during her caregiver’s leave.

“I will hold my Maman’s hand all the way through this journey,” Suzanne said.