Former CONNECT resident, Jennifer, shares some incredible insight with future caregivers about being on the resident side of care.
Jennifer spoke on August 6 about her experience as a CONNECT resident to four students from Kwantlen College, who spent two weeks doing a practicum at CONNECT in Langley.
Kwantlen is one of three schools that sends students to CONNECT to complete practicums.
The hour-long talk was emotional – both for Jennifer and the students.
“As caregivers, you are the ones who can show people with brain injury and illness the respect they deserve as humans,” Jennifer told the students. “There are lots of cases where people come from facilities where they haven’t been treated like individuals. They’ve been treated like cattle.”
She explained to the students that while a resident may lash out with anger, sadness or frustration, it’s not something they should take personally. The emotion comes from the loss of independence that so many people with injury experience.
“I want to be able to open the door myself but I can’t. I rely on you. So I may be mad – not because of you – but because of the lack of independence.
“Everybody was independent before they got injured or sick. They had families, pets, jobs. They paid their bills and did their laundry. It’s a very hard pill to swallow when you suddenly need help to go to the bathroom.”
Before she got sick, Jennifer was married, worked as a manager at a glass manufacturing company, had her Class 4, 5, and 6 licenses, and describes herself as fiercely independent. Jennifer described how her morning routine used to take 15 minutes. Wake up, pee, put on a housecoat, make coffee, go outside and have a cigarette. That routine now takes 45 minutes and requires assistance.
More than three years ago, Jennifer was diagnosed with Bickerstaff Brain Stem Encephalitis, a rare disease that attacks the brain stem. She said she was only the 64th case in recorded medical history.
What started as blurred vision and heightened senses of smell and hearing resulted in a drug-induced coma when her lungs stopped working.
After a month and a half in a coma, 18 months at Royal Columbia, a short stay at GF Strong and a few weeks at Queen’s Park, Jennifer was sent to CONNECT, where she stayed for more than a year. She now lives in a family care home.
Jennifer can walk short distances but spends most of her time in a wheelchair, the mobility in her arms is limited and she has emotional lability, a sometimes irrational emotional response to circumstances.
“Where a person will typically sign or roll their eyes, I will sometimes burst into tears or have a tantrum. I can’t control it and I find it frustrating and embarrassing when I can’t get through a sentence without crying five times.”
Student Jennifer Browning thanked Jennifer for sharing her story and perspective.
“What an eye opener. Thank you so much,” said Browning. “I think you move people with your emotions and I think that’s a positive thing. I don’t think you should be embarrassed about it.”
Jill Koppang, Resource Leader at CONNECT, said her goal would be to have this kind of talk early in the schooling of every caregiver.
“Jennifer has even been involved in our hiring process because who better to interview potential caregivers than the person receiving care?”
Koppang started incorporating Jennifer into her student orientations about a year ago after recognizing her invaluable perspective and her willingness to share.
Student Olive Becker said Jennifer provided some important insight into receiving personal care.
“I now understand the frustration and embarrassment that accompanies toileting, for example,” said Becker. “I can see how that comes from a place of dependence, when you used to be completely independent.”
Jennifer said the most important thing for a caregiver to remember is to treat residents with respect, compassion and to be a good listener.
“I am fortunate because I have the ability to speak, but a lot of people are trapped inside their heads and cannot communicate. Just remember that there is a human being in that bag a flesh. Someone with hopes and dreams and wants and needs. And they want to be treated with some humanity.”
Koppang encouraged the students to be curious when working with residents, to ask questions in order to get to the bottom of what they need and want. When residents are non-verbal, caregivers have to be even more curious and find creative ways to meet their needs.