Imagine you are 47-years-old and living in your own apartment. You have a disability and use a wheelchair, but you are living independently with some supports. You come and go as you please, make your own decisions, visit friends, go shopping, manage your own finances, and enjoy activities like knitting and crafts. Your apartment is full of objects that bring you joy and pleasure. Then you become ill. You have pneumonia. While you are in hospital, your support workers – who are paid for their time – must move on to other jobs. You eventually lose your home and all of your belongings and are told you have no other choice but to live in a nursing home for seniors. This is what happened to Nicole Bérubé of Bathurst, New Brunswick.
Now 49-years-old, Nicole has been living at a Bathurst nursing home for the past year and a half. I visited her in the facility to talk to her about her experience. Accompanying me is Dianne Cormier Northrup, President of the New Brunswick Association for Community Living (NBACL), a non-profit organization that works on behalf of children and adults with an intellectual disability. NBACL Social Inclusion Facilitator, July Synott is also with me. We enter the facility. It is clean and modern. The colours are muted – the walls and floors a dull terracotta. The cafeteria and common rooms are expansive and there are very few smaller seating areas for more intimate gatherings. It does not feel like a home. It feels, looks and smells like a hospital. Nicole’s room is located in what is called the “Angel” wing.
It’s bingo day at the facility. While we wait for the game to finish, we talk to a nurse through a glass window to ask if there is a room where we can speak privately with Nicole. The nurse is friendly and tries to accommodate us, but no room is available. We resort to a corner of an empty cafeteria where we pull up some chairs to speak. Nicole greets us. She is clutching her purse with one hand, a can of soda with the other. She is wearing brightly coloured bracelets and a sad expression on her face. She wants to share her story with us.
Please Note: The following interview reflects Nicole’s personal views on her experience living as a young person in a senior’s home.
How did you come to live here?
Nicole: I got sick. I had double pneumonia. I was in the hospital for four months. When I got better after about three or four weeks, I was discharged from the hospital. But when I tried to get new workers from the Red Cross and the other care company they told me they didn’t have anyone right now. I would have to wait. Two months into my hospital stay, my sister closed down my apartment and got rid of all of my things. I don’t know what happened to them and I didn’t even get any money for anything that came out of my apartment. I had no place to live so they made me live here. But, I don’t want to live here. This is not a place for young people.
What was your life like before you came to the facility?
Nicole: I was living in my own home. I had support workers who came in the day and I had a lifeline at night. Sometimes my brother would stay with me. I could come and go when I wanted. I could go and do my own stuff. I could get my own groceries and take care of my own money. I had friends all around my neighborhood that I could go visit. I would go to the mall. I would go through the Tim Hortons drive through with my chair. I was very active. I would just get up in the morning and go.
What is your life like here?
Nicole: It feels like I’m in a prison – worse than a prison. When I lived in my own apartment, I was independent. I could do what I wanted. I could eat what and when I wanted, visit my friends, manage my own money. But, when I was placed here, they pulled the plug on my life. That’s how I feel. I feel like giving up.
In my own place, I could transfer myself from my chair to the bathroom. After I got out of the hospital, I couldn’t transfer myself anymore. Now I have a catheter and an adult diaper – not by choice! They make me wear it, because I need a lift for transfers and the staff don’t have time.
I usually eat breakfast in bed because the staff are too busy to get me up. I have to lie there and wait for someone to transfer me into my wheelchair.
I can leave here when I want, but it’s not close to anything except for the hospital and buildings like that. It’s in the middle of nowhere. It’s far to go to the mall and it’s really hard to get the wheelchair bus to bring me to town.
About a week ago, they came into my room and took everything out – my makeup, my shampoo, my puzzle books, everything, even my family album. I used to knit, but they took that away too. There are rules when you are in a nursing home. My room was decorated. I had pictures on my walls, but we’re only allowed four pictures on our walls. The inspectors told the staff there was too much on the walls. And we’re only allowed three things on the window sill and only one night table. The patients were given a warning to take everything down, but I had no one to help me to do that and to store my things. They came into my room. I asked what they were doing. They said, “We’re cleaning out your room.” I felt like it was like a drug bust. I was upset and crying and they made me leave my room and took everything out. I was violated. That’s how I feel.
Nicole suddenly stops talking. A staff member from the facility walks up to the nearby ice machine. Nicole waits for her to leave before continuing her story.
I know I can live on my own. It’s not that long ago. I was punished because I got pneumonia. That’s how I feel. And my CPAP machine that was on a table on the right side of my bed was moved to the night table on the left so I haven’t used my CPAP for about a week now. I told them I needed it on my right because that’s the side I’m used to using it, but no one listens to me.
Capacité NB is working with me to try to get me out of here. I want to stay in Bathurst, because it’s my home.
It is time to leave. NBACL’s Social Inclusion Facilitator, July, promises to help Nicole. She begins with a small step. July leaves the room to speak with the director of the facility and arrangements are made to have her CPAP machine placed on the right side of her bed. Arrangements are also made for Nicole to sort through the personal items that have been put into storage and pick out items she wants to keep with her. July shares this news with Nicole, who weeps with relief. Her eyes express hope. She points to July and says, “You’re hired!” We all laugh. “This is the first time I have laughed in weeks,” says Nicole. “It feels good.”