How long have you been a caregiver for your mom, and what does it involve (time-wise, commitment-wise, task-wise)?
My mom was diagnosed with Alzheimer’s in 2006. I have cared for her for the last 4 years. For 2 years she lived with me and the family, which consists of my daughter and 4 grandchildren. And then for the last 2 years, mom has been in the residence home. I visit her 4 to 5 days a week for 2 hours or more. I also bathe her weekly, help her eat and make sure we take walks. We sit and talk, hold hands, and laugh. I always ask her advice concerning the children.
If a friend asks you what it’s like, what do you tell them?
My answer to a friend would be: I have come to know my mom as a different woman. I have never laughed or cried as much as I do together with her. Each visit is a learning process, and my mom leads the way.
What’s the hardest thing you have to deal with? Can you share a story about one of these times?
The hardest day with mom was the day she went into the residence. I felt like I had failed her and was passing her on to be cared for by strangers.
The decision to place my mom in the residence was kind of taken out of our hands. We were working with a CLSC social worker at the time, who came into our home to see my mom. She suggested that we go to the hospital to have mom’s medication reviewed. She was there for about 2 weeks. At that point, the social worker from the hospital decided there was nothing they could do for her anymore, and wanted her released, as did we—we wanted her back home. But the CLSC social worker got involved again and told the hospital that mom could not come home, for various reasons: They felt our home was unsafe. Mom would become aggressive at times. One of our dogs actually had to protect my daughter because my mom was hitting her. Mom would also want to go for walks, but refuse to wait for us to join her. These were the reasons I had wanted her medication checked. To see if we could reduce her anxiety. Not to have her leave and never return home. Do not miss understand me, I know the CLSC had valid points. Yet I wonder if we couldn’t have tried different ways to keep mom home.
When I spoke with the CLSC worker about it, she said they could no longer help us in any way if my mom came home. This started the ball rolling for mom’s placement in the residence. She was placed within 2 days. I knew the residence, as my mother in-law had been there for 5 years. I felt tricked and betrayed, as I now believe mom’s hospital visit was just a ruse to have her placed. I knew I could not take care of her alone without help from the CLSC.
What’s the most rewarding thing? Can you share a story about one of these times?
My daily greeting from my mom! Every time I show up she waves her hands to get the group’s attention and says, “Oh my, Susie is here. My daughter is here!” This makes me feel like the most loved person in the whole world. She doesn’t realize I go so often. Her reaction when she sees me is pure joy. She does not question why I am not there for her daily, as she forgets every visit. So with each visit, it’s as though we are getting together for the first time.
What have your interactions with the health care system been like? How has being Anglophone changed things (or not)?
I believe the residence should provide more information for the families once their loved one arrives. For example…we were never told that mom would be in a locked unit. Our reaction was quite difficult to hide, but I could not let my mom know how upset I was. All the important documentation that I signed was in French only, and all correspondence by mail is always in French only as well. I believe that, being an Anglophone, I should have all documentation in English.
What have your mother’s interactions with the health care system been like? How has being Anglophone changed things (or not)?
My mom’s reaction upon being brought to the residence was one of fear and questioning as to why she was there.
Have you taken training or courses to be a caregiver? What was that like? Was it helpful?
I took a caregiving course through ARC and Nova. Our teacher was amazing and I learned important ways of helping my mom. The course helped me emotionally. I learned how to lift and move mom should she become bedridden. They also informed us of proper care methods to avoid bedsores. The teacher gave us hope and made us believe in ourselves.
What kind of future do you see for yourself and for your mother?
We take one day at a time. I do not look towards the future. I just enjoy the time I have now with my mom.
What would you like to see happen (whether you think it can happen or not)?
I’d like to see more professionals working with families, and more understanding and compassion given to patients. When mom’s unit is on lock-down, because of illness, the families should be allowed in at all times. My mom’s unit has closed at least 3 times in the 2 years she’s been there, and usually for a 10 to 14 day period. We should not be separated for that long and I feel this has to change. We would love to have cameras in the units, so that families can view at any time from home. This would relieve any anxiety we feel and ensure transparency and that proper care is being given by staff. Our loved ones should be cared for with compassion and have their dignity at all times. We should be asked questions like: Is it ok that a male nurse or PAB changes your mom? Not once was this voiced to me.
If everyone were to care for the patient as if she/he were their mom or dad, things would be so different. Most times, when I arrive at the residence, I have to change mom, and I wonder how much longer she would be sitting in a soiled diaper if I had not shown up. I am usually told that she would not allow them to change her. I hesitate to make a complaint because these are the people I am leaving her with. It’s a no-win situation that we are caught in. When you consider the stress and sadness I leave with and bring home to my family…it all rolls into a great big ball of guilt. There truly should be a different way of running these homes. I believe if family caregivers were in charge, things would change for the better.
Anyone wanting to connect or share experiences with Sue can contact her at suebuck [at] gmail.com.