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Our Family’s Journey with Aging and Dementia: Coping with Love and Caregiving

Updated: Sep 1, 2023


An older man and a young girl at home. The granddaughter standing nearby and giving medicine and a glass of water to the grandfather who is sitting on the sofa

Our family fell in love with the book “Love You Forever” by Robert Munsch when our daughter was born. The heartwarming story follows a son and his mother as they navigate the different stages of life. The mother sings a song to her son as he grows up that includes the lines:


“I’ll love you forever,

I’ll like you for always,

As long as I’m living,

My baby you’ll be.”


The story ends with the mother being too old and sick to finish singing the song to her son, so he picks her up and sings it back to her. While this is a beautiful depiction of the circle of life, it doesn't necessarily reflect the reality of aging for most families.


This is our story.


Our mother passed away unexpectedly at the age of 75, and while it was difficult at first, our father continued living on his own for eight more years alone. However, things began to change when he started having trouble climbing stairs due to painful knees, resulting in him spending more time by himself as he stopped seeing friends, and he began showing signs of slowing down mentally. The final straw was the fact that he hated cooking for himself, and eventually decided it was time to consider moving into a retirement home at 85. We supported his decision, and the facility he chose was halfway between our family and my sister’s homes, which happened to be in the same neighbourhood as his house.


For the first eight months he did well but his knee issues led him to needing a knee replacement. The rehabilitation process was frustrating, and we didn’t know how to navigate the health care system. We had no control over where he would be placed, and he spent about six weeks in a place that wasn’t ideal.


It didn’t matter that we were in our 50’s and had our own kids, we saw ourselves as his children, and our father was the patriarch of the family. But as he declined, he became more and more reliant on us. This was the beginning of a role reversal from being a child of a parent, to become the guardian and caregiver for our father. It was a mental switch that was uncomfortable and very difficult for all parties involved.


As we slowly began to take on the role of caregiver, a role that we were neither prepared for nor trained, we found that we simply didn’t know how to cope. Then the pandemic hit, and it got worse because we couldn't see him. We realized he was struggling emotionally, physically, and mentally over the phone, but we couldn't be there for him due to the rules established due to Covid protocols. During the months of separation, he had constant difficulties using his TV remote and alarm clock, and even though we tried to have the workers at the retirement home help him out, he became more and more withdrawn. Months later, he had another fall, resulting in emergency surgery due to a strain on his other knee. This time, there were complications, and he showed signs of dementia. As he continued to decline, he would get angry and frustrated easily and he needed more and more help as we began to feel more and more helpless.


Eventually we were able to go into the retirement home again, and he was allowed out. We had hoped that this would be a positive change, but our father's mental and physical health declined even more rapidly. We continued to struggle, and any normalcy in our lives continued to shift and become strained. We didn’t know what we were doing, and we didn’t know how to adjust to the various needs that our father required. We were his caregiver, but we were also his chauffeur and delivery service, his companion, laundry service and schedule planner.


We felt horrible because he had always been there for us, taking care of us and nurturing us, but we were struggling learning to cope, and the weight of the role of caregiver was drowning us. Overseeing his life was like managing our own children, which we were still doing while also juggling full time jobs. Our situation was emotionally draining and physically taxing, affecting our family dynamic at home and with the rest of the family.


We did get some help. We discovered and then subsequently attended a mental health workshop that was put on from Kore Life. This helped us to learn personal mental health coping mechanisms as well as how to deal with a parent with dementia. Most important, we learned that we weren’t alone, and we shouldn’t see ourselves as failures.


If we can pass along any learning that can help someone, we need to share our story. Our biggest piece of advice is that it's essential to prioritize yourself as a love giver first and recognize that you can’t be expected to also be the primary caregiver to your parents. I don’t mean to say that you won’t be dealing with the mental and physical health issues that come with aging. Of course, you will, but you need to seek support workers to fill in the big gaps that your parent needs to have filled for their own mental, physical and emotional well-being. By doing so, you can focus on regaining a positive, loving, and caring relationship with them in their remaining years.


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