The Power of Speaking Up

I wasn’t always open and honest about my experience as a care partner for my husband, Bruce. In 2016, Bruce was diagnosed with young-onset Alzheimer’s at 56 years old. I hadn’t connected his symptoms with a diagnosis of Alzheimer’s, and we both felt denial and fear."

 “At first, we kept his diagnosis completely hidden. That was Bruce’s choice: he was embarrassed and afraid of what others would think of him. But once Bruce and I accepted our reality, we decided we were going to live the best life we could. And we did, for a while. Later in 2016, we opened up about his diagnosis, and we travelled and spoke publicly about young-onset Alzheimer’s. 

              Lisa Raitt and her Husband Bruce

I was open about Bruce’s diagnosis over Twitter, too. Last year, I shared a lot of the good stuff. My posts seemed to say, ‘Our life is great and we’re doing what we can.’  

“But total openness about what was truly happening for us took time, and last winter, I knew I couldn’t keep looking at his diagnosis with such optimism. For a while already, Bruce had been hallucinating and no longer understood he had Alzheimer’s. 

“His behaviour became aggressive. I learned that our experience with this stage of young-onset Alzheimer’s — late-stage six — was very similar to others’ experiences. At that point, I knew I had to talk about it. I felt very strongly that I shouldn’t sugar-coat what happens for a lot of families at this point of the diagnosis.  

“The number one reason I knew I had to be so real was because I was afraid of the aggression. I was seeking help, and by putting our reality out there, I ended up with tips and advice.  

“I also want people who are in positions of power to understand what caregivers go through emotionally and physically. This past New Year’s Day, Bruce’s behavioural responses had turned to full-on aggression out of the blue, and dangerously so. For our safety we called 911, and for now, he’s in the Behavioural Neurology Unit at Baycrest Health Sciences, where staff understand dementia. 

“Caregiving is willingly and lovingly taken on, but the reality is it comes with exhaustion, stress and guilt. Before his hospital admission, I hadn’t slept through the night in six months. I’m still sore.  

                           Photo Courtesy Canva

“By being so honest, I came to realize I wasn’t alone in experiencing aggression with this type of Alzheimer’s. Now I am even more determined to make sure we show the negative side of dementia to increase awareness of what the care team experiences. If we’re self-interested in making sure that things will be better for us personally in the future, then maybe we’ll all fundraise more and rally together to effect change.” 

3 Suggestions for Care Partners, from Lisa Raitt  

1: UNDERSTAND THE STAGES. Raitt says it’s important to educate yourself, be prepared and know what’s coming next. 

2: FIND SUPPORT. Raitt is part of a group based out of the United States called HFC, formally Hilarity for Charity. Once a week, she connects with other care partners whose spouses live with dementia to talk, trade stories and offer support.   

3: ASK FOR HELP. If the person living with dementia shows aggressive behaviour, Raitt says to reach out for help. Know that it’s a cry for help from them, but it is dangerous to you.