Caregiver shares personal story on web
SusanMacaulay, who returned to the Eastern Townships a few years ago after spending over twenty years working abroad in countries such as Australia, New Zealand and the United Arab Emirates, has put her formidable communication skills to good use in the form of a unique website: myalzheimersstory.com. With experience in public relations,
as an editor of a magazine for many years, as a public speaker and as the creator of other popular websites such as amazingwomenrock.com, Ms. Macaulay started this newest website almost one year ago to share the experience of caring for a loved one with Alzheimer’s Disease, her mother Patti.
Susan, who grew up in the Georgeville area, had planned to return to Canada in 2013, however, when her mother, who began showing signs of dementia in 2005, could no longer live on her own, she came back ‘home’ in October of 2011. “When I first arrived, I did a lot of things wrong. For instance, when Mom would repeat the same question, I’d say ‘Don’t you remember?’ But if the caregiver gets irritated, it just amplifies the situation,” said Ms. Macaulay in an interview with the Stanstead Journal. “I had no idea about Alzheimer’s Disease, only the general stuff, and I had never cared for anyone with a disease.”
At first, Susan’s mother sometimes showed signs of anxiety or anger towards her daughter. “But I understand now that this was a result of how I interacted with her. Because you’re told they will be anxious or aggressive, you don’t look at your own behavior. If someone has anxiety or aggression, they give antipsychotics to sedate the person, but the side effects of those are confusion and aggression!”
“As caregivers, we want them to behave. But their reality is different, so there’s no point in trying to fit them into our reality. We have the capacity to go into their world; that’s more effective than trying to force them to be in our world,” she explained.
“With the website,” continued Susan, “I wanted to take my experiences, my stories, and share what I did wrong so others can avoid the same mistakes. Hopefully it will make the job easier for them, and easier for the person they are caring for.” It is an extensive site, filled with personal videos, instructional, inspirational and moving, of Susan and her mother spending time together, resources for caregivers, posts chronicling Susan and her mom’s journey, comments, opinions and advice from her many followers, and more.
“I also want to help people find joy and happiness in their role as caregiver, and make the lives of those with dementia more joyful and happy.” The videos on Susan’s website of the musical sessions that her mother has with local musician Eric Manolson are good examples of how wonderful ‘alternative’ therapies can be in the lives of people with dementia.
Susan explained how her ‘blog’ differed from other internet sites devoted to Alzheimer’s Disease and dementia. “It’s different reading about real-life stories instead of lists of do’s and don’ts. On my website you can see how it sounds, what it really looks like. That’s better than reading a pamphlet.”
Going back from her role as an internet blogger to that of caregiver, I asked Ms. Macaulay what was hardest, in her experi- ence, about being a natural caregiver. “The hardest thing is everything! The most important thing is to get help because you can’t do it on your own. And, understand that you will make mistakes. Don’t wish they could be who they were, but love them for who they are today. The person is still there; don’t start mourning their loss before they’re even gone.”
Facing this experience with an open mind and heart has changed Susan’s life in ways that have surprised her. “I’ve been healed by this process; I found my ability to give unconditional love,” she said, explaining further: “Mom could be difficult, but I learnt not to be affected by her criticisms. They didn’t matter because I was in a caregiving role and she was vulnerable.”
“There has been a tremendous amount of healing in our relationship. She has given back to me in ways I didn’t expect. You need to have an open mind. If you think the disease is a horrible death sentence, it’s harder to see the possibility of positive outcomes.”
‘Webpreneur’ Susan Macaulay, whose Amazing Women Rock website is followed by over 70,000 people worldwide, has started another website, myalzheimersstory.com, to share her experience as a natural caregiver.
Susan Macaulay, seen here at her home in North Hatley, wants to share what she’s learnt about caring for a loved one with dementia.