How do you define true friendship? For me, it’s what happens when you are there to provide unfaltering support to someone, something I never questioned when my friend Helen was diagnosed with dementia in 2017.
It’s also a quality I first noticed in Helen when we met over 20 years ago at an Alzheimers Whanganui meeting. When a request was made for help with fundraising, Helen, new to the committee, offered if someone could assist. Impressed with her willingness, I joined her.
We took charge of the street appeal and various other community initiatives. Her organised and methodical ways were a perfect match to my lateral thinking. Our encounter that day led to a much-needed boost of funds for Alzheimers Whanganui, and a friendship we both treasure to this day.
Both of us managed facilities for the elderly, so we had a lot in common. As a Sister of St Joseph, Helen managed a supported living facility (where she lives now), and I ran a rest home down the road from her. We became walking companions after work each day.
Some years later, Helen noticed she was having issues with her memory during a Conference in Australia. While she enjoyed the presentations, she struggled to remember their detail soon after each one. Once home, she told me and I offered to go with her to the doctor, who, after various tests, diagnosed her with dementia. I remember Helen’s reaction, one of relief to be told that there was a problem, and that she wasn’t “imagining it”.
Helen’s proactive, positive attitude surfaced immediately and together we went straight to the Alzheimers Whanganui office for help and information. Her mantra nowadays is, “live in the moment”. She always looked for the positives, and still does. She’s an active person in her community, still volunteering locally and helping others on the dementia journey through her role on Alzheimers NZ’s Advisory Group, a group of people living with dementia who guide and support the work of the organisation.
One of my other favourite things about Helen is that despite being one of the kindest people I’ve ever met, she knows her own mind and is direct and to the point. This was put to the test, with, of all things, a cat. It resulted in me writing my first children’s book, Jesse Makes a Move, with Helen as the lead character!
The story was inspired by a real cat, named Jesse who insisted on visiting Helen, despite her being allergic and not too fond of him. Eventually, Helen’s allergy diminished and Jesse and Helen became firm friends. When Jesse’s owners moved away, they asked Helen if she would like to adopt him. Helen couldn’t believe her luck. My daughter Paula illustrated the book, and we were all delighted with the end product. (Even Jesse, we think!)
These days, Helen sometimes needs reassurance to speak out. Dementia has definitely had an impact on her confidence, and while she may seem the same to other people, I can see a change in her reluctance to contribute to group discussions, so we just find other ways for her to be involved and heard.
I think the single biggest tragedy of dementia is that we tend to dismiss people so quickly, or even discuss them as though they aren’t in the room. I remember one gentleman I knew when I was working as a nurse in a medical ward, who did not speak or make eye contact and thus tended to be ignored by the staff and other patients. I always talked to him, and he learned to trust me. I seemed to be the best person to soothe and help when he was feeling agitated. On my last day at that job, I said goodbye to him, and I’ll never forget the moment he raised his head, looked directly at me, and said, clear as day, “You take care of yourself!”
Everyone’s journey with dementia is unique, just like we are. Helen has chosen to share a lot of hers, “anything to help the cause”, as she says. I’ve learned a lot over the years, and continue to learn. My biggest wish is for everyone to see the person, not just their dementia.
To do that, we need to be more comfortable with the idea that while someone may change as a result of dementia, they are still the same person inside, a person who may just need some help every now and then.
People often refer to me as Helen’s “support person”. To me, we’ll always be friends first. If we have someone in our lives who is experiencing dementia, we have the opportunity to be support people, to respect them for who they are, and to walk alongside them on that journey.
Aotearoa, he aro nui ki te hunga mate.
Published by Alzheimer’s New Zealand – 13 April 2022