Dementia diagnosis places huge pressure on families and support services - Nicky Rennie
I received a request to help with a major fundraiser for Alzheimers Whanganui.
This was a very easy “yes” from me. It is a cause that is very close to my heart. Just Looking is the major sponsor for A Night to Remember. I will be the master of ceremonies and fashion icon Karen Walker is the guest of honour.
My passion to help was inspired by the woman I used to help care for who has dementia.
It was a huge learning journey for me. We went on adventures. I was determined that I would unlock the little girl in her.
We had some wonderful moments together.
We drove to Palmerston North for her favourite meal. We sang in the car to her favourite music and I just let her talk about anything and everything. That’s important.
I’m not saying that it was always easy. When she had to choose something to eat, she found it very stressful, so I learned what she liked and didn’t like to eat to remove that pressure from her.
Knowing her made me a better person.
My highlights with her were stealing daffodils from the Bason Botanic Gardens (sorry) and getting a speeding ticket while we were singing to the Eagles on the way back from Palmerston North. Treating her to hair and nails and generally trying to make her feel special.
But always in the back of my mind are the family and friends who are the support network. I was able to clock off. Her family can’t. The pressure is immense.
In my initial meeting to discuss the upcoming event, I sat next to Renee Clark, who is the manager of Alzheimers Whanganui. Renee is an infinitely likeable person who has a very deep understanding of the pressure families go through with this diagnosis. There was a word she mentioned that resonated with me. That word was shame. I thank Renee very much for helping give me clarity.
“Unfortunately, there is still stigma around dementia, often because of a lack of understanding,” she said.
“The more openly we talk about dementia, the more we can normalise it and reduce fear and shame. Around 83,000 people are living with dementia in New Zealand, with approximately three people developing dementia every hour.
“People respond to a dementia diagnosis in many different ways. There can be shock, sadness, uncertainty about the future or sometimes relief at finally having answers. Everyone’s response is unique, just as every person’s experience of dementia is unique.”
I’m not sure why anyone would feel shame around something they have no control over. But I do understand that it is life-changing for families.
It’s not something that happens fast either. It takes years. It’s cruel. It’s devastating. It’s fierce, and I respect every single person who lives with this, their family and services in our community that help. Families who get this diagnosis need massive support. The person they knew and loved isn’t the same.
The ever-positive Renee explains: “A diagnosis does not define a person. Dementia can change relationships and there can be a real sense of loss for families as they adjust to those changes. But there can also still be connection, laughter and meaningful moments.”
I think Tony and Deborah Guthrie who own Just Looking, and Karen Walker and Renee Clark, should be exceptionally proud that every single cent raised from this event will go to Alzheimers Whanganui. It is funded from a mix of government contracts, grants, charitable trusts, community fundraising and donations. A tough ask when 83,000 New Zealanders live with dementia.
Yesterday in the supermarket, I saw a gentleman whose wife had died from dementia. He looked shattered. The thing that everyone needs to understand is that when one person is diagnosed, everyone suffers. They are all on a journey and it isn’t very nice.
I’m grateful for the opportunity to make a difference. One Night to Remember.