Although nobody in my immediate family has ever had dementia (cancer is our family malady), I care for my friend Barbara a couple of times a week.
Barbara has dementia and she is only 69. Over the years it has become more advanced, and although initially not knowing a lot about it, my learning curve has been exponential.
For clarification, dementia is an umbrella term for a range of symptoms that affect cognitive abilities.
Alzheimer’s disease is a specific progressive brain disease and is the most common type of dementia. My own definition of both is a lot simpler. Devastation.
This is also what I consider to be the ultimate test of marriage vows. If you are a fan of black or white. Buckle up for a gargantuanity of grey.
To unpack this heavy luggage for me, Renee Clarke, the manager of Alzheimer’s Whanganui, rode to my rescue.
My initial question was about the response from both people in a relationship when there is a diagnosis.
“No single response is typical. Some feel relief at finally understanding what’s been happening. Others feel fear, sadness, or denial.
“It’s common to begin grieving not just for the future, but for what’s already quietly changed. Every couple’s response is different — and that’s okay”.
Planning early is a key piece of advice that they give. Striking while the iron is hot when it comes to discussions about long-term care plans, Enduring Powers of Attorney and getting much-needed support in place.
It requires honest, difficult conversations. The other emotion you may not think of straight away is guilt.
Guilt from the person in the role of caregiver.
They have to strike the unenviable balance between maintaining their own life while caring for their partner who didn’t choose to give up theirs.
Renee sheds a little light on this as well.
“Many partners struggle with guilt as they continue doing things they enjoy — visiting friends, going to the gym, or taking a break - especially when their partner can no longer participate. But self-care isn’t selfish. It’s necessary.
“It’s very common for carers to feel torn between being present for their partner and holding onto their own identity. But looking after yourself is key to avoiding burnout, resentment, or exhaustion — all of which can affect the quality of care you give”.
My Barbara gets extremely anxious and agitated when she has to choose something to eat.
It’s too much pressure. She doesn’t know what side of the car to get into and she can’t remember what we have done five minutes earlier, but in the midst of this there are moments of clarity where she shares her sadness about her situation.
Telling me about the day she was told she could no longer drive was particularly sad. It’s like watching the petals fall off your favourite flower one at a time.
Music helps Barb remember her younger days. Her favourite shop to go to is Bed, Bath and Beyond because she likes to touch the soft blankets and dressing gowns, so I take her there.
I paint her nails so she looks special and I take her to get her hair done for the same reason.
One of the things I think is important is for her to maintain her dignity.
I genuinely care for her and like her and I feel grateful at this stage she still knows who I am and can take comfort from me being around.
This will change. Even thinking about that makes me want to cry.
I’m the girl who likes things tied up in tidy bows. That’s not possible here, but how does anyone know when it’s time for dementia-specific residential care?
What is the long-term diagnosis? How do we deal with the family? What is the timeline?
How can I make their life manageable? These are all normal questions and Renee and her team can help you with the answers. They are angels.
Words are one of my favourite things, but so is learning. Tragically, words are eventually not going to suffice.
I’m learning that touch can, photos can, eye contact can and my own manner and reactions can.
I will also take a leaf from Barb’s book when she says there is no use being a moaner, because nobody wants to be around them.
She is actually a joy. I don’t know how much longer I will get my days with her, but I will cherish them.
Renee, from Alzheimer’s Whanganui, says it beautifully.
“Even as language and memory fade, connection is still possible. Support is out there — for both you and your partner. You don’t have to do this alone."
If you are someone you know needs help:
Phone: (06) 345 8833
Website: alzheimers.org.nz/whanganui
Email: admin@alzheimerswhanganui.org.nz
Whanganui-based Nicky Rennie returned to her home town in 2018 while celebrating three decades in broadcasting. She has written a column for the Whanganui Chronicle since 2021.
