. Laughing is known to offer some relief from deep sadness and loss. It can transform fear and helplessness.
For the 18 women at a dementia support meeting in Hamilton, laughter is an antidote to the nightmares they deal with every day. They include being woken through the night by partners intent on going for a walk or drive, both of which are unsafe. Of verbal and sometimes physical abuse. Or lack of love, empathy and sometimes recognition.
Some are unable to leave their partners alone. The time they have to themselves has been reduced to minutes as their partners track them from room to room. As well, they may have to contend with cruel comments from people who deny there is a problem. One woman reveals her husband’s family has cut off all contact with her because he has now gone into care. “They accuse me of abandoning him.”
Another woman quips, “I’m thinking of getting a t-shirt that says, ‘If you think my husband is good, you can have him for 12 hours.”
Group organiser, Robyn Riddle has heard all the stories. She says the monthly gathering is a place where women feel safe to tell their stories and laugh without being judged. “There is huge trust and understanding.”
Riddle has a background as a social worker with 12 years’ experience including seven years working with the Memory Service under the umbrella of the Mental Health Service for Older People (MHSOP) specialising in assessment and support for dementia patients and their families.
She formed the support group in Hamilton 2009 after seeing a need to help women whose partners had been diagnosed with younger onset dementia (people aged under 65) and who were still juggling work and families. Last year, of the nearly 83,000 people with dementia in New Zealand, 6800 were 64 or under. The numbers are increasing.
The ages of those at the support group range from early sixties to the mid-eighties. Some have been coming for years.
More than half still care for their partners at home.
Riddle is in awe of their resilience. “They don’t walk away when things get really tough. The ‘in-sickness- and-in-health’ aspect comes into play and they stay to care, even through extreme sadness, grief, loss, anger and guilt – even guilt at showing anger – come into play. Verbal abuse and lack of empathy can be severe and very hurtful.”
Love takes a different form as time goes on, she says. “It is certainly not a love of equals. It looks more like patience, practical help, hands-on care and effort to retain a partner’s dignity offering reassurances and acting as their protector and advocate.”
But, when symptoms reach extreme levels and a person has to go into care, emotions change again. “Some women say they fall back in love with their partners once the burden of 24-hour care has been lifted. Sadness and compassion come into play. But so does guilt.”
We asked four people to tell their story.
‘I told him’ love lies’ to avoid confrontation’
Jackie, 75 and Dave Pinfold
Dave and Jackie Pinfold. Dave was diagnosed with Alzheimer’s before his 70th birthday,
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I met Dave when I was 17. We were engaged a year later. Dave was a builder, a practical man who could fix anything. He was socially active, loved his rugby (he played for Waikato) and doted on me and the kids. One day at work, he was struck on the head trying to single-handedly shift a roof truss. He complained of headaches, but it wasn’t until a month later that a scan revealed a brain bleed. He became increasingly befuddled. He couldn’t speak at our daughter’s wedding. We put it down to nerves.
It was about this time, I realised I was no longer his wife, I was his fulltime caregiver … The man I had fallen for as a teenager was no longer there. I admit I got to the stage where I didn’t like him very much.
Jackie Pinfold
Three days before his 70th birthday he was diagnosed with Alzheimer’s.
Initially Dave was aware of his condition and happy to tell people he had Alzheimer’s. But that changed over time. His mood swings became more erratic. He got angry more frequently. I learned never to disagree with him. I told him, ‘love lies’ to avoid confrontation.
When I was 65, I retired as a kindergarten teacher, but I continued to work part-time and we enjoyed going out socially. Contact with friends gave me energy. Covid was hard. Dave became increasingly unwell. We moved to a retirement village so I didn’t need to worry about maintenance on the house, which Dave would normally have dealt with.
At the village, residents would bring him home when he got lost.
It was about this time, I realised I was no longer his wife, I was his fulltime caregiver. If I showed any sign of affection, he pushed me away. I thought, I don’t even know who you are any more. The man I had fallen for as a teenager was no longer there. I admit I got to the stage where I didn’t like him very much.
There was an episode of violence and it was no longer safe for me to live with him. He was admitted to a dementia care unit in 2023. I visited him every day. It was there I fell in love with him again. The burden of care had been lifted.
Dave died six months ago.
‘I’m not sure what love looks like now’
Alison and Neil Fagan at Penola Strait in Antarctica.
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Alison. 72, and Neil Fagan, 79
On our wall there is a framed photo board. The images are of us in some of the places we have travelled to and lived in: Antarctica, Turkey, Afghanistan, Patagonia, Uganda and Peru. We were intrepid travellers. Quite fearless. The pictures remind us of those times.
We met in Wellington. I was at university; Neil was working as a civil engineer designing revolutionary bridges in an earthquake zone. He had the sharpest mind and we bonded through intellectual rigour.We also both loved travel and adventure. We also had a mutual respect for each other’s interests and independence.
When I had our first child we were living in Africa, building a city in the middle of nowhere.I nearly died during the birth and Neil dashed around finding oxygen cylinders. If he could turn a crisis into a problem, he could solve it.
Neil was diagnosed with Alzheimer’s disease four years ago. We are lucky that his symptoms have developed slowly and he is on the drug Donepezil which slows the progression of the disease. But the changes have been significant.
He was always very laidback. But that has now developed into lethargy and indifference. He spends his days reading – sometimes the same book over and over. He is welded to his phone like a teenager. He has no empathy. Once when I fell while out for a walk and injured my foot badly, he walked on with no acknowledgment of my pain or distress.
And yet, when our beloved border terrier Rafa had to be put down recently, he cried buckets of tears.
He still cracks jokes, which his grandchildren love. His long-term memory is incredible. But I can only tell him one thing at a time, like a child, or he forgets.
I know I can’t reverse the disease. I’m a former maths teacher but I have also taught anatomy and physiology. I know how the brain works. But I want to preserve as much of his mind as I can for as long as possible.
I’ve created photo books and I search out documentaries of places we have visited to remind him of our lives together.
I’m not sure what love looks like now.
When we were in Africa and circumstances were tough, someone said they believed we were the couple most likely to survive, because we would stick together.
I can’t say how that will play out now. Neil would go mad if he had to go into care. I wouldn’t be able to cope with the guilt.
‘Men don’t talk about personal experiences’
Russell and Charlene Richardson.
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Russell, 81, and Charlene Richardson, 82
My first wife was tragically killed in a car crash. I met Charlene later through a church group. We share the same Christian values.
I owned a business and when I retired at 73, we planned to travel. A friend asked me one day whether I thought Charlene was okay. I hadn’t really noticed the changes. It’s like a tree in your back garden, you don’t notice it has grown.
When she was diagnosed I tried to learn everything I could about the disease. I like to be prepared for anything. I always have food stocked up in the house and I prepare and freeze meals that can be served quickly. I’ve had to take over all the domestic tasks, but that hasn’t really been a problem. My mother died when I was 12 and I took over cooking in our house.
Charlene also has diabetes so I have to be meticulous about when she takes her medications.
I’m just grateful I can look after her so we can have more time together.
Russell Richardson
Because of the sudden tragic loss of my first wife. I feel blessed to have Charlene in my life. Despite the extremely difficult times and knockbacks, my love and care for her is unwavering.
I try to provide the very best of everything I can for the time she has left on this earth.
While our dreams for retirement and plans to travel have been shattered, I also try to maintain some quality of life for myself.
The most difficult thing is tiredness. I’m a morning person, so I like to get up early. Charlene doesn’t go to bed sometimes before 1am and I can’t sleep until she is asleep beside me. Sometimes I’m still awake at 3am. So, I’m not getting enough sleep.
Men don’t talk a lot about personal experiences. But they must face the same challenges. I find it helps to hear women describe how they are coping.
People say, “it must be hard”, but I think it is much easier than if she had cancer. I’m just grateful I can look after her so we can have more time together.
I don’t want her to ever go into care.
‘I thought about taking him his guitar, but he wouldn’t know what to do with it’
Sharon Buttimore and Wayne Reynolds in Sydney before Wayne became ill.
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Sharon Buttimore, 70 Wayne Reynolds 79
I was divorced with two boys when we met in 1989. We dated for a year before things got serious. Wayne was a really positive optimistic man and so active. He was a triathlete, he completed more than 30 Rotorua marathons, he played lead guitar in The Mods band in the 1960s, one of New Zealand’s best known bands at that time.
I noticed his mood swings first. He seemed to be turning into a grumpy old man. Five years ago he had a stroke. They picked up a vascular impairment, blocking blood flow to the brain which commonly leads to vascular dementia. In hindsight, that was the cause of his mood swings.
I feel devastated I don’t love him anymore. Before he went into care. I hated him. Now, it’s more like compassion.
Sharon Buttimore
Vascular cognitive impairment can cause issues with language, decision-making, planning and judgment, leading to aggression and paranoia. Wayne had no foresight or ability to plan. He would sleep all day and sometimes fall asleep during a conversation. He became very agitated. His volatility was frightening.
But, when people visited, he could present as normal for a short time. Some would say there was nothing wrong with him. I found that very hard.
I know the impact of brain injuries. I’m a former nurse. I ran the orthopaedic theatre at a private hospital for years, often working 14-hour shifts.
The pressure was so great I suffered PTS, a brain disorder. The left side of my brain shut down and I had to learn to walk and talk again. It took a long time to recover and I never went back to nursing. I may well be a candidate for dementia later in life.
Wayne and I are now at a retirement village. He is in the care unit. I live independently. I know he’s in the best of care.
What is our relationship like now? I feel devastated I don’t love him anymore. Before he went into care. I hated him. Now, it’s more like compassion. While I’m not responsible for his care now I still feel responsible for his wellbeing.
I miss our lives together. I thought about taking him a guitar to remind him of his days in the band, but he wouldn’t know what to do with it.
Dementia facts
There are 82,900 people with dementia in New Zealand
That figure is predicted to double by 2050
56 per cent are women, 44 per cent men
There are 6800 people with younger onset dementia (under 65)
Carers provide 62 million hours of unpaid care valued at $1.7 billion a year
Source: Alzheimer’s New Zealand https://alzheimers.org.nz/
