Support Helps Families Cope with Dementia
Jen's mother and father were both diagnosed with dementia within a short time. She believes that every carer should access the support provided by Dementia Canterbury and the new Canterbury Brain Collective facility will enable more people to do this.
Jen Evans’ father Jeff was put into care not long after being diagnosed with dementia. He had an accident, ended up in hospital and that was it.
It wasn’t long after the Christchurch earthquakes and the family was already struggling with the impacts on their home and businesses. They needed some support and they found it at Dementia Canterbury.
“Mum and I went to a support group and it was amazing – one of the best things we could have done. My mental health had really been knocked around and dealing with this on top of everything else was tough. Knowing that other people were going through the same thing made the situation easier,” Jen says.
Jen learned a lot from attending the support group, particularly about communicating with people who have dementia.
Unfortunately, not long after her father’s death, she also began to recognise the signs of dementia in her mother Helen. This time she wanted to be proactive.
“It’s a different picture with Mum. She went through a lot of stress caring for Dad, but because we’d been through it once before, we were better prepared.”
Jen and her mother attended the ‘Living Well with Dementia’ group, run over six weeks at Dementia Canterbury for people with the condition and their carers. Her mother also attends regular brain ignition groups. Jen says she doesn’t know how she would have coped without the support of the not-for-profit.
“Unfortunately, not long after her father’s death, she also began to recognise the signs of dementia in her mother Helen. This time she wanted to be proactive.”
“When you’re going through this, it can feel like many of your usual support people just don’t understand. There’s also a lot to learn and Dementia Canterbury offers so many different types of support.”
Jen believes that every carer should attend the courses run by Dementia Canterbury, but unfortunately due to the organisation’s current facilities, this often isn’t possible. The workshop rooms are small and it can be hard to find parking.
“I’ve seen people unable to find a park nearby, which is important for their parent or partner with dementia, and then they just drive away. I’ve also seen people struggle to access the rooms because of where they are placed – it’s like a rabbit warren.”
Jen is enthusiastic about Dementia Canterbury’s plans to establish a new, modern centre as part of the Canterbury Brain Collective and believes the new initiative will be a big asset to Canterbury.
“If they just had bigger and better facilities, they could provide information to so many more families. They could also help the community understand how to interact with and treat people with dementia in a way that is respectful and caring.”
Gym Service Makes all the Difference for Couple with MS and Parkinson’s
After being diagnosed, Robin and Jan’s neurologist recommended they start attending the gym to increase their mobility and balance. They were referred to MS and Parkinson’s Canterbury and have both seen an improvement as a result of regular exercise.
Robin England found out he had Multiple Sclerosis at the age of 70. 18 months later, Jan - his wife of over 30 years - was diagnosed with Parkinson’s disease.
The couple knew that old age ‘wasn’t for sissies’ as they put it, but to discover they both had neurological conditions certainly ‘threw a spanner in the works’.
“We were planning to take care of each other as we got older. Now we’re not so sure what the future holds for the two of us, but we have a good life and we’re lucky we have such good family and friends to support us,” Jan says.
After being diagnosed, Robin and Jan’s neurologist recommended they start attending the gym to increase their mobility and balance. They were referred to MS and Parkinson’s Canterbury, a not-for-profit that provides information and support services.
The couple now go to the gym two to three times a week, where they are supervised by a physiotherapist. They’ve both seen improvements from regular exercise and each have a programme tailored to their needs.
“I’d never set foot in a gym in my life but it’s important to exercise when you have MS. I’ve got a programme to maintain my upper body strength so I can get in and out of my chair more easily and can get up if I fall – basic things like that,” Robin says.
Robin has also received speech therapy and attended two courses at MS and Parkinson’s Canterbury to help him manage his fatigue and connect with other people who are living with MS.
“We were planning to take care of each other as we got older. Now we’re not so sure what the future holds for the two of us...”
While extremely grateful that MS and Parkinson’s Canterbury exists, Robin and Jan have encountered some challenges due to the lack of space and equipment, and general run-down nature of the organisation’s current rented premises.
“It’s a very cramped space in the gym and you end up waiting around for the machines for a long time. There is also nowhere to sit while you’re waiting, which is difficult for people with MS and Parkinson’s, who struggle to stand up for long periods of time. The same goes for the workshop spaces, which are very small and lack room for a large group with walkers and wheelchairs,” Robin says.
The couple sees a definite need for a new and better building, with larger educational spaces and a modern gym. They are excited by MS and Parkinson’s Canterbury’s plans to establish an improved local facility for people with neurological conditions as part of the Canterbury Brain Collective.
“The people at MS and Parkinson’s Canterbury greet you like a long-lost friend and the support they provide is huge. Having the facility to match would make a big difference to people dealing with a diagnosis. Sometimes it’s a bit scary and it’s so important to have a welcoming place to go, with people around who really know what you’re going through,” Jan says.
Couple Encourages People to Seek Support with Dementia
Being diagnosed with dementia at 63 was an unexpected blow for Martin Todd and his family. His wife Lynda wishes that they’d asked for help sooner and wants to encourage other families to utilise what’s available.
For Martin Todd, the most frustrating thing about having dementia is not being able to drive a car.
The self-confessed ‘car nut’ ran a successful car sales business for many years and losing his independence was an unexpected blow.
“The day I was diagnosed I was told then and there that I couldn’t drive home. That was the thing that stood out for me at the time. I was just 63 and I didn’t think I’d have to rely on other people for another 20 years or so,” he says.
The news came as a big shock to Martin, his wife Lynda and their family. For the first few months, they tried to digest what had happened and Martin says that their initial response was to hide away from everyone.
“It was just awful - just horrific. We didn’t want to face it. It was so terribly frustrating – one minute we were having a great life and the next we were facing this!” Martin says.
After a very difficult time, which included having to sell their successful business, Martin and Lynda asked their doctor who they could turn to for support. The answer was Dementia Canterbury, a not-for-profit that provides information and practical help to people with dementia and their families.
“You don’t have to go through dementia alone. There are so many people that care and so many other people that are going through this. Don’t lock yourself away - ask for help.”
Lynda’s main concern was what Martin was going to do to fill his days. He had suffered from depression post-earthquake and Lynda did not want to see him go down that road again. Through Dementia Canterbury, she discovered that there were plenty of interesting activities in the community to keep him busy.
Martin now takes part in a memory group to keep his brain active and attends a support group for people with younger onset dementia. He also goes swimming regularly and has completed a life story and genealogy book to refer to – all with the support of Dementia Canterbury.
“All of the activities have helped tremendously and the Dementia Canterbury team have been really understanding – they’ve been a real brick for us. We’ve got a social worker who keeps in touch with us about everything that’s available that could be beneficial for Martin,” Lynda says.
The couple wishes that they’d asked for help sooner and wants to encourage other families to talk about what they’re going through and to utilise what’s available. They welcome the move by Dementia Canterbury - part of the Canterbury Brain Collective - to establish a new facility where more people with neurological conditions will be able to seek support.
“You don’t have to go through dementia alone. There are so many people that care and so many other people that are going through this. Don’t lock yourself away - ask for help.” Lynda says.