For Lynette Price, being a carer of a loved one with MND is about making the most of their moments together.
She and her husband care for her 1-year-old granddaughter regularly, bringing brightness to their lives and a good opportunity to head to the local pool for some fun and fitness despite the challenges MND brings.
Her husband and his family sadly experienced the familial form of MND, and have a strong family history of the C9orf-27 gene being present. Peter is now experiencing MND and frontotemporal dementia (FTD), and has already lost his mother, brother and sister to MND. Of Peter’s 5 children, one has been tested and thankfully doesn’t have the gene.
Lynette had previously had experience as a carer for her own grandmother who had Alzheimer’s, after her mother and aunty asked for her help them with caring for her. She also later cared for her mother.
“They didn’t have any of the opportunities for help we have now,” Lynette said.
“The number of people who have contacted me, social workers, MND NSW staff, allied health, well it’s great knowing there’s that support.”
Lynette is someone who ‘needs to know’, even if it’s bad news. It’s an outlook she had for herself as she fought invasive breast cancer in 2020, and now has for Peter as he battles motor neurone disease and FTD.
“I’ve done all the research on MND, and I know the FTD will be the worst part for Peter,” she said.
“Sometimes when he does something he may not have done a few years ago I have to stop and remind myself that Peter can’t help it. It makes you respond differently to his behaviours, and for the sake of being fair-minded and keeping the peace you let some things go, knowing this wasn’t what he did before.”
Lynette tries to keep their lives in a routine, enabling Peter to do as much as he’s able to.
“We go shopping together each week, I try as much as possible to stick to the list and Peter contributes,” Lynette said.
“Peter goes to respite care sometimes, next time he goes, he’s going to cook them Mexican. It’s his special dish, and he’s pretty good at it. He doesn’t do a lot of cooking now, so it’s a treat that he can still do the Mexican dish.”
Lynette said Peter ‘likes to go for walks, and to see the ocean’, and they try to get out and about locally, and for the first time for Peter, internationally.
“Recently we went to Manly. It was a big day out with bus trip, train trip, ferry ride and more to get there, as we’re in Punchbowl,” she said.
“We also like going out and having lunch or dinner with family - recently went to his daughters place and had lunch.”
“We went on a cruise together in April with my middle son and his family. They wanted to say thanks for looking after their child. We went to Noumea, it was the first time out of the country for Peter. The cruise was something new, and hopefully in January we’ll also get to go to New Zealand,” she said.
“You have to have things like that to look forward to, otherwise you think ‘what’s it all for and where’s it all going?’. Sometimes I get a bit stir-crazy.”
While she said she ‘doesn’t really have a philosophy for coping’, Lynette keeps a positive outlook by ‘making the best of the day, today’.
Taking part in activities she finds enjoyment in is also important for staying energised and able to care for others. While the former British dance champion no longer hits the dance floor, she does enjoy writing and watching movies, and keeps up with hobbies like macrame and crocheting, attending a local craft group for chats and creativity when she can.
“We don’t go out dancing anymore, 2-3 yrs ago I had to have an operation on my foot so I can’t anymore. I really enjoy writing – I wrote a book, I’ve written a lot of poems, I wanted to put together information and stories for my family,” Lynette said.
“I go whenever I can to our craft group, and took my little granddaughter there recently, they loved having her there,” she said.
“I like going to the movies, but Peter doesn’t, so when he is at respite care I’ll sometimes go out there and take my 16 year old granddaughter along, she and I are very close.”
Lynette also finds community and support by attending Carer Kitchen Table events held by MND NSW.
“One of the really helpful things I’ve found during this MND journey is the Carer Kitchen Table evenings,” Lynette said.
“Everyone on there has my utmost admiration, many are dealing with very serious things and the person they are caring for has had symptoms that have progressed quickly,” she said.
“I’m hearing and learning a lot of things there which is good, I find it a wonderful help.”
