Loving Someone Living With Dementia

Renske

Living with disability is different for every person. For some, factors combine so that telling their stories is challenging. This month, MAP reached out to two clients and their families, exploring their experiences with loving someone who is living with younger-onset dementia.

Renske and Philip

For Renske and her husband Philip, a diagnosis of dementia has not stopped them from doing things they love. Philip shared the importance of having positive activities and experiences every day, both together and separately. Sharing activities builds happiness and connection for Renske and Philip, while having separate activities provides support to them both.

“They must always have the free spirit. Do not extinguish it!” Philip shared, saying this was the most important thing he’d like others to know about loving someone who is living with dementia.

Staying positive and educated are also important in Philip’s view, sharing how vital it is to maintain a positive approach, and to keep learning and stay informed about the progress being made in dementia research. “Learning to develop a positive attitude to the challenges of dementia,” Philip replied when asked about a positive experience he’s had in his caring role. “Ensure you can keep developing knowledge on dementia as it is ever changing in a positive direction.”

Michael and Carmen

 Michael lives in a SIL home (Supported Independent Living), and his daughter Carmen acts as his nominee. “I am grateful that my dad is in a safe place, and healthy and well within himself,” Carmen said. Sharing her struggles to secure this safe, supported home for Michael, Carmen shared how she maintains her own wellbeing: “I have some hobbies and some non-negotiable practices, like exercise and sleep routines. I have my own counsellor I can reach out to if needed, which I used a lot at the start of Dad's diagnosis when I was trying to navigate all the systems, and the grief that goes along with a progressive disease like dementia.”

Battling through the Tribunal to ensure Michael could access the supports he needed with NDIS, Carmen said the team of supports around her at that time was amazing, and has led to another huge positive: “When I visit Dad, he is always so well looked after and content – even though he is no longer verbal, I can tell he is content and feels safe in his home, which is all I could ask for.”

A common challenge

When asked about challenges they face as carers, both Philip and Carmen shared only one – working with the NDIS. Sharing how changes within the system can impact the funding provided from one plan to another, Philip said, “changes within the NDIS funding system can affect a happy program”, was his main concern. Indeed, this can have wide-reaching impacts if structures, routines and opportunities shift unexpectedly due to funding changes.

For Carmen, her concern was also around the stability of the funding available to Michael. “In the beginning Dad was homeless for a period as the NDIS had revoked funds from Dad's plan. I did suffer some major burnout as a carer over this period,” Carmen said. Juggling family, university, work and caring, Carmen shared how stressful the “constant changes in the way funding is accessed or how much funding was allocated” were to navigate.

Positive outlook

“Put your own ideas of what it may be like to one side, be open to change and love unconditionally. It is an ever-changing disease so taking one day at a time is important.” - Carmen

For all of us, life comes with many challenges and unexpected curveballs, disability-related and otherwise. It’s natural to struggle with adjusting and accepting changes, to deal with grief and any other emotions that might be stirred up. Keeping a positive outlook isn’t always easy, but as Philip and Carmen show us, it is so important for continuing to live a happy, fulfilled life.

Michael