How my family understood dementia through my wife’s journey

An older couple reading the paper outside together.

My wife Jillian (Jilly) is 68 years old. Her father died from dementia. Jilly is the eldest of 8 and enjoyed a privileged upbringing.

She became a nurse, then left to travel the world, returning to start a fashion company in Sydney with her sister. We were married in 1982. Jilly loved art, fashion, design, colour and had a great eye for style and elegance.

We have 4 children and remain a very close-knit family looking out for each other and fully engaged in Jilly’s welfare and ongoing quality of life.

Warning signs of dementia

The early warning signs of dementia in Jilly’s case were very subtle, and started in her late 50s.

  • Making off-hand comments about people or issues
  • Forgetting where she was going
  • Accusing me of doing things that did not happen
  • At the fashion boutique where she worked, Jilly started struggling to balance the books each day.

Eventually, she lost her job as things were getting worse. My kids were aware of these hiccups but I shielded them from many of these early signs.

The difficulties continued forcing me to involve the kids. This was a watershed moment for the family as we could no longer avoid the signs. Jilly was formally diagnosed with Frontal Lobe Younger onset Dementia (FTD).

Life changes after dementia

I realised very early in our dementia journey that life would never be the same again. We were travelling in 2 parallel worlds, and sadly, her old world was slowly disappearing.

The early stages with Jilly living at home with me were tough. Our husband and wife connection was changing month by month.

It was hard for me to stay composed as her behavioural changes became worse. As her condition progressed, so did my anxiety.

Finding new ways to communicate

Years later, I finally understood that I was asking Jilly to communicate and react in my world language.

In reality, my world language was no longer hers, so I would have to find another way to communicate with her, otherwise I would lose her forever.

No one actually tells you that you need to learn the language of dementia, because there isn’t one.

It is not like learning French or Italian. It’s more about engaging with all your senses, touch, eye contact, position of the body (standing or sitting), spirit and humour.

The key is to understand where the person is in their dementia journey. Each stage of dementia requires a different care profile. The type of care changes with the progression of the disease.

So, you need to be fully engaged all the time, watching, asking questions. Dementia requires constant effort and vigilance.

Here are 10 things to bear in mind when you are caring for a person with dementia:

  • Agree, never argue Ask, never command
  • Distract, never shame
  • Reinforce, never force
  • Redirect, never reason
  • Reassure, never lecture
  • Encourage, never condescend
  • Repeat your words. Never say ‘I told you so’
  • Reminisce. Never say ‘remember’.
  • Do what you can, never say ‘you can’t’.

Getting more support at home

In the first few years, Jilly could stay home by herself and I would check in on her by phone. We managed for some 2 years with the odd hiccup.

The signs of dementia started getting worse after that. One time Jilly burnt her arm while cooking, another time she forgot how to work the washing machine. Yet another time, she couldn’t find or work her phone and computer.

There were also times when she left the house for a walk without keys, went to buy food without money, or she would cross the road without looking, or engage with complete strangers.

I liked the Mable website as it was simple to navigate. I joined Mable and have had great success in finding Jilly quality support workers, all of whom were great people. Mable is my favoured platform.

For me, support workers need to be qualified, have a security clearance, and have experience in dementia care.

People skills in the dementia space are rare. When you find a support worker who can connect with the person with care, humour, spirit and understanding, you keep them.

Getting more complex care

As the dementia progressed, it was clear we had to find a full-time care facility for her.

All through the journey we remained engaged with our specialist and care team. We made sure each step had professional eyes watching and advising.

It is vital to have a good GP, occupational therapist, podiatrist, neurologist, geriatrician, physiotherapist, and high-quality carers and specialist clinicians. They understand the stage and type of dementia so the right carer can be appointed.

Now after 3 years in residential aged care, Jilly’s stage could be described as advanced dementia. Her cognition is very poor and she is in a wheelchair. It’s also likely she doesn’t recognise family or friends. We still have family days, though, where the entire clan with grandkids gathers.

However, this can be overwhelming, so you need to redesign your entire approach to family days and outings.

Caring for a person living with dementia becomes very complex once they lose their ability to walk. Falls are serious risks as they lose their balance.

Being a carer of a person living with dementia

It can be hard on carers and family members not to understand dementia, and then to cope with the diagnosis of dementia.

In my case, I took the lead with my kids acting as my safe harbour, my hope and my inner circle team behind all decisions.

Each family member will cope in their own way, everyone has their own reaction and defences to keep them safe and sane. The family circle or other inner circle will evolve.

Depending on the circumstances, it may be a non-family group or a single person. Keep them informed throughout your journey, don’t keep it to yourself. Share the journey with those who want to be engaged.

As a family, we make all the milestone decisions together. I collect the information and together we discuss and agree on the course of action.

With dementia, you can expect constant change and you need to be ready for it. At any stage consult your doctors and allied health specialists to get help. Read as much as you can, but don’t believe all you see on the internet.

Advice for dementia carers

For those who are caring for a person living with dementia, here is what helped me and my family.

  • Nominate or allow one person to take the lead. Then other people will follow. This becomes your inner circle team
  • See your GP and confirm a diagnosis and the type of dementia.
  • Build a team of specialists: GP, occupational therapist, geriatrician, neurologist.
  • Find a care group platform, get your NDIS funding in order. Confirm your status to be part of the NDIS, review finances and get your financial position sorted. Care costs money.
  • Get as much information as you can about dementia. Each type has a different pathway and side effects.
  • Prepare yourself mentally and physically. Sort your routine out so you can preserve your spirit and integrity.
  • Caring for a person living with dementia at home is tough. Get help and invite health professionals into your home to review how the person is doing.
  • Understand that carers burn out so be aware of the signs that the carer needs to take time off.
  • Keep learning the language of dementia. Develop your own and keep searching for those connections.

There is no map or solution for those living with dementia. it is a journey not well travelled, so be prepared for a fight with the thief that is dementia.

Life is a gift not a right so use every moment with grace, spirit and commitment to connect with those living with dementia.

Editor’s note: image is for representational purpose only.