How my family understood dementia through my wife’s journey

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.