I have dementia. But dementia does not have me.

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Valarie Schache enjoying the sunshine with clear blue water in the background

Dementia Advocate Valarie Schache of Ballina is living with dementia. Here, she shares her thoughts on how to live your best life, beyond diagnosis.

“I have dementia. But dementia does not have me.

I am as yet ‘untagged’, in the sense that it still has not been determined which of the 130 types of dementia I actually have. The diagnostic process has been a slow one, particularly as I keep confounding the experts with my cognitive reserves.

I may not know exactly which type of dementia I have, but one thing I do know is that a new generation of people living with this disease are doing so productively, by staying in work for example, and taking steps to remain physically well and socially engaged. This is, in part, thanks to the many support services in place.

I know I don’t look like I have dementia. People tell me this a lot. Where the intent is kind and it’s said as a compliment, I accept it as such and proceed to try and simply educate about the condition. If the intent is unkind, I’ll morph into a pit-bull terrier with lipstick and fight to make my point.

Whatever dementia this is, it successfully cleared my contact list in days, by frightening off dozens of family and friends … ironically, just when I needed their support the most! The stigma and lack of understanding around this condition also led to me stopping doing a lot of the group-based activities I used to enjoy.

I’m not exaggerating when I say Dementia Alliance International (DAI) and connecting with a younger onset dementia counsellor saved my life. I had come up with eleven increasingly clever ways to ‘have an accident’, ensuring my insurance policy would be paid out in full, and an open coroners finding. In talking to other people on similar journeys, these thoughts are unfortunately not uncommon. It was only my love for my family, who I know would never recover from the grief if I took that path, that forced me to find an ongoing way of dealing with what I perceived to be a very bleak future.

Through my association with DAI, I co-host an online group and inform other members of the best practice and life skills that have helped me, and offer constant encouragement, especially to new members reeling from the diagnosis of a terminal disease and the stigma that results in ‘exclusion by ignorance’. It is great to be able to spend time with people who just ‘get it’, and to feel as though I can just be myself. Yes, our brains are damaged. Yes, we are different on the outside to what we once were. But we are still the SAME person on the inside, and should be recognised as such.

DAI has been so vital to me, that all Christmas gifts, birthday presents and funeral bequests will now revolve around making donations to the organisation, so I can do my bit to support a group making a massive difference with such limited funding, as the only organisation run by people who are themselves living well with dementia … our motto is “Nothing about us without us!”

The public can do its bit by becoming better informed. Don’t be part of the problem. Be educated and aware, and always be kind. It’s the Aussie way to look out for your mate, even if that mate may have had a few too many drinks and their cognitive abilities may have been temporarily impaired. As you are kind tolerant and understanding of that mate, please extend your mate with dementia the same inclusive courtesy and dignity.

So what does this look like? It’s pretty simple, really. Greet me in the same way you did before … with a smile, a hand shake or a hug. Don’t ignore me. Include me! Invite me to be part of your world. Sometimes I will say yes, while sometimes I simply won’t be able to. But either way, I love to be asked.

Even at the end stages of the disease, the person with dementia can still be meaningfully reached with a touch, a song, a prayer. During my career as an acupuncturist physiotherapist, I worked in a hospice, and as a consultant to a local nursing home. I have therefore seen what it takes to be there for a person’s final journey and support their grieving families.

My brain has limited battery power and so I have to prioritise where I expend it. I need to pace myself and rest more. I’m a ’workaholic’ and have always been kept busy by my job, the numerous committees I have been involved with, and supporting family and friends. All without the need for a diary! The diary bit, however, is something that is changing.

Since the dementia, I have started to get ‘brain fag’ … it’s a bit like the way you feel after a big exam. That’s when I know to take a step back and stop pushing myself for a bit. I distinguish between ‘brain fag’ and ‘brain fog’ by saying that, while brain fag is fatigue, brain fog is a thick blanket that covers and distorts brain function, and is one of the things that led me to seek help in the first place.

Me and my husband of 46 years had been noticing that things weren’t right since 2013. When investigations started, my self reporting was not initially believed. Upon diagnosis in August 2015, the physician went white with shock as she announced I had dementia. I, however, felt vindicated.

I started on Aricept and felt as though I had my life back within days. It cleared the brain fog and lit me up! I’m an adrenalin junkie and I had the ride of my life — the fact that it was given so early in the disease progression has meant it has, and continues to be, extremely beneficial. It even lifted my Mensa-type brain from an IQ of 90 back up to 121!

Other drugs I’ve tried since have not been as effective, and many have resulted in adverse side effects. This has led medical professionals to assume I must have some sort of underlying psychiatric disorder. And so I continue with my existing drug regime, despite the Aricept’s effectiveness slowly waning over time.

Aside from the drugs, I have developed a number of strategies. For instance, I fast for 12-16 hours every night, with my last meal being at 6.30pm, bed by 10.30pm and breakfast at 8.00am. I believe burning fat energises the brain, meaning no fade or fog … and my clothes fit better! I also avoid the toxic five whites – flour, sugar, rice, milk and salt.

Knowledge is power and so I’m researching, asking, attending online webinars … I continue to have a burning ‘need to know’. I have also presented and submitted posters to be displayed at a variety of conferences on dementia and ageing.

I have a Counsellor to whom I vent regularly. I also have my ‘dementia family’ who understand and to whom I don’t have to pretend.

Since retiring from work, I have established a popular Facebook group known as, ’Val’s Journey – Dementia is a word – Not a sentence’, to provide a supportive online community and as another means of sharing some of the useful knowledge I have picked up along the way.

My advocacy work is something which has improved my quality of life immeasurably. I’m now part of a Dementia Advisory Committee advising on the government-funded Dementia-Friendly Communities program, which aims to encourage organisations and communities to educate themselves and take the steps necessary to become more dementia-friendly.

I am lucky because my family and friends support and enable me. For other believers, you will understand when I say I walk in divine health with the mind of Christ. I continue to work really hard at staying well. Today is the PRESENT, and I intent to suck the marrow out of life, not just endure it. I have a great life! Yes, I have dementia, but dementia doesn’t define me. Dementia does not have me. I live an exuberant life beyond dementia.

I would urge anybody in similar circumstances to visit dementia.org.au for a one-stop-shop of dementia information and details of the available support services.