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Alzheimer’s: It is what it is

Emma Grey

I was attempting to get this article written before Sunday’s fundraising Memory Walk and Jog for Alzheimer’s awareness, but didn’t have a hope.

Dad has been in hospital for surgery, so my sister and I (and our young children) have been taking it in turns staying with mum 24/7. Mum has Alzheimer’s, and would not be able to be left alone for five minutes without becoming distraught about dad’s absence.

Neither of us slept a wink during the nights we were with her. It’s not just all the practical considerations (and those are countless), it’s the constant confusion. It’s the waking up, repeatedly, all night, asking where dad is. Less than a minute later, the same question. Less than a minute after that, the question again. There is nothing we can do to appease her concern, except stay awake for hours answering the same question, over and over again.

She at times confuses her husband with mine, and thinks dad has died, not Jeff, and I have to untangle that. (Our greatest fear now is that something will happen to dad, while she is still alert enough to miss him. We don’t know how we would manage that for her, emotionally. Grief is hard enough without being permanently stuck in the raw shock of it.)

There was much about the last few days that resembled the first few days at home with a new baby. The lack of sleep. The total dependence and responsibility. The extra workload. The exhausted dread that she’ll wake up at any minute and need attention. The knowledge that it could take hours to get her back to sleep. That restless (and irrational) feeling that everyone else is asleep and we’re the only household in the southern hemisphere in uproar. The difficultly getting ready to leave the house. The living for the moment because there’s no such thing as new memories.

What we don’t understand is how dad does this full-time, at eighty-five. We both live close-by and each help him often, and they do now receive government assistance with meals and ‘home help’, but it’s not until you live with someone with dementia that you understand the depth of the challenge, emotionally. We keep chanting to ourselves, in those moments when it’s hard to stay patient, ‘She looked after me, she looked after me.’

Dad values his independence greatly and they want to stay in their home while they can, which we are supporting until a difficult decision must be made. One of the purposes of September’s Dementia Awareness Month is to encourage people to reach out to those in the community who have Alzheimer’s so that they know they are not alone. It’s important that we support the people who are caring, in what is a laborious, isolating and heartbreaking responsibility. It’s physically and emotionally demanding, and the carers are often elderly themselves.

We’re immensely grateful for mum and dad’s next-door neighbours. They keep a friendly eye out, and it’s nice to know there is someone close-by in an emergency. Mum and dad have recently joined the Alchemy Choir for people with Alzheimer’s and their carers, and it is doing them the world of good – (I was entertained with the entire repertoire at 3am).

At one of their recent concerts, a lady in the early stages of the disease became upset, chatting with our family afterwards. She explained that she does not receive support from her own family, and the topic of her developing dementia is avoided (or so she believes). Coping with a parent as their brain unravels is extremely difficult. It’s even harder to imagine coping with it yourself. As my husband used to say, ‘it is what it is’. So we’re all-in, doing what we can with a difficult situation.

Alzheimer’s Australia ACT is the charity for people with dementia and their families and carers. It provides information, support services, counselling and education.

National Dementia Helpline: 1800 100 500

Dementia is a National Health Priority Area. See www.fightdementia.org.au for more information. 


Emma Grey

Emma Grey is the Canberra-based author of ‘Wits’ End Before Breakfast! Confessions of a Working Mum’ and ‘Unrequited: Girl Meets Boy Band’. She’s director of the life-balance consultancy, WorkLifeBliss and co-founder of a fresh approach to time-management, My 15 Minutes. She lives just over the ACT border with her two teen daughters and young son. More about the Author