‘What it’s like caring for my mother with Alzheimer’s disease’

The last 12 months have been great for raising the voice of the over-60s community at Starts at 60, something we feel strongly about doing. During the next few weeks we are celebrating the blogs that resonated with readers the most throughout the year. This blog is one of our Top 30 blogs for 2019.

People often refer to Alzheimer’s as the ‘long goodbye’. I don’t. To me the experience of my mother’s Alzheimer’s has been a long, daily hello. Less poetic, but more real. When Mum was first diagnosed with Alzheimer’s more than a decade ago I dived head first into ‘Dr Google’ to read all about it. Mostly what was available was information about ‘stages’. Oh yes, and the term ‘the long goodbye’. Have you ever tried to stand at the front fence and wave to your loved one for … 10 years? It doesn’t work. Your arm gets tired. It is also of no use at all to your loved one.

My loved one is Helen, who recently turned 89. She has lived in her own way through every ‘stage’, and never perfectly fit the descriptor for any of them. Looking back, knowing the broad-brush ‘stages’ only vaguely helped me prepare for the steps she took along the way.

I remember the day I had to pack Mum’s drawer of bras, undies and cotton hankies into a mournful suitcase that was going on a one-way journey to a single room in a dementia ward in an aged care facility. Mum wore her bra, the same kind she had been wearing for many years. A cotton ‘Triumph’ size 12B. Nothing flash. Sensible for gardening and the long hikes she did throughout Sydney.

Mum knew she had Alzheimer’s. In the early years she could still tell people about it. She knew her name was Helen, and she knew I was her daughter.

I unpacked that suitcase into tidy drawers of bras, undies, handkerchiefs, socks, singlets and thermal cotton spencers. Hung her shirts and t-shirts, cardigans and coats. Laid out her slippers, sandals and ug-boots. As I unpacked, I had no idea of the years to come. No idea that Mum’s small cupboard of possessions would become a symbol that expressed her palliative care journey.

In the first years of decline, Mum’s wonderful care staff could help her dress in cotton bra, singlets, undies and front-buttoning cotton shirts. Then a time came when they dressed her, and she helped and at times fought them. Now she cannot help. Over time her clothing shifted from cottontails to incontinence nappies under undies, to disposable incontinence pants. From button-up shirts and t-shirts to adaptive split-back clothing. (I’d never heard of split-back adaptive clothing before I went online and found them.) I’d never imagined Mum without a bra. One day, I realised she was no longer wearing one. Putting on her bra had become a pointless ritual and annoyance that hurt her to wear.

When I began this journey with Mum, I had little experience of palliative care, and no experience of Alzheimer’s. When Mum became a resident in a dementia unit, I was given a form to fill out about her end-of-life plan. I filled it out according to Mum’s wishes. I wrote ‘not for resuscitation’ on that form, thinking that was very brave of me.

Since then I’ve realised how limited an understanding of her end-of-life that form lead me to develop. Everything Mum has experienced over the past decade has been about palliative care, and every day is living the best life possible, and this is her end-of-life. It hasn’t been about the ‘goodbye’ at all. It’s been about the ‘daily hello’. Her life, lived everyday as she has slowly died. Mum’s end-of-life plan, though important, turned out to be the wrong focus. The right focus has been to optimise her quality of life, every moment of every day that she lives and slowly dies.

Palliative Care has been about:

• adopting an attitude of partnership with Mum’s doctor and aged care staff
• managing pain, even when Mum can’t tell you she is in pain
• singing and talking to Mum, even without response
• ensuring dignity and respect, even though Mum lacks unawareness of her vulnerabilities; and
• protecting her from hospitalisation and intrusive medical practices
• staying on top of new evidence-based approaches to her care
• being there to say hello
• bringing laughter and warmth to the aged care facility.

What I have come to understand is that palliative care is about quality of life. It’s not just about the last days of life. It considers the whole person and their social and emotional needs, not just physical symptoms. In a dementia unit in an aged care facility palliative care is about all the residents, and all the workers. We are all of us involved in a ‘daily hello’, in a palliative care journey where people eventually die. It’s about kindness to other daughters, partners, family members who come to say their daily, weekly, monthly ‘hello’. One day, all of us do say goodbye. Yes, the journey can be long, but in there here and now it’s about the care we take on the journey to that moment.

When I began this journey with Mum there was little written about palliative care in the context of cognitive decline, so I wasn’t as prepared as I would have liked. Nowadays there is a lot of help and advice available. Having trustworthy information is important. I have found CareSearch to be a wonderful source of information. The website provides free information on palliative care for patients, carers, and families and the healthcare workers who provide care. I found that information reduced my fears, and helped me feel more comfortable talking about, and making decisions when facing the ‘daily hello’ that is the slow end-of-life for an Alzheimer’s patient.

CareSearch includes information about palliative care, how to care, living with illness, and coping at the end. It matters to me that all materials have been checked for quality by Australian health professionals and are available free-of-charge, because a barrage of non-scientific cures for Alzheimer’s endlessly comes down the social media pipeline.

It would be great if every residential aged care facility had a palliative care approach that they shared with residents and their loved ones early and often. What I appreciated is that it also recognises the grief that aged care workers experience as residents die. My journey is shared with aged care workers who love Mum and have known her for years. All of us have been the richer knowing Mum in this ‘long, daily, hello’.

If you’re need someone to talk to, there are many 27/4 support lines available, including Lifeline on 13 11 14, the Suicide Call Back Service on 1300 659 467, MensLineAustralia on 1300 789 978 and Beyond Blue on 1300 224 636.