On Day 16 of World Alzheimer's Day #WAM2019 we highlight the story of one young care partner whose mother had young onset dementia.
It is important we are remember that children of a parent living with younger onset dementia are too often the invisible care partners and are not adequately recognised by health care providers, if at all.
An Australian researcher, Karen Hutchinson was researching the impact of dementia on young adults and children. Her work identified four common experiences of young people living with a parent with younger onset dementia, which included the emotional toll of caring, keeping the family together, grief and loss and psychological distress.
This is one young care partners story, first published in Karen's research, then republished with permission in Diagnosed with Alzheimer's or another dementia: A practical guide to what’s next for people living with dementia, their families and care partners [1]
As an only child of a single parent X recalls seeing changes in his mum from about 8 years old. He lived in a small community where someone labeled his mum, at 42 years old, as a drug addict when they noticed some changes in her. Subsequently X was no longer able to have friends over to his house. He did not know what was happening to his mum, which he found hard as he could not explain to others what it was.
He was very protective of his mum and recalls how his friend pointed out to him when he was 11 that he was doing things that a parent normally did. Unknown to him he had started gradually to do things that his mum used to do. It was many years later before he knew her diagnosis of dementia.
When X was about 13 he hung with the ‘wrong crowd’ and did not attend school regularly. He was sleeping rough at nights to get away from home and drinking alcohol. He knew this was wrong but he needed to escape from his unpredictable home life. There were no boundaries placed on him so he was free to do whatever he wanted. His family and mum’s friends no longer visited so basically they were left alone.
They moved to a different area where X was soon labeled a ‘trouble-maker’ by the first school he attended. He then transferred to another school and it was there that finally a teacher took an interest in him but the fear of being separated from his mum made him stop disclosing what was happening at home. He recalls having some challenging times at school and felt he did not have much in common with his peers.
Thanks to a supportive teacher he remained at school until year 12 and this provided him with some ‘stability’ in his life. He did want to go to university but knew this was not going to happen and felt a real sadness about this. A supportive teacher helped him through this time and gave him hope for the future.
They faced financial hardship as there was no money for food and bills so he had to juggle school, paid work and caring for his mother. This eventually took its toll after leaving school where he ‘reached a crisis point’, he needed to escape and be like his friends free to leave home.
On reflection he felt he may have been depressed but his focus was on looking after his mum and felt there was no help for him except escape to the pub more frequently. He recalls the time when he finally asked for some help, a family member told him that it costs money and he wouldn’t be able to afford it, so he did not look into it further at this time.
His crisis worsened and he moved interstate as he wasn¹t coping but he organised his extended family to look after his mum before he left. He noted that very soon after his leaving community services were organised to support his mum. He felt lots of guilt but contacted and visited his mother frequently until he eventually returned home feeling stronger in himself to take over her care again. He felt no one could care for his mum as well as him because he loved her.
This complex and challenging situation continued whilst juggling paid work and his demanding caring role. Finally with the added benefit of maturity he realised that services and care for his mum was something they were entitled to and not just someone doing them a favour. With this new insight he felt more confident and empowered to get the help they needed. He now recognised himself as a carer and obtained financial support and gained legal advice with regards to managing his mum’s financial affairs. He recognised too that he needed a plan for the future. After many frustrating months navigating the complex process of arranging a suitable nursing home placement for his mother, he was successful. He reflected that ‘you shouldn’t have to jump through hoops to get it (services and residential care).
When his mum finally was accepted into a nursing home he remembers this time as a particularly emotional and difficult period where he felt he had failed her. He thought his life was spinning out of control but he knew it was time to be her son again. He was able to spend quality time with his mum without all the responsibilities and also finally start to sort out his own life.
‘I think having someone to talk to who knew about what was going on, would have made things better for me too. Because I just felt really alone. ‘Didn’t feel like I could talk to anyone about that stuff’ he reflected.
Stories in Karen's research, and from DAI members reflect this is experienced by many young people in a similar situation to this young man.
You can also read the article by Karen Hutchinson, Chris Roberts and Susan Kurrle in the Australian Journal of Dementia Care, Invisible carers: Young People Caring for People With Dementia.
Please help us support more people with dementia to share their stories and live more positively by donating or partnering with Dementia Alliance International.
[1] Swaffer, K & Low, LF. (2016). "Diagnosed with Alzheimer’s or another dementia: A practical guide for what's next for people with dementia, their families and care partners", New Holland Publishers: Sydney, pp 253-254.