Kylie Ladd’s mother in law has Alzheimer’s disease. As a popular author, columnist and neuropsychologist, Kylie found balancing her work and family commitments almost impossible given the demands of her mother-in-law’s illness. ‘Before she moved to a nursing home a few months ago I was constantly aware of a nagging sensation that I should visit, make sure she was eating, make sure she was showering, make sure her clothes were washed. The caring role nearly always falls to women, doesn’t it?’
The trouble with Kylie’s situation was that it wasn’t just her mother-in-law that needed her. ‘I was also trying to work 2-3 days a week, look after my kids, write a novel, look after my house, spend time with my husband, exercise, socialise, visit my own parents… the list goes on’. A huge burden of guilt lifted from Kylie’s shoulder when her mother-in-law was placed in a nursing home because now the responsibility for her care was shared. Unfortunately, like most high functioning women, that old guilt was replaced by new. Now it was determined by how many times she visited the nursing home and was compounded by the loneliness of her father-in-law who was now alone in the home he had previously shared with his wife.
The term ‘the sandwich generation’ has been in vogue for the last couple of years and describes a generation of people who are caring both for their children, and their aging parents – often because their parents are suffering from a dementia-related illness. Currently in Australia there are over a quarter of a million people living with a dementia-related illness and this figure is expected to more than double to about 600,000 in the next 20 years. The heartbreaking thing about dementia and Alzheimer’s is that the loss is ambiguous. For the carers, the person they love is still very much there but in many senses very much gone.
Nathalie Brown’s mum has lived with her for the last four years and she now requires around the clock care due to the level which her Alzheimer’s has progressed. One of the unexpected challenges for the successful child behaviour consultant has been the way her mum could no longer communicate. Nathalie explains that ‘with the Alzheimer’s mum lost English – her second language – and this made finding help even more difficult. In the last six weeks mum spent three weeks in hospital with an infection. This has made her decline even more. She no longer eats solids, is not walking and has lost most of her ability to speak.’
Nathalie describes the disconnect between her mother’s physical and mental presence; ‘Watching and living with mum’s continuous decline is extremely tough on my family and myself on an emotional level. Explaining to my children that although grandma physically looks the same but is otherwise not really here is hard. Personally to see my mum who was always so full of spirit, life and always helping others, to what she is now; almost an empty shell is very hard’.
There is also great sadness in having to let go of the dreams Nathalie had for her mum in old age; ‘I always had great ideas about her retiring and having a fun and restful life with us. To see her losing all her faculties is heartbreaking’
There is no rulebook or guide on how to cope with the psychological loss of our parents. Caring for vulnerable people on both ends of the spectrum – our kids and our parents – can leave little space for women to look out for themselves. Kylie believes that ‘everyone handles it differently’. She goes on to say that ‘The fact is, it is very, very tough to lose the essence of a loved one. Some people can hold onto memories and retain the love through the incontinence and wandering and paranoia and aggression, and some can’t – and I don’t think we should ever judge the latter’. Nathalie too says that over the last four years she has found that ‘over time you adjust emotionally and carry on finding and enjoying any happy moments as much as you can’
Kylie believes that days like today should focus on reducing the stigma which stems from the need to ‘hush up’ Dementia. The rapidly aging population of Australia will only see an increase in the diagnosis of diseases like these. Nathalie hopes that the day reminds people to think about reaching out to others who care ‘I felt and still do, like I live in some kind of limbo, its very difficult to see mum as she is and then continue to live my life.’
Post script: Nathalie’s mother sadly passed away last week. You can read her brave farewell here
Are you part of the sandwich generation – are you a mum and a carer?
For more support visit
National Dementia Helpline 1800 100 500
Carers Australia 1800 242 636