In 2010, my mother was diagnosed with dementia. The diagnoses came after several subtle signs that had sailed right past me at the time, busy in my own life as I was. Looking back of course there were red flags. Like my mother asking me why I wasn’t taking her to the doctor (for the third time that week, for a non existent ailment) and forgetting what day it was. Like the way she was becoming uncharacteristically aggressive in her communication. Like the time she insisted it was me who had forgotten the entire family was coming to visit her – which we weren’t.
When eventually it came, the diagnosis confirmed what I’d suspected for months.
The disease had invaded her body and was claiming her brain, and there was nothing I could do about it. For the first time in my life, I understood that dementia was a degenerative disease. It was much more than simply forgetting where you put your keys. No pills or drinks would cure it or even slow it down, perhaps just mask it. There was no way to reverse or halt it. The only thing to do was accept it.
The other thing I needed to accept was that my role as a daughter and a carer for her had dramatically changed. I needed to acknowledge the challenges this would bring, re-organise my life so I could take charge of hers, and ultimately change my life path to accommodate this huge life shift neither of us had seen coming.
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On the outside, it looked like I had it together: A loving and dedicated husband and beautiful twins, but inside my home the struggle was real and often debilitating to my sanity, my marriage, the way I parented my twins (one with mild autism), and my ability to take on work.
I felt pulled in so many conflicting directions. Everyone needed me, frequently at the same time. Every inch of my energy was squeezed out. I was stuck in the middle of caring for my sick mother and raising my young children and being a supportive partner. I was the meat in the sandwich. I had suddenly become a living part of ‘The Sandwich Generation’.
We often talk about ‘the juggle’ as it pertains to working mums. We know this story well: carving out time for school drop off and pick up and lunches and prep, parent-teacher meetings, and sport and ballet commitments along with parties and playdates and a social diary that's way fuller than ours.
But what if you needed to add the care of an elderly parent or a sick spouse to that? Your life is on track, then you get the dementia diagnosis for your mother, or your father has a stroke and you need to be there for his rehab. What would you do?
WHAT IS THE SANDWICH GENERATION? ARE YOU PART OF IT?
The Sandwich Generation is a term coined by Dorothy Miller in 1981, who was defining women in their 30s and 40s at that time (so, the ‘Baby Boomers’, now in their 50s and 60s) ‘sandwiched’ between their young children, friends, employers and ageing parents.
Today, ‘Generation Squeeze’ is another term used to define this Sandwich Generation, as we are being squeezed from all directions, and trying to do all the myriad jobs thrown at us. And so, the definition of this has now morphed to (predominantly) women of age 40-65 years.
Arguably the biggest societal shift we’ve ever witnessed is taking place right now: thanks to modern medicine our elderly population is living longer than ever, women are more inclined to delay the age at which they have their children, and the meat in the middle of the sandwich is feeling the squeeze more than ever before.
Australia’s population currently stands at 23 million. In 2012, there were 2.7 million people in Australia who were providing care to an older person or someone with a disability or long-term health condition (ABS, 2012), with 770,000 people identified as primary carers. And 40% of these primary carers spend 40 hours or more per week providing care.
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This means that it’s more likely that many women will be a mother in her late 30s or early 40s, with parents still alive after probably having battled illness (the kind of diseases which could have killed them decades before), staved off thanks to modern medicine. It’s also likely that grandparents are still alive thanks to medical advancements, and mum or dad are juggling looking after them, while putting in some babysitting hours for their grown up kids, while they’re working full-time or part-time, and everyone is trying to maintain this crazy juggle. And they’re probably all doing it with high exhaustion levels, while trying to muster a smile, risking that dreaded ‘carer’s guilt’ feeling if they don’t.
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I held my mother’s hand in the final weeks of her life last year, after many years of being her carer. It was intense and all encompassing, lovingly nursing the life of a woman in a hospital setting who had given me life in the same hospital decades before. Feeding, and assisting with toileting, and soothing bed sores with cream, and lovingly massaging her aching body, all the while with the grief of knowing the hours were limited with someone who, when they were coherent and all their faculties intact, would die for me.
My mother died in August last year, the result of the co-morbidities of advanced, end stages of dementia, a blood disorder which was near-fatal six years before returning in her final months, which had meant treatment, and then inevitably: pneumonia. It was a ‘long goodbye’ over the years but ultimately her demise in hospital was relatively swift. When she took her final breath, it was a pain so cutting it winded me, despite already having lost my father some 28 years before, and knowing the depth of grief of the loss of a parent.
I lived this life as a carer, with some incredible support from my husband and mother in law, and brothers. And the morning after the day she died, I woke with an incredible pain in my heart, but a surreal sense of calm. I had lovingly cared for her as best I could, and the serenity I felt came in knowing that even though it was devastating to let her go, I aided her in the best possible fight for her life, and the best possible quality of life.
It was not easy, in fact sometimes it was excruciating and debilitating. However, confronting the practicalities around the roles and responsibilities alleviated a lot of the heaviness. Working out a plan based on balance in your life will give you the best chance possible of immersing yourself in precious moments with your loved one, and avoiding carer burnout.
Considering we have an ageing population, and a high proportion of carers in Australia with that set to rise, conversations about the Sandwich Generation are important
HERE ARE SOME IMPORTANT DISCUSSIONS THAT CAN HELP:
Conversations with your siblings, about how care will be divided and/or who will take on the bulk of it. These can be awkward but better to have them early on.
Discuss honestly how you will be compensated if you cannot work because you are caring for a parent. That could mean that the leftovers from a parent’s pension, for example – after expenses for additional care, medication, and medical bills – could go to the carer as a ‘wage’ so you can live and contribute to your own family budget.
Have these ‘care talks’ while your parents are both healthy, nobody has had a stroke yet, no one has had a clumsy fall and then needs a hip replacement and around the clock care. When that happens, those talks can become fraught with fear and even anger, which can stem from feeling scared and uncertain about their future – and yours as their carer and the responsibilities that brings.
Conversations with your partner about how they feel about your absence or distraction from your own family unit in order to provide care. It can become difficult if your partner isn’t on board.
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The irony is that we live in an era where we’re encouraged to take opportunities and work abroad and put ourselves first. But the reality is that at some point, we do need to put ourselves last and look after the people who put us first. We need to shift theway we perceive care, and carers, and the circle of life, and giving back to the people who love us most.
Grieving my mother for the past seven months has been one of the toughest emotional battles of my life. But as I sit now on the other side if it, it is tempered with a sense of calm and fulfillment. It took time to get to a place of knowing my responsibility as a carer, but when I fully understood how I was repaying my mother for all she’d done for me, the circle of life made complete sense, life’s jigsaw puzzle finally fit.
Josie Gagliano is the author of The Australian Ageing Generation Handbook. She blogs at oursandwichgeneration.blogspot.com.au. Her book 'The Australian Ageing Generation Handbook' came out in July 2015. Follow her on Twitter here.