I have told my children that, if necessary, they must put me in care.  I won’t be happy about this but I’m determined that my children won’t be responsible for looking after me at home. During 10 years as a Home Support Assessor, I lost any illusions regarding families caring for a frail older person at home. (Maybe another topic for another day)
 
I have watched family members promise not to put their relative in a home – and then seen the difficult, exhausting and often conflict-ridden scenario unfold as the family (or individual) struggle to provide complex round-the-clock care. Carers often sacrifice their own health and quality of life.
 
They may insist on providing home care due to a complex mix of agendas and emotions; love, loyalty, guilt, pride, sense of duty, cultural background, belief that no facility could provide the same quality of care. Promises have often been made with little understanding of the realities of caring for a frail older person at home. (There are exceptions to this difficult home care scenario, but they are a minority.)
 
Families often fear their loved one will not receive quality care and will die if they go into a home. And yes, they will die – everyone does. Quality of care is not such a certainty.
 
There is sometimes a perception that care at home will be provided by the government. Until that care is required, few families understand that it is limited and the aged care community services can be a complicated pathway with long delays for the home care packages required for people with higher needs.
 
A frail older person may struggle to navigate this, even with support and advocacy from a younger family member or friend. Ultimately the responsibility for providing and co-ordinating care will rest with the family or an elderly partner who may also have complex health conditions and limited independence. And even the most functional, cohesive, caring family or partner may still struggle to provide long-term home care for their loved older person.
 
We hope (even expect) to age in a positive way, enjoying reasonable health and independence up to the end of life.
 
The reality is that we will often live longer but not necessarily better. 
 
We have control over some factors such as diet, lifestyle, exercise, smoking, drug and alcohol consumption but this control may be increasingly limited as our bodies age and we experience the realities of age-related frailty.
 
Our quality of ageing and health conditions may also be influenced by factors beyond our control; genes, injuries or health conditions from our workplace, environment, sport, accidents.
 
As we age we are more likely to need some form of care as our physical health deteriorates and /or we develop severe cognitive decline due to one of the dementias. There may be months, or years, of impaired physical and intellectual function with greatly reduced quality of life before we finally die – even then, we may not die peacefully in our beds or watching Last Tango in Halifax.
 
Like most people, I would like to die peacefully in my sleep while still enjoying a good quality of life, but this is most unlikely.
 
We are more likely to die after a fall, from a stroke, cancer, cardiac condition, complications of infections, respiratory disease, renal failure, end stage of dementia.
 
Very few older people plan for this nor do they discuss it honestly with their families.
They continue to live in homes that were designed for younger people with a higher level of independence. The home may be unsuitable and unsafe for someone with age-related health conditions and reduced mobility and balance.  Renovations, repairs and relocations can be expensive and stressful, and the longer we leave them, the more difficult these become.
 
During my Home Support Assessments with older people, future planning was a frequent topic. I would be rich if I had a dollar for every 80-plus-year-old who told me ”I just want to stay at home and die peacefully in my sleep.”
 
And for the ones who said “I’ll worry about that when I’m ready/when I’m old/when I can’t look after myself ...”
 
We need to be more honest and courageous sooner about the realities of ageing and the inevitability and normality of death.  This includes talking with our families about our hopes and expectations as we age, appointing Enduring Powers of Attorney, developing an Advance Care Plan and discussing this with our GP as well.
 
We should plan our funerals and tell our families what we want. This is a great way to demystify death and acknowledge our mortality.
 
Good advice is available from the Office of the Public Advocate, Council of the Ageing, Elder Rights Advocacy, www.advancecareplanning.org.au
 
Some of us may not wish to go the whole distance and are aiming for quality not quantity. An aged care resident recently told the Aged Care Commission that each morning when she wakes up in her isolation room she thinks “Damn I’m not dead”.
 
She was saying what is thought by a large number of ageing people who, even before COVID, and with the best care available, do not want to wake up in the morning. They’re not depressed – they’ve simply had enough and they know that death may be prolonged and not particularly dignified or comfortable.
 
As an old nurse, I know there are worse things than death.
 
It’s a topic that demands our attention, especially as the baby boomers age and demand more from the aged care sector than has been accepted by the current generation of older people.