The conversation about aged care can be as moving as it is surprising. Nobody wants to be the one to tell their mother, father, dear friend or distant cousin that they are no longer safe living in their own home.
It is a discussion many people put off until the wheels are well and truly falling off. Others leave it to the medical professionals to break the news.
There can be sense of relief as family accept some key decisions around where their older loved ones will live.
Take Mike Rooney* who, having lived relatively independently for the last 71 of his 89 years, thought he was fine living in his own home. That was until he tripped on a rug in his lounge room and fractured his back.
Three months in hospital with minimal exercise and extreme pain had family, friends and doctors concerned about how he would manage at home.
Previous failed attempts at having help come to the home and assist with everything he had only just been managing himself (including the cooking, cleaning and personal hygiene) meant bringing in services was not going to be an option.
Clearly worried about the impact that being told he was going to have to go into full-time care was going to have on his psyche, family members left it to the hospital staff to tell him. His geriatrician was in full agreement and backed up the call, declaring he was fit for discharge but not to his own home.
Mike was upset with the family for not giving him any warning. He hated being told what to do and flatly refused to move – until he was told he would have to start paying the $500-a-day private hospital bill instead of his health fund.
The hospital set a discharge date, leaving the family and Mike with some tough decisions that could have been discussed a lot earlier.
They organised respite care in the facility they had identified as the one most suitable for long-term care and spent the next few weeks making amends for not warning Mike and trying to put a gloss on the impending move.
They would spend the next few weeks slowly moving some of his furniture and pictures into the single room.
It was a different story for Charlotte Cant*. Also in hospital for several months after a fall, she, along with her GP, began to wonder how she would manage at home on her own.
Having recovered to the point of discharge, but afraid that even with more home help her care levels were beyond what she could manage, she asked the hospital to assist with finding her a suitable aged care home.
She talked to family and although they were initially shocked at the decision taken by the fiercely independent 91-year-old, they accepted it was probably a good idea given her medical history and the likelihood her health was likely to deteriorate.
There was a sense of relief as family accepted some key decisions around why and where she would live. She was fully engaged in the timing of her move and the treasured possessions she would take with her.
Like more people than you might expect, she found the move a positive one. She has people to talk to, with warm and friendly support 24 hours a day.
For most people, home care packages, home support and informal or formal care providers can help older people remain living independently at home.
However, for reasons including financial cost, lack of carer availability or carer exhaustion, this can become unsustainable.
Whether it is for home or residential care, access to government-subsidised aged care is determined by the Aged Care Assessment Team (ACAT). Given there can be a waiting time, it’s a good idea to call My Aged Care and get the process for ACAT approval under way.
For some people, this assessment may be the point where the penny drops that they need more support. It’s often not a total surprise – especially to treating medical professionals – that residential care needs to be explored.
Mary Ann Kulh, a Canberra geriatrician with More Than Medicine, says most people who enter residential aged care do so as a result of medical comorbidities including heart failure, lung disease, arthritis and dementia.
It might start with losing the ability to cook, shop, do housework or drive. But it can progress further so that even simple tasks such as toileting, showering, eating and walking become a challenge.
Although the decision to enter residential aged care can seem to come suddenly, there has usually been a long lead-up. Chronic health conditions may have been managed over years and disability will often follow a gradual decline, says Kulh.
She says giving the person time to reflect on how the situation has reached this point can be helpful. Reflecting on what the person was able to do one to two years ago, compared to what they can do now, will help them understand why such a difficult decision needs to be made.
Discussion of how other avenues such as home care have been exhausted and what the next stage might look like can also help.
For someone living with dementia, these scenarios may include what to do if they start wandering away from the house, start becoming aggressive or are unable to control bowels or bladder.
Or for people with heart or lung disease, what might occur if they become extremely short of breath. Arthritis and musculoskeletal conditions including chronic pain may lead to inability to walk.
Kulh says it is also important to be honest about carer stress and how much this is affecting ability to sustain care at home.
Families may find it difficult to raise the topic of stress placed on mum, dad or other family members, she says, but avoiding carer exhaustion is paramount.
As a geriatrician, it is not uncommon to be asked to start the discussion about residential aged care with patients.
“Considered to be independent in our opinion, we have some expert knowledge in what we recommend,” she says.
Frequently, these conversations occur in hospital during a time when an unpredicted health problem such as a broken hip or stroke has occurred. Kulh says being the “bad cop” and making the recommendation that most people do not wish to hear is part of the job.
But giving bad news comes down to how it is delivered. It takes compassion, empathy and a lot of heart.
*Names have been changed.
This article originally appeared in The Australian Financial Review. Republished with permission.