Like many carers, I thought that when my mother went into residential care, my responsibilities for her daily welfare would be over. I could not have been more wrong.
Spending three months researching all the options, visiting possible facilities and interviewing management about services, standards, food quality, available allied health and activities – then comparing their answers with consumer reviews where available – was a draining and uninspiring process. It was time consuming and frequently misleading. Because of the severe bed shortage in the regional area where we live, I had to look further afield, involving lengthy travel.
You can be as diligent and thorough as you like when you visit a facility but the star rating system has proved to be a less than reliable guide. There are also things you cannot know from initial investigation: how often they lose personal garments sent to the laundry; how long it takes to respond to a call button (data is not always an accurate reflection of reality); how often a male staffer will be the only person available to give your mother a shower despite assurances to the contrary; how often a real flesh-and-blood GP is on site, as opposed to telehealth.
I took the vetting seriously, part of my duty as a daughter and as a carer seeking a place that would suit my mother’s needs, which are complex. She is mentally sharp and in dire need of mental stimulation from good conversation rather than a program of daily bingo and trivia quizzes. Her cultural background means she misses a lot of references to Australian songs and shows of the past, making her feel like an outsider.
Appearances sometimes mask deficiencies. Places that do well on the window-dressing of smart rooms and well-tended gardens give families – often in distress at the enormity of the decision they are making – assurance but that peace of mind can be sadly all too illusory. I know because I fell for it. My naive reasoning was: if they look after the plants so well, they will be fine with the people. It is a common mistake.
Once you’ve decided on somewhere, the admission paperwork can be daunting: even with the help of a financial broker – a service I highly recommend – I still had to fill out 17 forms.
Less well-run facilities often struggle to retain staff, relying increasingly on agency personnel who come and go so frequently that no rapport or relationship with residents ever develops. Some places charge for premium services like wine with meals – which never materialises. But if your relative’s memory is unreliable and you are not vigilant on a daily basis, you may never know.
Basic care may be good but activities limited: in one of the top-scoring places I visited the program was left to the goodwill of families, meaning that residents in one wing get a singalong because someone has the musical enthusiasm to bring in keyboards and entertain residents. But if that is not your jam, residents are on their own – apart from a fortnightly film screening – and doomed to a diet of puzzles and crosswords.
Of course, you only discover these things when you have signed the contract and left your parent there, hoping for the best – and for a break from doing their laundry, cooking their meals, dealing with all their life admin (as well as your own), organising their social life, taking them on outings that include booking wheelchair taxis, and keeping their meds up to date.
The reality puts more responsibility on family carers to step up and fill the gaps. You may have expected to get your life back but in fact you visit frequently, in the hope that you can support your relative and compensate for what is lacking. Which is not in any way to denigrate the work of the staff, who are often under-trained, under-resourced, poorly led and poorly paid. I feel nothing but gratitude and respect for them, but they are overwhelmed.
The ongoing role for family carers when a relative goes into an institution is significant. Data from the yet-to-be-released results from the 2024 Carers NSW survey found that a third of carers of people living in an aged care home provide 40 or more hours of care a week – that’s a full-time job. About 43% provide more than 20.
On top of the skills you marshalled while your relative still lived independently, now you must become their advocate. This can be like full-time campaigning. It requires dogged determination and communication skills, plus high levels of awareness and competence. You often have to determine who is telling the truth in two versions of the same scenario. You may even have to mediate in tense episodes between your relative and staff due to misunderstandings that may be petty or minor but can have repercussions once you are out of sight.
You can find yourself intervening daily or more, querying why certain procedures either were not followed or executed poorly, causing distress: why food that should be served hot arrived cold; why requested dietary choices were not followed; why your mother waited two hours for someone to attend to her; why a request for a painkiller was denied; why a volunteer or social worker’s visit was cancelled without explanation; why the correct mobility aids are not available. These are endless questions that have to be asked politely but persistently to get any satisfactory answers or improvements.
Depending on how much you follow up, you may make yourself unpopular with staff who see you as a nuisance but the reality is, according to one staffer I spoke to, that families who make a fuss on behalf of relatives often succeed in getting better service.
One of the unfairnesses of the system is that the carer’s allowance ceases immediately when a relative goes into institutional care. This can have financial and psychological consequences at a time of change, guilt and vulnerability.
Surely those who qualify should be entitled to continue to receive that benefit for an adjustment period? It’s a super-stressful time when they are most likely to be making the most frequent representations to management and staff and doing the most to-ing and fro-ing to make sure their relative is settling in – as well as bringing things from home, switching over authority on paperwork, transferring responsibility to new doctors, and, in cases where relatives have been forced by bed scarcity to move out of their community, finding new allied health providers and other resources.
Add in other demands, such as children, grandchildren, relationship pressures or health concerns, and you can feel as though it’s you who needs to go into care.
Navigating this transition is challenging at the best of times. We need to do more to make it more reflective of carers and their ongoing role while residential options are stretched to the limit and unable to deliver all that they promise.
