How do I handle it if my parent is refusing aged care? 4 things to consider

It’s a shock when we realise our parents aren’t managing well at home.

Perhaps the house and garden are looking more chaotic, and Mum or Dad are relying more on snacks than nutritious meals. Maybe their grooming or hygiene has declined markedly, they are socially isolated or not doing the things they used to enjoy. They may be losing weight, have had a fall, aren’t managing their medications correctly, and are at risk of getting scammed.

You’re worried and you want them to be safe and healthy. You’ve tried to talk to them about aged care but been met with swift refusal and an indignant declaration “I don’t need help – everything is fine!” Now what?

Here are four things to consider.

1. Start with more help at home

Getting help and support at home can help keep Mum or Dad well and comfortable without them needing to move.

Consider drawing up a roster of family and friends visiting to help with shopping, cleaning and outings. You can also use home aged care services – or a combination of both.

Government subsidised home care services provide from one to 13 hours of care a week. You can get more help if you are a veteran or are able to pay privately. You can take advantage of things like rehabilitation, fall risk-reduction programs, personal alarms, stove automatic switch-offs and other technology aimed at increasing safety.

Call My Aged Care to discuss your options.

2. Be prepared for multiple conversations

Getting Mum or Dad to accept paid help can be tricky. Many families often have multiple conversations around aged care before a decision is made.

Ideally, the older person feels supported rather than attacked during these conversations.

Some families have a meeting, so everyone is coming together to help. In other families, certain family members or friends might be better placed to have these conversations – perhaps the daughter with the health background, or the auntie or GP who Mum trusts more to provide good advice.

Mum or Dad’s main emotional support person should try to maintain their relationship. It’s OK to get someone else (like the GP, the hospital or an adult child) to play “bad cop”, while a different person (such as the older person’s spouse, or a different adult child) plays “good cop”.

3. Understand the options when help at home isn’t enough

If you have maximised home support and it’s not enough, or if the hospital won’t discharge Mum or Dad without extensive supports, then you may be considering a nursing home (also known as residential aged care in Australia).

Every person has a legal right to choose where we live (unless they have lost capacity to make that decision).

This means families can’t put Mum or Dad into residential aged care against their will. Every person also has the right to choose to take risks. People can choose to continue to live at home, even if it means they might not get help immediately if they fall, or eat poorly. We should respect Mum or Dad’s decisions, even if we disagree with them. Researchers call this “dignity of risk”.

It’s important to understand Mum or Dad’s point of view. Listen to them. Try to figure out what they are feeling, and what they are worried might happen (which might not be rational).

Try to understand what’s really important to their quality of life. Is it the dog, having privacy in their safe space, seeing grandchildren and friends, or something else?

Older people are often understandably concerned about losing independence, losing control, and having strangers in their personal space.

Sometimes families prioritise physical health over psychological wellbeing. But we need to consider both when considering nursing home admission.

Research suggests going into a nursing home temporarily increases loneliness, risk of depression and anxiety, and sense of losing control.

Mum and Dad should be involved in the decision-making process about where they live, and when they might move.

Some families start looking “just in case” as it often takes some time to find the right nursing home and there can be a wait.

After you have your top two or three choices, take Mum or Dad to visit them. If this is not possible, take pictures of the rooms, the public areas in the nursing home, the menu and the activities schedule.

We should give Mum or Dad information about their options and risks so they can make informed (and hopefully better) decisions.

For instance, if they visit a nursing home and the manager says they can go on outings whenever they want, this might dispel a belief they are “locked up”.

Having one or two weeks “respite” in a home may let them try it out before making the big decision about staying permanently. And if they find the place unacceptable, they can try another nursing home instead.

4. Understand the options if a parent has lost capacity to make decisions

If Mum or Dad have lost capacity to choose where they live, family may be able to make that decision in their best interests.

If it’s not clear whether a person has capacity to make a particular decision, a medical practitioner can assess for that capacity.

Mum or Dad may have appointed an enduring guardian to make decisions about their health and lifestyle decisions when they are not able to.

An enduring guardian can make the decision that the person should live in residential aged care, if the person no longer has the capacity to make that decision themselves.

If Mum or Dad didn’t appoint an enduring guardian, and have lost capacity, then a court or tribunal can appoint that person a private guardian (usually a family member, close friend or unpaid carer).

If no such person is available to act as private guardian, a public official may be appointed as public guardian.

Deal with your own feelings

Families often feel guilt and grief during the decision-making and transition process.

Families need to act in the best interest of Mum or Dad, but also balance other caring responsibilities, financial priorities and their own wellbeing.

Lee-Fay Low, Professor in Ageing and Health, University of Sydney

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Lee-Fay Low

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Lee-Fay Low (BSc Psych (Hons), PhD) is Professor in Ageing and Health, NHMRC Boosting Dementia Research Leadership Development Fellow, University of Sydney. She is a registered psychologist with a PhD in psychiatric epidemiology.

Prof Low conducts research that she hopes will make a difference in the world.
Her main areas of expertise are in rehabilitation and post-diagnostic support for people with dementia, home and residential care for older people, the impact of COVID-19 on people with dementia, stigma and dementia literacy, and people from culturally and linguistically diverse backgrounds. She is particularly interested in developing and evaluating interventions to improve the quality of life of older people. She has methodological skills in population studies, systematic reviews, clustered randomised trials, instrument development and evaluation, and translation of research into practice.
She has authored over 120 peer-reviewed articles, and three books on dementia. She is an active advocate in improving how older people are treated and cared for. Lee-Fay thinks that research is great fun, and even admits to liking statistics.

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