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


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De Visu/Shutterstock



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.

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Is Mum or Dad OK at home? Nadino/Shutterstock​

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.

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You might need to have multiple conversations about aged care. CGN089/Shutterstock​

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.

This article was first published on The Conversation, and was written by , Lee-Fay Low, Professor in Ageing and Health, University of Sydney

 
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Its a very difficult subject to bring up with the family member needing help especially if they are still able to make even bad decisions for themselves and refuse to admit that they are not coping well. My dads world fell apart when we lost mum, it was very sudden and happened with no prior warning, one minute she was with us the next minute she was gone, my brother and I witnessed Dad slowly falling apart over the next 11 years after her death and could not do anything to help him, he was very stubborn by nature and refused to listen or believe either of his children when we attempted to convince him to accept any form of home help, he kept saying that he did not want strangers in his home, both my brother and myself lived over 400km away from Dad and my brother was only at home every 2nd week (FIFO worker) so we were pretty useless because of the distance and just ended up feeling powerless to help Dad, he even became stressed and grumpy if either of us came to stay for a few days, he just wanted to be alone, we knew that his grief over mum was consuming him but could not do anything to help him, he would not allow us to try. He called us both the day that he was diagnosed with prostate cancer and informed us that it was his decision to refuse any form of treatment, he could not be persuaded other wise try as we both did to change his mind. the situation became even worse when he decided that he would not go into care but would pass away at home in his own bed just as mum had done, where do you go with that, we could not refuse him it was his decision to make all we could do was be there when the end came. It was the worst week of our lives, watching the father we adored slowly and painfully leave us. Yes we had a community nurse coming in every day to check on him but we were left alone with him for the majority of the time, it was not too bad while he was still able to talk to us but when he became delirious and unable to communicate it became almost intolorable for us. we all, my brother and his wife myself and my husband made the walk to his bedroom endlessly just to hold his hand and make sure he was still with us, I don't know what made me suddenly run too him the moment that he left us but I was there when he breathed his last and my heart broke as I told him how much I loved him and wished him peace now.
 
Thank you, this is very timely advice for me. We are going through this at the moment with my elderly Dad who has had a stroke.
 

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