Law Talks Episode: How relationships shift when one partner becomes the carer

Robyn: Good morning and welcome to another edition of law talks here on 4CRB. And today we’re joined by Bindy Marshall, an Accredited Aged Care Professional and aged care paralegal at Attwood Marshall Lawyers. Thanks for being here, Bindy.

Bindy: Thanks for having me, Robyn.

Robyn: Well, today we’re talking about a role no one expects to take on, but one that many in our community find themselves living. Going from partner to carer.

As we age, relationships can shift in ways we never imagined, especially when illness, disability, or cognitive decline changes the person we’ve shared our life with.

To get us started, Bindy, how might caring for your spouse impact the relationship?

Bindy: It’s a huge adjustment and a real test of any relationship. For many, there’s no question of wanting to care for the other person they love. We honour the vows we made. But depending on your partner’s illness or diagnosis, things can really change.

Emotional outbursts, loss of intimacy or behavioural changes. It’s easy for others to say, oh, it’s just the illness talking. But when harsh words are directed at you, it can really hurt. It’s tough to stay emotionally grounded.

Robyn: Yeah, it’s quite a heartbreaking scenario. So, let’s talk about some of those behavioural changes. What might a carer be up against?

Bindy: When cognitive impairment really sets in, your loved one might become paranoid, depressed, or even delusional. It’s incredibly hard when your partner forgets who you are or starts hiding things around the house. This is not uncommon. I will never forget attending a client’s home where her husband had to be admitted to hospital due to his delusions getting to the point where he thought she was a ninja and he was trying to choke her while she was making the bed.

This lovely lady managed his health decline for so long, but that moment forced her to seek medical intervention, and consequently the gentleman was placed into care.

But caring for someone with behaviours can often leave carers feeling really unappreciated and frustrated or even angry. That’s really normal. Taking a moment to step outside and just take a deep breath is sometimes the best thing you can do in those situations.

Robyn: Bindy, what other consequences might there be when one partner becomes the carer?

Bindy: A lot of older couples are co-dependent. For example, a husband might suffer with a cognitive impairment and the wife might be crippled with arthritis. But together they make it work. He still drives with her direction, or we all know what that means, and he still opens the tins and bottles for her. She still makes all the meals with his assistance.

So, what happens when you take one of them out of the equation? Well, unfortunately, I did have a client that this happened to. The husband helped the wife open the jars and drive to the shops because she suffered with debilitating arthritis. And one day I visited her and found her looking really unwell. She was quite emaciated. She lost a lot of weight and since he went into hospital, she couldn’t get to the supermarket or open any food for herself. She had no support due to them obviously remaining fiercely independent and refusing outside assistance. When I opened her fridge, her fridge was bare. I discovered that she was living on ice creams from the home ice cream man, and this is just one scenario out of many codependent issues with couples as they age in place.

It’s a stark reminder of how fragile independence can be when there’s no support system.

Robyn: Yeah, one hundred per cent, Bindy. So how can outside influences help or hinder in these situations?

Bindy: Yeah, good question. Family and friends can often mean well, but if they’re not there day and night, they can be really quick to judge. I often hear children criticising their parent for considering respite care for their dear spouse.

But they don’t see the exhaustion, the late nights, the wandering, the risk of accidents. I’ve had clients break down in my office just completely burnt out.

Often with a dementia diagnosis, the person doesn’t sleep as much as they used to. This means that the person that’s caring for the partner is often having to get up and keep an eye on the partner to ensure that they don’t leave the house or burn it down the middle of the night.

This can be the start of carer stress. Being on high alert all the time exhausts your adrenal system as you’re in a constant state of fight or flight. If someone questions your decisions to seek help, I often suggest if they’d like to do the caregiving for a week, most of the time the answer is no.

Robyn: Yeah, I can imagine that would be the case. So, Bindy, the guilt must weigh heavily, especially when making the tough call about respite or full-time care.

Bindy: Absolutely. Carer stress is very real, even when someone knows they need a break, they’ll often cut it short because they feel bad. But as a carer, if you don’t put measures in place to protect yourself and take the breaks, you will become unwell yourself. You can’t pour from an empty cup. If you don’t look after yourself, you won’t be able to keep looking after your partner.

Robyn: And that’s a very important point. What happens if the carer themselves becomes unwell, where can they access help urgently if required?

Bindy: Yeah, this often happens more than people realise. Some carers won’t even call an ambulance if they need medical help because they are too scared to leave their partner alone. But if you are in this situation, please write this number down and stick it on the fridge. The number is 1800 422 737. That’s the 24/7 emergency respite line through Wellways or Carer Gateway for both Queensland and New South Wales.

If you need to call an ambulance, tell them you’re a carer and they can also arrange for your partner to come with you to hospital and be safely looked after on your behalf.

Robyn: Being a carer is incredibly difficult. So what supports are available for carers?

Bindy: Sure, there are three main supports or three main options.

First is the support groups. I would encourage anyone taking on the role as a carer to look into support groups. Often groups meet regularly, they have a cuppa, and they help you feel like you’re not alone.

Secondly, is respite care. There are day respite facilities available on the Gold Coast and in northern New South Wales. And being able to drop your loved one off at a respite facility and go and do the grocery shopping or attend to appointments for yourself, can really help to ease the burden of being a full-time carer. Often day respite centres are full of activities like games, reading, painting for example. They love it.

And finally, open communication with your home care provider. It’s really important to discuss with your home care provider or NDIS provider what support you need and tailor this to suit both you and your partner.

Remember, your home care is consumer directed care and having these discussions early is really important. Having a good rapport with your home care provider is essential as your loved one needs to continually change with their care needs. And you’ll need a provider that’s adaptable to work alongside you.

Robyn: And is there anything else as a final takeaway that people should think about to make this transition easier?

Bindy: Yes, definitely. Absolutely. Plan early. None of us know what the future hold, but having conversations ahead of time and putting the legal documents, the right legal documents, in place, like an enduring power of attorney or an appointment of an enduring guardian, means you’re prepared for whatever you need to do to make the important decisions on behalf of your partner or yourself. And having a good understanding of what their wishes are and how best to care for them.

And if you’re starting to think about aged care or home support, don’t do it alone. Speak to an aged care accredited professional who understands the system and can guide you. It’ll take a huge weight off your shoulders and help you support your partner with confidence, while you also look after yourself.

Robyn: Yeah, well, this conversation has highlighted just how complex and emotional the transition from partner to carer can be. And as you say Bindy, planning early, asking for support and giving yourself permission to rest isn’t selfish. It’s essential. Thanks for joining us today, Bindy.

Bindy: Thanks, Robyn.

Robyn: You’ve been listening to law talks here on 4CRB, which you can hear every Friday morning from 9 o’clock.