When Caring for Mum or Dad Becomes Something You Never Expected

Caring for a parent with dementia can be one of the hardest roles an adult child will ever take on.

You may be in your 50s, 60s or 70s, with your own children, partner, work, home and responsibilities. Yet suddenly, you find yourself caring for the person who spent much of their life caring for you.

One of the hardest things to accept is that dementia can change the parent you know. As the disease progresses, changes to the brain can affect memory, communication, personality, emotions and behaviour, sometimes resulting in anger, suspicion, repetition, resistance or behaviour that feels completely out of character.

For an adult child, this can be incredibly frustrating and heartbreaking. In those moments, remember that it is the dementia brain you are responding to, not the parent you remember. Feelings of frustration, guilt, sadness and exhaustion are natural when you are doing your best to care for someone you love.

You may question whether you are doing enough or wonder if you are somehow making things worse. The fact that you reflect on your care and worry about getting it right is itself a sign of how deeply you care about your parent.

When behaviour becomes challenging

When your parent becomes agitated or distressed, trying to reason with them may not work. Their brain may no longer process information as it once did. Sometimes behaviour is communication when words are no longer enough.

Try to:

• Remain calm and speak slowly.
• Reduce noise and other stimulation.
• Avoid arguing or trying to prove they are wrong.
• Acknowledge their feelings, even when you don’t agree.
• Gently redirect them towards something familiar or comforting.
• Consider whether they are hungry, thirsty, tired, uncomfortable or in pain.
• Look for what the behaviour may be communicating.

But what about the grief?

There is a type of grief that comes with dementia that isn’t always discussed. You are watching your parent change while they are still physically here.

You may grieve their conversations, humour, independence, personality and the role they once played in your life. Each month may bring another small loss, while you are still expected to keep going.

That grief can sit alongside exhaustion, guilt and responsibility. You are not failing. You are grieving while caregiving, and that is an enormous emotional load.

Helping children and grandchildren understand

Younger family members may struggle to understand why their grandparent behaves differently. Explain dementia simply. Tell them that their loved one’s brain is unwell and that some behaviours are caused by the illness. Reassure them that it isn’t their fault and encourage them to talk about their feelings. Most importantly, help them maintain connection through familiar and enjoyable activities.

Activities don’t need to be complicated. Music from their younger years, family photographs, gardening, painting, cooking, household tasks, dancing or simply sitting together can create meaningful moments. You don’t always need to fix something. Sometimes holding your parent’s hand and sharing a familiar song is enough.

Accepting or seeking help does not mean you love your parent any less. Sometimes, getting support allows you to remain the daughter or son, rather than becoming only the carer.

What extra support is available?

You don’t have to manage everything yourself. Depending on your parent’s needs and available funding or services, consider:

• Geriatrician: Seeking a review from a Geriatrician can help you understand the options for symptom management and form a routine. This goes well in conjunction with a clinical assessment from your home care provider.
• Clinical assessment: A nurse can assess behavioural changes, identify potential triggers and contribute to a behaviour support plan (nursing support).
• In-home support: A support worker can provide companionship, socialisation and assistance at home while giving you time for yourself (respite).
• Social outings: Support workers can accompany your parent on walks, shopping trips, appointments or community activities.
• Centre Based Respite: Meaningful activities and social interaction for your parent while giving you valuable time away from your caring responsibilities.
• Carer support: Counselling, carer groups and dementia-specific services can help you manage the emotional impact of caring (carer gateway).

When you feel frustrated, guilty or overwhelmed, remind yourself: It’s the dementia, not your parent. Your parent may be changing, but your love and connection can still exist in different ways. You are doing your best in an incredibly difficult situation. Your perspective and feelings are valid, your need for support is a positive thing not an admission of defeat.

For more information and support, you can reach out to your Geriatrician or Care Partner to see what services are available for Dementia support and respite through government funded packages.

You can also reach out to Dementia Australia for more information and connection to the National Dementia Helpline:

• Free Call Helpline: 1800 100 500
• Do you need a translator? Call the Translating and Interpreting Service on 131 450.
• If you have a hearing or speech impairment, call the National Relay Service on 133 677.

Written by Lisa Cutelli – Clinical Nurse Specialist – Gerontology & Neuroscience