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Like any chronic illness, dementia comes with huge challenges for the person living with it and usually those close by too, especially over the long run. There will be good days and bad days. For a family carer, it’s important to have some ideas for getting by on those difficult days. Here are a few to consider.
Ask for practical help
As a family carer of someone with dementia, there are likely to be certain things that you and only you can do. Help to get to appointments? Help with having a shower? Help with making sure a prescription is right, ready and able to be collected? All the details, all the hours.
But there will also be practical tasks that others can step in and do – so try to delegate these wherever possible to give you time to cope with other, often unpredictable and long care tasks. Laundry, cleaning, meal preparation, shopping – what is it that someone else could step in and do for you?
This may be through formal care providers or through asking a wider circle of family or friends. It has to be reliable, and regular, and more help than hindrance. It may take time to accept and ‘learn’ how to use care services. But seek it out sooner rather than later: you will be glad of it on difficult days.
Get emotional support
Most family carers find they need some sort of emotional support – either at critical points along the way, or throughout the caring journey.
This could be from other carers who are going through similar situations, in a carers’ support group that meets face-to-face or online.
It could be support from the wider circle of family and friends, or it could even be through formal counselling.
Set up regular breaks
Respite care – whether for a day a week, or a week at a time in a care facility – can help a family carer to have a break from their caring role.
This can take time to get used to, and may involve a few false starts, but it’s worth persisting with, to try to prevent burnout (a very real risk for family carers).
For a family carer, knowing that a respite break is booked into the calendar may help them find the strength to get through difficult days.
Find information resources
Perhaps your relative or loved one is refusing to leave the house. Or they have just put on three different outfits all on top of each other. Or they seem very distressed about something but you can’t work out what on earth they are talking about. All in all it is definitely a ‘difficult day’.
It may seem as if your loved one is extremely unusual and that this situation can’t possibly have happened elsewhere (it would seem simply too bizarre). So often with dementia, whatever it is you are going through, chances are there will be someone else who has had to tackle this sort of odd, difficult, frightening or frustrating situation before – and there will be a resource to help you.
So seek out information and resources on the particular difficult situation you are struggling with. Refusing help? Eating difficulties? Depression in dementia? Look online, but also ask for help with finding information and resources. Contact Dementia Australia’s national telephone helpline on 1800 100 500.
Access dementia-specialist support
Our service – the Dementia Advisory and Support Service – is one example of a dementia-specialist service that can offer help to family carers. We offer information, support and advice to family carers throughout Queensland, often teaching them strategies for responding in difficult situations. For more information contact 1800 Ozcare (1800 692 273).
Find out if there are dementia-specialist services in your area. Memory clinics are another example, and may also offer education for family carers.
Dementia Support Australia (DSA) is a free dementia-specialist service that operates across Australia 24 hours a day, 7 days a week to support people with dementia and family carers (both those living in the community and in aged care facilities). DSA give advice, information and guidance relating to difficult situations involving dementia. To find out more information about DSA, go to https://dementia.com.au/ or ring 1800 699 799 (24 hours a day).
Have emergency help information to hand
Our dementia advisors often work with family carers to prepare a plan for emergency situations – for example, if the carer’s health suddenly changes and they are no longer able to care for the person with dementia.
This is an important process to go through and can help family carers feel reassured that there is a plan in place. Pulling together important documents, contact numbers, and even a list of instructions is a job that is worth doing, for everyone’s sakes.