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All dementia is different and difficult in different ways, so I don’t want to claim my experience will be the same as yours.

Both my grandmothers have been in full time care of my parents until recently. One with strong dementia and depression, the other mild dementia but argumentative. It was very stressful for my folks, particularly with one being a nightly wanderer and fall risk.

Government support packages were hard to navigate but they did get some at home assistance. We had a really nice carer come in a few days per week to help with showers and a little bit of cleaning, but the company behind them was awful to deal with and would try to reschedule or cancel all of the time. Definitely still worth it though.

Getting carers allowance (money/week) took a lot of paperwork. It was not much money, but it was something.

Now my parents only care for one of my grandmothers and only for half of the week (family is now taking her for the rest). This is still difficult but much more manageable.

My other grandmother is now in a nursing home. This was really hard for everyone, both emotionally (family saw nursing homes as places you go to die) and practically (first nursing home run by the Salvation Army was neglectful; hospitalised after 4 days). It’s working out much better now, my grandmother seems to be going OK (on average, the dementia and depression are intermittent) and the family is coping better with just occasional visits rather than 24/7 care. x

If your loved one lives alone: get a doctor’s advice and get them assessed. There are support services for them that can come in and help them occasionally.

If you are taking care of them full time: the government offers a few weeks of “respite” every year. This is essentially temporary nursing home stays, fully paid for. The idea is that you are a better carer if you take breaks; and this also lets you see how they respond to a nursing home without committing.

For nursing homes: visit them and try them out first with respite. They vary a LOT in terms of what they can cope with and what their staff are like.

Yes, my grandmother has middle stage Alzheimer’s. She was diagnosed a few years ago after a few years of what I guess were early stage symptoms (though I didn’t recognise them as such at the time). It is very challenging for my grandfather, who has been married to her for over 65 years at this point. He has his own issues physically and is also quite forgetful, so attempting to care for her 24/7 is a massive weight. The whole family has been helping out, some are doing the cleaning, some are taking them out for activities, my partner and I cook and deliver some of their meals. They receive some government assistance as well but I don’t handle any of that so I’m not sure how extensive it is currently.

It is very surreal to see her in this state because she was always extremely chatty and would call the younger ones into the kitchen for the weekly dinners she would host so she could talk our ears off with some educational lesson about cooking or something. She would routinely have 1+ hour phone calls with members of the family and it was genuinely difficult to exit a conversation with her because she could just talk endlessly without ever getting bored. I used to find that annoying but now it’s just sad to think about, she can’t hold an extended conversation with anyone and it feels like so much of her personality has disappeared so quickly. She usually seems okay whenever I see her and we can have some short conversations and show each other love but some of the stories from my mum (who spends a lot more time with her) are disturbing.

I’m sorry if that was a grim read but I just thought I’d share anyway, so you know there’s someone else here experiencing something similar. I don’t have any advice or anything but I’m happy to chat about it if you ever feel like sharing more.

Very sorry to hear that. I have had experience with it, and navigating some of the aged care realm.

A lot depends what stage a person is at. Some things I wasn’t fully aware of that I recommend, and this applies to not just dementia, but any elderly person.

• Make sure you have Will, Power of Attorney and Enduring Guardian set up.

• Engage Aged Care as soon as possible. The earlier you can get ACAT assessments, the better. It can take 6-12 months before any assistance is approved, so you need to not wait till help is needed. Also, learning about the system now will save you great stress and anxiety later on. You will need ACAT assessments if you want to get assistance at home, or to apply for residence at aged care homes.

• Check out your local council. Some of them have respite or other assistance for seniors etc

• Get and take all the help you can. This is not a pride or charity situation. It’s about getting all the help your Dad, you, and your family deserve. And that enables you to get and/or provide the best help.

• Lastly, you and any carers need space and time. You can’t provide your best if you’re burned out. Make sure you get time for yourself and your own family and friends. Eg, You can get up to 63 days a year respite (once you get the appropriate ACAT approvals)

Sorry, and I don’t have advice. But I did, long ago. Had a grandparent with dementia. They were overseas so i never saw. My mum went over though. She said there were times when it was just like normal, and those were happy and the memories she cherishes.