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Living w early on set dementia

Living w early on set dementia

Daddymac age 46 live in NSW father to 3 children oldest 23 a 12 year old 9 year old.

I was diagnosed at 43 years with Chronic traumatic encephalopathy (CTE) is a brain condition linked with brain trauma. in 1996 I was riding a push bike the front wheel had come away from the bike, I went over the Handlebar my head meeting the road 4 days in a coma 9 screws 2 plates each eye socket. A few weeks in hospital dealing w this event at 19 I got out hospital 3 weeks later I travel to South Australia spent few months there in recovery before riding a motor bike no injuries 2 years later I was playing Aussie rules a game I played since I was 11 years of age prior to my injury I was also playing Aussie rules had few concussions didn't think of it at the time. I eventually hung my boots up 13 years ago, my focus was more being a family man working full-time and being a volunteer fire-fighter 10 years of service now retired.

So prior to my diagnosis I knew had brain injury I was functioning had a full-time job as a social worker for 24 years in 2022 I was medically retired from a job I loved and passionate about. I am now stay home father w support from NDIS and living on centrelink my partner is my carer.

My goals each day is be up before my youngest goes to school engage with 12 year old whom is home schooled be in the present.

45 replies

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In response to: Living w early on set dementia

Re: Living w early on set dementia

@tyme thankyou for asking. Physically fit today and brain working rather well. Had to see a new phycologist today who wasn't my cup of tea. I think a key component is to listen, and don't fall back into inferred or projected queer stereotypes It's a little draining and disappointing. Hope your day was good too and thank you for asking.

In response to: Living w early on set dementia

Re: Living w early on set dementia

Not enough is done for the carer. The kids in this situation. We have young children. Finances are tight , my girl thinks she can just spend, it's the kids that are missing out. When she goes in full time care I doubt I'll get to keep our house . That's if her care doesn't chew it up so I have to sell. So hard @tyme

In response to: Re: Living w early on set dementia

Re: Living w early on set dementia

Hey @McFluffy , good to hear from you. I'm glad you feel physically fit today and your brain's working rather well! I think I'm the opposite lol! Finding a suitable psychologist can be tricky. I hope you find a more suitable one. At this stage, psychologists are so hard to come by, let alone being about to choose! But if you have the luxury of doing so, go right ahead!

I'd love to hear how you go with it!

@Harry25 , I'm sorry to hear how hard things are for carers. Is there a care team supporting your girl who can look at long term supports? Are your children's school/s aware of your situation? I wonder if they can find ways to support?

In response to: Re: Living w early on set dementia

Re: Living w early on set dementia

@Harry25 wow, what a terrible situation. I'd call it a shit sandwich. If it's any help, there is an ombudsman with offices connection s in every state (don't hold me to that). I did have a problem with NDIS once,, really the care provider company. I did find a polite but slightly pushy call for support from a state senator worked well. I know it sounds daft, but I also found a photo of me my dog added to all correspondence personased it. It's much harder to say no to someone you can put a face with and you like. Just my experiences, might not be best fit for you.

In response to: Living w early on set dementia

Re: Living w early on set dementia

@tyme good morning

my day is starting of greeting my kids good morning then of to physio w my son and spending the day w him w my support worker.

In response to: Living w early on set dementia

Re: Living w early on set dementia

@Harry25 good morning
NDIS is hard to navigate it took 3 attempts to get funding my career has taken care of all of that.
My experience that I learnt is using the right words and having a good OT occupational therapy write reports and other services that your daughter uses
Im Here for a chat

In response to: Re: Living w early on set dementia

Re: Living w early on set dementia

@tyme it's not so much have the opportunity to play around with finding a new psychologist, rather if you're there on the advice it's important for the psych person to listen. Particularly if you need to travel 8 hour return by bus and stay the night in a "foreign" city for the appointment. I don't need to hear about a nephew and niece are marching in the Mardi gras. Might be a big fat old poof... but I don't care. I don't need half the appointment listening to someone on leather armchair mucking about. Sorry to chew you're ear, but really pissed off. A useless appointment places me at risk. Last time I had to travel to a special specialist by plane, I ended up in ER with half the airport locked down and fed police mobilised due to a seizure. This psych person new about it and was part of the reason for being at the appointment, but no, had to listen to rubbish about drag. Again sorry to chew your ear it's not personal, just very miffed.

In response to: Re: Living w early on set dementia

Re: Living w early on set dementia

Hey @McFluffy ,

No stress! Don't worry about chewing my ear off. That's what I'm here for. You're human. You deserve to have your voice heard, especially if it comes to your care.

Do you have the support of a case manager who can pull all these supports together so each specialist can 'listen' to each other? It's so important there is holistic care - otherwise it's each to their own....

In response to: Re: Living w early on set dementia

Re: Living w early on set dementia

@tyme again sorry to chew your ear. And thank you for asking a cranky old bugger about his welfare. Yes, I do have a support team. Will be having a combined get together at the end of the month. We will chat about the person I'm not happy with and seek an alternative arrangement. It's just very very very annoying, and if your brain is full of holes it makes it tricky to understand. Again sorry to chew your ear.

In response to: Re: Living w early on set dementia

Re: Living w early on set dementia

Nah, go right ahead and chew my ear off 🙂 @McFluffy

It's also good to tell them what you want from the meetings too! Don't just focus on what you don't like about yourself.... eh?

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