Lived Experience Forum

[BPDSurvivor]

I'm sorry to hear how tough things are @outlander . I wonder if anyone here on the forums can support you with networking with others in a similar situation as a carer. There must be some form of respite support out there for people like you. 

@Shaz51 , would you know of any respite services?

[outlander]

thanks @BPDSurvivor i have spoken to my aged care about support services like respite but unfortunatly because theyve classed my pop as being able to make his own decisions i cannot force him into respite. i did try but instead of it working out well and having that extra support he just tried to run away from home and i had to do round the clock care with his aggressive behaviours because i tried to get supports. he says he doesnt need it etc. i dont know how they can say someone has dementia and then int he same breath tell me hes still classed as having a sane mind and can make his own decisions

[BPDSurvivor]

@outlander , respite care doesn't have to be termed 'respite'. It's respite for you. Could you engage your pop in social events with a support worker to take him out shopping or a coffee? 

Im not sure how able he is, but in my local council , they set up events for the elderly such as walking, walking football, coffee catch-ups, dance, games, movie nights, day trips, art classes, exercise, yoga. All these events are low or no cost.

I also know people who go to the house just to have a chat to the person, watch a movie together, have coffee together. This type of connection is probably the type of respite your pop needs (in his own home) rather than sending him away to a facility. 

What are your thoughts? 

[outlander]

yeah @BPDSurvivor thats what he gets now. but its only 2 hours once a week even though i requested more. they mostly just sit here and talk depending which care taker he has on the day. sometimes they go out for icecream or something. he gets angry at me alot. calls them babysitters.

i tried asking him if he would like to go to like a mens shed or join a car club or a darts club but he said he wouldnt go anywhere near any of that . i asked whether he might like to join some of the other guys that go out on outings if he would go but flat out refused.
i wanted more facility respite because i live here too. so him having carers here doesnt actually give me a break.

[BPDSurvivor]

Very interesting @outlander . Sounds like he has a negative understanding of it all so he is very resistant. 

As stressful as it is for you at this time, do you think your pop is being reactive and stressed out himself, thinking he is not wanted? That can really play mind games. 

Sounds like he needs connection and friends. Change can be hard for anyone, let alone an older person. What are some things he likes or is interested in?

[outlander]

he doesnt accept that he has dementia. gets very aggressive about it @BPDSurvivor 

No i dont think its an unwanted thing. i think its more of him not accepting he is aging.
he likes cars, music, playing darts. all things i suggested. i even said maybe he could do some music lessons but didnt care for that either. he fights anything positive i say to him.
the problem with him is, even when he sees family he forgets. its very high maintence work tbh. his daughter visited the 2 days ago and he cant recognise the sense of time so is saying its months. hes seen her a few times plus went for dinner, seen my mum which is his other daughter, had a bbq with all the family about 2 weeks ago when our lockdown ended. his brother calls once a week to talk to him as well-hes a few hrs away so doesnt visit to often but my pop goes on weekends maybe every few months as well. he has a friend of his that comes down maybe once a week or fortnight, another of his friends walks pasts and talks to him every day/every second day.

[outlander]

people are forever proving me right and its sad. . its being constantly proven that unless i have something to offer then im not worth being around.

[BPDSurvivor]

I beg to differ on that one. I'm sure it's about finding who a you are around with. 

Things ages tough at the moment, but it didn't mean it will always be tough. Just hang in there.

I can't say I totally know what it's like to be in your shoes, because I don't.

I just want you to know we are hear for you.

BPDSurvivor

[outlander]

it has always been this way @BPDSurvivor through school, through my sporting events, even my own family and now the one place i thought it wouldnt happen and it did.
25 years old and instead it it getting better, it just keeps getting worse. what is the point of life if its not enjoyable

[BPDSurvivor]

@outlander , I didn't start 'living' until my early 30s - I came to the end of myself and this is when I worked with therapy that would work with me.

Before that, I resisted everything. I was striving to be happy. When psychiatrists and psychologists asked me what I wanted, I said 'I wanted to be happy'. I looked for different ways to be 'happy'. Years later, he stopped looking to be happy. I engaged in therapy and  now I can truly say I'm absolutely 100% satisfied and content. I couldn't ask for anything better.

I still tell people that I never thought I'd see today. I thought I'd never make it.

Yet I'm here. 

You are precious. It may be hard now but it will be worth it.

BPDSurvivor