My Dad needs immediate support, tips & advice

[MummaG22]

Hi all,

First time poster, I'll try keep the story short but it's quite a complex case.

My Mum is my Dad's carer but I'm sort of their backbone, finding help & resources for them while they both crumble. My Dad has a cognitive disability & we believe Bipolar 1 rapid disorder. My Dad has been in & out of the mental health ward. He has many medical professionals, a psychiatrist (who is hopeless), a psychologist (who doesn't really help), GP (doesn't do much). He also has support from other sources like OneDoor who've helped him apply for NDIS but they haven't yet given him any immediate help. No one has given him any tips, advice, activities to do when he is experiencing an episode.

A usual day for my parents is Dad refuses to get out of bed & waits for Mum to bring him breakfast. He yells at himself all day telling himself things like "you're not hopeless, just get up & do it", "why do I feel like this", "why can't I just get out of bed". While yelling out things, he's constantly huffing & puffing all day, he hits himself with his hand, hits & punches walls/doors/hard surfaces. He says & does really random, odd things for example, go out of his way to check the time & then say "if I was still at my old job I'd be home in 20 minutes", things way out of context & things from years ago that simply don't matter anymore. He often has panic & anxiety attacks where if for example Mum is helping him get ready to go somewhere, he'll start shaking & breathing fast & heavily while putting shoes on & saying things like "but I don't want to go, I don't feel like going", "maybe I'll just stay here", but he won't refuse to go, he just says things like that waiting for someone to say "ok we won't go" knowing that if they don't go, he'll just be sitting at home yelling at himself, making no progress.

No one has given my parents any real immediate coping strategies (except myself) to help in panicky situations like mentioned above. I've suggested Mum reminds Dad to smell the roses & blow out the candles when he's panicking, but coping strategies like that only help in that moment, they don't take away the dark thoughts in his head. My question or plea for help is how can I help or point them in the right direction of help, so Dad doesn't have to suffer, Mum too? When Dad goes to hospital, he's fine, not depressed, he's actually very happy there. He refuses to go initially but he knows when he gets there he immediately perks up. As soon as he gets back home after the 3 week program he is back down again. Hospital is just a bandaid for him & respite for Mum. They/we need immediate help & coping strategies. 

THANK YOU in advance, any help is greatly appreciated.

[Former-Member]

Hey there @MummaG22. I'm TuxedoCat, one of the peer support workers here. I'm sorry to hear that this situation has brought you to the forums, but I'm glad you're here. I hope some of the wonderful carers her can give you support ❤️

It sounds like you and your mum are struggling with some both immediate coping strategies, but also need some longer term solutions to support your dad. Without these, you're feeling a little hopeless and frustrated. Is that right? 

Firstly, it sounds like you have been a wonderful support for your parents. Helping identify resources is such a practical way to help through this time. Persevering through this, even while it's been hard, is a real strength.

Can I ask what engagement you and your mum have had with the professional supports, either with or without your dad being there?

Here some resources which might be useful

• The Carers gateway is a great resource for finding support for a person being cared for, but also to help carers and their mental health
• Here is a SANE guide to bipolar. In it it mentions developing a specific wellness plan with people. Do you think this could help if you and your parents did one together?
• Mental Health first aid for someone with an intellectual disability. There might be some useful insight in there for your dad, even though he has a cognitive disability
• All forum posts related to Bipolar and caring for a parent

Also, do you and your mum have your own supports in place? It sounds like you've been coping with a lot ❤️ 

Here with you,

TuxedoCat

[MummaG22]

Hello @Former-Member & thank you for your comment. I hope I'm replying in the right spot

Yes that's right, we do feel hopeless & frustrated, frustrated as to how my Dad can walk out of medical appointments & a 3 week hospital stay with no help. Also frustrated & dumbfounded how my Mum cries to everyone she speaks to, even telemarketers & receives nothing more than a "let's meet for coffee" or "I'm sorry you feel that way".

Engagements we've had...

My Mum attends pretty much every appointment of my Dad's, she has to because Dad can't hold information or understand how a lot of things work or the importance of things. I myself am not very involved with Dad's supports aside from writing a letter about how his diagnoses affect me & my kids to supoort his NDIS claim. The only other time I've been involved was once within the past few months we had a family conference type appointment with my Dad's psychiatrist where I was on the phone to my Mum listening to the conversation in the specialist's rooms. That was more so I could get an understanding of how Dad's psychiatrist is treating Dad, where his head is at ect. It's frustrating me enough where I feel like I NEED to attend his appointments because my Mum doesn't ask the hard questions or gets too upset & forgets what they're there for.

My Mum got in contact with Carer Gateway a long time ago. They set up a package for her where she went on a retreat for a few days & enjoyed some me time. Although the retreat was mostly good for her, it didn't help in the long run, it was just a bandaid. Carer Gateway set up respite for my Mum but they could only provide carers on days my Mum didn't need respite. They set up cleaning for an hour a week but nothing got done in 1hr & cleaning is not something my Mum needs help with. So all of that was cancelled & no real help has been received from Carer Gateway in their experience, certainly no long term or immediate help.

I see a psychologist myself but not specifically for this issue & I haven't yet brought it up to this degree with my psychologist. It may affect me more than I realise but it doesn't affect me anywhere near as much as my Mum because she lives with Dad & I don't, I couldn't.

My Mum has contact with someone at OneDoor locally but that person is no REAL help. She asks Mum if she'd like to come in to her office or meet for coffee & have a chat. Mum usually is in tears the entire appointment/coffee date. Every time she gets home from seeing anyone who's meant to be of some type of support, I ask her how did it go & she says good but when I ask what did they suggest or what are they helping you with she says nothing really. So ultimately they just lend an ear which is very nice, but again just a bandaid & not the help needed immediately. Other than those supports, Mum has recently met a friend who is a carer for her ex husband. The ex husband's diagnoses are different from my Dad's but my Mum & her new friend get along quite well & just lend an ear to each other while trying to figure out what's next for Dad.

Thank you for those links, I'll check them out now.

[Former-Member]

Hi there @MummaG22, wishing you a warm welcome to the Forums. 😊 My name is Sirius, one of the peer support workers here at SANE.

It sounds like your parents (and you) have been doing everything right and I'm really sorry to hear as a family collectively you haven't been able to find the resources and coping strategies you all need to support your Father.

For your particular situation, I think a good place to start, if you're open to the suggestion for the three is by reaching out and calling  SANE's free counselling service on 1800 187 263, available from 10am to 10pm, Monday to Friday. The counselling service here can provide you with the details of support groups and other services for your father but also for family carers in your local area. 

I'll also share a few handy links that might be helpful too:

Bipolar Disorder (more general)
https://www.sane.org/information-and-resources/facts-and-guides/bipolar-disorder

Specifically for Carers and Family members
https://www.sane.org/information-and-resources/facts-and-guides/families-friends-carers

Carers Gateway -  services for people with a disability and their carers
https://www.carergateway.gov.au/

Bipolar Australia
https://www.bipolaraustralia.org.au/bipolar-information/treatments-for-bipolar/

Blackdog Institute - Bipolar disorder help & support
https://www.blackdoginstitute.org.au/resources-support/bipolar-disorder/help-support/https://www.bla...

Prevention and Recovery Centre (PARC) Support 

https://icla.org.au/parc/

I'm also going to tag in some of the Forum community that may have some pearls of wisdom to
share with you. 
@ArtistZ @pinklollipop15 @Olga @frog @CJones @BlueTrane @FloatingFeather @Appleblossom @Faith-and-Hope @Queenie @Delicatessen @greenpea @HenryX @SJD @Anastasia 

I hope you'll find lots of support in our wonderful community. 💜

Sirius✨

[Marulu]

Hi Sounds like your family is having an incredibly difficult time.. I have bi-polar and remember when I had my last manic episode I was completely out of control.  I have also had times when I couldn't get out of bed so I know what that's like. 

I know this might sound obvious and I don't know if there are many psychiatrists in your area but what really helped me was getting a new psychiatrist and having my medication reviewed.

Is he in touch with any organisations for people with mental illness such as BrookRED or the Club house? Is there an Association of Relatives and Friends of people with a Mental Illness ARAFMI in your state?

[tyme]

Hi @Marulu ,

Welcome to the forums!

Thank you for sharing your experiences. It plays a huge part in encouraging others.

Just a quick hint that if you want to tag others to read your posts, you can type "@" in front of their name. This will then notify them of your message.

@MummaG22 , I believe the above message from @Marulu was for you. Hope you are doing well @MummaG22 .

tyme

[MummaG22]

Hi @Marulu 

Thank you for your comment. Sorry to hear of your diagnosis, I hope it is managed well & not causing you much grief.

Seeing a different psychiatrist is on the cards & I believe it's a MUST do as his current psychiatrist basically threw his hands in the air & said its up to us to figure it out. His current psychiatrist is the same one he sees every 2-3 days when in hospital.

Thankfully we do have an ARAFMI here in NSW & we plan to give them a call next week. It astounds me that what seems to be basic info like this is not given by any medical professionals or other support services as an option.

The health system, in my experience the mental health system, is beyond broken.

He is in touch with a couple of mental health services, one being OneDoor. No help so far except help with applying for NDIS which obviously we appreciate greatly but we need something more immediate, we've been told its an 8 month wait for NDIS. I haven't heard of Book RED or The Club House. I'll Google them, thank you.

[MummaG22]

Hello @Former-Member & thank you very much for your comment.

I appreciate all of the info you have given me, I'm sure we will collectively find help from your suggestions. I will call the SANE free counselling service next week, I hope I can get my parents to as well, at least my Mum. Dad gets anxiety talking to anyone except Mum & I when he is low, he won't even answer or return his mother's phone calls, poor thing.

I have had a read of some of the info you sent. There is a very extensive amount of info there which is great. I've already passed some on to my Mum. Will keep reading when I get time & hopefully work something out from the info.

Thank you for the tags of other who may be able to help as well. I have already received more help here than I think my Dad has ever received 🙏🏻

[Delicatessen]

Hi @MummaG22 it sounds like you’re in a world of pain. I’m a long term bipolar sufferer. Here are some ideas…

Support for me (journey varied to get here). Being prepared to change psychiatrists when the relationship just isn’t working any more - this is incredibly emotional and complex if things are going wrong. Having the right medication and really pushing back when somethings not right (this is a major focus for me and I’ve had to endure terrible reactions over a long period) - and make your doctor disclose the pros and cons before committing.

For my supports.  I have only a tiny group of friends I’m comfortable discussing bipolar with (it is a source of shame for me so this small group reduces my anxiety) and only one primary support who has been in my life for a very long time. I would be lost without these supports. My primary support has just advised that he doesn’t worry too much about me getting unwell as he knows I’m doing everything I can to stay well (he is fully aware which really helps I think).  He did however ask that the numbers for my psychiatrist and GP should be more handy just in case.

For both sides. While accessing support options on a range of fronts can be a priority made urgent when someone isn’t well, having some time to look at what you specifically need (prioritised) before you reach out can save time and reduce stress. The offerings of the providers can often be very narrow (but promise the world broadly and generally). Unfortunately finding the right fit can take time (or searching can feel like an exercise in futility).

Separately though, I would have to say that exercise (specifically walking) has changed my life - and it definitely helps my mental health. Doesn’t matter for how long or for how far, try to get out and about as much as you can. All of you that is….

Take care.

[MummaG22]

Hello @Delicatessen,

Thank you, I really appreciate your message. 

Walking is great & I know it helps in so many ways. My Mum has pushed my Dad several times to get put for a walk with her. Either he won't go, goes but doesn't feel any better during or after or goes & feels ok during & back down afterwards. My Mum does her absolute hardest to get Dad out & about, takes him to lookouts, markets, days out in general & it doesn't help longer than the time they're out unfortunately. I think having a cognitive disability means he responds very differently than most people to everything, whether it be going for a walk or trying breathing techniques or talking to yourself with kind words rather than nasty. He simply can't switch his focus or understand.

We definitely need to change his doctors, all of them. I keep pushing my Mum to do it but I think she's scared of what the doctors & my Dad's sister & Mum will say. This is one reason I believe I need to be more involved. And yes, my Dad is still trying to find the right medication. His medication hasn't been changed enough since his symptoms started so this is a push I'll make. 

Thank you so much for your message, you've given me a new drive to be more involved & make change sooner rather than later!