Topic Tuesday 19/01: R-E-S-P-I-T-E, find out what it means to me...

[NikNik]

We talk about 'self care', 'looking after yourself' and 'respite' a lot in this Forum. There's a reason for this...

• Many people will spend more time per week caring for someone, than the equivalent of a full time job
• Many people who care for someone work FULL TIME as well!
• People in a caring role are 40 per cent more likely to suffer from a chronic physical or mental health condition.
• Carers have the lowest wellbeing of any large group measured by the Australian Unity Wellbeing Index.

(Reference: Carers NSW)

Caring for someone can be rewarding, but looking after ourselves is not only good for us, but also good for those we care for.

'Respite' is a bit of a buzz word, so during Topic Tuesday we will be looking at:

• Formal respite programs & what to expect
• Planning your own respite
• How to prepare for respite
• How to get appopriate care for your loved one

We also are doing a call out to all those who have taken respite, to share their stories.

Join the conversation 

[CherryBomb]

Hi Everyone and welcome to this session's Topic Tuesday on Respite.

A topic that may seem alien or familar for you. If you're a new or an experienced carer, I'd love to know whether respite is something that you've considered, or done? @Kiera80 @Sister @PeppiPatty @Alessandra1992 @GivingMick  @Cazzie I'd love to hear your input. 

For many carers, going away and leaving your loved one behind can create a sense of guilt. It can be hard balancing your own needs, and caring for the needs of others. I found this great resource from Carers Victoria that talks about how to prepare for respite. 

[BeHappy]

This might sounds like a silly question but what exactly is respite? In particular who provides it and how can I access it?

[CherryBomb]

Great question @BeHappy,

Respite is essentially when carers can take a break while someone else supports the person with a MI. Respite is where a person with a MI can be engaged in a range of activities including:

- Community activities;

- In-home support;

- within the family environment;

-  at a camp, holiday or weekend away, or

- during an overnight stay in a facility; 

Respite support is flexible and can be planned throughout the year so that there are regular or occasional breaks, that can include support for a couple of hours, a day, a weekend, a week or more unplanned when a break is needed at short notice and/or an emergency when there is an immediate need such as a carer going to hospital.

You can locate respite services here. 

Has anyone used respite? Or has any got any hesitations about using respite?

[3forme]

Hi to all,

Respite can be really difficult because its so hard to "switch off" the caring role. Even when my daughter is well and I'm relaxing and enjoying myself, thoughts creep into my mind and I wonder how she is doing, or if she is still well.

I have become much better at managing those thoughts over the past few years. I guess I have become more confident that she is doing OK and that she, or the people around her, can manage any crisis that may arise.

As I sit here and write, I also realise how far we have all come since she became ill. Respite wasn't possible in the early days of her illness. She needed constant care and was at my side at all times. Even having a shower was difficult! Respite for me was a cup of tea before bed at night, but at least that was something I could look forward to.

My daughter has now moved interstate with her partner, and I managed an overseas trip last year, all things that I never dreamed would be possible.

[BeHappy]

Hi @3forme

Yes, 'switching off' is definitely something that I need to learn how to do! Glad to hear that you managed to find some moments of peace amid the choas.

May I ask if you used any services in particular, or was respite something you managed yourself?

My concern that I struggle with is knowing precisely when it is ok to go on a break. It never really feels right even during moments of wellness, but maybe that something that I need to learn...

[Cazzie]

Respite can be as simple as a three hour shopping expedition without the "patient" or as complex as putting them into a clinic for days or weeks.
For me it's going to my sister's place for a couple of nights but my husband is a high functioning PTSD patient who can be left alone and can look after himself.
For me the respite is in the distance (130 km) between us. A phone call can turn it all to crap but he really knows better than to make the call.Respite works both ways too. My away time serves to help him understand my role in his life and his MI.

[3forme]

Hi Cherry Bomb,

I have never used respite services but my daughter spent quite a lot of time in hospital when she was very unwell. In the early days I spent every minute I could at the hospital with her, and my family and younger child rarely saw me. I realised that I felt guilty when I wasnt with my daughter and felt that I was the only one who could comfort her.

I see things differently now. If I was in that situation again and knew that my daughter was well cared for I would spend the time (not all of it!) by myself or with others. I found that it was really healthy for me to have a break and especially important for my younger child to have her Mum to herself.I found that I was more relaxed after I had a break and that flowed on to my daughter.

Surprisingly for me, it was healthy for my unwell daughter to have time away from me! She learned to ask others for help and developed her own ways of managing problems. She is very independent now and I think that respite has contributed to that.

[CherryBomb]

I'm enjoying hearing about people's proactive approaches to respite, sounds like they've had some really positive outcomes too.

An interesting point raised by  @Cazzie  and @3forme is that respite doesn't need to always involve a respite service, but can simply involve your own down time. 

I'm wondering if you have any words of advice or pratical strategies for newer carers who might struggle with knowing how to 'switch off'? 

[3forme]

Hi BeHappy,

Wow, its so hard to know when to take a break.  At times I wasn't able to leave my daughter as the risk was too high. I was guided by her caregivers, but I also developed a "sense" of how she was (which could change by the hour!).

My early respite was watching comedy shows on TV, as I could be at home but "lose myself" in the show. I eventually graduated to a 10 minute walk. It was difficult to ask others to look after her as so many people are scared of the "psychosis" label.

I think any respite is good, even if its ten minutes of not thinking about your loved one, and the situation - and thats really hard to do!