Friends, Family & Carers Forum

[tyme]

Your patience is paying off @Cernunnos . 

I am relieved to hear your son is getting the peer support he needs. This is so important, especially for teenagers.

As for your wife's improvement, I am also so relieved. As I mentioned in the past, this takes time, but it will be worth it. You will get your dear one back. As hard as it has been, it sounds you are being looked after. Hopefully, when she is well enough, you can look at options for psychotherapy. Just be mindful to take it VERY VERY slowly. A relapse may mean starting back further than where you started - which you don't want.

From experience, the meds may have side-effects, but make informed decisions about any changes. I remember I tried to get off meds in the past, and I ended up in a much worse situation. Now, I am so well, but choose to maintain my med dosage for years before making a slight reduction each time. Medically, I can be off them in a few weeks, but I've chosen to do it over yearsssss. As my treating team has said, 'if it's not broken, why fix it?'

I'm here walking this way with you @Cernunnos . Take it very slow and steady.

tyme

[tyme]

Good Evening @Cernunnos ,

How are you and your family? I hope things are better than what they have been for you.

Looking forward to hearing how you and your dear one are going.

tyme

[Cernunnos]

Thanks for checking in @tyme 

My wife has had two day releases on the weekend to come home for 8 hour stretches - which has been good for her.  It is still not clear yet as to the likely discharge date - while she has largely stabilised there is still some evidence of sporadic paranoia, and occasional bouts of medication non-compliance - but again this is greatly reduced over previous weeks.

One problem we are encountering is that she has pre-existing longterm generalised anxiety which means she really doesn't have the motivation to go take the opportunities to "mix" in the common room area or do activities like other in-patients, she is more likely to keep to herself in her room. So I think there is some thinking going on whether the better strategy is going to be to eventually discharge her straight home eventually with Community mental health team support rather than trying to "step down" to a lower dependence ward which will just be a new unfamiliar environment and possibly raise the anxiety up levels up again. Bit of a waiting game on a clinical decision now...

Both my son and I are doing ok. We went out to my wife's parents place for dinner tonight to foster a bit of family connection and support - especially as they haven't been able to visit her (as she is not willing for visitors other than myself at this stage).

[tyme]

Hi @Cernunnos ,

Thank you for responding.

Are there peer workers available to connect with your wife while she is in hospital so that she can maintain that connection out of hospital. It's so important that your wife feels 'connection' and belonging. 

You are doing an amazing job. I know it hasn't been easy, but your patience is paying off.

I'm glad to hear you are taking time out with your son. 

I look forward to catching up with you again soon.

tyme

[Cernunnos]

Hi @tyme 

Todays news is that she has been discharged - free of any ongoing Treatment Order but with an Rx for an antipsychotic & antidepressant.

There is a Community Mental Health service that will provide a point on ongoing contact with the "system", but they are willing to allow her to make her own proactive health decisions with her regular psychologist & GP - with a recommendation the antipsychotic continue for at least the next 3 months and the antidepressant under doctors ongoing review.  

She is happy & stable to be home. Of course - as I expected & discussed with the Dr - all the symptoms of the condition haven't disappeared, they are just 'manageable'. So there has been a light touch of paranoia tonight but nothing that is debilitating, just something to be monitored.

As is probably to expected - there is a large emotional release that hits a carer on discharge - all the things kept tightly on a leash. So I'm just doing some self-monitoring as well because my experiences are not really something she is in the position to hear about or assimilate at this juncture. She is still decompressing after 3 weeks.

[tyme]

Thank you for the update @Cernunnos .

It'll take some time for her to readjust. I'm glad you have been linked into the system for ongoing care. This is so important. I hear it has been a difficult journey, but I feel you are now in safe hands and you do have supports in place.

I believe now is about monitoring how things go and seeking support early. I strongly feel that knowing you are caring for your wife, the treating team are letting her go home. They obviously trust you.

Please don't feel you can't reach out to people. With the MH system, just keep trying. I've been through the public MH system, and I've had the most incredible support I could ever ask for. I'm not saying it was an easy time, but without their support, I know I wouldn't be here.

I look forward to hearing how you go in the not-too-distant future.

tyme

[Cernunnos]

@tyme - I did forget to mention we got an 'upgrade' on the diagnosis once organic issues had been ruled out - melancholic depression.

So I we now have a name to the condition we are experiencing.

Probably the most immediate thing I'm now 'working around' is her absence of memory over the past 3 weeks - so when I mentioned that my son & I had dinner at her parents the night before she was alarmed to learn her parents knew what had happened to her (they have a somewhat not straightforward relationship) - even though I had talked about her parents continuously during visits.  I had to rejustify telling them as a risk mitigation strategy in case she needed support - reminding her that she had at one stage stopped visitation permission for me. She said she understood, but she wasn't happy I took that decision out of her hands.

So I am becoming very aware how bumpy the readjustment period is going to be. My psychologist has advised me that it will be very unwise at this juncture to raise or talk about any of her delusions with regard to me over this period. 

Naturally as a carer you want to be able to explain & express the specific pain one goes through on the outside of the system, while you were trying to be supportive & advocate on your loved ones behalf. But as I am understanding now, there is probably a lot you will not be able to talk to them about for a very long time.

It is just hard to have them articulating all the these tings "you did wrong" or "should have done" knowing it is a conversation you really can't have yet. And that puts pressure on the relationship.

But these are things I will talk through with my psychologist so as to not let them consumer me.

[tyme]

I hear you @Cernunnos ,

I certainly will be a bumpy ride. And I guess it will be difficult to speak about the delusions etc to her, knowing she was clearly unwell at that time.

I just so pleased to hear that things are progressing. That's the main thing.

I'm also glad to hear you have a psychologist whom you can confide in. It's important to remember your MH and wellbeing.

tyme

[tyme]

Good Evening @Cernunnos ,

How are you travelling? Is your wife somewhat better?

I'm thinking about you and hope to hear from you,

tyme

[Cernunnos]

Hi @tyme - thanks for messaging

My wife is considerably better & controlled on medications. She has been very compliant with them, and is spending considerable time processing the events of the past month - as is quite self aware of where she got to and the nature of what she was experiencing.

I think both my son & I feel a sense of 'normality' returning to our lives - but I say that in a conditional sense in that life won't just return to as it was now that a PTSD/Major Depression diagnosis has been arrived at and will be something to be managed in an ongoing basis.

Thank you and the others in the support team for the assistance you have provided over the past weeks - it has been a roller coaster of emotions and you have provided a safe space to articulate thoughts without judgement, and it has helped move me through the darkest parts of the tunnel into a much more personally stable & empowered place.