Friends, Family & Carers Forum

[Former-Member]

Hi @Determined
Started this new thread. Can I first start by letting you know that you are not alone. Many of us in this forum have felt anxious and lost. Can I ask what support you have in place for yourself? It has really helped me to talk things out with someone who understands.

A suggested medication change is one of those times when carer anxiety can become elevated especially when there is what I call 'pear shape potential'. Mr Darcy is going through such a change at the moment.

I found out that when I am concerned or anxious I can come across as being confrontational and was totally unaware of this and I was most grateful to the person that told me.

When dealing with the psychiatrist, I apologised in advance and said that I could come across that way inadvertently, that my concern was for my husband's well being. I explained why I was nervous about the change and asked what benefit could be expected. I made sure I knew what to look out for in behavior changes. At the end of the day I did not want my man to miss out on a med that could really help due to my own fears.

A few tips:
1) what is the expected benefit?
NOT why are you prescribing this
2) I am nervous about this change as ...
3) How will we be able to gauge if there is improvement
4) when will this be reviewed?
5) I am concerned as in the past .... happened

Take care,
Darcy

[Lunar]

Hello @Former-Member,

Those are some really helpful tips that you have written above, it's really great that you have that insight to know that when you are concerned or anxious that you become confrontational which can further elevate those anxious feelings if you are receiving feedback from others that is not as supportive as you would like or need at that moment.

Thanks for sharing 🙂

[Former-Member]

@Lunar
I learn a lot from the collaboration of carers and look forward to further tips and advice as to how they handle these situations.
Darcy

[Determined]

Hi @Former-Member

Thank you for your reply and new thread, your tips and encouragement are appreciated.

I understand about coming across as confrontational when concerned or anxious. I have often been accused of being unnecessarily tense even when I feel I am happy and having a good day. Possibly because even when things are going well I am watching and waiting for the next meltdown. Something I am conscious of and trying to address.

Re support for myself? I have been seeing a psychiatrist for a couple of years (just wants to medicate me) and different psychologists but have not been able to talk about specific worries or how to deal with my wife’s illness as they have been intent on focusing on me being depressed as a separate issue rather than helping me to understand and accept my wife's illness. Unfortunately, no matter how hard I try I tend to switch off to this limiting their effectiveness. (I feel that any depression or anxiety I may have is the result not the cause of my inability to understand how to help my wife (and currently to manage full time employment) not the other way around, that doesn’t seem to make sense but don't know how else to describe it). I did manage to link with a psychologist towards the end of last year who was able to listen to my barriers without seeing me as oppositional or difficult, I am hoping to be able resume this connection when that particular clinic resumes again in the next month or so.

It took me a long time to even see a mental health 'professional' for myself as when I went to a psychologist for guidance and support early in our journey and his advice was to leave my wife as she was making me unwell.

Outside of professional help? not much. I have only in recent weeks reached out to some men in our church who I can trust who I can talk to about our current situation and for some prayer support. (Faith has been my biggest source of strength through some of our most difficult times.

Unfortunately, I really struggle to ask for help from people we know because
1. I don't want to come across as needy and whining all the time.
2. I don't want to be seen as taking negatively about my wife or talking her down, or risk having people think less of her 😞

Re family, the only people who know there is a problem are our parents, (everyone else just thinks she is difficult and antisocial) While wife's parents have been a huge practical support and try hard they don't really understand (why can’t she just take a pill and be better already), but at least they try hard and mean well.
My mum has only in recent times pretended to care other than writing her off as negative and unreasonable. Again she has been a big practical help in recent times with our 3 children- aged 1 – 10. (In her defence she has her own trials).    

This is why I have been so happy to come across this forum when trying to find stories about proposed treatment. Sharing anonymously makes it easier rather than burying feeling and emotions. It is also easier to be able to type something out, reflect and amend as necessary, unfortunately once something is said it can’t be taken back.  Even writing this reply has taken some hours as it is not in my nature to ‘complain’, even though I understand the benefits of sharing.
Also just reading other people’s stories and how they manage (or don’t) reminds me that I am not alone.

Re the new treatment, This relates to ECT therapy not medication, I will share about this (reason for my concerns and reservations) as a question in a new thread later tonight if I get the chance.  I have been waiting for guidance from the forum team to ensure that the specifics of my question complied with community guidelines before commenting. (Thanks to the team for their prompt reply, very much appreciated). In the doctor’s defence, he did offer me the opportunity to call him to discuss my concerns. It just would have been nice to be included in some way in the original discussion. (I was just outside waiting). Also I struggle to effectively communicate over the phone at the best of times (hearing and distractibility issues) so a phone discussion would not have been of much benefit given my current state of anxiety. More about this later.

Thanks again and apologies if my reply is too long winded. Clearing my head has been helpful though.

[Determined]

Hi @Former-Member

Additional to my last  reply (I didn't want this to be lost in the the bulk of the last reply)

I agree with your comment about not wanting to miss out on possible treatment because of any reservations on my behalf.
I absolutely do not want my darling to miss out on any treatment because of my fears or unreasonable anxieties. I would do anything to see her better. That is why I am finding our current situation so difficult, I so much want to see her better but am really struggling with a possible treatment.
As mentioned erlier I will post more about this shortly.

Thanks again.

[Former-Member]

Hi @Determined

It takes courage to get help for yourself and you will find your own healing will help you cope so much better.

As you are a person of faith, can I recommend this website which contributed to the hope I have: http://freshhope.us
It is about living well in spite of a mental health diagnosis, practical advice without glossing over the hard times and despair that can come with mental illness.

Take care
Darcy

[Determined]

---

@Former-Member wrote:
Hi @Determined
Started this new thread. Can I first start by letting you know that you are not alone. Many of us in this forum have felt anxious and lost. Can I ask what support you have in place for yourself? It has really helped me to talk things out with someone who understands.

.....
.....

When dealing with the psychiatrist, I apologised in advance and said that I could come across that way inadvertently, that my concern was for my husband's well being. I explained why I was nervous about the change and asked what benefit could be expected. I made sure I knew what to look out for in behavior changes. At the end of the day I did not want my man to miss out on a med that could really help due to my own fears.

A few tips:
1) what is the expected benefit?
NOT why are you prescribing this
2) I am nervous about this change as ...
3) How will we be able to gauge if there is improvement
4) when will this be reviewed?
5) I am concerned as in the past .... happened

Take care,
Darcy

---

Hi @Former-Member 

I have been on a bit of a tangent with my current dilemma since first reading your post but can't stop thinking about your advice. This is something I wish I had been told many years ago as it may have helped, a lot.

Thankfully I think our current psychiatrist would be responsive to this and it will be very helpful when we have our followup visit later this week.

Unfortunately the previous lady resented me being remotely interested in my darlings treatment and treated her mother with even more disdain than me, this unfortunately created frustration and possibly we did come across as confrontational out of concern and desperation to find the right help.

Just searching back, I think the basis of most of my communication centered around 'this isn't working, isn't there anything else you can do' (medication wise).

Just as an observation, there are many fact sheets around different forms of mental illness so that sufferers and loved ones can better understand the illness its self but I can honestly say that I have not seen anything along the lines of how to best communicate with a loved ones caregiver. That would be invaluable I think if something like this was readily available.

(Thoughts from any other members?)

Thanks again

 *Additional note:
Thank you also for the website link, I have looked at this and believe it could be quite helpful.
Too bad there are not more of these groups in AUS, the existing group while possible is a little to far to practically travel.

 Thanks again

[Former-Member]

Hi @Determined

Having seen Mr Darcy have meds that have not helped I can understand your frustration; feeling overwhelmed, powerless, useless, scared (terrified) were emotions that were previously unfamiliar to me and at times I was not coping.

When it came to communication there were a few things that changed things for me, these were:

- gaining an understanding of mental illness
- realising that as a carer I am an integral part of the treatment and care team
- understanding my role in the team
- realising there were processes I needed to trust even though they scare me
-putting together a concise history of Mr Darcy's symptoms, meds, response to meds has helped the treating team greatly. If I add to it or change it due to something that I realise was omitted or if there is a med or dose change, I give them an updated copy.
- expressing gratefulness to the pdoc (I always thank the doc for seeing me and/or for listening to my concerns and answering my questions).

Can I ask @Determined, when you abbreviate BPD do you mean bipolar or borderline personality disorder? My limited experience is with bipolar ii, if it is borderline, other contributors would be better equipped as to what are good ways of doing things with that disorder and I could certainly learn more in relation to bipolar ii.

Darcy

[Determined]

Hi @Former-Member

Thank you for your additional thoughts, Just to clarify, the diagnosis is for Borderline Personality Disorder

You summed up how I (and many others I'm sure) feel so well:
feeling overwhelmed, powerless, useless, scared (terrified)
I just have the overwhelming desire to fix things that are completely out of my control.

Re: some of your suggestions as to things that helped you in communicating with medical staff- all great points (I trust that others may benefit from how I relate to them)

- gaining an understanding of mental illness
This is a constant learning curve for me. Something I am trying to get better at.

 - realising that as a carer I am an integral part of the treatment and care team
I have always seen it that way but until recently the professional care providers saw it differently.
I need to regain some confidence in this regard and learn to ask more directed questions per your previous suggestions .

- understanding my role in the team
- realising there were processes I needed to trust even though they scare me
These are as one for me and our current situation. As mentioned above I have the overwhelming desire to fix things that are completely out of my control and take it personally when things don't work.
Understanding my role: I know I tend to take on too much responsibility for ensuring my darling gets the right care and feel responsible when things go poorly.
Trusting the process: well that is something that I am coming to grips with in our current situation.

-Putting together a concise history of Mr Darcy's symptoms, meds, response to meds   
Wish I had been doing this from the start. (for myself as well) it would make things a world easier to navigate now that we are further down the track.
(I particularly wonder about some meds that worked quite well early on with the effectiveness wearing off over time, if they could be effective again after a spell). I have had difficulty in asking questions about meds and why / why not without it being perceived as questioning the dr's ability. Not at all intended, just my non-medical logic seeking clarification.

- expressing gratefulness to the pdoc
Couldn't  agree more, I have always tried to do this even when I felt disregarded.
I don't always get it right but I try.

Thank you again, reading your thoughts in this area has been really helpful. 

[perseverer]

Hello @Determined and @Former-Member, thank you for starting this new thread, and @Determined, I apologise for not having replied yet to your excellent comment on my other post. I have been bogged down all weekend with curriculum planning (I am a teacher).

I also found  @Former-Member's suggestions helpful. 

@Determined, I have been in your shoes in the ED department and I once made the same vow as you, never to return. Forewarned is forearmed. Even with the best will in the world when caring I still come undone when landed with the "You must be to blame for this illness because you are the mother" response from psychiatrists. This I believe stems from John Bowlby's theory of secure attachment which was enormously popular last century and is still widely taught today. Parts of Bowlby's theory are credible and important eg the need for secure attachment of a chld to a primary caregiver and the very harmful effects of maternal deprivation. But it was also Bowlby's view that  lack of secure attachment caused by bad parenting was responsible for causing mental illness, and this popular theory has caused untold misery for thousands of loving and committed parents and partners over many decades. Even in the present time when it is proven that mental illness is largely biological in origin and a medical condition, the belief that a mental health problem was caused by parental neglect still persists.

Fortunately, we can, as carers, expect proper information from psychaitrists and when faced with an untoward attitude can address it. Hospitals have procedures for making complaints and twice I have made them. I received many apologies both times including from psychiatrists and I hope it will help future patients and their carers. In the meatime, I will try to learn from charm school and not be overly suspicious every time I deal with a new psychiatrist. Most of our psychiatrists have been excellent, respectful and good communicators.