Friends, Family & Carers Forum

[Determined]

Hi all,

I am a new member here (have commented on some other threads) and wanted to hear anyone's experience with a loved one undergoing ECT Therapy.

My wife (18 years) has a diagnoses of BPD and major depression.
In recent months has trialed a few new medications after being on the same medication for a number of years. (Initial change was due to pregnancy and breast feeding, further changes after weaning)

Unfortunately the new medication has not been very successful and we are currently going through a particularity difficult time. In the last week her doctor has suggested ECT therapy which she immediately wanted to try. This has left me exceedingly anxious for a number of reasons.

I will start with an explanation and ask some questions at the end. If you cant follow my explanation please scroll to the end and see the questions as I really need some feedback at the moment.
Thanks heaps.

Firstly being is this is all very sudden for me and I was not included in the discussion regarding risk vs benefit or even simply had the procedure explained to me. (Darling came out with a booklet and said, here read this so you don't have to be scared).  She would have happily been admitted to hospital the the next day except she wanted to be their for our children's first week back to school.

This is amplified by the fact that we have discussed this option together before on numerous occasions and decided together (mostly my darlings decision but I happily supported her) that it was not suitable due to some of the risk involved (particularly memory loss). So a sudden change of heart.

This treatment was first suggested a number of years ago by a different dr when our first child was quite young and we were told one of the risks (small risk) was that she may have difficulty with memory and given we had a baby that may be a problem for her.  This time around we have another baby of a similar age. One of my anxieties is that there is a chance she may come home and not even know who he is 😞

Another anxiety is that when we have discussed this previously I have always promised my wife that if I though she was being coerced into receiving this treatment, based on her reluctance I would do everything in my power to prevent it. While she is definitely not being coerced into this at the moment (she is desperate to try it) I cant help but wonder if she is able to think it through properly given the pain she is currently in. And I cant help but wonder if she is secretly hoping to have the last 2 years erased due to some poor choices she has made under the influence of a nasty person pretending to be a friend (she mentioned the 2 year time frame not me) thus affecting her objectivity.

So my problem is that I want to support her in this even though I have significant reservations  
(it is ultimately her decision) but I feel as though I am not protecting her as I had promised.
If I raised this however it would be seen as controlling not protecting so I just have to stay quiet and deal with my thoughts and feelings.

I also cant help but be sceptical about the process of informed consent when the patient is not concerned about risk as they are already in pain and wanting to not be here anyway. (Has said nothing could be worse than how I am feeling now so why not try).

We are at the moment making some changes with our GP around stopping birth control and looking at blood tests and looking at diet and other changes that I believe may at least help (for reason I cant discuss here) so I am desperately hoping that she may agree to at least delay treatment by a month or two to allow the changes to take effect. (Is that being selfish ?)

She was doing so well until recently and I cant help but feel partly responsible for our current situation as things started to go poorly for us when I took on some additional workload (university studies) and was not coping with it.  (When I am not happy and smiling her world falls apart).  This difficulty on my behalf is due to burnout related issues from trying to remain employment in a high pressure and toxic work environment while trying to also be a full time carer (hard wired in my DNA to be a provider for my family), I took on the additional load against doctors advice as I was feeling insignificant and useless for not doing more and wanted to prove mostly to myself that I could - my fault not my darlings).

So anyway I have been doing some research around the ECT therapy and have been even more alarmed about some of the recorded risks that medical professionals providing treatment downplay. I know that with any topic there will always be polar views around risk and benefit etc so have tried really hard to look at balanced opinions, the comment most concernign to me was someone who found that even though it had made an amazing difference to their quality they considered that the cost had been far too great .

After all that I finally get to my question.

More than anything else I want to see my wife well again and able to do life, the last thing I ever want is for any unreasonable anxiety on my behalf to discourage her from receiving a treatment that may make such a huge difference not only to her life but our family. Especially as she is at a point where she feels she cant go on like this anymore.

I would really appreciate some balanced feedback from anyone who's loved one has received this treatment,

How successfull was it

How soon did it take effect/ how long did it last- was there a relapse

What problems did you (you loved one) experience during / after the treatment

Was this short term / long term/ permanent

***How did you cope with the process, were you scared or anxious about the risk if so how did you manage this.

For my darlings sake I really want to have some peace about this process and be better able to support her, not just pretend to be happy. (I will support her no matter what, I just have to find a way to deal with it).   

Anything else that you think may help me with this

Thank you so much to anyone who may be able to provide some feedback regarding this.

[Former-Member]

Hi @Determined

A warm welcome to the Sane forums. Thank you for your long post and I really feel for you and your family's situation right now. I am one of the moderators here on the weekends and a counsellor in mental health. I have worked with a few clients who had ECT treatment in the past. For two of them, it worked quite well at the time with no ill effects, and for the third, not much impact on his depression but no noticable memory loss. So I guess everyone can get different results.

Im sure that other contributors here on Sane will have had some direct experience of ECT and will have wisdom to share on this. In the mean time, take care of yourself and take a look around some other threads in Carers and Lived Experience forums to see what info you can find.

Kind regards,

Frog

[Former-Member]

Hi @Determined

My husband has had ect, he has a current diagnosis hypothesis of bipolar ii - he has been delusional, has run off into the bush with intent to die and has attempted suicide, he has had major depression.

The first time he had ECT it lifted him out of depression without any memory loss. To me it was miraculous. He relapsed about 6 months later - at the time he was not diagnosed with bipolar and discontinuation of a mood stabilising drug given for a different purpose resulted in rapid decline.

The second series of ECT he had also lifted him out of depression and this time stability has been maintained with appropriate mood stabilising meds. It has come at a cost of memory loss, but this does not worry him.

How did I cope? By understanding the risk vs benefit. If Mr Darcy had cancer I would have no hesitation in getting him chemo which has horrendous and lasting side effects.I think we somehow view mental illness differently. In the case of Mr Darcy, the risk of the disorder being terminal by way of self harm is very high and given his good response the first time he had ECT, I readily consented the second time (he did not have capacity at the time).

To my mind, the inconvenience of memory loss has been a small price to pay for his wellness.

Darcy

[Determined]

Thankyou @Former-Member for all of your patient replies to my many questions, you have been most helpful.

[Determined]

Hi @Former-Member

So I'm not sure if im asking somthing here or just thinking out loud and venting, either way I would appreciate your thoughts (and anyone else reading). Reading your thoughts across various threads I have really appreciated your ability to state the obvious and provide some clarity, for me at least 🙂 

So we are waiting to see the psyc this afternoon to determine whether we proceed with the ect or not but it seems that my darlings mind is made up and and she just wants to go ahead, which is ok as it is her decision.

I cant help feling a little frustrated however as there are other underlying causes that I feel could be addressed first and while I can never pretend to know exactly what she is thinking I dont believe that there is currently any immediate danger of self halm. 

re the other underlying causes, we have app with the GP shortly to discuss some blood tests particually iron levels. (Doing my own resarch iron levels are proven to influence levels of depressidon) and we have made some other changes that will hopefully stabilise hormone levels. 

We had our first rational discussion on the topic last night where I floated the idea of waiting for at least a few weeks to allow some of these changes to take effect and my darlings response wa that 'she is tired of waiting and this just seems like an eaiser option'

While I cant imagine what it must be like to be in her head day in day out and know how hard it is to actually do somthing to help ones self (I have sat across from a councillor thinking that is stuapid how is that supposed to help me) but still cant help but feel frustrated that she just seems to want to sit there and take a pill or have a procedure and expect everything to heal itsself without any effort on her belalf. ie with a little effort on her behlf there are other lower risk options to achieve healing. while I sooo much want my darling to be well and living life not just surviving, I would also like to achieve that via a path that has the least impact on our family. Is it selfish of me to think like that? 

And as I have mentioned in previous threrads, I am certinally not intending to be negative towards my wife here, I am meerly trying understand the illness and its impact in order to change my attitude towards the situation so that I can better support her at this time.

Your thoughts are appreaciated

D

[Former-Member]

Hey @Determined

Happy to answer any questions but I am very much aware that our situations are different.
I think that we all want what is best for our loved ones and that is not selfish.

Mr Darcy too would like to take a pill and have it all go away but the reality is it won't and he will continue to have struggles.

With regard to ECT, yes there are risks, it is not possible to predict who will or will not have adverse effects and I can understand your concerns.

Can I gently suggest that when you see the doc, tell them your concerns, ask about review process, confirm your darling's well being is your motivation.

Supporting our loved ones through a treatment we may not agree with is a difficult thing to do.

Take care,
Darcy

[Former-Member]

Hey @Determined
Thoughts were with you today.
Darcy

[Determined]

Hi @Former-Member @Shaz51

Update as promised, 

So we had the appointment with the GP and psyc yesterday.

The GP visit went well with most of the blood tests coming back normal, definitely nothing there to explain our current situation. I felt really stupid feeling silently disappointed that there was nothing wrong there. Something to explain our current state would have been a relief (low iron was what I was expecting  given the current levels of fatigue) but all was within 'normal' ranges.

We had the psyc app in the afternoon. That went better than I expected and I left feeling better about the plan moving forward (still not happy but I can accept it a bit better now) . Nothing is happening until after a review in 2 more weeks. That was always the plan according to the doc, it was only my darling who thought she was going to go straight in for treatment if the new med did not work, (will take at least 2 weeks more for it to begin to take effect.

The doc was very gentle and patient with me,  I was able to make some of my concerns known with the the help of @Former-Member s suggestions. the only thing I didn't do that I should have was taken a note pad with my questions. it was very disarming with my darling crying beside me because she thought i  was trying to prevent her possible treatment (even though we had discussed it beforehand and she was happy for me to talk about it.) and I went blank on most of what i needed to say.

I am still amazed that he believes 'there is no scientific evidence to support these theories of side effects' but I am happier that we are not rushing into things as it first felt. It was a tuff day for my darling with the logistics of travel and getting between appointments (over an hour drive between each) and having children looked after while we were out but we got through it.

Thank you sooo much for your thoughts. Having someone to express my feelings to has been invaluable in helping me to remain calm through this. 

D

[Former-Member]

Hi @Determined

Thanks for update.
I felt hollow after our appt as even though in one way we could say we had the outcome we desired, the doc did not give me any reason that made me understand the view of the treating team as to why they would chose one course of treatment over another and I feel the therapeutic alliance was not enhanced by the discussion.
Darcy

[Shaz51]

Hello @Former-Member, @Determined xx

thank you for the update my friends

sending you tender hugs