A carer's cry for help: The reality of living with someone with mental distress

Introduced by Lyn Jenkins

'BECOMING a carer' suggests some kind of conscious decision but for most people that isn't the reality...they have not chosen to become a carer.

They had their own goals, dreams for the future and emotional needs to be met. Someone they loved reached a stage, physically or emotionally, where they needed help. Being a carer, in more cases than not, has little to do with choice, ability, preparedness and everything to do with being the nearest human being that 'cares about' this person.

Here, carer Nickie O'Hara talks honestly and movingly about the frustration, distress and dedication of becoming a carer of someone experiencing mental distress: 

WHEN you are the partner of a sufferer of mental health there is not an awful lot you can do to help them.  You have no idea what is going on inside their head as, a lot of the time, it is impossible for them to explain it.  Even if you do have personal experience of mental illness it will not compare.  Depression is a silent illness. It has no outward symptoms and can easily be dismissed.  My partner has officially had severe depression for ten years and for five of those years there have been many occasions where I have wanted to scream.

I am constantly angered by the positive spin promoted by certain mental health agencies.  To be told that, as the partner of a MH sufferer, that I should be supportive, encourage them to participate in activities, to join groups either in the local area or online or even to take regular exercise is patronising.  What do you think I’ve been doing for the past ten years?  Sitting on my arse, laughing at my partner’s plight? No!  I’ve been fighting tooth and nail to get him the help that he needs and deserves.  He didn’t ask to feel this way and we, as a family, certainly don’t enjoy it.  Over the years he has lost what little confidence he had with regards to socialising and he has relied solely on me to cope with even the smallest every day venture all thanks to a throw-away comment from a medical professional.

When we first accessed the mental health services ten years ago, we found that we had a varying degree of assistance from an understanding and sympathetic family doctor, to a CPN who kept an appropriate distance but opened doors for my partner to be treated further.  We were happy with the level of care and the evaluations that were being made.

Then we moved house and moved into a different Trust area.

We were told that my partner couldn’t continue his treatment with the medical professionals he had spent five years building up a relationship with even though we were only moving nine miles down the road.  Instead, he would have to be re-referred through our new GP and have to start the process all over again.  There was no smooth transference available due to budgets and the way in which each Trust operated.

The first stumbling block was, in fact, the GP.  My partner’s medical notes were ‘lost’ which set his transfer application back by three months.  During this time the new GP was reluctant to prescribe any medication as he wasn’t aware of the history.  At no time did the GP allow me to attend appointments with my partner even though my partner was quite happy for me to do so and really needed me to.  On one occasion the GP told my partner, “You’re 41 years old.  Pull yourself together!” and another (locum) GP refused to prescribe his medication because, in his opinion, he’d been taking it for far too long and it probably wasn’t having the desired effect any more.  Both these events led to a suicide attempt.    After being admitted to hospital, my husband was put on the waiting list to see someone from the Community Mental Health Team.  We waited and we waited for that all important letter but nothing arrived.  After another three months I made attempts to try and find out what was happening.  I was informed that the (same) GP had sent the referral back as he believed it was not necessary.

We changed GP and received a much more positive response.  Again, an application to see someone from the CMHT was sent and he received a much coveted appointment.  It was a day that it was impossible for me to get leave from work so he attended the appointment on his own.  It took him more emotional strength than anyone could imagine for him to attend that appointment on his own but he didn’t have the communication skills to explain in full how he felt.  I found out at a later date that he was asked how he was to which he replied, “OK” as that is how he was exactly at that time; neither good nor bad.  He offered no extra information and clammed up when questioned further.  Because of this, the “professional opinion” was, again, that he did not need to access already stretched mental health services as he was a “border line case” and he was being fully supported at home.  At no time did anyone ever ask for feedback from me.

Things came to a head when there was a final incident at home.  It was another suicide attempt and I was scared.  Very scared.  I had to call the police and they intervened.  Because there had been no official mental health intervention since we’d moved to this new area, the police could not offer him any allowances and charged him with affray.  This was the final kick in the teeth and I was determined to do something but what that was, I did not know.  I went to the GP with my partner and demanded that I was seen with him.  Information that I gave the GP that day about past experiences were recorded and a full mental health assessment was arranged, both for his medical records and for his court appearance.  I demanded that someone should help us and admitted that I couldn’t cope any more being a lone carer.  It took eight months for the court case to take place and each time it was adjourned the judge said that there was the possibility of a custodial sentence.  I know for a fact that if that had have been the case, my partner would not be with me today and for each of those eight months we were all living a life in limbo.  In the end, the full mental health assessment, my own intervention, the solicitors’ recommendations, the final judgement and judge’s recommendation for further mental health treatment has saved my husband’s life.  He now has a Community Mental Health Worker and is trying to build up trust with that person again.  He has regular medication reviews and a telephone number that either of us can call if we feel that he is on a downward spiral again but I hope that we never have to use it.  Should it really have gone that far before we got the help that he needs?

Comments

[Rosie Scribble]

It is shocking that things have to get so bad before help is made available, yet sadly in my experience this is all too common. Moving to a new area can cause all sorts of problems assessing mental health services even if you had them in a previous area and have moved with a referall letter in your hand. I am glad you have highlighted this issue. Something needs to change. The situation should not have to become absolutely desperate before anything is done. So sorry you have both been through so much. Heartbreaking.

[.TheMadHouse]

I think this highlights just how different the Mental healthcare can be between NHS trusts. I am very lucky in that the support I received was second to none, but had I have been in your catchment area, I fear I would have been dead now

MadDad did his best, but with 2 children and a job to try and hold down, It would have been untenable

[peabee72]

I'm pathetically unqualified to say anything helpful and I REALLY want to. I am astounded that your OH was told to 'pull himself together' by a medical practitioner and some of the other examples you give begin to highlight a real problem in GP service provision.

I think you are amazingly brave, I know you'll balk at that but you could have made the decision to walk away many times and you haven't. Our shaky system relies all too heavily on people like you who take on mammoth responsibility and I can only applaud your attempts to make a difference both at home and here in public.

Love,Pxxx

[Karen Kirk]

That was so shocking to read - I can only offer my support and say what a fabulous person you are.
It is so shocking that amove of just 9 miles caused so many problems. I think it is disgusting that he was told to pull himself together - dreadful.

Thank you for sharing your story.

[Dara]

It's disgusting, but I know for a fact that, at least at many schools here in Canada, GPs only receive one class in medical school on mental health issues.

It's so hard accessing services. My DH has been on a waiting list for psychiatry for over 3 years. In that time we switched doctors as our GP refused to change his medication unless he had seen a psychiatrist.

Since switching GPs his new GP has changed his diagnosis based on her experiences with him and recommended him to community mental health (still on a wait list 6 months later) and switched his medications (which thankfully seem to be working better).

It's such a crapshoot though, and knowing that it's just me and our GP that are here for him scares the living daylights out of me.

And I'm totally with you on the message we receive from those advocacy groups. Hello, if I didn't support him I would have left him!

[karen]

You don't once mention the help you need - whether you had (or were offered) a carers assessment. Whether anyone put you in touch with a carers centre, a carers support service or a carers group. Whether anyone told you about the Princess Royal Trust for Carers, or any of the carers services provided by mental health organisations such as together, making space or rethink. You don't mention the national carers strategy and the new efforts being made to provide support for carers - caring with confidence courses, additional funding for respite, Carers Direct.

I'm not suggesting its your fault in any way, but it makes me think that maybe, like many families, you hadn't been given the information. And that makes me so very, very angry that carers are still not being offered the support and help they need.

Well done you for highlighting the problems of changing Trusts, and unhelpful GPs. Many people will relate to your story - you are not alone.

You start your piece by saying there's not a lot you can do to help - I'm sure that just by sticking around, you're doing a lot.

[grandadslilsamm]

I myself also suffer from mental health issues and find it so difficult to actually get any treatment. I have received CBT on three occasions but foun d it did not help. As they say I am also borderline, which most people I know do not agree with at all, I cannot actually receive any other treatment. I fear that I will be pushed to the edge before i receive any real treatment.

[Heather @notesfromlapland]

oh Nickie, i'm in tears for you here. i had no idea. This is disgusting, what they put you and your family through is an abomination!

[Linda]

Hi, I just wanted to pass on my heartfelt thanks to Nickie for writing this piece. You may think that as it has been influenced by the advice I wrote about for the NHS that I may take a different view, but this is exactly what this blog is all about (wahay now I sound like Louis Walsh) - when I wrote that piece, I didn't know what I know now about mental illness, I hadn't seen the people I love in such pain. I have now and if Nickie and the rest of our contributors speaking up reaches a single person to help make them feel more confident/at ease in talking about how they feel and the ilness they are coping with, then this blog has set out to do what it set out to do. Thank you so much to everyone who has contributed and commented so far. xx

[Crystal Jigsaw]

In a word, NO, it definitely shouldn't have gone that far. Some GP's think they are so above the rest of us that there really is no point seeing them. I have very little faith in GP's to be honest.

As a carer to my daughter who is autistic, I get no support from the authorities, financially or otherwise. It is an absolute disgrace that people are being forced to "care" for their loved ones without support in a world which is trying to find cures for any disease under the sun. All we need is someone to say, I'm here. And when our own doctors can't do that there really is no alternative but to go higher. And that's why so much money is spent unnecessarily to get access to better provisions.

Good luck for the future.
CJ xx

[Jo Beaufoix]

This is so so awful and I'm so sorry you went through this. It's unbelievable that there is no consistency of care throughout the NHS. I myself am on meds due to PMDD which can mean I am pretty much okish one week, and have deep depression and even suicidal urges another. The thought that another GP could just stop my meds were I to move is terrifying.
It's also mad that you were not allowed to attend his appointments with him.

I hope you are getting support too Nickie. Take care.

[Susie]

I applaud you. For your wonderful article, for the amazing support you have been for your husband and for somehow hanging in there.

You have been very strong and I am sure have felt very alone and exhausted and drained as well.

Hope things just improve.

I could not go without commenting.

hugs!

Susie

[Nickie]

To everyone who has taken the time to read this article and, even more so, to comment, a massive THANK YOU. I'm sorry it's taken so long for me to return to the article but it's been a busy week!!

I didn't post this for sympathy, to try and prove how strong I am or how near to breaking point I am - but definitely to show that there are certain taboos out there regarding carers and the support available to them.

I think the health service in the NHS is superb and we are lucky in the UK to have a free health service BUT there are black holes and failing systems.

@Rosie - we're still not there yet although the wheels are in motion. There is to be a change in the CMHT workers soon so once again we may suffer from lack of continuity and we have to start with the build up of trust issue once again.

@MadHouse - we cope in our own way... just like many others (your family included) do. There is no blueprint for it all - I wish there was, sometimes - like a checklist.

@P - I'm balking... you know why :)

@Karen - thank you for reading

@Dara - although in another country, your story sounds very similar to mine. Please feel free to contact me off-site if you wish - moral support can be such a boost sometimes xx

@Karen - I've NEVER been offered support simply because before we moved I felt as though I didn't need it (and I was included in a lot of my husbands support appointments) and here, since we've moved, you've read about the struggle we have had just to get the "initial" diagnosis and the start of a support network. Thank you for the support groups you mentioned - I am definitely going to look into those.

@grandadslilsamm - please keep fighting and shouting for help. You are important too.

@Heather - dry your eyes, mate ;) I didn't want to upset anyone but I think that sometimes the "short, sharp, shock" is what is needed to get others to realise that it isn't a bed of roses, even when you have a diagnosis. Does that make sense?

@Linda - ditto. And thank you to you (and Lyn) too. I have posted this article on my blog but I have disabled commenting and asked my readers to come over here to leave a comment. Hopefully, it will help increase the readership here.

@CJ - you're so right... sometimes we *do* just need someone to speak out on our behalf but finding the alternative services in the first place should be easier.

@Jo - I hope that writing this from a carers point of view will help some sufferers understand that they have the support, even if they don't realise it sometimes. I know my husband doesn't always believe that I'm on his side but I am.

@susie - thank you to you too. Yes, I constantly feel alone and exhausted but I do it because I love him. It's as simple as that.

[Madmother]

I followed your link from your own blog here to comment.

As the mother of a gorgeous little man with Asperger Syndrome I am appalled at the treatment you have suffered. But sadly, not surprised. I am in Australia but have battled for services for nine years. We are lucky, my amazing mother allows us to go private, but still there is the terrible waiting lists and shortages of services.

This is so wrong. We should not ever have to fight for help - these are people's lives, loves, family members, futures they are playing God with.

[Tommy B]

I first met Nickie a few years ago and we have remained in contact to this day. Having read her blog, it has only underlined what I initially thought of her, that she never 'blow's her own trumpet' and just gets on with life...always positively and is a typical Northern lass full of hope and humour. I am glad she has stayed loyal to the person she loves and hope she gains the support that she requires in helping her husband through difficult times...Well written Nickie lass...proud o ya! x

[Sara]

Thanks Nickie - I'm 24 and going through something simular (but obviously different) with my partner who has suffered with depression since he was 16. Our GP has been amazing but his hands seem to be tied with what he can offer. I won't go into detail - I really just wanted to comment on what a great article it was and to tell you that you're helping out people like me who (as you know) can often feel very lonely.

[Nickie]

@Sara - I hope you come back and read this. Thank you for your comment - I'm glad that people are still reading and commenting on this article because it helps me (and people like you) to realise that we're not on our own and that, sometimes, it's the "system" that's preventing the care/help that's needed.

[Sara]

Thanks Nickie. It's really refershing to get an honest opinion. Sometimes I feel like if one more person tells me to try 'taking him for a walk' then I'm going to punch them! This doesn't make me a bad person - only human!

[JFB57]

Thank you for this post. I came to it via @newdaynewlesson post.It is difficult when you are a sufferer to get your carer to have some space.
I suffer with anxiety, no where near as severe as described here so we have not had to experience the service that is out there. I was able to speak to a wonderful psychologist once a month for about a year but that is all we have had. I say we because my wonderful husband has continued with the same approach of talking & patience. I do worry about what it is doing to him though.