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

I originally wrote this piece for a blog called 'Breaking The Silence' which aims to discuss issues and highlight articles related to mental illness.  This article is in response to an earlier post on the blog which riled me up a bit.  My thanks go to Lyn Jenkins and Linda Jones for allowing this piece to be published on their blog.

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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?