Bi-Polar Disorder Sufferers

When we think 'Bi-Polar Disorder sufferers' we usually think of ourselves, those of us who Live in Bi-Polar Land (whether it is in the Mountains of BPD I or the High Plateaux of BPD II). We must never forget that our family (and close friends) suffer our illness too.

Although the importance of supporting relatives is more widely recognised and spoken about, in real terms very little has changed from 50 years ago when my poor mother was left to deal with my father's illness (Bi-Polar I) on a day-to-day basis whilst taking care of two children and keeping the larger family together. I should also mention that she needed to keep my father's condition secret in fear that he might loose - not only his job - but also his long-term pension. 

There is no doubt about it: my mother suffered my father's illness all her life and now in her eighties, she is still suffering it. Her own life has been blighted with BPD I without ever having had one smidgeon of a BPD symptom herself. My mother single-handedly kept my father alive. My parents have recently celebrated their 60th wedding Anniversary and it was both a happy and a sad occasion for her. On the one hand she recognised that having arrived to this point was a monumental victory - on the other hand, it is impossible for her to reminisce without remembering a life-time of fear, torment and violence.

Was my mother ever offered any support? No. She was expected to just get on with it. Were her herculean efforts even acknowledged? No. Was her own mental/psychological/emotional well-being ever considered? No.

Now wind forward 50 years to my husband's situation. When I crashed so catastrophically 6 years ago, my hubby was pretty much left to get on with it too. Because he was self-employed and worked from home, he was more or less expected to run a psychiatric ward at home, all by himself. In fact, he did just that for 18 months, keeping me on 24 hour suicide watch and managing a succession of failing medication on my behalf. As a result of this emotionally draining and psychologically exhausting situation, his  business went down the pan and when a couple of important clients failed to pay for his services, he had no choice but to go into bankruptcy. Nobody ever asked him how he was coping with that either.

Psychiatric patients are a very 'inconvenient' lot - the three times I went into acute crisis were at the week-end or at night. The help we both received during those episodes was less than woefully inadequate - it was scandalously inappropriate. I won't repeat here all the details but feel free to read the description of what happened during such an episode in the entry I wrote after one of them here).

There are leaflets for carers, most of them targeted at the kind souls looking after disabled relatives, but very little (if anything) to help family members deal with the unpredictability of an illness such as BPD I or II. And then of course, there are two other things people in my mother's or my husband's situation have to deal with and they come in bucket loads:

  1. Their own guilt at struggling to provide unconditional minute-by-minute 24 hour love and support to their sick loved one
  2. The howling pain they feel clawing at their heart watching their loved one disintegrate and/or disappear in front of their very eyes.

Talking about these issues is an important step forward and a massive improvement on having to suffer all this in silence and in secret. But it is not enough. I want action and I want it now.

I want to see:

  • EVERY interview with a psychiatrist in times of crisis to include the carer DURING and AFTER the consultation with the patient. This is not a time to be shy about privacy and doctor/client confidentiality. Neither matter one iota when your sanity and your life are in danger. Tip-toeing around this issue is akin to letting a person drown because there is a No Bathing sign by the side of the lake!
  • An Emergency Care & Support Plan drawn up to help the carer deal with crises when the local Psychiatric Unit is closed. Sick patients do not go into crisis between 9am and 5pm Monday to Friday. To assume so is laughably and dangerously stupid! (And don't think you can call an ambulance to take your sick relative to the local psychiatric hospital either because, in the UK, all ambulance staff are allowed to do is take you to A&E at the local general hospital. Can you imagine what hours of waiting and 'triage' can do to someone who is already screaming inside?! I do - I have been there.)
  • A day-to-day Care & Support Plan drawn up for the spouse/parent who will be the day-to-day guardian angel of the sick person. Many of the techniques taught patients to help them recover need to be adapted to carers because they too need to recover!
  • A permanently operated Psychiatric Emergency Hotline manned by suitably qualified medical staff - the Samaritans do a brilliant job but they cannot get you hospitalised or medicalised if you need it.

The resources carers need MUST BE MORE than calling the 24 hour GP on duty and have the sick patient sectioned under the Mental Health Act. This is only appropriate when the patient as become delusional and lost touch with the reality of his/her situation (usually a BPD I patient). But what about BPD II patients like me? I make the joke that I must be the only patient in mental health history who sectioned herself but in truth it is not that funny: knowing what was happening to me and fighting like mad (pun intended!) to keep the lid on it nearly got me sent back home with a "if you know what's going on you can't be that sick"! Don't get me started on that one...

So there is no doubt about it - our spouses/partners/parents SUFFER our illness too. And they don't even have the luxury of a diagnosis.....

A lot needs to be done if we are serious about caring for carers of mentally ill patients.

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