Richard's story

Observations and advice from a carer of someone living with schizoaffective disorder

I have been the so-called carer for 33 years for someone with a chronic, severe mental illness. I say ‘so-called’ carer because many people will think that this is not being a real carer. For instance, I do not manage someone’s physical needs or lift or wash them during the night. I also have quite long breaks when my cared for is hospitalised. Be that as it may, the situation does involve a lot of complication and responsibility. The proof is that I have had the support of a number of agencies, covering the different problems that arise with this condition (schizoaffective disorder).

One of the complications, is that many medications available to treat this disorder only partly work, even while producing strong negative side effects. At home ‘in the community’ my relative can be experiencing delusions and hallucinations in addition to medication side effects: extreme fatigue, clinical depression, barely controllable appetite, and insomnia. If medication ends well enough to end hospitalisation but then becomes less effective this means, as psychiatry has begun to accept, that the patient is developing specific resistance to it. If the psychiatrist then increases the dosage the resistance will only develop more fully, making a psychotic episode certain - but no one can tell when, or with what severity. It is usually too risky to experiment with a different medicine while a person is in the community.

Responsibilities, as with many other caring situations, are decided by the response of the sufferer to their medication. In my own case, the responsibility will vary from those of a companion to those of a ward nurse on 24-hour watch. I need to add that while my cared for is at home and even when she is hospitalised, I cannot take a complete break. I need to attend frequent Doctor’s meetings and try to mitigate my cared-for’s symptoms which though less severe than in hospital are still present.

On an economic front, I have had to become self-employed and also work from home but often cannot work due to my caring role and I have been unable to retire. I have always had to maintain a car for hospital visits, picking up prescriptions and taking my relative to appointments, as well as shopping as I do not have the time to use unreliable public transport.

Someone who is suffering from strong hallucinations and delusions does not have the band-width for many aspects of self-care, especially from my personal experience those requiring memory, understanding the complications of modern medicine and the social care systems which the carer may not understand adequately him/herself. This brings me to the external support of organisations and their effects. No one can exactly explain the nature of schizophrenia or schizoaffective disorder. It does seem to me that psychiatrists with their exceptionally long specialised training can sometimes be unaware of the lack of mental health knowledge that the average person has on first encounter with these situations. But I would like to say partly through developments in technology and communications and also to the broader basis of training in the professionals, the carers can expect to receive much more and better support than when the care in the community approach was first implemented.

For instance, a Care Co-ordinator i.e. community mental health nurse, can now link up with all relevant services which formerly you had to all yourself one by one. These include the local GP surgery, the Adult Social Care Department in the local council (who may provide you with respite care) and local charities which include the sufferer social rehabilitation and the charities that support unpaid carers, as well as some other small services.

Carer Support Wiltshire gave me invaluable and successful advice when I was trying to overturn an adverse PIP decision and was at my wits end and our local day centre has been invaluable for my cared for in keeping her part of society. My GP surgery recently linked me again with Carer Support Wiltshire to have a 30 minute check in to discuss my situation. Through Wiltshire Council I receive respite care once a week.  

My advice for anyone thrown in for the first time into a similar situation to me would be:

  1. Keep on communicating your needs with persistence and patience, to your Care Co-ordinator or anyone else paid to listen, including the psychiatrist who has to read letters even when unable to give you an appointment and to relevant charities like your local carers centre.
  2. Do not lose all hope that a transformative medication may become eventually available for your cared for. This is not a degenerative disease like dementia, as was thought in past times. The development of new forms of medications, is depressingly slow but it is happening. My cared for was recently prescribed a new medication that while not working perfectly due to her illness being treatment resistant has made a big difference to her illness and has meant she has been able to come home from a seven-month hospitalisation and sectioning.
  3. If you cannot make ends meet due to your caring role, contact every organisation that you can including Citizens Advice, your local GP and mental health team and local charities for unpaid carers.
  4. Remember what is on your side is that it is far less expensive for the NHS and Social Services to help you to continue your support of your cared for than to take full responsibility themselves.