*Please note the following blog contains mentions of upsetting topics such as suicide. Please continue reading at your own discretion.*
‘My name is Rosario, I care for my mother who has schizoaffective disorder. People with this condition experience both symptoms of psychosis and mood symptoms including severe depression and mania. It is recognised as a separate illness from Bipolar and Schizophrenia although it shares symptoms with both illnesses.
My mother’s mental health has been impacted very badly, over the past few years she has been in and out of hospital and sectioned and when at home can struggle to take care of herself. What is so challenging about this illness is there is still a lot of stigma and lack of understanding around mental illness. Just because due to an illness someone may not be living a life exactly like others in society and may struggle and be unable to work does not make them less of a person.
Being around my mother and visiting mental health wards has made me realise someone with this condition or other illnesses isn’t scary or dangerous in most cases (which unfortunately is how these conditions can often be portrayed in the media) but is suffering, but the person behind the illness is still present.
Another challenge is that there is not enough support available. Although my mother does have a community nurse when she is a home who visits every few weeks, if something goes wrong it takes her being at risk to herself before she can go to the hospital. This has only happened in recent years when she has gone missing because she was so ill and had to be found by the police. She wasn’t even able to go to a mental health ward after two suicide attempts despite having a medical history of being very unwell over the years. This means the role of loved ones is very important.
The role of a carer of someone with a mental illness may not always be obvious. My father – her primary carer does food shopping, takes care of all the administration at home and manages medication when my mother isn’t up to it. We both advocate for my mother with health professionals, are always on alert for symptoms of illness and changes in mood and are available to give reassurance and act quickly if something goes wrong. This can vary from day to day and week to week. Sometimes my mother will need a lot of support and at other times can function better.
The uncertainty the illness causes for the whole family, the lack of stability and stress. It has even affected my mental health at times. Although in some ways due to my mother’s illnesses meaning there are ups and downs, I can live my life and have more freedom than perhaps someone caring for someone with another condition. Despite this, I am still very impacted emotionally.
Something that I haven’t seen talked about much is the role of a carer when they’re cared for is in a hospital or another institution for a long time which is the case for me and my father currently. It can feel like you are no longer worthy of support because the loved one is being looked after by medical professionals and I have felt that way at times, but it is as challenging as supporting someone at home because there is a lot of grief and sadness involved in them being so ill they can’t be at home, and it is hard to plan how to support them in the future. Also, we still care a lot about my mother we have many calls where we reassure her and stop her from feeling lonely, plus in-person visits. My father brings her fruit weekly to the hospital which isn’t close or in Wiltshire and I send her gifts and cards. We, also attend meetings with the psychiatrist and report anything important to nurses.
Carer Support Wiltshire has been important for me and my father. My mother’s PIP benefits were going to be cut at a time when my family needed the financial support badly and the thought of being asked to work and having this benefit taken away when she was very vulnerable almost sent my mother back into a deep illness due to stress. It was thanks to my father being given information by Carer Support Wiltshire that he was able to successfully appeal on behalf of my mother.
When I was finishing my masters at university I had to take time out due to being impacted by my mother going missing and becoming very ill. Thanks to Carer Support Wiltshire I was provided with evidence of my situation to show my university and was able to carry on studying.’
– Written by unpaid carer Rosario
