People with mental health problems can be very vulnerable and many need extra help and support both practically and emotionally.
Some carers commented that our society often “turns away from vulnerable people”. Instead, carers agreed that we need to look for “the person underneath the illness”, as people with mental health problems have the same talents, intelligence, dreams, expectations, strengths and weaknesses as the rest of us. Only then can we give people the support they need.
Ramila has learnt a lot from her brother and says we need to see the person behind the illness.
Carers agreed that people with mental health problems need emotional support and encouragement. Like other people, the people they cared for benefited from feeling that they are wanted and ‘part of the family’.
Jane says that people with a mental illness feel the same need to be loved as everyone else…
Instead of offering friendliness and support, Tina says, people sometimes act as if mental health…
Some said it is best to try to understand where the person you care for ‘is coming from.’ Being optimistic, tolerant, patient, loving and encouraging was also thought helpful. Some said ‘just being with them’ or having ‘someone to talk to’ was what people needed. Several carers accompanied their relative to places to support them if they were anxious about social situations.
Angela says people in hospitals don’t get the care, support and empathy which they need and which…
Getting annoyed or angry didn’t work and Ramanbhai now speaks to his wife in a gentle, comforting…
If they didn’t live in the same house as the person they cared for (and also when people were in hospital or residential care), carers kept in regular touch to make sure ‘everything is OK’. Some spoke on the phone every day or every week, and many visited regularly.
People said the person they cared for had to know they could count on them. Some always left their phone number with home carers or others who looked after their relative, and others would ring to let people know if they were running late.
Carers said you need to treat people with mental health problems with respect to avoid taking their dignity away or being patronising. Some said having respect means you have to let them know, in a loving way, when they were being unreasonable or irrational.
Anne describes an exercise which helps her deal with her husband’s irrational thinking.
Tina says when people with mental health problems have wrong perceptions of what is happening,…
Many carers did practical tasks for the person they cared for and people usually did more at the times when their relative was very unwell. Practical tasks included household chores or helping their relative to eat or drink. Some helped out with baths or massages. Others took on new responsibilities for household finances, maintaining the house or making sure children were fine. Many usually came along to meetings with services, some helping with translations, and quite a few looked after medication (see ‘Taking control – difficult situations and medication’).
When her son is unwell she visits several times a day to make sure he is OK.
Some carers who lived together with the person they cared for said that everyday life was ‘regulated by routines’ and that ‘continuous little jobs’ meant they were caring all the time.
If the person who is unwell is not co-operating, it can sometimes be difficult to give practical support. Some carers had asked professionals to find solutions, while others thought finding ways of doing things based on their own experience (and those of other carers) usually worked best.
Her support worker suggested that Anne simply run a nice hot bath for her husband instead of…
Although professional advice can be good, Anton sometimes finds his own ways of doing things.
Some carers looked after the money for the person they cared for. However, carers can feel uncomfortable about how it looked from the outside that they ‘don’t have time to keep a separate account’ for the person they cared for.
It makes sense to do a joint weekly shop for herself and her brother, but Ramila feels…
When the person being cared for was in hospital or residential care, many carers spent time visiting them, bringing appropriate food (such as vegetarian or Halal foods), doing their laundry or buying clothes. Some said they needed to be present to follow up on medical care and ward rounds (see ‘Dealing with hospitals‘).
Carers also helped their relative with things that make life more interesting. Many spent a lot of time with the person they cared for, talking or just doing things like watching TV with them. Some supported the interests of their relative by providing books or music. One carer rang his son in hospital every Saturday to let him know about the latest football results. Some went out together for meals, to the cinema or theatre or community events such as weddings or festivals. Others arranged courses, activities, days out and holidays. Some went for walks together or found other types of exercise. Some provided for religious needs, taking people to meetings, praying and singing religious songs together and even arranging Holy Communion at home.
Sarah’s son has little initiative so she organises trips to stimulate him (played by an actor).
Kiran help his wife to take part in activities (recording in Gujarati).
When talking about the help and support they gave to those they cared for, many of the carers were concerned about dependency, saying things like ‘perhaps I am doing too much?’ or ‘he gets addicted to me’. Some had tried to do less so their relative could be more independent, make their own choices and look after themselves more.
Jane wants her daughter to become independent so she can cope when her parents are no longer there.
Some said they had realised that helping loved ones too much meant their relative didn’t learn from their experiences, including their mistakes. Some said it was good if the person they looked after was the one deciding when they needed help.
Leah has started to tell her son how to do things instead of doing them for him, but she still…
Others said letting go of some responsibilities, such as ‘nagging about medication’ was important to keep a good relationship with their loved one. Some said they also needed to ‘let go’ for their own well-being (see ‘Getting the balance right‘).