MH problems are not just about crises, often they are about ordinary life. There can be gradual or sometimes dramatic changes in behaviour which can make you feel very unsure how to react, even if it isn’t a crisis. Guidance is not always easily available. MH staff can be hard to reach when you need advice and other sources take time to find. Carers often look for a ‘right’ way to respond, but there are few rules.
“Often one feels that you are fighting the system rather than trying to
resolve the illness. There will always be those who will get in the way;
bypass them and get what you want and deserve.”
Below are some suggestions that are based on sources offering Carers’ or service user’s advice, but they do not come with a guarantee. Remember that you haven’t had any training for this and will need time and experience to develop the most helpful responses for your individual situation. Learning is bound to be by trial and definitely by error!
Not all the issues covered are part of every MH diagnosis – ignore the ones that are not relevant to you.
The crucial point is to make sure that the long term strategy to keep them going isn’t going
to make you unwell. You are the one who has to look to the future as they may be firmly stuck in the present.
People who stay in their rooms either sleeping or not doing much.
If your attempts to get them out don’t work, it may be better to leave them to it for a while. Constant encouragement only wears you out; if it’s not working then it’s not working! There is no point sitting worrying and blaming yourself. When they do come out, try to speak to them positively: “It’s really nice to see you” and offer a drink or snack. They may need to sleep a lot – both the condition and the medication can cause lethargy and it can be hard to understand what they are dealing with mentally.
Try to offer opportunities to do low stress activities they might enjoy.You need to avoid a showdown or a battle of wills, so the calmer you can stay the more likely that they will feel able to come out when the time is right for them, although it is all too easy to beat yourself up about not feeling calm!
Try to keep the environment quiet, avoiding too many people especially if they have come to ‘have a word’ with the patient. You can’t drag the person out or force them to do anything. If you feel able, then go out and have a social life – preferably one where you can relax!
This is often associated with MH issues. Not only is there the condition to deal with, there is often a sense of failure in not reaching ‘normal’ goals and the stigma of being seen as ‘different’. This feeling of being less worthy than others can increase loneliness, anxiety, depression, drug use and suicidal ideas. So the lack of self-esteem reinforces the MH condition and creates a vicious circle.
It is very difficult supporting someone to work on their low self-esteem. Carers report that it can be hard not to adopt a parental, patronising tone: “Of course they don’t think you’re stupid!”
Tips include doing things that are enjoyed, finding ways to spend time that are productive and satisfying, and choosing to be with people who are encouraging and supportive if possible. If the service user can help other people this is very rewarding, either in the family or as a volunteer.
A useful skill is assertiveness, so working up to challenging people who make negative statements about them is a major step. A Carer could help by rehearsing what might be said and supporting the person to say “no”, or to say how they are upset by that person’s remarks.
The crucial part, however, is to understand that it is a habit to think negative thoughts and filter everything through this process. So if a person sends a text to a friend but gets no reply they may presume it is because they don’t want to be friends anymore. Alternative explanations such as a flat battery, being busy or not hearing it arrive are not considered. So a Carer can help by gently pointing out other explanations for events and emphasising when
positive things do happen and goals are achieved.
It is useful if people can become aware that they often are far more negative and unhelpful in their own ‘self-talk’ than they would ever be to anyone else. This includes Carers!
The challenge is to support someone to not see themselves as weak and socially outcast, but as a resourceful person with strength and skills who is doing their best to cope with the challenges of a MH issue – which was not their fault. There are lots of useful resources online and in self-help books when the person is ready to work on this topic. Many talking treatments also cover this area.
People often lack any motivation to either help themselves or to get help from others. They can be highly resistant to trying anything, even old activities they used to enjoy. This may become an indicator to you of how well/unwell they are.
As before, there is little point in nagging, persuading or bribing if it’s not working. Progress may be slow and all you are doing is wearing yourself out. The question “what do you want to do?” may well be always met with “don’t know”, but if they have any ideas, support them if you can. Keeping it simple and direct with, “Let’s go down the garden and see if the daffodils are out”, rather than the confusing, “Let’s go for a walk. Where would you like to
go? The town? The woods? McDonald’s? Or somewhere else?”
“Meanwhile be aware that the service user is anxious and trying to make order out of chaos. Reassure them and realise that their brain may be like spaghetti!”
None of us like being told to do things that frighten us. It is unrealistic to expect that people will do activities that make them highly anxious. They may need to socialise and to get more confident, but trying to force them to go to the neighbour’s New Year’s Eve party will leave your nerves in tatters and damage your relationship with them as well.
It is helpful to set a regular routine, maybe ask for assistance with small jobs that are predictable and short. Give clear instructions such as “can you cleanthe kitchen worktops with this cloth and this spray”, rather than “clean the kitchen”. Set small tasks and expect some co-operation. Concentration can be an issue and they may wander off and make mistakes, but try to stick to praising positives rather than criticising negatives.
If they will not eat regular meals, then it may be useful to have accessible healthy do-it-yourself snacks. People can become quite nocturnal and it is crucial to avoid a diet of crisps and chocolate, especially if the medication gives them the permanent ‘munchies’ as some does.
There is no clear line between ‘can’t do’ and ‘won’t do’. You may suspect that they are doing less than they could, but the only guide is what they do, rather than what they say. If they can make a sandwich once, there is a good chance they can make one again.
In an ideal world you will slowly withdraw your help at a pace they can cope with and increasingly leave them to cope alone, even if they are not always getting it right. The other alternative is to do everything for them because they never get it perfect or they leave a mess. Doing too much for them for too long can be unhelpful as it gives the message ‘I don’t expect
you to be able to do this’ and over time they lose skills.
It is very easy to get frustrated and angry and to start thinking of them as (and calling
them) lazy or unhelpful. It will be difficult not to lose your temper sometimes, but again,
if you can, find a way to reduce your stress levels that doesn’t involve getting mad at them. You may have to change your own attitude and just learn to live with a messy
kitchen for a while!
Intervene more if a person is clearly unwell and less if they seem to be managing. To make changes you have to be confident that the time is right and the risks are low.
Support the person to work on changing unhelpful behaviour.
Use as many sources of support as possible.
Encourage any interest or skill development – in small steps.
The more they take back responsibility and rebuild their independence the better for both of you long term. This requires stepping back from being in ‘protective’ mode, doing as little as possible and taking small positive risks. This can be hard to do alone, a professional may offer advice but this is not always available, especially when the crisis has passed.
Your son has been through his first psychotic episode and is much better but still highly anxious most of the time. He hates being alone in the house but won’t go out. He doesn’t really trust anyone but you, but he is often angry and depressed by his situation. Result? You stay in most of the time, you get frustrated and angry as well, and your relationship with him suffers. He never has to deal with his fears and so remains anxious.
If you tell him you are going out for 10 minutes at 10.50am promising to be back by 11am you may well find him angry and anxious on your return. You reassure him that you will always be back by the time you say (except in real emergencies and then you will phone) and repeat this exercise several times until the anxiety lessens. Then you increase to 15 minutes, then 20
minutes. If this works you can end up having several hours out and spend more quality time with him because you are less stressed.
This gradual build up of trust and working on independence works in many ways but it can be hard to pursue, especially of you get ‘threats’ for going against their wishes. Service users may be scared or angry that you are leaving them. Nevertheless, for both of your sakes it is important that you have consistent boundaries, limits and routines.
If you always cook and clean you may need to support them to relearn, but avoid taking over just because standards are low – no one died from eating cheese sandwiches for a month! It is hard for them, having lost confidence and feeling highly uncertain about doing anything new. In addition, medication can make people feel less energised and more confused – as can the MH problem itself. Carers have to be confident that the time is right and of the long-term benefits of change to work on this.
‘Tough love’ is the process of acting in their best interest even though it may not be what they want.
Recognising any situations that cause distress and what helps at these times is useful. If they learn their own ‘triggers’ and coping strategies, then they are taking back control of their own lives as much as they can.
There are several services offering support to people to get training, voluntary or paid work, or increased social contact. Often these organisations take self-referrals. Ask the professionals or local voluntary organisations such as Mind for more information.
“I mourn what might have been. While others of xxxx’s age have married, split up, had children, got jobs, travelled, bought houses, gone to university, xxxx has been in stasis. He hasn’t moved forward. I would visit him in hospital and the only subject he had to talk about was his childhood. Sometimes we would just sit in silence as he would say ‘I do nothing, so I have nothing to say.’”