Caregiving for Schizophrenia - How to be a good ally
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“I’m Right Here”: How to be a Good Ally
Finding out that someone you love has schizophrenia can evoke feelings that are hard to explain and more so to manage, irrespective of whether they are a family member, friend, office colleague or just someone you know.
Given the myths and misconceptions about schizophrenia and its inaccurate media depictions, maybe your initial reaction was something along the lines of “They’re crazy!” but we would like to help you move beyond this initial mystery, confusion and fear towards being a good ally to your loved one. Schizophrenia is not a life sentence and we are here to help you and your loved one through the process of recovery.
To help your loved one deal with their condition mindfully, start by understanding what exactly they are going through and accepting the difficulties that are a part and parcel of schizophrenia. Actively involve yourself on their road to recovery by being a part of their treatment plan and encouraging them to lead a fuller life without ignoring your own needs.
“What would you know”: Educate Yourself about What Schizophrenia is and isn’t
Schizophrenia is surrounded by myths and misconceptions. As family and friends, while you may do your best to be supportive, the challenge becomes even harder if you are unfamiliar with the condition. Reading up online about schizophrenia and its symptoms, causes, myths and treatment options can help you put yourself in your loved one’s shoes and actively advocate against the discrimination that people with schizophrenia face. This can also equip you to identify the symptoms of a schizophrenic person.
“You could use some help”: How to encourage your loved one to seek treatment
Standing on the outside, it might seem pretty straightforward to you – a person with schizophrenia must seek help for the voice and conspiracy theories in their head. To your loved one, however, their hallucinations, delusions and paranoia are very real. It is difficult to encourage them to seek medical or psychological treatment for schizophrenia if it is hard for them to even remember they are ill in the first place. Instead, try to:
- Be supportive: Broach the subject gently and in an environment that your loved one is comfortable in. Let close and trusted family members or friends lead the conversation. Avoid using a threatening or confrontational tone, replacing it instead with how treatment might be meaningful to your loved ones and the activities they enjoy. Say, for instance, “treatment can quiet the voices in your head” or “it can help you in doing things you enjoy like _”.
- Focus on a particular symptom: Your loved one might also be resisting treatment to hold on to fragments of their “normal” life or to avoid being called “crazy”. You can make the process less threatening by suggesting help for a particular symptom like hallucinations, lack of motivation or change in sleep patterns.
- Provide options: Battling schizophrenia already feels like losing control of oneself. Ordering your loved one to seek treatment could be perceived as a further loss of autonomy and hence invite resistance. Instead, offer your loved one options of doctors and treatment plans so they can make the decision.
- Supported admission/Involuntary admission/Assisted Outpatient Treatment: A lesser-known fact is that in extreme cases if your loved one is legally proven to lack insight due to a severe mental illness and poses a risk to themselves or others which requires them to be admitted but they refuse, the Mental Health Act, 1987 allows for (insert term) under “special circumstances”. Your loved one can be admitted by a psychiatrist, on the family’s request (supported by certificates from two medical practitioners), without a magistrate coming into the picture at all. A team will then escort your loved one to the treatment facility.
“How are you doing?”: How to support your loved one’s treatment
If asking for help is hard, asking for help with one’s mental health might seem impossible. You can make the process easier for your loved one by reaching out and starting a conversation yourself. A simple “What can I do to help?” rather than asking could help them feel safe and find support without seeking it out.
- Be collaborative: Your loved one is the best judge of the help they need. Ask them if you can monitor their medication, accompany them to appointments and look out for risks of relapse. A friend or family member’s insight can help your loved one’s medical provider understand specific symptoms or behaviours that your loved one might have missed. When your loved one has a voice in their treatment, they take ownership of their recovery.
- Monitor medication: While regular medication can help keep the worst symptoms of schizophrenia at bay, your loved one might still be suspicious of taking them due to their predisposition. To get the most from their medication, encourage them to follow their schedules by using some of the pointers we discussed earlier for starting treatment.
Medication reminder apps, weekly pill boxes and friendly check-ins can help. Take any side effects seriously and report them to the doctor so appropriate changes can be made. You can help avoid drug interactions by giving the doctor a comprehensive list of all drugs and supplements being taken and being mindful of mixing medication with alcohol or recreational drugs.
- Track progress: Logging your loved one’s behaviour, mood and the effects of various treatments can help not just their treatment team, but also you in better understanding their condition and even preventing relapse by identifying early warning signs.
- Be Sensitive: A simple google search will reveal recommendations like "how to deal with schizophrenic", "how to help someone who is schizophrenic", "how to help a schizophrenic". This is not how a person fighting schizophrenia should be referred to. The disorder doesn't define them and make them "schizophrenic" it is just another challenge that they have to fight.
“What if they say something crazy?”: How to respond to your loved one’s hallucinations or delusions
Maybe your loved one told you that they think someone wants to kill them or they can hear angry voices in their head or that Hitler is communicating with them or they think they are a millionaire. So what? Politicians say ridiculous things all the time and you believe them. Instead of challenging or agreeing with these hallucinations or delusions, acknowledge that you have heard your loved one and while you do not agree with them you can empathize with what they might be feeling. Then steer the conversation to a topic you both have similar opinions about.
“What do we do now?”: Creating an action plan in case of a crisis
Despite your and your loved one’s best efforts, moments of crisis may come but thorough preparation and an open discussion about the plan with your loved one can help you manage the situation effectively and make it less frightening for your loved one. Some tips for handling a crisis are:
- Keep emergency contact information and addresses of their doctor and therapists close.
- Use a calm and quiet voice with and around them and speak to them at eye level. Reduce distractions like visitors, TV or fluorescent lights.
- Don’t challenge their delusions and hallucinations because you cannot reason with psychosis.
- Don’t express anger. Ask them how they are feeling instead.
If you notice any warning signs of relapse or other indications that your loved one’s symptoms of schizophrenia are getting worse, call the doctor right away.
Rehabilitation: The Best Treatment for Schizophrenia
Early intervention makes a substantial difference in schizophrenia, so help your loved one start treatment today. A rehabilitation programme can monitor your loved one’s medication professionally, provide constant supervision in case they pose a threat to themselves or others and help your loved one build and adhere to a routine.
Being around people who are recovering from similar illnesses can make it easier for your loved ones to realize they are hallucinating and to feel motivated towards their recovery. With professional help available 24/7, your loved ones can focus on their recovery without fearing any judgement. If you are trying to assess whether your loved one would do better in a rehabilitation centre, you can book a free clinical advisory session with a professional at Cadabams today.
A new day: How to redefine recovery and help your loved one lead a fuller life
Recovery is never a destination, it’s a process. There will always be challenges when it comes to schizophrenia, but you can help your loved one patiently achieve manageable milestones on their road to recovery. You can empower them by encouraging self-help in living a fuller life.
- Treat them like a person: Our in-house programme manager told us that in the final stages of recovery, many friends and family members expect their loved one to apologize for the inconvenience they have caused. Don’t treat them like schizophrenia is their fault. Support and encouragement in a non-judgemental and non-conditional way for their progress, active empathy, help with errands and spending time doing banal activities could mean the world to your loved one.
- Encourage self-help: Don’t take away your loved one’s voices by babysitting them. Encouraging autonomy and treatment are important elements of recovery. Give them the opportunity to employ self-help strategies they have learnt for a healthier diet, managing stress, exercising and building meaningful interpersonal relationships that can speed up their recovery. Help them set SMART (Specific, Measurable, Achievable, Realistic and Timed) goals and an action plan to help them feel hopeful and motivated to succeed.
“What about me?”: Caregiver’s burnout and taking care of yourself
Having a loved one with schizophrenia can be taxing not just for them but even those around them, including you. Sometimes, despite your best efforts, your loved one might refuse medication or have an episode and it can lead to difficult emotions like fear, guilt, anger, frustration and helplessness. Don’t take it personally. Recognize your limits and remember that just a family member or friend is not the only support they have. You can’t do it all so take help from support groups, doctors or helplines if you feel like you are unable to provide the support they need.
You can join a support group yourself to connect with people who have first-hand experiences of what you are going through. And most importantly, make sure that you take care of yourself. Carve out time to do things that help you relax or you might end up having caregiver burnout. You might face physical and emotional exhaustion and find a shift in your attitude, from positive and caring to negative and unconcerned. Instead, caregivers who are attentive to their own needs can handle the ups and downs of supporting their loved ones better.
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