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4. Shared management of mental health
Although the responsibility for your health is yours, you are not alone on this journey! In addition, you are not just a passive recipient of care, and both you and your mental health service providers can work together to make decisions about your treatment and progress. Mental Health America defines shared decision-making as a process that occurs ‘when people with mental health conditions and their treatment providers work together to come up with the best possible course of action. It's a process that emphasises communication and trust, and an approach where the expertise of the person experiencing the condition and the medical professional are valued equally. Shared decision-making is about respect and dignity.’ Working with a mental health service provider means that you can both develop a plan with clear shared objectives and steps.
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Shared decision-making is relatively new in health care and not all medical professionals are trained in or understand this practice. Today, there are many stigmas and traditions of care within the treatment of mental health that are increasingly seen as unacceptable and need to change, but this change will not happen quickly. It is therefore the role of everyone involved to take charge of active, open and engaged learning together towards better mental health care.
4.2 Caregiving
An important part of managing your mental health is developing a network of friends and family who you can trust to act in your best interests, support you and hold you accountable. Many people have someone who helps to care for them on a daily basis. This is often a family member, partner or close friend. The vast majority of daily care of
people who are having mental health challenges is given by family and friends. Generally, these carers are not trained in mental health issues or care and they may find it a difficult role. Each person’s mental health experience is different, and everyone’s journey to health follows a different path. It makes sense that caregiving does not look the same for everyone either. Caregivers are likely to experience stress, so they need to take care of their own mental health. They can find support through sharing their experiences, joining communities and getting help. There are support groups online and on social media, as well as resources such as toolkits (you can find examples at www.mhanational.org or on the VANSA Take Care website). We discuss ways that caregivers can take care of themselves in more detail in Section 64.
Caregivers need to plan for difficult periods and develop networks and strategies for care. This should be done during periods of wellness and stability, when difficult conversations will be easier, and plans can be agreed on without too much emotion. This will help to ensure that everyone involved will know what to do in a crisis. Developing a wellness recovery action plan (WRAP) and medical advance directives are discussed in Section 58.
4.3 Relapses and flares
Flares and relapses are a normal part of the recovery process, and it is important to expect them and know how to deal with them before they happen. This is part of the process of learning to manage your own mental health challenges. Flares refer to an experience temporarily worsening. Relapses refer to a person's symptoms returning so that their functioning decreases. Relapsing tends to indicate a backward turn in the mental health journey. However, remember that recovery is a journey, and sometime the path takes a detour or goes back on itself. This does not mean that you are off the path forever. Flares and relapses should not be considered failures or an end of the health care journey. Rather, by working through flares and relapses, you can learn about how to better manage mental health challenges.
Flare and relapse triggers
Relapses do not usually occur ‘out of the blue’. They tend to follow a sequence of events that act as a trigger. Triggers are external: they are people, places, and things that increase a person's likelihood of relapse. For example, being at a party where substances are being used may trigger a person to drink or use drugs again. Not sleeping for a long period of time might trigger a bout of anxiety or depression. For people using medication, a gap in correctly taking medication will often result in a flare or a relapse.
Identifying and dealing with triggers
In order to identify triggers for relapses or flares, it can be helpful to discuss past relapses and what happened before them. You can also keep a journal or log book, to help you monitor your feelings or symptoms, and what triggered them. You will need to ask and answer questions: What are some triggers that you have experienced in the past? What happened immediately before the relapse or flare? What did you do? Who did you see? Based on your past relapses or flares, you will be able to identify the most important trigger situations for yourself. For example, you might identify these situations as triggers: • Being at a party where alcohol or drugs are being used • Seeing a certain group of friends, who often use drugs • Being in a very high stress situation that replicates your past experience of trauma • Having a conflict with a loved one.
Once you have identified triggering situations, make a plan about how you will deal with these situations when they next arise. It’s important to keep in mind that triggers are generally not entirely avoidable. You will go to parties, see friends, experience stress and have fights with loved ones, so your plan for relapses and flares should include strategies for identifying the trigger as quickly as possible and a process for mitigating harm. This could include asking a friend to remove you from a triggering space immediately, planning down time after a very stressful period, or taking time out to calm down before continuing a heated discussion with a loved one.
Sometimes your mitigation strategies might not work, and you will have a relapse. Plan for this too. Who will help you be fed or cared for when triggers happen? Is there a person who knows the challenges of your triggers and can talk you through them? In more serious scenarios, does a carer know the details of your health care professional to call for help? Develop and share your trigger plans (WRAP) with the people who are helping you on this journey.
4.4 Wellness recovery action plans
According to the National Alliance on Mental Illness, a wellness recovery action plan (WRAP) helps to prepare for relapses and flares. By doing so, triggers can be addressed without becoming a crisis, and if a crisis does emerge, there is a plan to deal with it. The WRAP enables greater communication with carers and medical professionals if necessary. Putting together a WRAP when you are feeling stable and healthy is a good way to open up the conversation on your current state, experiences and expectations. Having a WRAP will support those responding to a flare or relapse as they will have a lot of important information at hand.
What can I do...
To be prepared?
A WRAP includes: 1. Phone numbers for your therapist, psychiatrist and other health care providers 2. A caregiver’s address and phone number(s) 3. Names and contact details of family members and friends who would be helpful 4. Local crisis line number (see page 77 of this book) 5. Addresses of walk-in crisis centres or emergency rooms 6. Medical aid details 7. Notes on diagnosis and medications 8. A brief history of your health care journey (including any psychotic episodes, drug use etc.)
9. Triggers 10.Things that have helped in the past 11.Go over the plan with your loved ones, caregivers and doctors. Keep copies in several places: you might keep physical copies and electronic copies on your phone or in your emails for quick access. If you are a caregiver looking after someone struggling mental health challenges and who does not want to cocreate a WRAP, it can still be useful to do one yourself to help you feel better prepared.
4.5 Medical advance directives
A medical advance directive is a written document that expresses your wishes in advance about what types of treatments, services and other assistance you want if you undergo a mental health crisis and are unable to take part in decisions about your own care. You can also use it to grant decision-making authority to another person who will serve as your advocate and health care agent until the mental health crisis is over.
If you have a mental health crisis or emergency, you may become too incapacitated to fully understand what treatment the doctor recommends or to make decisions about your treatment. At such times, you lack capacity to make informed decisions about your care. You might be unable to comprehend information, to make decisions or unable to communicate your desires. Psychiatric advance directives take effect during these times. The doctors may take into consideration your wishes as expressed in your psychiatric advance directive or by the instructions of the person you appointed to speak for you.
An advance directive will help those responsible for your care to decide on your treatment. It can also help your loved ones make the right decisions on your behalf, and know what kinds of treatment decisions you would prefer when you are unable to articulate them yourself. Developing an advance directive is an opportunity to bring together your primary carer (doctor, psychiatrist or other carer) together with your loved ones to have open and productive discussions about your needs ahead of time.
In South Africa, medical advance directives are usually used for elderly or terminal patients and are not in regular use for a mental health crisis, though it is becoming more regular. Advance directives do not legally bind a doctor to your wishes because a doctor must ultimately make the decisions they deem best for a patient. However, doctors are encouraged by the HPCSA to respect the wishes of patients as indicated in advance directives. It is also worthwhile thinking about what you want to happen to you, as this will help caregivers or family to make decisions in a stressful time. For more information about advance directives you can visit the website of the South African Medical Protection Organisation. For guidance developing a psychiatric advance directive there are some guiding steps on the website for Mental Health America.
Personal Experiences
What has worked for me: 1. Regular carbs and proteins 2. Physical exercise routines every morning except
Saturday and Sunday 3. Prioritising daily routines 4. Being inquisitive about your medical check with the doctor - ask questions 5. Recognising an unhealthy lifestyle was leading to recurrent admissions to hospital 6. Positive life choices 7. Communication 8. Keeping physically and mentally busy allowed my mind to keep off recreational substances 9. Waking up early and going to sleep early helped me acquire a balance in sleep routine 10. A lot of fluids aid in keeping me hydrated from some of the medication dosages that leave your throat dry and nauseous 11. I take warm baths more to help aid the trembling side effects from the medication 12. Taking your meds immediately after you eat helps with later effects. 13. Music.
SECTION D
HOW CAN I CARE FOR MYSELF AND OTHERS?
According to Mental Health First Aid, there are four major dimensions of recovery:
Health
Overcoming or managing your challenge or symptoms and making informed, healthy choices that support physical and emotional wellbeing. Home
Having a stable and safe place to live. Purpose
Conducting meaningful daily activities and having the independence, income and resources to participate in society. Community
Having relationships and social networks that provide support and friendship.
Caring for yourself is deeply affected by your social circumstances. For artists this is especially challenging because it can be very difficult for artists to maintain a stable life, because of the precarious nature of our work, income and living standards, and because the community is often not encouraging of healthy mental health lifestyles.
