Coping with Being a Caregiver for an Adult Family Member with a Serious Mental Illness
by Erika Slater
“Developed countries are shifting their mental health policies
away from hospital-based care towards community-based care,
and family caregivers play an essential role in making living in
the community with a severe mental illness possible.”
LUCAS KU Leuven/EUFAMI Survey 2015
In this article you’ll discover:
- Practical ways of coping with being a family caregiver for an adult with a serious mental illness to reduce stress, avoid burnout, and achieve a balanced life.
- The benefits of support groups for caregivers and the leadership role you play in the professional team supporting your loved one.
- How to work with medical professionals and other service providers so you get access to information and seen as a member of their team.
- Further reading and resources around caregiver coping strategies, support groups, and life balance so you provide quality care without burning out.
If you’re a caregiver for a family member with a serious mental illness, then you know it can be a demanding and stressful role leading to burnout and negatively impacting both your life and that of your loved love. I know this from personal experience.
More is expected of family caregivers, who’ve become a pillar in the recovery of their patient alongside formal caregivers. There’s no greater stress than caring for a loved one with mental illness. So, anything you can do to reduce your stress and burnout potential is of paramount importance in helping to provide quality of care to your loved one.
As a family caregiver survey cited later says “The balance between taking on the role and responsibility as a carer for a relative with severe mental illness and preserving one’s own quality of life is fragile.”
The unpredictable nature and actions of those with mental illness, even when on medication and in treatment, keeps your anxiety level high. But to throw your hands up when the going gets tough isn’t an option, as that’s when they need your help the most. I’ve also seen the negative impact of being a martyr and trying to do all the caregiving oneself. This has its own set of problems and impact on your loved one.
Your caregiver role is critical but at times it can seem your input to treatment is ignored by medical professionals and access to critical information is barred, which only increases your stress and anxiety level.
In this article I’m going to offer suggestions that have worked for me and others dealing with your situation. I’ll discuss practical coping strategies you can interject into your life daily to help reduce your feelings of being overwhelmed, overburdened and in danger of burnout.
COPING SKILLS FOR FAMILY CAREGIVERS AND HOW TO LEAD A BALANCED LIFE:
The amount of effort put into supporting someone with mental illness can be taxing on a caregiver. Stress comes in all shapes and sizes, and can affect you physically, mentally, and emotionally. We are still learning from scientific research the negative impact on our immune system from chronic stress, especially as we age and our organs become more susceptible to breakdown. [Suzanne C. Segerstrom and Gregory E. Miller – Psychological Stress and the Human Immune System: A Meta-Analytic Study of 30 Years of Inquiry] – see link in resource section at end.
Enduring stress over a prolonged period will affect one mentally. Simple mental tasks become more difficult to complete because your circuits become over-ridden with worries.
It’s not uncommon to begin forgetting the simplest tasks or get side-tracked, even overlooking important appointments.
Being a caregiver to a loved one who’s suffering from mental illness can be debilitating emotionally. Many caregivers develop feelings of helplessness, haplessness and hopelessness which start to facilitate the phenomenon of depression. It’s not uncommon for caregivers to experience crying spells on a regular basis. Often, caregivers will break down and become overwhelmed with feelings of sadness, and this can lead to burnout.
Signs of Burn-Out and Depression:
According to Dr. Peter Sacco, “Burn-out occurs when highly committed people start to lose interest and motivation due to physical, emotional, or psychological exhaustion.” This most often happens under the following conditions:
1. You’ve been under very intense pressure for a long period… way too long!
2. You find it impossible to say no to others and additional responsibilities. You feel you owe people or must help them.
3. You possess a perfectionist personality and the need to do things 100%.
4. You’re biting off more than you can chew, in that you’re trying to do too much while lacking too little resources.
5. You’re emotionally drained because you’re letting those around you suck the life out of you.
When burn-out leads to depression, then the caregiver has taken their condition to a higher and dangerous level requiring their own treatment. Links to two articles for further reading on this topic are “Depression and Caregiving”, and “The Tell-Tale Signs of Burnout… Do You Have Them?”, can be found in the resource section below.
Managing Your Self-Care:
Nurses and health care aids are trained to deal with others and taught to be objective. When you are caring for a loved one, it’s hard to remain objective and disallow your personal feelings from creeping into your frame of mind. Professionals can walk away from their jobs and enjoy their personal lives. However, when you care for a loved with a mental illness, your personal world literally becomes re-created by the mental health status of your loved one!
Family caregivers are under a constant barrage of trying to establish a routine of caring and having a life of their own, battling to get services for their loved ones, fighting with them to take treatment, turn-up for appointments, and relapses.
It’s stressful regardless if your loved one lives in your household or they live independently. Out of sight isn’t “out of mind” when it comes to providing caregiving. So, managing your own self-care is important to provide a balanced life.
In a booklet put out by NAMI Cape Cod it discusses the value of self-care (as they say – often referred to as ‘Put the oxygen mask on yourself first‘) and offers a set of suggestions to ensure you’re creating your own self-care program. (See link in resource section to contact NAMI Cape Cod to obtain your own copy). I’ve extracted some of their suggestions here:
- Maintain your friendships or develop some new ones.
- Indulge and nurture your hobbies such as: exercising (walking/running with friends, biking, gym workouts), reading fun books, seeing movies, building things/woodworking, cooking/baking, knitting/quilting, eating out.
- Accept all invitations for parties and celebrations. Don’t isolate yourself.
- Identify and express your feelings through journaling.
- Make getting enough sleep a priority.
- Eat healthy foods.
- Become active in the community and/or in your church
There must be time for yourself. If you don’t manage your stress, then, no one else will. So, choose a few activities from the list above.
Reduce Confrontation by Learning New Approaches with your Loved One:
Dealing with a person with mental illness isn’t a cake-walk. Logic and reasoning with them can be futile at times causing frustration and harsh words on both sides. The fact is, they don’t see the world the same as you do, and frankly, you’re in a better position to adjust your perspective than they are, and in effect relieve the tension and your stress, and likely get a better outcome.
In Dr. Xavier Amador’s excellent book “I’m Not Sick I Don’t Need Help!” he discusses approaches and the words to use when dealing with somebody with mental illness. Dr. Amador had a brother with a mental illness and developed his approaches based on personal experiences and dealing with his patients. The aim is to diffuse confrontation and it offers ways to adapt your perspective to those of a person with mental illness, so they feel they’re listened to and respected. The approach takes practice and a willingness to see the illness through their eyes even if their logic and reasoning is flawed to you – to them its their reality.
Mindfulness, Meditation and Hypnosis:
I put these three together because they’re different aspects of self-care and not mutually exclusive. While mindfulness has become “avant garde” these days don’t dismiss it as a personal therapy approach. There’s a reason why its become popular. Mindfulness can be a quick win for you at times of stress and frustration when free time is limited.
The concept of closing your eyes and centering yourself in the present without wearing critical sensors or blinders, and where the mind can be in a state of tranquility reduces stress quickly and allows a fresh start to the rest of the day.
I’ve included a link below to an introduction to mindfulness resource “Introduction to Mindfulness – 4-Part Series.”
Wikipedia defines meditation “as a practice where an individual uses a technique, such as focusing their mind on a particular object, thought or activity, to achieve a mentally clear and emotionally calm state.” Meditation, then, can be used to reduce stress, anxiety, depression, and pain, and increasing peace, perception and wellbeing. I’ve generally found meditation requires more practice than mindfulness and so attending some classes helps.
In the context of coping skills for family caregivers then hypnosis can provide relief in both stress and improving outcomes with the mentally ill. Hypnosis, then, can provide aspects of both mindfulness and meditation but also provide resources and tools to help with interactions with your loved ones and others. Often, our habits dictate reactions to events, people, and situations. If these learned reactions don’t help the situation or cause you to be frustrated or stressed, then hypnosis can help change outcomes.
Generally, most folks benefit from seeing a hypnotist for a few sessions to get started and learn the skills of self-hypnosis, so they’re able to perform hypnosis on themselves without ongoing visits to a hypnotherapist. If you’re new to hypnosis, then check out the link in the resource section for my introductory article called “What is Hypnosis and How Does Hypnosis Work?”
SUPPORT FOR FAMILY CAREGIVERS AND PLAYING THE TEAM LEADER:
Always keep open the network of support systems you already have. Whenever family and friends offer to help, seize it! It’s common to become so fixated with caring for your loved one you lose track of the boundaries which separate you from them. Some individuals develop a “martyr” complex sacrificing their lives for their loved one, believing they should be the only ones offering care and not ‘burden’ others. In the long-term this is a mistake. Accept help from others and be humbled enough to reach out for support!
There are support groups for families dealing with mentally ill members. There are plenty of people in your shoes, and in my experience, I’ve found just being able to talk to folks dealing with similar situation helps to ease the burden.
There are several support groups in North America and Europe. If you live in USA, then the National Alliance on Mental Illness (NAMI) is nationwide and provides local support. NAMI also runs free programs and one of these is the Family-To-Family Program. While a commitment of time it provides education about mental illness and practical advice on coping. You also get the opportunity to meet and hear how others are dealing with illness in their family. NAMI also runs local support groups for family caregivers that meet regularly and offer an ongoing opportunity to have an empathetic ear to your situation. For more information about your local chapters and programs see the NAMI link in the resource section below.
I include here a reminder to manage the healthcare team of your mentally ill family member. You should consider their primary physician, psychiatrist, therapist, nurses, etc., as part of your team, which could also include other professionals. Don’t hesitate to reach out to them as support for you. Of course, tap into your primary physician, therapist, counselor, or hypnotherapist to help balance those focused on you, rather than your loved one.
Getting medical professionals to view themselves as part of your team can be tricky and at times frustrating. But, for your long-term well-being and that of your ill family member, it’s critical you’ve a group of medical professionals that recognize the importance of your role and treat you with respect and embrace your input into the medical welfare of their medical patient. Don’t hesitate to move on from providers who ignore your input.
WORKING WITH MEDICAL PROFESSIONS AND OTHER SERVICE PROVIDERS:
HIPAA has introduced an unnecessary barrier between family caregivers and the medical community. Professionals, to protect themselves, often interpret Federal and State medical privacy laws conservatively, so you end up feeling “shut out” of the conversation of what is going on, and the treatment prescribed. This can lead to tension and frustration with those who are supposed to have your loved ones best medical interest at heart. The fact is there’s nothing in HIPAA, or any state laws, prohibiting medical professionals from listening to information you have about your loved one. While they may choose not to release information to you, they have to listen to you.
However, being confrontational all the time isn’t going to endure you to any professional.
Better you adopt a stance to be a constructive part of the team and offer information and help. At the end of the day you’re the overall leader of your loved one’s team. The medical team is just one aspect of the care they need.
If possible get your loved one to sign medical release forms so you can be present in medical visits and consultations, and receive copies of any records and documents. By having this at the start it helps avoid absence of communication and reduces your stress and frustration level. States differ on the process and terms but consider guardianship if this helps you with ensuring ongoing care for your loved one. This requires their consent and you’ll need the help of a lawyer. In Massachusetts, you have the option of being a “Roger’s Monitor” covering the medication as part of the guardianship.
Keep a journal of visits containing dates, names and telephone numbers, and list of medications and details of treatments agreed. This way you’re not relying on memory and have a permanent record of everything in one place. This may seem trivial but it’s important to you and is helpful information to share with any new medical professional joining your team.
Sooner or later you’ll encounter the police. Anticipate this and make yourself and loved one known to the local police before an event happens. In Massachusetts special training is offered to police on dealing with people with mental illness. If you call when a crisis occurs request a CCIT or CIT-trained officer to be dispatched, or at the minimum explain you’re dealing with a mental illness issue. The police are there to help you, and your loved one, and to avoid a tragedy. When they arrive stay calm, provide them useful information, and then step back and let them do their job. They can escort your loved one to hospital if necessary.
Let me conclude this section by citing from the LUCAS KU Leuven/EUFAMI Survey 2015: “The greatest need of family caregivers lies in the recognition they’re a full partner in care, and in the need to be listened to and taken seriously by professional caregivers. Family caregivers know what it is to live with mental illness through their daily experience with the patient. They especially worry about the future and what will happen with their ill relative in the long-term. These worries need to be taken seriously.” The survey is called “Experiences of Family Caregivers for Persons with Severe Mental Illness”, and I’ve put a link to it in the resource section below.
Another excellent resource for you which although focused on providing a manual for a family dealing with a schizophrenic member is applicable for other disorders is “Surviving Schizophrenia – A Family Manual” by E. Torrey Fuller. His words and explanations have helped me through many worrying times.
I set out to provide you practical ways to cope better being a family caregiver and managing your stress through interactions with your loved one, and medical and other service providers. But, it’s primarily about having a balanced life beyond your role as a family caregiver. Remember… You’re not alone.
There are no clear-cut strategies for being ‘the perfect caregiver’. Simply put – you need to keep your life in balance. You need to learn to keep things in perspective and keep stress in check before it overwhelms you.
At the center of coping skills is having a activities that keep fun in your life. Avoid isolation from friends and other family members and take care of your own mental and physical health. Adopt the airline tag line of “putting on your own oxygen mask first before helping others.” A positive and healthy you are the best way to provide ongoing quality care for your family member.
Seek out help and support for your caregiving role. Contact NAMI, or similar organizations, to find a local support group and education programs and attend them to gain insight into how others are coping with similar situations. Build your own support team of friends and relatives who you can lean on to help in times of additional stress or when you need a respite.
Look at medical professionals and service people like the police as team members and managing the encounters by building a positive rapport with them so you get access to information about your loved one, and setup for positive encounters in times of crisis.
Consider therapy for yourself to cope. This could include mindfulness, counseling, hypnosis, or all of these. Self-hypnosis can be learned and so seek out a local hypnotist who can help you benefit from its control of your stress and anxiety and achieve a life balance. You can check out my various Hypnosis Services I offer here or contact me directly if you want to learn more about hypnosis and how it can help you by completing the form here >>>
ADDITIONAL RESOURCES RELATED TO BEING A CAREGIVER:
Erika Slater CH
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