For Families of People Diagnosed with a Mental Illness
First, A Little Rant
This might be a bit of a rant on my part so if you don’t want to hear about how, in spite of what we say, we do not prioritize mental health or mental illness stop reading now. There is still stoicism around mental illness. What the heck is wrong with us as a society? The brain is the second largest organ in the body so... it will malfunction at some point in our lives.
There is still the stigma that people who live with depression anxiety, bipolar, schizophrenia or some other form of mental illness are lazy. They are not. Sometimes illness or medications make people lethargic, sleep more or become restless. Most often people who live with a mental illness are ambitious, smarter than the average person and would give anything to find a balance in their own sense of self. People diagnosed with a mental illness often live in extreme poverty which is enough to kill the sprit in all of us. A society is known as civilized for how it treats its most vulnerable and I think we have a long way to go before reaching justice for all.
This post is for those people and their families.
So what is it like to love someone who lives with a mental illness?
I want to start this blog with a story about how I failed to recognize that my clients most often have families who love care for and advocate with them. I also need to say that most people who are diagnosed with a mental illness live their lives in extreme poverty, are often lonely and isolated from peer or job support.
When I was younger I had a client who had been diagnosed with a serious mental illness. I enjoyed my work with her. Occasionally she talked about her family. She described a family that was unsupportive and we spent some time talking about how she could react to her family members in new ways.
One day after work I stopped in at the grocery store. My client and her mother were in the next aisle. I could hear my client yelling at her mother. I watched them go through the till and her mom acted quietly and respectfully to both to the clerk and her daughter. Then she paid for her adult daughter’s groceries and carried them to the car by herself. Her daughter continued to be rude and belligerent. Her frustration, shame and embarrassment did not allow her to show appreciation for her mother’s support.
It is hard to have an adult child who lives with a diagnosis of mental illness but it can also be tremendously challenging to try and get a correct diagnosis in the first place. There is a lot that science has to learn about the brain and its inner working. There is also a lot that we as human beings need to learn about how to react when someone we love lives with challenging behaviour that often accompanies that illness.
People I know have had to become strong advocates for themselves and their children in a system that seems as if it too is overwhelmed and unsure about diagnosis.
Lessons for me
My lesson that day included: new respect for the role of family. It is difficult to live with a mental illness but on that day I realized how hard it is to live with and love someone who has a mental illness and subsequent behaviour problems.
In our next session the client and I talked about family issues in a whole new way. Eventually she invited her mom into our session and she made a new plan to deal with her emotions around her mom. Her mom made a plan for herself around her own reactions and self care. It is hard to come to terms with a diagnosis of mental illness. It is even harder to accept financial or emotional support from family members.
Roles for Families
Advocacy
Many of the families I have worked with are fine and strong advocates for their family member. Just lately, however, it feels like many of my clients are hitting a brick wall as far as support for family members, either adults or children, who have a mental illness.
The stress on families is longstanding and chronic. Even when things are going well for their loved one there is a worry that the family member might not be able to get the help they need at the right time. There is also a strong concern that once given a diagnosis and medication that either the medication might be incorrect or the diagnosis wrong.
Trying to get their family member help from a mental health system that is overtaxed and has few resources or special programming for people with a specific diagnosis is challenging, time and energy consuming to say the least. It can deplete the spirit like nothing else.
Wait lists are long and diagnosis can be difficult. Medication management for the client and their families can be a nightmare.
So… learn the Mental Health Act, Your rights and responsibilities under it. Work with the medical professionals as much as possible . Learn that they most likely will not be able to talk to you about another adult’s care but they can still be allies. I have included a link to the Canadian Mental Health Act below.
Support and Care Giving
The very nature of mental illness sometimes means that the person who has the illness will become angry or frustrated with their immediate family members and frankly our system that blocks families out of treatment is not working. It would be so nice if our mental health systems were designed to work with the person with the mental illness and their families simultaneously and cohesively.
What I have learned over my career is that family members often play a large role in helping and supporting the person who experiences mental health concerns. You may be trying to help a family member who does not have access to care or who refuses help.
If you live in a rural setting it may be even more difficult to gain access to appropriate support for yourself or the person who is living with mental illness. Keep in mind that it is not all roses and sunshine in our cities either. Our mental health system is certainly under funded and undervalued. It is also seriously understaffed.
Our communities suffer from the lack of services and diversity when we treat people with mental illness as other.
A special note for families of the newly diagnosed, misdiagnosed or undiagnosed
It can be intimidating when someone you love is sick. Our medical system feels so large and disjointed to those of us on the outside of that system. It can be especially scary if the person you love is diagnosed with a mental illness. It’s hard to see someone you love in pain, either physical or emotional and it’s confusing when someone you know well is not acting like themselves.
You know how you would take care of them if they had a cold or flu, but what do you do for a mental illness? Like any other health problem, someone with a mental illness needs extra love and support. You may not be able to see the illness, but it doesn’t mean that you’re powerless to help.
Take care of yourself
What I have learned from many kind and insightful family members is that in order to care for other you must first care for yourself. So then indeed we need a community to care and acknowledge the efforts that family members put into the care and well being of their loved ones.
Pay attention to your own physical and emotional needs, go for walks, swim, join a gym, golf, or snowshoe. I know a caregiver who walked several miles each day to her job just to get some time to herself. No matter the weather she walked back and forth to work as a respite from her worries about her child. Many family members seek counselling just so that they can get some relief and occasionally an outside perspective as their loved one goes through the mental health system. If you know other people who are caregivers for someone with mental health concerns start a support group. Share your advocacy stories and what works for you as well as your genuine concerns.
Exercise,
Eat well,
Drink water
Sleep - a regular and organized sleep hygiene routine is a must.
Talk to someone; share your journey with people you trust.
Meditate every day if you can – even for 5 minutes a day will make a difference
Frankly alcohol and drugs make everything worse so avoid these two things like the plaque
If you need to get a counsellor for yourself it is ok.
Remember to live your life too.
How Can You help?
Research confirms that support from family and friends are a key part of helping someone who is living with mental illness. This support provides a network of practical and emotional help. These networks can be made up of parents, children, siblings, spouses or partners, extended families, close friends and others who care about us like neighbours, coworkers, coaches and teachers. Some people have larger networks than others, but most of us have at least a few people who are there for us when we need them.
There are a many ways that family and friends can aid in someone’s journey of recovery.
Believe your person as well as believe in them. A brain disorder is not their choice.
Plan with your family member about what to do if...and write it down.
Treat your family member with respect and choose your time to express your concerns with them.
Knowing when something is wrong—or right: Getting help early is an important part of treating mental illness. Family and friends are often the first ones to notice that something is wrong. Finding a treatment that works is often a process of trial and error, so family members may also be the first to see signs of improvement.
Seek help: Talk to the medical professionals. Families and friends can be important advocates to help loved ones get through those hard, early stages of having a mental illness. They can help their loved one find out what treatment is best for them. They can also be key in letting professionals know what’s going on, filling in parts of the picture that the person who’s ill may not be well enough to describe on their own.
Helping with medications, appointments and treatments: If you spend a lot of time around your loved ones, you can help them remember to take their medications. You may also be able to help tell a doctor why medications aren’t being taken as they should be. Similarly, you may be involved in reminding your loved one to do their counselling homework or use their light therapy treatment each morning, or reminding your loved one to make or keep appointments for treatment.
Supporting a healthy lifestyle: Families can also help with day-to-day factors such as finances, problem solving, housing, nutrition, recreation and exercise, and proper sleeping habits.
Providing emotional support: You can play an important role in helping someone who’s not feeling well feel less alone and ashamed. They are not to blame for their illness, but they may feel that they are, or may be getting that message from others. You can help encourage hope.
Starting a conversation about Mental Health with someone you are concerned about.
Do you need help starting a conversation about mental health? Try leading with these questions and make sure to actively listen to your friend or family member's response.
I have been worried about you.
Can we talk about what you are experiencing? If not, who are you comfortable talking to?
What can I do to help you to talk about issues with your parents or someone else who is responsible and cares about you?
What else can I help you with?
I am someone who cares and wants to listen. What do you want me to know about how you are feeling?
Who or what has helped you deal with similar issues in the past?
Sometimes talking to someone who has dealt with a similar experience helps. Do you know of others who have experienced these types of problems who you can talk with?
It seems like you are going through a difficult time. How can I help you to find help?
How can I help you find more information about mental health problems?
I'm concerned about your safety. Have you thought about harming yourself or others?
When talking about mental health problems:
Know how to connect people with what help is available
Communicate in a straightforward manner
Speak at a level appropriate to a person's age and development level (preschool children need fewer details as compared to teenagers)
Discuss the topic when and where the person feels safe and comfortable
Watch for reactions during the discussion and slow down or back up if the person becomes confused or looks upset.
This TED Talk by Dr. LLoyd Sederer is very good. it might be the best 15 minutes you spend in a long time. He talks about an American organization NIMH. Their website is listed below.
Note from Deborah
It took me a long time but I began to realize that in my work families are not the adversary. They don’t want their family member to be ill. Their goals are similar to the client’s goals…wellness in any form. Family members are allies to the client’s well being and if we work with families our client’s lives will be richer and more fulfilling. This is my thank you to all of the families who came to teach me.
Thank you.
Deborah
I edited this post on February 3, 2021.
Resources
Guide to the Mental Health Services Act: https://www.ehealthsask.ca/services/resources/Pages/Mental-Health.aspx
Canadian Mental Health Association, https://cmha.ca/
Visit this wonderful website for information and community resources on mental health and mental illnesses.
NIMH https://www.nimh.nih.gov/index.shtml
This is an American Mental Health information website
(Canada) Crisis Services Canada – Suicide Prevention and Support – 24/7 Hours
1-833-456-4566
Prince Albert Mobile Crisis Unit – Mon - Fri 4 pm - 8 am, Sat - Sun 24 hours
306-764-1011
Regina Mobile Crisis Services – Suicide Line - 24/7 Hours
306-525-5333
Saskatoon Mobile Crisis – 24/7 Hours
306-933-6200