When Trevor began to experience psychotic breaks, I was confused. I had no idea what was going on, and his behavior frightened me, which was something I had never experienced with him before. Prior to this, he was happy, socially engaged, good student, musician, and athlete. We did not see anything that concerned us prior to his moving into psychosis, which began in his first year in college.–MCM
I wish people close to me would show more concern instead of avoiding talking about our son. –DS
When we think about medical crises, our thoughts typically imagine injuries or diseases, but another category exists, emotional disorders. Sometimes our loved ones experience emotional challenges throughout life, while for others, there is a sudden onset. Regardless of how long the emotional challenges have occurred, caretakers find themselves mired in the unique challenges of coping with mental health conditions.
When a loved one succumbs to an illness or injury, we tend to stay focused on the moment, but when a loved one struggles with emotional challenges, it spins us into the past. We search our memories. Were there signs that I missed? Was she always like this? Was he depressed and I just didn’t see it? Questions bombard us. We think if we can just find an answer, we can make sense out of all of this, and then we will know what to do.
Mental health issues and their complexities create a subset of hurdles. According to the National Alliance of Mental Illness (NAMI), most people with a mental illness have, at some point in their lives, are blamed for their condition. Not only are patients subjected to misunderstanding their supporters are, too. Neighbors and friends don’t bring casseroles over when your child is exhausting to manage due to his impulsivity and aggression. Playdates with peers are cancelled when parents learn she has difficulty managing her emotions. We don’t tell employers we need to leave early on Thursdays for our family therapy sessions like we would for a dentist appointment. We remain in the shadows, feeling alone and isolated.
Ken offers a look into the complexity of his reactions to his daughter’s mental health challenges that took them spinning into a world that cannot be prepared for.
Ken’s Experience How Did This Happen?
Our daughter’s childhood and adolescence were filled with happy times. She went off to college, but after her first year, she had severe bouts of depression. She expressed a desire to commit suicide along with a sense of hopelessness. I was overwhelmed with sadness, grief, anger, and fear she would kill herself. My mind was filled with questions. How in the world could this happen? What did we do wrong as parents for this to happen? Is this just lack of maturity? How can I fix it? She just needs to snap out of it and grow up. Why can’t anyone help her? Why us? Why now? What do I do? How can I help? Where’s the beer? This is hard. I want to scream. I can’t handle this. I hope that she gets it together. I hope that she stays alive. I feel such profound sadness to see our beautiful daughter, who had no issues growing up, go through such horror. Heartbreaking.
Having a child with any crisis is challenging but I think emotional struggles are particularly challenging because others don’t understand them. Cancer is cancer. People understand that, but depression, anxiety, personality disorders, etc., strike at everyone’s own vulnerabilities. We shut down. Others don’t know how to help.
It has been a number of years since it started. I don’t know if my daughter’s treatment will ever end. My wife and I sought counseling to work through our thoughts, feelings, and wondering how we could help. We learned that this is her journey and not ours. We wanted to kick her out of the house a few times. Resentment and anger linger. Much of this is still ongoing. We’ve seen growth and improvement, but it never feels fast enough. A day doesn’t go by when I don’t think about her and our struggles.
All of this affects my mood. I still feel extreme sadness. I feel guilt. I resent that we were told that she was a “different” child and got “bad parenting” comments, such as, we should have fed her different things or done x, y or z. Unless you go through it, you have no idea.
I try to keep a positive outlook, but it is hard because I don’t have any control over outcomes. It is painful to watch. I’m happy about some choices we made and not happy about others. It is like an on-going, massive fire drill. We tried anything that was suggested, hoping it would stick. It takes learning every day. It’s hard to push forward and continue doing what I need to do to keep a roof over my family’s head and food on the table when running away would be easier.
Sarah’s Experience I Wish
We walked through a revolving door leading us down a path of multiple diagnoses, hospitalizations, medication, psychiatrists, and therapists when our dear son turned 18. The diagnoses landed on Asperger’s and schizophrenia; the latter was the harder pill to swallow. Feelings of devastation, confusion, sadness, and uncertainty peppered our nights and days. We just wanted him to be okay.
He never physically lashed out, but would get extremely aggressive, agitated, angry, and moody leaving us scared because we never knew what was going to happen next. Full blown hallucinations and delusions left us confused as to how to help him get through these terrifying times.
Breaking through the mounting flurry of emotions was hurt. Hurt that some family members and friends rejected Michael. They didn’t want him to be around, although they never witnessed any of Michael’s crises, they just knew the diagnosis and made judgements. They hadn’t educated themselves on the syndrome. The stigma of mental illness superseded connections, past history, and love.
My husband and I saw eye-to-eye when making decisions. I can’t imagine the double pain of having a partner who saw things differently. NAMI (National Alliance on Mental Illness) was and is a life saver. We attended Family-to-Family classes and support groups with others who were caregivers for a loved one with mental illness. Sharing experiences with those who understood what I was going through was invaluable. They didn’t judge. They knew the pain. They understood the journey. Eventually, I cofacilitated the support group which was helpful and gratifying in my journey.
Now, 15 years after the initial schizophrenia diagnosis, Michael lives independently in a condo near where we live. While managing most of his life well, he struggles with maintaining employment. He is punctual, dresses appropriately, works well with children, and is endearing. He has difficulty following directions and tends to wing it, is impulsive at times, and gets misinterpreted. He loves music, playing guitar, percussion, and sitar. His home walls are covered with drawings he has created.
What do I wish? Of course, I wish he didn’t have to endure the challenges he has. But, since he has this path, I really wish others would judge him less, be more empathetic, and embrace Michael for the wonderful qualities and talents he has.
Kate’s Experience Pay It Forward
I received one of those phone calls that every parent dreads. Our daughter-in-law informed us that our son, Chris, a few hours earlier, took his own life.
There are no words. No one can comprehend the choice that Chris made. What we do know is that alcohol, anxiety, an incredibly stressful year, a gun, and a history of some dark moments, created a tragedy.
Last August, we all had an incredible trip together, sharing laughter, watching our grandchildren bond, and all of us released frustration from this upside world created from Covid, politics, and violence in our country. We never suspected that we would be planning his funeral two months later.
My first reaction was that this is not fair, but unfortunately, I also know that this is all part is life. My faith is carrying me through this. I do believe that whatever Heaven is, that in the end, the spirits and uniqueness of each of us will be there, together to help those still on this earth. I also believe and know that out of every bad thing, good does emerge in ways one would never think of. I received a phone call from a young man, that Chris mentored while he was in AA. He told me with no uncertainty, that Chris saved his life. He is now happily married and has a 3-year-old son. Chris was an organ donor so that also gives us peace. We are also grateful for the 36 years we had with him.
Everyone wants to know what they can do to help us. The obituary mentions NAMI and Chris’ son’s fund, but really our mantra is to pay it forward in your own way. Paying it forward keeps Chris’ memory alive.
Resources for Emotional Challenges
The American Psychiatric Association has an article on supporting a family member with serious mental illness.[1]
How to help in an emotional crisis according to the American Psychological Association.[2]
NAMI Family-to-Family is a free, 12-session educational program for family and friends of people living with mental illness. It is an evidenced-based program taught by NAMI-trained family members who have been there. Look for a local group.[3]
Mental Health America[4] lists support strategies for parents and other useful information sitewide.
NAMI Family Support Group is a peer-led support group for family members, caregivers, and loved ones of individuals living with mental illness. They are free and confidential.[5]
I Am Not Sick, I Don’t Need Help! How to help someone with mental illness accept treatment, by Xavier Amador,[6] gives practical suggestions about how to help someone with mental illness who doesn’t believe they’re sick.
The Depression and Bipolar Support Alliance[7] has resources for all age groups, including excellent videos with individuals sharing part of their journeys.
The Depression and Bipolar Support Alliance has a network for parents of children with depression or bipolar disorders.[8]
When Your Adult Child Breaks Your Heart: Coping with mental illness, substance abuse, and the problems that tear families apart, by Joel Young and Christine Adamec. [9]
This interview with Ben Affleck discusses the tragedy of addiction.[10]
Alcoholism affects everyone.[11]
[1] Helping a loved one cope with a mental illness. Retrieved May 01, 2020, from https://www.psychiatry.org/patients-families/helping-a-loved-one-cope-with-a-mental-illness
[2] How to help in an emotional crisis. (n.d.). Retrieved May 01, 2020, from https://www.apa.org/helpcenter/emotional-crisis
[3] https://www.nami.org/Support-Education/Mental-Health-Education/NAMI-Family-to-Family
[4] Helping at home: tips for parents. (n.d.). Retrieved May 01, 2020, from https://www.mhanational.org/helping-home-tips-parents
[5] https://www.nami.org/Support-Education/Support-Groups/NAMI-Family-Support-Group
[6] Amador, X. F. (2012). I am not sick, I don’t need help!: How to help someone with mental illness accept treatment. Peconic, NY: Vida Press.
[7] https://www.dbsalliance.org/
[8] Young, J. L., & Adamec, C. A. (2013). When your adult child breaks your heart: coping with mental illness, substance abuse, and other issues. Guilford, CT: Lyons Press.
[9] https://www.dbsalliance.org/programs/balanced-mind-parent-network/
[10] https://www.goodmorningamerica.com/culture/story/ben-affleck-talks-pain-addiction-finding-hope-commitment-69072083
[11] https://www.today.com/video/women-at-betty-ford-center-share-their-struggles-with-alcohol-80461893698
Featured image courtesy of Matthew Ball on Unsplash.
0 Comments