This month MerelyMe of our sister depression web site graciously offered to answer some questions I had about living with a loved one who has schizophrenia.
Her mother was diagnosed with this illness. I wanted to give an insider’s view because so many community members write in about their hardship coping with a loved one’s SZ.
MerelyMe also interviewed me for a piece on depression and schizophrenia so as soon as she posts it I will provide the link here.
Loving Someone With Schizophrenia:
When did you first realize something was different about your mother? How old were you?
I was fairly young when I realized that my mother had a mental illness. I remember telling a friend that my mother was “crazy” when I was about six years old. I didn’t have a bad connotation of that word because it was a term my mother used to describe herself. I thought it meant happy or silly. But my grandmother overheard and she grabbed me by the arm and scolded me never to say that again to anybody. I hadn’t realized at the time that I was doing anything wrong or that this was something I needed to keep a secret.
What was the family dynamic growing up as a kid and then a teen with your mother having schizophrenia?
It was just me and my mother growing up as my father had died when I just four. My mother and father had met while they were hospitalized at a mental hospital. She was there to be treated for schizophrenia and my father was being treated for his severe depression. He later died from complications of his addiction to alcohol. My mother never got over it and never remarried. Our extended family pretty much gave up on her and we were alone in the world.
Did she take her medication? How did her symptoms play out as she navigated the role of being a mother?
I would say that my mother took her medication sporadically. She would do things like cut her pills into halves or even quarters. I can’t say I blamed her for not wanting to take her medication. They seemed to either knock her out, and make her sleep all day or they gave her dry mouth or they made her nervous and jumpy. I remember her taking medication such as Haldol at that time. My mother would have auditory and visual hallucinations. She would talk to my dead father or other people she thought she was seeing. Sometimes she would grow frightened and even violent when her stress level was high. She made every attempt to take care of me and be a good parent but the symptoms of her mental illness were too much. My mother would sleep whole days, other days she would smoke and drink coffee all day. Then there were times when she had things together and could even go to school and hold down a job. But the good times would never last and ultimately she would cycle into having a breakdown and have to be hospitalized.
You might have had to take on early in your life the role of caregiver. It couldn’t have been easy. Give our community members suggestions about coping techniques or practical matters they should develop or attend to when a loved one has schizophrenia.
This is a difficult question to answer because I was so young and in this role. It is a very different situation being a child or teen living with a schizophrenic parent than it is for an adult who is taking care of their loved one with mental illness. I think the number one thing I needed to think about from my perspective of being a child in this situation is what to do in case of a crisis or emergency. You have to know which people you can depend upon and within the system. I developed a keen awareness of what could trigger my mother to begin having a psychotic episode. You also learn that confrontation usually will escalate a bad situation and that remaining calm and grounded is best when your loved one appears out of control.
Did anyone outside the immediate family know about your mother’s illness? How was this information managed? Did your friends know? Did neighbors know? How did that impact things?
No, nobody really knew. I am sure some people suspected but they didn’t know what to do or how to respond. We lived in the inner city for some time and my mother had an altercation with some of the neighbor’s children. She got angry one day and swore at them. This didn’t sit well with our neighbors and the entire family came to confront my mother and then proceeded to physically beat her. It was one of the traumatic moments in my life where I feared for our safety due to my mother’s mental illness. I was always afraid to tell others for fear that they would take my mother away or separate us. Despite my mother’s mental illness I wanted to stay with her. In my teen years I would tell some of my teachers in high school and then college.
What advice can you give to a family member like a husband or wife or son or daughter whose significant other or parent is paranoid and believes their delusions are true and can’t be convinced otherwise?
The one thing that I found with my mother is that direct confrontation about her delusions escalated her fear and stress levels. I also think that at some core level, the paranoia or delusion has some basis in reality for the person experiencing it. Let me explain. If my mother were to tell me that aliens were on the roof and about to invade our home, of course we know there were no aliens. But the fear my mother felt about some impending danger was very real. I think it is best to respond to the feelings underlying the delusions instead of declaring the content of what is said as an untruth.
People write in all the time worried about having kids when there is a history of schizophrenia in their family. They might not have SZ themselves and wonder if it can be passed on to their kids. My brother decided to have kids. You decided to have a kid too. Could you comment on this?
I guess I mainly worried about myself growing up. I worried that I would develop schizophrenia at some point. That did not happen but I do suffer from depression. To tell you the truth, I was not very worried about genetics when I had my own children. I just knew that no matter what, I wanted to love a child. It just so happens, however, that my youngest son has autism. I am not sure what the genetic link may be but perhaps there is some association there. I do find it interesting that my mother has schizophrenia, my son has autism, and I have Multiple Sclerosis. These are all neurological disorders and I wonder if there is something linking all three disorders.
How is your mother doing now?
She is fairly stable as much as she can be and living in a group home with loving caretakers. Sometimes I mourn for my mother in the life she could have had if she had more supports in her younger days and also better medications. The choices for treatment were pretty slim in those days. My mother will soon be 76 years old so she has battled mental illness for many decades.
Was there anything positive you feel you could take from the experience of having a parent with SZ?
You know, there are so many things that I do feel are positive aspects of this experience. Was it traumatic, frightening, and heartbreaking? Yes. It was all these things and then some. But there was joy, gratitude, and love too. I would not be who I am today without having had those early experiences. My mother was seriously mentally ill but I never for one minute doubted that she loved me. She did the very best she could have despite her challenges. Through my life with my mother I learned about survival, how to hold onto hope, and how to love someone unconditionally. I would say those are some pretty good life lessons.
What hope can you give young people who are going through this kind of experience with their mother or father?
I would tell them that no matter how bleak things look at the moment, to hold on, because your survival is critical. I promise that when you come through this, you will be one amazing person. Find someone to trust who you can talk to about things. When I was young I found hope in books about people who overcame life challenges. I turned to writing to explore my feelings. School became my refuge and a way to keep my mind occupied with goals and dreams of a better future. Remember that you may not ever be able to “save” your mother or father. But you can love them and accept that they are trying to live the best way they can.
It can appear that the loved one is acting out and so it can be hard to differentiate what’s a symptom and what’s manipulation on their part. Could you talk about this?
I am not sure how to respond to this question. In my mother’s case, I never felt like she was manipulative. She would simply fade from reality into her delusions. There were times when I felt that she could have helped herself more and she seemed to sabotage her own success. For example, she went to secretarial school but then quit right before finishing her last class, saying she didn’t have time for school because she needed to help me with my homework. I was a straight “A” student who did not require help so she used this as an excuse to not finish. I think she was afraid of getting a job and all the expectations that would entail. But even this, I would not consider manipulation as much as reacting out of fear.
What can caregivers do to keep from getting burnt out?
I think it is critical to find support and especially from others who have been through a similar situation. This is one thing I had wished I had found as a teen and young adult. In the days before the Internet I thought that I was the only one to go through this. I knew nobody else who had a parent with schizophrenia. I think it is also important to have some sort of outlet to get away from the responsibilities and demands of being a caregiver. Get out of the house. Do something special just for you. You will need these times to regroup and recharge your batteries. Also find a way to express yourself through some creative outlet such as writing, art, music, drama, or dance. You will need a way to get out your feelings. Talking to a therapist or counselor can be very beneficial. This experience can be physically and emotionally draining. In order to stay in the ring you will need help. Do not be afraid to get assistance from the system as far as getting mental health services for your loved one, respite, or even housing. Do not feel guilty if you are not able to be your loved one’s caregiver forever. There will come a time when you will have to make that choice of choosing an alternate living situation for your child or parent. In some cases it will be necessary for your survival and theirs.
Any other insight you could give would be appreciated. Thank you for taking the time to drop by.
Thank you for giving me this opportunity to share and to give back. I greatly admire all that you do here in helping others who have mental illness and their family. I hope that by sharing my experience that I can give a little hope to anybody out there who may be dealing with a similar situation.
In addition, here are some stories I have posted to MyDepressionConnection about my experience living with my mother.
Mental Health Activist