Do you have a sibling with a severe or untreated mental illness? Do you know someone who does?Today we’re going to listen to the story of Sandra Laing, the younger sister of a woman who suffered from a horrible history and severe mental illness. She currently lives in the UK and shares her story and educates us about her personal experience with what some might call “trauma.”
Most families experience great stress, confusion, and uncertainty when a family member experiences a mental illness. Even families with children who have developmental disabilities (e.g., autism, sensory processing disorders, or learning disorders) find themselves overwhelmed with a diagnosis. Could you please explain the beginning of your journey and how you accepted the diagnosis?
- My sister was 10 when she was kidnapped on her way to the shops for some sweets. The police were informed after a couple of hours had passed. It wasn’t like her to just disappear like that. The police found her bike. It had been tossed over a hedge but, no sign of her. 10 days later a fisherman reported spotting a little girl underneath a bridge close to our home, he said she was naked and freezing. It was my sister. She said that three men had grabbed her into a car, taken her somewhere where they held her and repeatedly assaulted her. I was only 8 at the time and didn’t really understand what had happened, I thought she was just acting a bit weird. I remember her being admitted to hospital and told that she was having a nervous breakdown. Each time we went to visit she seemed to be getting worse. No one knew what to do with her. It wasn’t till much later that a different doctor said he may be able to help. My parents said they would be happy to let him try. By the time he took over her care she had been in a secure unit for about 9 years. It was then she was diagnosed as manic depressive, now known as bipolar When she first went missing I was only 8 so by the time we got her diagnosis it was no big surprise for me.
What was the most difficult part of this life change for you and your family?
- For me the most difficult part of the change was, not understanding what had happened. No one would speak about it. All I really remember about that time was being looked after by other family members and friends while my parents just sat around crying. After that my sister went to a school for people with special needs and we just accepted that, that was the way things were going to be.
Do you think siblings process a mental illness of a family member differently than the parent(s)? Do you think it’s harder to accept?
- I found that after the diagnosis things got better for us all. My sister was put onto priadel and methylene blue and the change in her was amazing. Within weeks she was back home with us. she was different to what she had been before all of this happened, but, we got her back home and she was doing ok. That was the most important thing at the time for me anyway. I think my parents found it much harder. They never really spoke to us about it. It was just something that became part of our lives.
Did you see changes within and outside your family due to this diagnosis?
- Our family did change after that. I can’t say exactly how it changed but it did. Things were just different. Our youngest sister seemed to have the most difficult time dealing with it all. It was like she was embarrassed by the way our sister was. She refused to go anywhere with her. It was always me who took her out anywhere. The stress it put on our parents was immense. Where is she, is she ok, has something happened. That worry never left them and after she went missing for a second time, it just seemed to reinforce that worry. Some of our extended family began saying things like, she never got that form our side of the family, there’s nothing wrong with any of us. Relationships definitely changed.
How did you learn about the illness? Did you do your own research?
- I was 17 when the diagnosis was finally made. At that time there was no internet so what I learned about the illness I got from my parents and from books.
What was the hardest part about working with the system for your family?
- The hardest part about working with the system was trying to make them see that, we knew her better than they did. We always got the, “we are the professionals” stand from everyone involved in her care. They always thought they knew better. Prescribing “prn” or as required medication that never worked for her was one of the main problems. No one listened to us, the people who knew her and lived with her every day.
Did you feel supported by the system or did you feel services were all about “business only?”
- I have never felt supported by the system. It felt like we were treated like idiots who did not have a clue. We were constantly at loggerheads with them, some of the things they subjected my sister to were horrendous. This continued until her death.
Were resources offered to you or did you have to ask questions to find your way?
- We were offered various services for her like. A free bus pass and a taxi card, various groups that she could attend, residential care and respite. That was all really, for the most part as long as she was ok, we were left to it.
How about your overall outlook on life, how has that changed?
- It has made me realize how fortunate I am and it has made me determined to improve things for the other people like my sister. That is why I am campaigning for the laws to be changed. Each and every person deserves respect, dignity and true freedom of choice and I won’t be happy until I see that everyone is getting that.
The mental health system slights families in a lot of ways by not allowing the most important family members access to healthcare records or treatment information. For many families, the parents or guardians are the only people who can access information about treatment. As a sister, do you feel you were a valued piece of the puzzle or do you feel you were treated with a long handle spoon?
- After the death of our parents I became next of kin. Not once was I listened to. Every time they decided to put her on something different, I would tell them what would happen, the severe and sometimes disturbing side effects she would suffer and the effects it would have on her physical health. Each time I was proved right but it made no difference they kept doing what they wanted anyway. She was subjected to ECT twice and whole array of the latest drugs on the market. When she died she was on 7 antipsychotics and two sleeping tablets that I know of. This is not all she was on but, they would not give me the full list.
Did you know that in some states a child who turns 14 or 16 can make treatment decisions and reject treatment? How do you feel about this?
- I don’t live in the states but I feel that 14 or 16 is too young. At that age I don’t believe that you could act with full informed knowledge and because of the danger some of the medication causes informed consent is essential.
Provide us with three things you think needs to change about the mental health system?
- Over medication, prolonged and unnecessary incarceration and the way that families are assumed not to know what would suit the patient best needs to change. My sister was given things like art and dance lessons. She detested both and she would just refuse to go. Offer her something she did like and she would be up and out like a shot. Stimulation and not medication often worked best for my sister but that was rarely what she got.
In a perfect world, mental healthcare, medication, treatment, and services would all be free. What is one essential thing you wish were free for your family?
- As I live in the UK all of our services are free. We are lucky to have this and I wish it could be the same for everyone.
Many families lack knowledge about the system because no one has time to educate the public. One of my goals is to provide families with knowledge. How would you describe your knowledge of the mental health system? Do you feel you are well-informed or do you feel you don’t know as much as you’d like?
- I feel that I have excellent knowledge of the system but not because I was informed about it but because I made a point of learning all I could. No one told me anything. In fact I was blatantly lied to on several occasions.
What are three things you think parents, family members, caregivers, and even grandparents need from the mental health system to cope with a diagnosis?
- Information, support and mutual trust are essential. Family members are often left very much in the dark. This puts more of a strain on them. Every decision should involve the family especially if that is what the patient says they want but all too often I hear that this is not the case.
Thank you Sandra for sharing your story with us. You mentioned a lot of great information but two things that stuck out to me was:
- Unnecessary incarceration of the mentally ill
- Learning all you could learn about mental health
It is important that you understand where you stand in the mental health system, how some “professionals” perceive you, and what your rights are. Sadly, a lot of families are uninformed about the mental health system and their rights. Every turn is a shocker. I applaud you for learning all you can.
As Sandra’s story reveals, severe mental illness affects the entire family, not just the person suffering. I encourage all siblings to learn as much as they can about the mental health system and mental illness in general.
Please feel free to add your thoughts. Keep in mind that all week we will have similar stories.
I wish you all the best
Biography: Sandra Laing:
Sandra comes from a family of five, “mum, Dad, Carole, me, and Valerie, the youngest.” She explains during our interview that “we were a happy family, mum was an office manager and Dad was an entertainer. Our house was always filled with music and song.” They were a typical, middle class family. After the horrific events leading up to her sister’s death, Sandra realized that perhaps she needed to do something to change things. She expresses that:
“I thought that things would go back to the way they had been before but, that wasn’t to be. Carole was really quiet. My usually outgoing, happy big sister who always looked out for me had changed. She had to be coaxed out of her bedroom and she hardly spoke at all.” A few months after this we moved back to Dundee. Back in Dundee, Carole did seem to improve and the three of us were enrolled at our new primary school. Things were ok. For a while, Mum and Dad were back at work and it looked like things were finally going back to the way they had been before.”
Having noticed a series of emotional and behavioral changes in her sister, she came to realize that her outgoing sister would never return. In a sense, Sandra became her caretaker. After repeated hospital stays, medications, struggles, and confusion, Sandra lost her sister. She states that the autopsy report revealed her death was due to “sepsis driven pancytopenia.”
“No one should have to go through being treated like that. No one should be allowed to die like that. I believe that Carole deserves justice, so I am campaigning for changes to the mental health laws. If you feel the same, please sign the petition. We need your support. Thank you.”
Photo Credit 2: Will Thomas