I would never have believed that I would get involved with a mental health support group - my male ego, my life of total independence from support, (I was always in control) plus the 'stigma' of mental problems were formidable barriers to this concept.
However, when I saw my child in the grip of psychosis, the barriers disappeared. The search for knowledge took over, it became a case of total immersion in the subject matter. All possible arena's where the subject of psychosis was involved became fair game.
I found there is a wealth of material available. Today the internet has opened up the world. There are many, many web sites with awesome information. There are books and video's, there are lectures and courses. Of course you must exercise caution and common sense when researching information on the internet as there is also misleading information on the web. I always recommend obtaining a list of web resources from your hospital mental health department, physician or other trusted source.
There are also support groups. The Fraser South, Early Psychosis Intervention Program, Parents Support Group, was one such group which was invaluable to me. This group was developed for parents of children suffering their first psychotic break, and boy, was this group ever needed by those involved. There is nothing so devastating as having mental illness affect your child when you have no understanding of the illness. Another local group which continues to be invaluable is the BCSS Surrey/Delta support group.I have found that Psychosis not only challenges reality for the individuals with the illness, but also severely challenges parents to maintain a grip on their own lives too.
The lesson learned was how useless ego and pride are in a battle against mental illness and how strength can be synergized from meetings of like-minded people. There is tremendous comfort and understanding being able to share your horrors with non-judgmental people who have also "been there" and can share things that have worked for them.
I learned to let my ego and pride go.
It seemed we were fighting a monster that had unlimited endurance and many strategies. We fought back with our own endurance and strategies - Changing medications, trying different coping strategies like listening to music or taking rides in the car - anything to try and over-ride the voices. When alone and unoccupied it was very tough for my daughter to overcome the symptoms that she was experiencing. We spent a lot of time doing simple things together like playing hoops in the school yard, going bowling and playing tennis. We also took some trips together to change the scenery and replace boring daily routines, with interesting things that we could do together.
As we reduced the number of crises, life became better. However, the underlying illness remained very debilitating. With regular medication and support, the Schizophrenia (and psychotic episodes) stabilized but new problems arose. Anxiety and Obsessive Compulsive Disorder became the enemy. As we continue to fight I reflect upon a lesson I learned early in the process. One that has helped me tremendously.
The lesson I learned early was that my Daughter is not the Illness. She is still the same sweet daughter that was always there, it is the illness that is causing her acute distress. My heart breaks when I see her struggling to cope, and she deserves for me to support her through this.
I Learned that the illness is only a part of the person - not the whole person.
Following on from Lesson 2, the third lesson was just as important. Patience, Patience, Patience. One day at a time, one week at a time caring and learning to put frustration on hold.
I found that nothing happened fast. There were no magic bullets or miraculous cures. Day followed day with uncertainty as to what the new day would bring. Likewise week followed week. Each day though we learned a little more, we learned not just from the professionals but also from each other. The realization came that this was a long term issue and we had to be patient.
It felt that we were on a roller coaster at times. Periods of crises where we were both tried to the extreme, followed by periods of relative calm. Initially it was easy to be fooled by the periods of calm thinking that the illness had been beaten, only to have another period of crises come along. Again, as I said earlier, I learned that 'any day with out a crises was a good day' which helped me to be patient and live in the now. Not in the past or the future, but in the present day.
Disciplining myself to have patience was a valuable lesson to learn.
The next lesson was that I had to look after myself. If I was not in good emotional and mental shape then I could not help my daughter.
Having a full time job and providing for my family was stressful already, and then having mental illness throw everything into chaos became overwhelming. I recognized that I was becoming totally stressed out. I was angry, frustrated, and my life was falling apart. I became inefficient, forgetful and very negative. I wanted to run away.
I don't recall if there was a specific moment or event that brought this recognition to mind, but I knew I had to make changes. I knew that I had to have some time for me. I could not run away. Rather I had to arrange periods when I could relax, be alone and recharge my mental and emotional batteries.
I started two new activities that could provide me with respite. I bought a Kayak and I also started playing golf regularly. The Kayak allowed me to go paddling totally alone for three or four hours a week. This provided awesome stress relief. I would paddle relaxed and serene without a care in the world and all my troubles forgotten. The golf once a week with three friends from work also provided four hours of stress free time (I am not a competitive golfer so there was more fun than stress). I credit these two activities in helping me put my life back in order.
The awareness that I can provide the best support when I am emotionally and mentally in good shape was an important lesson to learn.
It was a while before I learned lesson 5 but it is one of the most powerful.
Helping others who are going through the devastation of having a loved one with a mental illness provides not only comfort to them, but also gives you comfort and a sense of being in control of this illness. I have actually learned far more by helping others than I did on my own.
Just sharing your story at a support meeting can help other people by letting them know they are not alone, and that they can expect empathy and non judgmental friendship. Strategies that have worked for you and knowledge about how you have navigated the system can be very helpful to someone new to this illness. You can help with information sessions or events in your local community. In time you will be able to facilitate support meetings or even teach courses like "Strengthening Families Together" from the Schizophrenia society. You will be able to learn to become a Family Peer Support Volunteer.
All of these activities not only help educate others about mental illness but also increase awareness and therefor support for current and future services. Partly because of Stigma, donations and funding for mental illness research and services lag behind the less common but more "acceptable" illnesses. By helping others understand and realize the impact and also the commonness of mental illness, you will be helping to remove the stigma for future individuals who are affected by this illness.
Help others, it will help you and your loved one.