Neha Bhattacharya

Managing a loved one’s severe and persistent mental illness comes with a plethora of responsibilities and challenges. There are good days and the not so good days, and then there are ones that test your patience… and that is okay. It is a tumultuous journey but a worthy one and Edith (name changed for anonymity) can attest to that. Now 22 years into supporting and caring for her son who lives with schizophrenia, Edith has seen it all – the good, the bad, and the ugly. BCSS reached out to her earlier this summer to hear her story.  Edith’s journey living with and caring for her son’s mental illness has been a bumpy one, for sure, but she’s full of hope.  

In this interview, Edith talks about her son and how it all began, how he’s doing now, and how she copes with all that life throws her way. Her journey and her spirit serves as an inspiration to us all. She truly lives what she preaches: you never give up.  

Could you share a little about your son’s journey with his illness? In retrospect, my son was extremely shy and in grade four, we began working with his school to support his learning disabilities. However, by junior high, he dropped out and started wandering around “having adventures”.  

When he was 17, he was in a skateboarding accident that broke two of his leg bones in three complete breaks. It took quite a long time for him to heal –six months–and during that time, he was mainly in bed… alone. I would leave for work at 5:30 AM and often did not get back until 11:30 PM. It was during this period when the symptoms of psychosis became noticeable. Looking back, it seems that the negative symptoms were there already. But poor bug, his tired mom (me) rode him fiercely to either get a job or to go to school. 

He was hardly eating. He was throwing out lots of food and shampoos saying they were hurting us.  

But the big indicator was the night I came home to find that he had broken down the outside walls of his bedroom. He broke clean through the sheet rock and kept going until he reached the wooden walls that were on the outside of our building. He told me did this “because there is something in there that is hurting us”. 

After this incident, he was hospitalized and diagnosed with psychosis NOS. The NOS diagnostic category (Not Otherwise Specified) is often used to describe a patient’s psychotic states early in the diagnostic process. When he turned 18, the diagnoses became schizophrenia.  

My son was terrified of the psychotic episodes he experienced, and so he took the medications and over all coped well with managing the disease. Brave lad. He had a job that he was able to hold for three years. He attended Community College and earned transferable units so that he achieve his dream of attending UC Berkeley. 

In a span of four years, my dear husband passed away and my son’s condition worsened. I ended up retiring early to support both my husband and my son. This was a time of tremendous crisis for our family.  

My husband, his stepfather, developed Alzheimer’s and eventually passed away. My son is a very kind soul and he did everything he could to help his stepfather. At the time, my son lived downstairs, so he would come up regularly to check to see if his stepfather was okay and help him. However, the medication my son was taking to manage his symptoms of schizophrenia became less and less effective. And during these first three years, my son was picked up and taken to the hospital for treatment approximately 24 times. But because of the lack of psyc beds, he would be released while still in psychosis. 

During this period, none of the medications he was prescribed were effective. And this is when he stopped allowing me to help him with his medications. This was also when he began to take his medications erratically. When he would miss doses, he would take extras “to make up for it”.  

For the last 17 years, he’s been taking Zyprexa, which is a medication that has been effective for him. But this past June, he stopped taking his medications completely and is now experiencing symptoms of withdrawal. 

How did you feel when you finally found out that your loved one had schizophrenia? 

In the beginning, I did not understand it — I was deeply worried for my dear son. I was alone at that time, and for some years thereafter until I met my son’s stepfather – a wonderful dad and a kind soul. I did not think it was a mistaken diagnosis or that it could’ve been something else, as his symptoms were very clear. 

My sweet son’s illness has worsened over the last four years. My son now gets  really angry – but who would not? After so many years of  battling this disease —  and this display of anger sometimes  scares and angers the people around him. 

It has taken me about 22 years to acknowledge that I can’t make it better, I can only keep up the good and necessary work.

What have been some of the most challenging things so far?  

There is definitely a lack of health care services for people like my son who have this illness, and a lack of funding for research into schizophrenia and other related disorders. There isn’t enough help available and it is also not affordable. I live in the US, and even with two health insurances we are unable to get my son treatments beyond the help provided by his psychiatrist. 

Additionally, there seems to be an ever decreasing amount of services for vulnerable people with severe mental illness.  

There’s need for more hospital beds, more follow up and continued ongoing treatment along with safe, kind, clean caring live in homes that medical and mental health treatment/recovery work/ and rehabilitation.

Were it not for BCSS’s kindness, educational resources, and support we would not have managed. It is sometimes too hard to keep on with. But knowing that the gentle, kind, and wisdom filled support will be there a couple of times a month makes all the difference in the world. I don’t know how I can express the fullness that it is. 

What do you do to cope with the pressure that the care system puts on the caregiver? How do you take care of yourself 

(Chortles!) Do the best I can… with what I’ve got… when I’ve got it!  

Since I cannot be away from my son for too long because of the current state of his illness, I will answer accordingly… 

These days, to take care of myself, I read and knit. And then attend the wonderful BCSS family support group meetings. Among other attributes, it is through these meetings,  where I feel normal. One can get kind of lost living in Schizophrenia-Landia you know. It is extremely isolating. 

What are you most grateful for in the journey? 

I have learned a lot. I think that I have become a kinder, and more accepting person who is now living a lot more in the “here and now”.  

I feel tremendous gratitude for the good patches and good things in general. And I have learned to see and celebrate them. With each passing day, I am trying to find out what is really important in this life and this world of ours, and that is good.

How is your son doing now? 

He’s a work in progress! He is not doing well at the moment. He’s talking very loudly, has bizarre body movements and contortions, has angry outbursts, and is stepping in front of moving cars. Our neighbours have even made numerous complaints to the police. So, we may be getting help soon.   

How did you find BCSS and how necessary do you think BCSS’ programs and services are?  

Years and years ago, I was fervently searching the web for information on schizophrenia and I came across the Schizophrenia Society of Canada’s incredible website. It had chock full of information, related news articles, and book reviews. It was amazing! 

Eventually I made my way to finding BCSS. I was so lucky to be able to connect with this phenomenal group. Thank you all for all that you do – I do not have enough words to express it. 

What would you share and tell families as they are starting on their journeys supporting loved ones living with severe and persistent mental illness? 

Never give up! When you are unable to feel hopeful, hope for hope.

 Carry on and seek help and support for yourself and your loved ones. It took me some time –20 years — to figure it out – I got there and you will too!