Thursday, August 23, 2012

A Break From Reality

I never thought that my blog would gain so much popularity. I am very excited to be covering a wide variety of topics, especially issues that engage the human spirit, just like the one you will read today.

Borderline Personality Disorder is a serious mental illness marked by severe instability in mood, relationships, and behaviour. University of Washington psychologist, Marsha Linehan is one of the world’s leading experts on the subject and states that: “Borderline individuals are the psychological equivalent of third-degree-burn patients. They simply have, so to speak, no emotional skin. Even the slightest touch or movement can create immense suffering.”

The mere thought of this quote is heart-breaking, but how would you react, if your child actually felt like this?

Below you will meet K, a single mother of 4 from Windsor, Ontario, who continues to watch her daughter suffer through this often misunderstood illness. To preserve the dignity and respect of this family, my interview will not disclose their names, instead I will use: K (mother) and M (daughter).

Tell me about your daughter in her early stages of life. Did she exhibit any unusual behaviours at all, before reaching her teenage years that caused you concern?

M was my second daughter and she did exhibit different traits from her older sister, even as a baby. She couldn’t have her foods touch, which I thought was just her personality. However, as she entered her toddler stages, she would throw herself to the floor and have anger outbursts. It was also recognized that she had an inability to share with other children at school. When I would take her to day-care, she was an angel, but as soon as I picked her up and walked out the door, she would start with temper tantrums and ask for things she knew I’d say no to. At the time, I thought nothing of it and believed what people and her pediatrician told me; it was just a stage and it was the typical terrible 2’s and 3’s.

Her behaviour went on and by the time she was 6 and in kindergarten, things were getting progressively worse. She was hurting herself and her younger sister. The tantrums becoming worse too, so I took her to see a doctor here in Windsor and he had me fill out questionnaires, along with all her teachers. After this, M was diagnosed with ODD (Oppositional Defiant Disorder). I was told there was no medicine for this. I waited for 3 months for a psychiatrist from London to come and see her. When he came, he met with her for 45 minutes and then told me that there was nothing wrong and I should take her to church. I couldn’t believe it! I felt so disheartened and helpless because I knew there was something wrong with M, but I didn’t know where to turn for help.

This continued on for a few more years and by the time M was 9, she made her first visit to a mental health treatment facility for her outbursts. Once again, I was told she was fine, but by this time, I had found out through her grandmother that her father was diagnosed with BPD and narcissistic sociopathic behaviours. I don’t know why it took so long to find this out and it is something I will never understand. From what I knew researching the disorder, behavioural modification was the only option, before the age of 13. However, nothing was done for M because 3 different doctors stated nothing was wrong with her and I was in fact to blame for M’s behaviour.

I realize this may bring back some painful memories, but what was the pivotal moment when you realized that she needed immediate help?

I knew M needed help when I caught her slamming her arm in the door at the age of 6. Also, another memory that sticks in my mind was when I realized that certain things happening to her younger sister was actually being caused by M. She even kept a diary where she wrote about wanting certain people in the family dead and talked about killing them.

Can you walk me through a typical day of what it is like being a mother of a teenager with BPD. Are you able to work, does she attend school, or does your daughter need 24 hour care?

M has not lived at home for 2 years, as she has been in voluntary care and in-treatment placements. The final straw for me was 2 years ago, as the self harming and head-banging wouldn’t stop, along with many trips to emergency, and no changes for the better. I took her to counselling, plus to see a psychiatrist for such a long time, but her good days lasted for a matter of a day or two and then we’d be right back onto the rollercoaster ride of hell. I could not satisfy her, no matter what I did. She was and still is like a bottomless pit of need, attention and emotion that cannot be filled for more than 5 minutes. Sadly, this is a symptom of the illness. The mood swings are so severe that in an hour, she can go from happy to mad, back to sad and then happy again, literally. She self harms in many ways including: cutting, head banging, refusing to eat or drink, swallowing items and attempting suicide.

M requires one-on-one staffing at all times, even when sleep hours are in effect. I used to work, but in the last 5 months, I had to quit my job. It may sound strange since she doesn’t even live at home, but between all the serious incidents (82 of them just last month) going back and forth to London, Hamilton, Kitchener, as well as meetings, lawyers and court, I am just too drained. I missed so much time unexpectedly that my business was just going to the dogs. Now, since M’s been released from the hospital and transferred back to Windsor into a foster home, she is partaking in DBT (Dialectical Behaviour Therapy) with only one psychologist offering it here in Windsor. Working with a psychiatrist, and a DBT group gives me some hope that we can get somewhere positive with M. It feels like hope against hope for the most part though. M requires so much care, time and attention that it’s nearly impossible to fulfill it. She is not stable enough to be at home and poses a safety danger to herself and her other siblings because of the erratic mood swings and self harming behaviours. She does attend school, she’s been a straight “A” student, and is highly intelligent, which is part of the problem to an extent. Her relationships though with her peers and teachers are not healthy. As M has no sense of boundaries, her illness does not allow her to understand or set any of them. When someone else sets the boundaries, she thinks it is rejection. She has a black and white thought process; either it’s all good or all bad, there is no in between. If she likes you, it’s great, but it’s also problematic too because M becomes obsessive with the person, whether it’s a peer or a teacher. From her perception, what she sees, hears, and feels are not the “norm.” As an example, if you tell her the sky is blue, she will tell you, “no it’s not, it’s purple and that’s that!” M only hears what she wants and it is not because she can’t understand, it’s just not what she actually wants to hear.

It’s not uncommon for family members to become psychologically distressed when they see such suffering of a loved one and cannot find adequate help on complex conditions. To aid in healing, some may turn to prayer/faith, spiritual meditation, etc. What techniques have you used? What has helped the most?

Yes, the family has been under extreme distress. Her sisters went to counselling and we are looking to start up again, including myself. The problem is that my visits are limited to only 4 sessions. I finally found a reasonably priced psychologist, but since quitting work, I have been unable to pay him. The blessing is that he still sees me (thank the lord, I would not survive without him!). My mom and I went to the NAMI program at CCH, which is run by other parents of adult children with mental illnesses. My main issue was that no one really had a child suffering with the same illness or even in M’s age range. It was informative to learn about the stigma’s that often come with mental illness, the lack of support and understanding in our community, as well as around the world. They shared the different stages that you will go through, and I felt some comfort knowing that we’re not alone with all the others families there. Once the program ended though, that feeling of support was over and the relationships that are built within the group are gone. I know they tried, but the group was not as specific as it needed to be, and the amount of teaching was overwhelming, especially in such a short period of time.

Other than this group, I haven’t been able to find any help on a long-term basis. The quality of care simply isn’t here in Windsor, and resources seem to be fading quickly. I do not understand why there is such a lack of support here for adults and children at all. What is even more disheartening are the turnover rates; Hotel Dieu psychiatry is 2 weeks and then you leave, while other places like Maryvale, you have a maximum of 2 days.

It seems like from the array of specialists in the mental health realm that you have seen, there is a consensus that your daughter has Borderline Personality Disorder. When you were first told, what was your reaction and what was the response from your daughter?

I’ve known for a long time, and just this last year, having BPD as a serious possibility has truly been stressful and painful. The confirmation of M’s diagnosis and being told that we no longer need to wait until she’s 18 from psychiatrists, psychologists and the team at McMaster, has been bitter sweet. I’m glad to finally have a proper and accurate diagnosis, as it lets me focus on what to deal with and what to be prepared for (as prepared as you can be with this illness). There is no cure and medication will not help either. With only one person in the community who is trained in DBT therapy, as M gets older, it can only get worse. As a mother, this is terrifying.

For M, I always felt it was very important to tell her what was going on because how can you begin to heal or deal with things, if you don’t know what is happening to you? Even though she has been told, M is in denial and does not believe she has this illness at all. So for her, it hasn’t made a difference, nor has it provided relief or help. From what I do understand, I don’t know that she will at anytime realize what is going on. The longer it takes to come to any realization, I think the more harm it will cause her. So like I said, it is a very, very bitter pill to swallow, but it helps knowing at least what I am dealing with.

In our conversation, you mentioned that you’d like to start a Windsor support group. I love the fact that you are advocating so strongly for your daughter and those who are caregivers for people with BPD. Can you tell me about your vision and what you hope will come out of this?

My vision for the long-term is to have a stable place for families to come to, so they can learn about BPD. I would like it to be an informative, supportive and safe haven, especially with a 24hr support line for caregivers and parents. I would like to run an on-going support group for not only the parents and caregivers, but for the sufferers, as well. There would be respite services available for the caregivers, along with educational, therapeutic, and supportive camps for the children, adults and the caregivers. I would eventually like to get together a team of 10 people who are desperately needed, in order to provide DBT therapy, for both the sufferers and the caregivers. It is the only known thing right now to work and something must be done because as I stated above, having only one person who can do this is not enough. A local facility needs to be established here. We cannot just settle and travel 2 hours or more for help. It is not a realistic option. A parent shouldn’t have to sign their child away and into the care of society because they don’t have the money, resources, and support that are desperately needed to take care of their sick child; it’s just plain wrong as the day is long.

One doctor in the whole city is clearly not enough. She cannot possibly help everyone by herself and there needs to be funding by OHIP because psychologists are not recognized with OHIP at all. Without this coverage, therapy is extremely expensive at $160/hour. A person (depending on what stage they are in) needs this specific therapy for many years and must go once a week. It is not practical or affordable, especially for someone like me, who is a single mother of 4 and without a good paying job. Some do not have a job at all or actually do have a job, but lack any coverage. This illness cannot be ignored and reduced to whoever has money will get the treatment and help. It’s ludicrous, especially for the children; they are our future. How can we close our eyes to these mental illnesses and just give them partial help? We are setting them up for failure and when we are old, they will be the ones that we will rely upon to take care of us. Our future and generations down the road are truly at stake. People are worried about global warming, more than they are about the human race. We’re facing a real crisis. We’re not only watching it, we’re helping it happen, by doing nothing. By continuing to be ignorant, ignoring, stigmatizing, and being scared will not get us anywhere, and our human race will disappear long before the earth will, if we keep this up.

The parents and caregivers are in serious and desperate need of support and help. I am almost positive that there are many more who are too ashamed to even admit they have a ill family member suffering from mental illness. Most are too scared to ask for help or to even fight publicly because so many still do not understand mental illness, while others stick their noses in the air, without realizing this mental illness is just like Cancer, Diabetes, etc… It’s scary, debilitating and it affects everyone who loves them. In some cases, it is terminal and that’s the bottom line. Instead of being scared and ignorant, we need to start doing something to change these perceptions and really make an attempt to fix the problem.

Caregivers and parents are losing this battle and losing it quickly because what they need is not available. Now not only do we have their loved ones in serious need, but as a parent or caregiver developing depression, exhaustion, anxiety, and many other conditions is on the rise because we are suppose to be robots. We are set up in a system where we’re just supposed to deal with it and suffer alone. You just can’t do it. I don’t care who you are, it’s impossible. We had a DBT team here 2 years ago and you know what, they left. Why? Well the DBT team, burnt out. Yup, that’s right, the therapist burnt out.. Even the therapists need therapy and support, as this condition is draining. So how are we really supposed to function by ourselves, without training, guidance and more importantly, no support?

Sufferers who have this illness can go from 0 to 60 in 5 seconds. They can also go through literally 5 different emotions in an hour, out of nowhere. You don’t even know how it happened, where it’s coming from, and now you have the insurmountable task of figuring out how to dissolve the situation before it goes too far. How do you solve a problem, if you don’t know the equation? Sometimes they will also come looking for trouble, and trying to de-escalate the situation and not engage with them can cause the situation to get even worse.

For the average person, this is exhausting, as you are experiencing their emotional rollercoaster ride right along with them, plus your own feelings and emotions. It is like you are constantly walking on eggshells. For the one who suffers from BPD, this is something they almost thrive from, so it is not as hard on them. I’m not saying it isn’t hard, but it is not the same as what the parent is going through because the parent or caregiver is dealing with a rational, logic mind, whereas the sufferer is not. You certainly cannot try to enforce rules, say no, or try to problem solve because it is never good enough. You can give 50 positives, 50 solutions and get told 100 negatives and 100 reasons why it won’t work. These are some of the serious issues you are met with trying to care for someone suffering with this illness. It is very complicated and scary. There is just no appeasing this illness. So this is just a taste of what goes on, but I hope you understand the dire need of constant support for the parents and caregivers.

In the short-term an educational and informative support group will suffice. It’s a short-term fix for a long term problem, but I know it will help. I just want to offer everything I’ve needed. It’s so important, it really is.

With many stones still left unturned, K continues to advocate for her daughter and others who may be in a similar situation. The need for drastic changes made in the mental health sector is at an all-time high, especially for those who suffer with Borderline Personality Disorder.

K welcomes any support that is out there. After all, Lao Tzu was right; A journey of a thousand miles begins with a single step.