Confessions From a Caregiver

dawid-zawila-279998-unsplashI am a mother of three, two of whom have mental illnesses. My role as caregiver was ‘upgraded’ when my eldest was diagnosed with bipolar at the age of fifteen, and four years later, my youngest son with the same. Nothing can prepare you for what follows. It felt as though our family lost our anonymity to life in a fish bowl. We were inundated with professional and community supports, and our home became a revolving door. I went from being a mother to often playing the role of a nurse, therapist, pharmacist, crisis worker, and gatekeeper depending on the day or hour.

From the time of their diagnoses to now, everything’s changed, for better or worse. On a practical level, check-ins with psychiatrists, counsellors and appointments for blood work has become part of our regular routine. This disrupts everyone’s schedule and requires sacrifice from myself and my kids, not to mention their schools and employers- as well as my own. On an emotional level, their disorders accentuated my round the clock worries and concerns over and above the typical teenage stressors, financial stressors (loss of wages for time off as well as unexpected costs associated with treatment), and most significantly, the toll of ambiguous grief. Although I have not lost children to death, I have lost them to the life I envisioned for them. Grieving this reality is a process.  I get tired, I feel sad, I worry about the futures of all of my children -including my own- and wonder if we will all get our needs met and maintain mental wellbeing over the long haul.

Well this may all sound like doom and gloom, these are some of my honest confessions as a caregiver, and yet, I would not trade my learnings for the world. Through our experiences, my compassion has increased ten-fold for myself, my family and others going through the same. Navigating the ups and downs of mental illness, and the systems that go with them, is not for the faint of heart. It takes courage everyday and I applaud everyone of you who are doing it. Embrace the hardships and forge ahead. Remember, diamonds are made with pressure.

Navigating the Mental Health System

ashley-batz-1298-unsplashOur family has been both amazed and perplexed by the mental health system. Amazed by the volume of available services and resources, and at times perplexed by how to navigate them. It seems to be the experience of many people, that crisis gets service. However, what can you do when a diagnosis is suspected and/or emerging? Where can you go for screening, prevention and education? My suggestion… whether you are advocating for yourself or a loved one — start a log. Write down your observations, thoughts, feelings experiences, noting specific days and times. Think of it as detective work. Build a case. Search for clues. Solve the case. Survey family members, educators, anyone who is in your relational world that has a window into the behaviours you are trying to discern. Trust your gut and don’t stop searching for answers until you are satisfied. Start by bringing these concerns to your Doctor. Share any family history of mental illness. Query possible screening tools and begin the process of putting the puzzle pieces together in search for answers. This paperwork is often filled out by you and potentially some of the people you surveyed. Ultimately, just get started. If your GP is not knowledgeable in the matters you are presenting, ask for a referral to another Doctor or specialist: paediatrician (for children under the age of sixteen) psychologist, or psychiatrist for a thorough assessment. In my book, When Lightning Strikes Twice I talk about the importance of being patient and persistent, but mostly, persistent. Be prepared to wait, and sometimes even pay. A lot of services are covered under OHIP and or personal health benefits, but some are not. Public and private resources are available. Public services via school systems: in-board Psychologists, Child and Youth Workers, Social Worker, Counsellors. Canadian Mental Health Association has both adult and adolescent walk-in and follow up services including psychiatric care amongst counselling and other resources for the both individuals and families. Private services: via psychologists & counsellors. While of course these are not an exhaustive list, my hope is that they serve as a starting point for further exploration.

Self-Advocacy

When it comes to mental health, you are your own best resource. Well for some people, this may sound scary, it is a fact. Whether diagnosed with a mental illness or not, mental well-being comes down to what you are willing to do for yourself in all domains of life; mentally, physically, spiritually and relationally. Certainly, resource help is available for those who require additional supports such as; psychiatric, psychological, and pharmaceutical care to name a few. However, at the end of the day it is about what people do with these treatments that give them the best chance to improve the quality of their lives.  For example, medication alone is not enough. One must be intentional about setting up healthy routines that provide adequate sleep, diet and exercise to get our dopamine (happy feel good hormones) flowing. Try to maintain hobbies even when you aren’t feeling them. Pay attention to the activities and foods that boost your moods versus those that deplete your resources and leave you feeling worse. You might be surprised by what you discover. Credit yourself with the small steps like getting out of bed, having a shower and/or eating breakfast. What may seem like simple tasks for some, may be monumental for others who are struggling. Remember, this too shall pass. Hold on to the hope that better days lie ahead. Reach out, ask for help and be willing to receive. You know how good it feels when you help others, so let people do the same for you when you need it most. Don’t let fear stand in your way for the potential negative encounter. Remember, every human encounter has the potential to be a compassionate one. Be your own self-advocate.

Education versus Experience. Which is the better teacher?

Since becoming a registered psychotherapist and published author with lived experience of mental illness, I have been asked which has been the better teacher, education or experience? If you haven’t caught on by now, my dualistic questions result in a dualistic response: both. Is it possible to have one without the other? Certainly yes. Does having both result in enhanced value: yes. Let me ask you this, if you were to have surgery, would you rather have a surgeon preform it who only has text book knowledge of how to preform the surgery?  Or, years of experience? Chances are you would want both, but if left with no other choice, you would likely pick the one with experience and who has a history of proven results. That being said, education and experience are not mutually exclusive. Both are necessary. Just like a surgeon would not have education without practical experience, so to do therapists & mental health professionals. What enhances our knowledge base is the years of personal, clinical and professional experiences that we develop. Education and experience have their value and meaning but are undefined until paths intersect. Wisdom is ultimately the result. The two must work together. How you do this in any practice is both an art and a science.  My book, When Lightning Strikes Twice is a collection of our family experiences journeying through the ups and downs of mental illness. It is our intention that others will find hope in the struggle. Wisdom is a gift meant to be shared with others so that we can all grow collectively. What are you doing to enhance your education and experience?

Are you running on fuel or fumes?

A car cannot run on empty.  The same principle applies to people. If you were preparing for an adventure to an unknown destination, you would want to start with a full tank of gas. For those fortunate to have electric cars, you would want to start out your adventure fully charged. But how do we do this?

We’ve all heard it before, self-care, self-care, self-care. What is it and why is it so important? Self-care, simply defined, is our ability to care for our body, mind, and soul. So, what makes it so easy to say and so hard to do? Some people may say self-care is selfish, or that they would do it if they just had more time, or for a multitude of other reasons are able to justify allowing themselves to run on empty. Our society almost applauds how much people can do in less and less time, and yet more and more of those people find themselves in doctors’ offices, counselling offices, or the ER, looking for solutions to ailments of all kinds in hopes of a quick fix.

Do we consider the result of such self- neglect? Are we paying attention to the early warning signs of potential compassion fatigue (burnout) or depression? Have you ever considered the fact there is an indisputable correlation between our mental and physical health, and further, that there is a correlation between how we take care of ourselves and how capable we are of taking care of others?

We can’t give what we do not have. In the same way, ignoring our basic needs can cost us, and we run the risk of becoming overwhelmed, exhausted, and resentful.

So how do we safeguard against these risk factors and build on protective factors? It has been said that charity starts at home. Therefore, giving to others begins with giving to yourself, which is an act of love. Find ways to fill yourself up and keep on re-charging.