I’m Wendy Preskow and This is My Story.

Twenty years ago, the word “caregiver” was not in my vocabulary or the buzz word it is today. When you hear “caregivers” most people think of seniors being cared for by adult children, who may even be seniors themselves. I come from an entirely different caregiver population, one with little-to-no awareness.

My caregiving journey began in 1999. Little did I know that our youngest daughter, almost 15 at the time, was struggling with self-esteem and anxiety issues and that Anorexia and Bulimia were rapidly taking over her body and mind and devastating the rest of our family.

When she first got sick, her high school friend came to tell me she was throwing away her school lunch. Around the same time, she became a vegetarian, started making and requesting different “healthy foods” andexhibiting strange kitchen and eating behaviours. Her personality and character started to change.

“Where do we go from here?” I remember asking myself.

At the time, we were so naïve and didn’t know we were about to get caught into the whirlwind of an unknown illness. We had no idea where we were heading.

I remember my husband frantically charging through downtown Toronto to the National Eating Disorder Information Centre to gather names of therapists, doctors, dieticians, nutritionists…anyone we could call or reach out to for help. There was no Google at that time, and the internet was in its infancy.

At the beginning of her illness, I waited anxiously to attend a weekly support group for Moms at Sheena’s Place…a life-saving program. 

I vividly remember sitting in this group and watching the facilitator ask those in the room to share how long and how sick their daughters were. Some said three years, five years, and some even said ten years.

I remember thinking: ‘Not us after one year this will be over’.  Unfortunately, this was not my reality and I became one of those mothers. And eventually Bulimia made its ugly way into her soul as well.

Over the years we have ‘been there done that’ with every type of living situation and emotional roller coasters. From tough love to unconditional love.

Never in our wildest dreams (or nightmares) did we think we would be taken down these dark roads with our daughter who had everything a kid could wish for. We were loving parents doing everything we possibly could within reason for her and her older siblings. We even uprooted our lives and moved house in the hopes of making our lives better by giving her privacy in our basement.

In 2016, I took her to Emergency over twenty times to be rehydrated at her request. I would drop her outside the hospital and let her call me when she was done. I was getting to the end of my rope.

My only respite in all this time was knowing at least she was safe in hospital, too sick to run out, with people watching over her. I was ‘free’ for a few hours. Imagine having to think like this.

One major lifestyle change we have made, with her agreement, is to put locks on our freezer and lock the cupboard with all other groceries. Only spices and seasonings are in my kitchen cupboards. This is still the reality of our lives to this very day.

Twenty years of a living nightmare cannot be condensed into an article. But it is enough to paint a dark picture of the life my family, especially my husband and I have had to live with, affecting us emotionally and financially. When her name comes up on our cell phones our hearts still sink and there’s a moment of panic.

There is good news though. After 20 years, our daughter has finally started her ascent up the mountain of life.

We are starting to finally feel that all our strength and love, and her will to have a life, is suppressing the voices of her mental illness.

Although the stress and worries will never leave us alone, we have, over the past years as well, remade our lives as a couple and continue living and trying hard to enjoy our lives, which we do, and I count my blessings every day.

My advice to other caregivers – no matter YOUR age

1. You are not alone
2. Your story is unique –speak up- it takes time and strength, but do it.
3. Keeping quiet helps no one.
4. Get help for yourself to help you understand this complex mental illness.
5. Let go of the negative, unhelpful, unsupportive people in your life – even if its family.
6. Do your best to count your blessings.
7. Get medical help if you need it – days, weeks, months and years can be brutal on your own well being.
8. Venting and getting upset is ok.

Wendy Preskow is the founder of the National Initiative for Eating Disorders (www.nied.ca), an all-volunteer not-for-profit devoted to creating Awareness, Understanding and Action on behalf of people with Eating Disorders, their caregivers and loved ones. She is also a member of the OCO’s Mental Health Working Group.