When 24-7 caregiving destroys a marriage

The following piece was written in response to our recent posts on the mental-health impacts of parenting kids with disabilities. This story was submitted by a blogger who is known to many of you for her wisdom, compassion and humour. And now -- courage. She wonders if there are others out there like her.

When 24-7 caregiving destroys a marriage
How one woman's world gradually shrank away

I never imagined it could happen to me.

I am educated, self-reliant, and was nurtured in a secure, loving home. I ended up, however, in a psychologically-abusive relationship. Psychological abuse leaves the victim blaming herself and questioning her own perceptions over the behaviour of the abusive partner.

It started when my child had a catastrophic illness that left her with severe disabilities.

Over an 11-year period, I slowly but surely abandoned everything -- family, job, friends -- to care for my child. My spouse could not, or would not, ever do it on his own.

First he insisted that help was required from staff or myself. Then the rule became that there must be two people at home at all times -- staff and myself, or spouse and staff. And when there was no staff, it had to be me and him.

He never went back to work and I wasn't allowed to.

I let go of everything that stressed him out. And stressed he was, with Post Traumatic Stress Disorder. But it was never enough. I could not open a window or it would cause allergies. I could not make a morning coffee until he was watching our child a foot away from the bed.

I could not go out unless I had permission and there was 'enough coverage.' As a result, I haven't been alone in the house for at least nine years. But I believed it was for 'the cause' -- our child -- and that my spouse was an exceptional man for sacrificing so much for her.

It was our child he used to hold me emotionally hostage.

He believed it was only our unwavering hyper-vigilance and constant focus on 'improvement' which kept her alive and well. No staff was good enough, no doctor, no therapist, no school. As my world got smaller, so did my child's. We lived in a room, watching constantly for 'trouble.'

It was through blogging that I came to understand what was happening to me. I became acquainted with a whole world of disability, and caregivers of the severely disabled. I learned how they lived and became acutely aware that something was very wrong in my world.

I got counselling, often in secret. Counselling helps the abused step back cognitively and process the situation, so that she can understand the nature of the relationship and the abuse. It also provides tools to help the victim develop better boundaries so that she can extricate herself from the relationship.

It took me over a year to ask for a divorce. Interestingly, it was my spouse's insistence that we get couple's counselling that reinforced my decision. I became aware of my issues, was able to see where I was off-track in my perceptions, and learned what to do to move ahead. My spouse was shocked that the therapist didn't get me to 'see the error' of my ways.

Now, as I finally plan to leave, child in tow, my partner says I am selfish and am causing our daughter to suffer more, deteriorate and even die.

I will move ahead regardless.

I am on my way out. There is a long road ahead. I will have to deal with my spouse for as long as I have 'our' child. But I have the tools and the growing self-confidence to speak up and move forward in life. In the end, it will benefit not only me, but my beautiful disabled child, who, along with me, will gain a new life.