Saturday, July 16, 2011

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.

21 comments:

When a child has a disability, no matter how severe, a parent has the following choices:

1) They can walk away (abandonment is common).

2) They can shelter or protect that child for the
rest of their lives.

3) They can help their child find or build a
life worth living.

Matt Kamaratakis

I don't think that sheltering and protecting a child is exclusive of giving them a life worth living.

Hi Ann,

You took the words right out of my mouth!!!

love
matt

Hi Ann and Matt:

I think an important factor here is the combination of severe disabilities and complex medical problems that can be life-threatening.

And yes, I don't think 'protecting' a child with those issues at home (as opposed to putting them in a rehab hospital) compromises quality of life.

It's interesting that the words 'protect' and 'shelter' have taken on a negative connotation in our independence-obsessed society.

Were you thinking of them in that way Matt?

Thanks for writing everyone! Louise

Louise,

You know me well enough to know that I believe in an interdependent society, where people are not divided by ability or prejudice, but united in a sense of commonality and the emergence of a human ethnic. The pillars of my world are also forged in the principles of reason, compassion, strenth, love and acceptance.

With this said, however, I will agree with you when you say, " I don't think 'protecting' a child with those issues at home (as opposed to putting them in a rehab hospital) compromises quality of life." Nonetheless, there are instances where protecting or sheltering a child can have negative effects. For instance, we would never send Ben or myself to Hati (although I want to go), but horseback riding at summer camp or traveling to Chicago is worth the risk."

Moreover, would we not find alternative ways to educate our children, in spite of the fact that they may never be healthy enough to attend school --do you remember the article I sent you about a boy with severe and life-threating disability using an iPad to communicate to his mother? She was not merely giving him a voice, but a reason in which to live --a life worth living.

I also have tremendous respect and admiration for Jennifer (Owen's Mom), whom as you know, was courageous enough to throw conventional wisdom to the wind and provide her son a fulfilling life, even in the face of pending death.

Furthermore, when I come to your home to visit Ben, are we not helping each other?

Lastly, When children leave or are discharged from a children's hospital at the age of 18, most possess the ability to communicate, take themselves to the washroom, read at a basic level and interact with the general population, but are left without an education or the skills to pursue a life of their own choosing.

Therefore, I say once again, "Parents can help their child find or build a life worth living --an interdependent and fulfilling life."

Thanks Louise.

love
matt

How interesting that this discussion about a marriage ended up revolving around the child with disabilities...where the child is being used as the excuse to abuse psychologically.

Hi Claire -- it would be interesting to know whether psychological abuse was a part of the picture at all before the child had the catastrophic event.

Or did the extreme caregiving and uncertainty over time cause mental illness that is a part of the abuse?

I don't know a lot about the topic, but I just wonder.

Hi Matt -- it's just that because your comments were numbered, it implied that they were separate choices a parent could make (e.g. either abandon, or protect at home, or help build a good life).

I know you live your life as one who believes in interdependence.

To be honest, I don't know whether "most" youth leaving children's rehab at 18 are able to do the things you state.

I know that many youth who are non-verbal have great difficulty interacting with the public, even if they know how to use a voice device well. And the same for some youth who have autism.

The child who is written about above requires complete personal care. Again, I don't know what percent of the population of children with disabilities this group would represent.

I do agree with you that for the kids who are able to do what you state, they aren't given a proper education!

Thanks for writing! :)

We've all heard the statistics about how having a child with autism or special needs leads to more divorce than "typical" children. (Notably, it has been shown that those parents with a child who has Down syndrome are LESS likely to split up than those other parents.) I do not know if the autism thing is true and am on my phone right now so looking up specific statistics is a bit difficult. But, I do not think the issue here is the child's disability leading to the deterioration of a marriage.

My opinion: The husband probably would have found a reason to control regardless. I cannot postulate as to why the dad never felt they could be alone- maybe he was afraid his child would die & felt the chances would lessen with an extra pair of eyes, but whatever the reason, I think it's crucial to take away from this story two things: parents need a break to be PEOPLE & psychologically abusive/controlling people need to be left- & often they are intidimating (saying the child will die for instance!) or difficult to leave, so I highly commend the author for leaving.

I don't know if the child is severely immuno-compromised but I would venture to say the child would be far better off with a "quality of life" that involves going outside, interacting with the world, maybe being pushed around in a wheelchair or controller around the mall or park, etc, instead of trapped within four walls. It takes great strength and courage to leave so again, I commend the author. I don't have a child so I can't say anything about how it has affected my marriage (I'm not even married either!) so I'm sorry I couldn't offer more.

Louise,

I must admit that the last two choices are tough. I did, however, stop to consider those who are autisic and non-verbal. With this mind, and as someone who loves you and your family a great deal, I tell you that I will always choice option 3 for two reasons.

The first is purely scientific: "These kids will outlive their parents."

The second is personal: I love my family, but my life has never been enough."

love
matt

But Matt -- can you not combine number 2 (protection) and number 3 (a life worth living) in some cases, particularly those where the individual is completely dependent and has medical fragility?

It's not an either/or situation -- right?

What did you mean by "my life has never been enough?" Please tell us more.

Did you see the update on Ben?

Matt:

I respect your opinion and where you are coming from. However, as a parent of a child who cannot talk and never will talk due to the type of neuromuscular disease he has, whose body is paralyzed, who will never breathe without the assistance of a machine and who very likely will not survive me - I am doing the very best I can to give my son a life worth living despite the fact that he is sheltered and protected within the confines of our home. My son does not attend school, however, he goes outside when the weather is good, he attends most family events (I come from a large extended family), he has therapists who come to the house and he is surrounded by loving parents, siblings and caregivers every day of his life. My son is happy, he is not in pain and he is loved. I think that gives him a life worth living despite the insidious disease that has riddled his body. There is an entire population of children with severe disabilities who are also medically fragile and it’s not a simple matter of choosing between your second and third option. It’s a matter of maximizing your child’s potential and opportunities while trying to keep him alive at the same time.

Louise,

I love you for opening my mind and pushing me to the brink. Yes, one can combine options two and three, but it is a rarity. For example, although some disabled adult children do remain at home, they still must choose between protectionism and building a life worth living. For, in my experience, the father is the protectionist while the mother is always working towards greater independence. Those like D'Arcy and David Sexton may have their reservations from time to time, but they are a blessid minority.

As for the rest of it, I need to do some writing.

Matt

Hi Ann,

It's around six AM in Toronto and I can't sleep. Hence, I'm writing.

I wholeheartedly understand what you're saying. There is no doubt, "You're doing the best you can. I also think that if your son could speak he would say, "I love you, my life, and the people in it. Thank you for taking of me."

With this in mind, I also need to tell you that I recently visited a dental clinic for adults with disabilities and sat accross from a women who was much like your boy, except she was able to breathe without a ventilater. And, as I am sitting there, I watch this woman, who is trapped in her body, open and close her eyes, craving attention and stimulation, as people are merely walking by. Her worker, whom was beside her, reading a magazine, was either clueless or didn't care.

Now, I would suggest that this person with a disability was revealing intelligence, but her worker could have enhanced the quality of her life through friendship or simply sharing an article. This would also be a life worth living.

Yours truly,

Matt Kamaratakis

I agree with you Matt regarding the woman you encountered at the dental clinic. What you observed is why I shelter and protect my son. I see what you saw all the time with my son - being ignored because he can't communicate with words. He speaks volumes with his eyes and his smile, but most people don't take the time to look and listen. The worst are the medical professionals who don't treat my son like a human being and pretend he's not even in the room. I will acknowledge that I am probably over-protective and don't give my son as many experiences as I could. I'll also admit that I'm not only protecting my son, I'm protecting myself from the insensitivity of people around us. I choose to surround my son and myself with people who do care, who do talk to him, read to him, play with him and love him. Life is too short and, quite frankly, I don't have the energy to champion change in the way the world perceives my son and other people with disabilities. I'm just doing what I can do to get through each day and make sure my son remains happy, pain free and loved.

Thanks so much for your insight Matt. I do appreciate it.

Dearest Ann,

I Thank God that you posted back, as I am usually able to leave my emotions on the page (or, in this case, the screen), but haven't been able to lessen my tears from this morning. Moreover, please believe that on this day, "You both have wholeheartedly gained a friend." I do, however, only need to ask you one more question, "What is your son's name?"

I pray that you continue to take one day at a time, and never worry about becoming a champion for change, as Louise and I are always here.

Never surrender!!!

love
matt

Matt,
My son's name is Jack. You can read about Jack and our family at: www.jack-schrooten.blogspot.com

Thank you for your friendship.
Ann

Matt -- just one more thing that I want to share. Jack has an eye gaze system that allows him to activate a computer just using his eyes. I was so hopeful that the system would open up a world of communication for him. Jack can activate the computer and he is able to play some games using his eyes, however, he has not been able to use the system to communicate words or thoughts. In learning more about Jack's disease, it appears that in some people the brain is affected in a way that doesn't allow the processing necessary to communicate effectively. Jack truly has so much to say - it's written all over his face and it breaks my heart that he can't get it out. We tried, we really did, but it's not meant to be.

Louise - sorry to hijack this post. I'm done now, I promise :-)

Ann,

I've been working on ways to combat this. I'll be in touch --I promise! Unfortunately, I have night school tomorrow (my last class) and than we can brain strom.

I visited your blog and saw "Smilin' Jack." What a beautiful boy!!!

Matt

I wonder if being extra-vigilant over the care of a child who has survived a "catastrophic illness" is a natural response to trying to make up for that one moment you let down your guard and this terrible thing happens to the most precious thing you've produced. Maybe you can't help but somehow feel responsible. The guilt builds. You become obsessed with the fear of losing what you still have. You can't be carefree. You can no longer accept the normal risks of allowing your child to live an interesting life, the way other parents do. You slowly become trapped in this mentality of "not on my watch". It takes a lot of courage to stay the course if that's what you feel. And it also takes a lot of courage to change the course when you feel in your gut that this is not the only way.

The most important thing about my relationship with my children is looking to enjoy the moments that I can later reminisce about in my old age. None of them are medically fragile, but if by chance a tragic twist of fate, I hope to cherish these memories like a favourite storybook and go on to make more happy memories for perhaps another family storybook.