Caregivers Are Not (Usually) Abusers!

Caregivers of very vulnerable loved ones who have extremely high needs are at high risk of being accused of abuse.  I know, because it happened to me.  And there are many other loving and responsible parents of children with severe disabilities who report similar scenarios.  In 2005, my son Nicholas had uncontrolled pain as a result of failed hip surgeries.  Nick was on muscle relaxants and major pain killers, including morphine.  But very often, the prescribed doses of these drugs did nothing to stop the terrible screaming in our house.  From the hospital payphone, I complained to a clinic nurse that pain doctors on call would hang up on me or simply tell me to come to the ER (something I could not do on a daily basis).  When Nick's pain got too bad, I reported that I gave a little extra morphine when I could not receive medical advice over the phone (often in the middle of the night).  I was exhausted. 

From my book, "The Four Walls of My Freedom": 

I remember standing at the pay telephone in the gloomy hallway, relating the desperate events to our rehabilitation nurse in Ottawa.  I described the visit to New Jersey, my worries about taking Nicholas home in such distress, and especially my worry about failing him as a mother.  I thought that perhaps he should be placed in a long term care hospital.  Surely they would know how to manage his pain better than me?  Surely they would have shift workers who would be less exhausted and desperate than me?  Perhaps, I imagined, people who knew me would realize the unthinkable, stark gravity of this request for a hospital placement for Nicholas and funds would be found to keep him at home. I was on my knees, begging for help. 

Finally, we boarded an ambulance taking us home to our local children’s hospital in Ottawa.  I carried the Montreal doctors’ notes in my lap, recommending a sleep study to ensure breathing safety in the event of necessary morphine increases.  I was happy to be going home and I felt that the pain team in Montreal had witnessed enough of pain at a level “10/10” to make their recommendations irrefutable.  I had just got Nicholas settled into his room in the Ottawa hospital when my social worker together with the rehabilitation nurse knocked at the door.  The look on their faces frightened me.  “What is it?”  My social worker looked distraught.  The nurse said that a child protection charge had been made against me.  There would be an investigation into the allegation that I had overmedicated Nicholas in New Jersey, and that because I had indicated extreme levels of stress and exhaustion, I was possibly trying to harm Nicholas.  At the very least, I had given extra morphine without a prescription and potentially put his life in danger.  I was incredulous, but at that point, I didn’t comprehend the full implications of this turn of events.  Then I was told that I could not be alone in the room with Nicholas.  Easter weekend was coming up and Nicholas could not come home for a weekend pass.  I was being investigated as a mother with intent to harm, if not kill her child.  A sense of dread, fear and helplessness oozed its way into my thoughts and dreams.  I worried constantly that they might take not only Nick, but also Natalie away from us.  It was ironic, I thought, that my greatest fear had been Nick dying. 

A couple of months ago, I wrote a blog post titled "Saying I'm Fine When I'm Not".  I received this comment from another mother of a young man with disabilities:  Thanks for writing this.  I think "I'm Fine" is a lot more than just the face we present to the world.  It's our guard against a system/society/family/community saying "maybe they're not coping with their child with disabilities, maybe it's too much, maybe the system should step in and take that child".  I only realized years later how close I came to losing Mike when a nurse said to me "we're going to admit him for a few days to give you some rest."  Mike was actually very sick, but that wasn't what the nurse was talking about.  So  "I'm fine" is our way of protecting our family.... until we realize that, of course, we're not fine at all.

One mother I know was investigated by new staff at a respite facility because of bruises on her son, acquired from his falls resulting from his ataxic cerebral palsy.  Another Mum was charged with Munchausen by Proxy by the hospital when physicians were (at first) unable to diagnose a rare genetic disorder.  These stories are all too common.  

Less frequent are the stories of caregivers being mistakenly charged with neglect or abuse of their elderly loved ones.  At least, I have not heard stories of this kind.

What might we deduce about underlying attitudes towards our vulnerable charges?  I believe that an unspoken assumption on the part of pediatric rehabilitation professionals is that in the case of severe disability, the human response is to harm or even murder their child.  Where elderly charges are concerned, professionals may believe this is the case, but the value of an old life is less than that of a young life, disabled or not. 

The truth is that the vast majority of families giving care LOVE their charge.  But caregivers need help and support - to ask for that help and support does not represent ulterior motives to rid themselves of their caregiving responsibilities by harming their loved one!  Asking for help is simply that - asking for help.  It's the responsible, right thing to do and it is shameful that caregivers should feel afraid to express that need.

The Spirit Catches You and You Fall Down - Learning from Tragedy

I had to dry my tears and compose myself before beginning this post.   It was a book that had made me cry - "The Spirit Catches You and You Fall Down" by Anne Fadiman.

This is a story about a Laotian family of refugees in California whose daughter, Lia, had severe epilepsy and developmental delays as a result of Lennox-Gastaut syndrome.  What happened to Lia and her family is a tragic litany of cultural misunderstandings together with the struggle for power over the care of this very complex child.  Lia's family belong to the Hmong group of Laotian people.   This is how they referred to their daughter's devastating epilepsy, "1982 was "the year the spirit first caught Lia and she fell down": 1985 was the "the year Lia became government property."

Lia's family do not speak English, nor could they understand the doctors' complex and ever-changing regime of anti-convulsant drugs.  When Lia's parents believed that the drugs made their daughter worse (which they often did), they simply stopped giving the medication and brought her to a traditional Hmong shaman healer instead.  No one ever contested that Lia's parents loved her or that they doted on her care in every way.  In fact, medical professionals considered Lia spoiled, but that did not stop her doctors charging the parents with non-compliance in her drugs regime and placing Lia in foster care.

Dee Korda was the foster mother who cared for Lia during this sad time.  Dee came to love Lia and her family, even leaving her own new baby in Lia's parents' care while she brought Lia to medical appointments.  Dee Korda and her family never doubted that Lia was placed in foster care as a result of flawed judgement and cross-cultural misunderstanding.  She once said, "Lia knew how to love and how to let people love her."  When Lia suffered toxic shock that rendered her effectively brain dead, the author remarked, "Whatever else she had lost, Lia still knew how to be loved."

Many parents I know and name as friends have been charged with non-compliance in cases of Lennox-Gastaut syndrome, the same illness that befell Lia.  Medication regimes are difficult to follow and the erratic comings and goings of seizures confounds the best doctors and scientists.  In fact, when Lia was removed from her family home and given over to the care of Dee Korda who administered multiple medications according to physician's orders, Lia's seizures became worse.  The sad story of Lia Lee is one of dedicated and talented physicians who had no training or skills in breaking down language or cultural differences in order to work in a collegial fashion with Lia's family.

In 2004, Nicholas was in a great deal of pain.  Two hip surgeries to rebuild a dislocated hip had not prevented his hip to become dislocated again and we were advised to remove the ball of the femur altogether.  This surgical procedure seemed dreadful, but we accepted that it was our only choice, so we agreed to it.  Afterwards, when Nick's femur migrated upwards into the pelvic bone, we tried multiple, permanent nerve blocks, but they caused secondary nerve damage and pain in Nick's right foot.  Trying to find a safe dose of morphine or other strong painkiller was nearly impossible, especially when Nick was screaming at 3am.  Often, the hospital anaesthetist on call would simply say "I don't do pain", or "I'm in the middle of a surgery, this is too complicated" and they would hang up before I could reply.

 Then this happened:  (from my book, The Four Walls of My Freedom)

"What is it?"  My social worker looked distraught.  The nurse said that a child protection change had been laid against me.  There would be an investigation into the allegation that I had overmedicated Nicholas, and that because I had indicated extreme levels of of stress and exhaustion, I was possibly trying to harm Nicholas.  At the very least, I had given extra morphine without a prescription and potentially put his life in danger.  I was incredulous, but at that point, I didn't comprehend the full implications of this turn of events.  Then I was told that I could not be in the room with Nicholas.  Easter weekend was coming up and Nicholas could not come home for a hospital weekend pass.  I was being investigated as a mother who wanted to harm, if not kill, her child.  A sense of dread, fear and helplessness oozed its way into my thoughts and dreams.  I worried constantly that they might take not only Nick, but Natalie away from us.  It was ironic, I thought, that my greatest fear had been Nick dying." 

In the community of parents giving complex care to their child, there is a high percentage labeled abusive at worse or non-compliant at best.  I am not a Laotian refugee and english is my first language.  Still, when my usually excellent relations with Nicholas' medical professionals took a bad turn, I believe it was on account of cultural misunderstanding.  The language that I did not understand was medical, administrative and prescriptive.  My language was cultural, intuitive and very responsive to a situation that was painful and chaotic.  In my next post, I will write about the inspirational lessons I learned for my own family and others who are working toward consensus with medical professionals in their child's life.