Tuesday 9 July 2013

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.


Stephanie said...

"The truth is that the vast majority of families giving care LOVE their charge. But caregivers need help and support - 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."

That is what I think about almost on a daily basis.

Jessica Kovacs said...

My son started having eating difficulties when he was about 6 months old. He was born blind and had 5 eye surgeries in that time so I think his little body was just overwhelmed. He went from being a chubby little baby to completely falling off the growth chart. He never latched for BFeeding so instead I pumped and used bottles. I tried supplementing his breastmilk for added calories and worked with my pediatrician. His eating just kept getting worse. Some days I could only get him to take 3 or 4 ounces all day and we would end up in the hospital for IV hydration. I had excel charts of how I tried to feed him and how much he ate. I did everything I could and I begged for help and answers. Eventually they put him in the hospital for one week to observe and run tests. I didn't realize it until later but they were probably really observing me. It was crazy. I asked for baby food and a high chair in the hospital and they acted so weird. I brought my breast pump so I could continue to give him Breastmilk. They never figured anything out with him but I think they did figure out that I was doing everything I could to help my son. My son got a g-tube (feeding tube) just two weeks before his 1st birthday. His weight shot up and he was full of energy! It was a difficult decision but I couldn't spend all my life trying to feed my son. We weren't living! I'll never forget how creepy it was being observed like that. It is such a hard thing to go through - especially when you would do anything to help your child!

The Caregivers' Living Room said...

Hi Jessica, my son got his G-tube at age 2 1/2. It's so difficult when feeding is terribly difficult for whatever reason and there is a diagnosis of 'failure to thrive'. It's awful for the mother! There is often a collective worry on the part of the hospital staff that comes across either directly or indirectly as suspicion if not indictment of the mother. How is your son now? Does he still have his G-tube?

Unknown said...

Care givers of elderly or those with chronic medical
conditions require a unique mixture of strength, endurance, compassion at times. sometimes due to stress most of the elder are neglect.