I had a client who called me up in tears the other day. Her little boy, who was, unfortunately, being treated for a rare autoimmune disorder, was in the hospital and was experiencing painful side effects from the medication. She felt that the doctors had decided that her son was a ‘high needs’ patient, meaning he was a complainer, and they had told her that they couldn’t treat him with anything stronger than Acamol (Tylenol) for the pain. She was tired of watching her son suffer but was unsure what she should do or how she should respond.
My heart went out to this young mother and the many parents and caregivers who find themselves in similar situations. The medical establishment is there to help us and return our health, but sometimes, they do miss the forest for the trees. I told her several points which I think are important for us all to remember.
- YOU are the primary caregiver of your child, your spouse, your friend when you are with them in medical emergency or hospitalization. A parent, especially, knows his/her child the best and must be included in any decision-making process regarding that child. This is true for the caregivers of adult patients as well. No matter how unpleasant or aggressive or impatient you feel the provider is, continue to ask the question or repeat the concern until you feel that you have received the necessary response.
- Pain management is tricky, and often requires an expert opinion, especially when dealing with autoimmune diseases or cancer. Often a combination of opioids (like oxycodone), optalgin (dipyrone – in Europe) and percoset (codeine/tylenol) are needed to alleviate pain. Finding a pain management expert is not always easy, but you must remember that you have the right. If you are at home, seeking out a private (reimbursable) session with a pain management specialist is essential for anyone being treated for a chronic or long term illness that requires possibly painful side effects.
- We tend to feel powerless in hospital situations, especially when they are ongoing, Perhaps this is a recurring episode, or we’ve experienced this with another family member or loved one. For example, I had one client who spent a month in the ICU with her ailing mother, who eventually passed away there, and six months later found herself in the pediatric ward with her 7 year old daughter with acute migraines. Certainly, this woman was suffering from the prolonged stress of a sick parent, many long and difficult interactions with physicians, on top of the worry about her child.
This is the time to consider having someone else act as the advocate for the patient. Either having the father come stay with the child or if that is not an option, bringing in a close friend or relative to act as mediator. We must remember that we are only people and even the most assertive and educated of us, need a break. We serve no one when all our reserves are depleted.
Feel free to share your stories of advocating for your loved one.