I Can't Talk But I Can Feel

 Dr. Angela Mailis, Founder

Dr. Angela Mailis, Founder

An administrator in the hospital called me on the phone quite distraught. Her father with Alzheimer’s was residing in a nursing home. While he was forgetful, he was quite self sufficient in personal care, pleasant and well interacting with the family who visited often. That is, until he was diagnosed with neck cancer and was sent for a number of radiation treatments localized to the neck. Unfortunately, the radiation caused some serious burns in the neck that needed lots of local treatments and dressings to help the burns heal. This is when the man changed. The bewildered daughter described him as unable to speak or respond to close family members, thrusting violently at times and quite unable to even feed himself. So, she called me to discuss him as the nursing home staff had no clue what to do. One of the reasons people with substantial cognitive loss get derailed and confused, is when there is big change in their environment. The old man had been taken frequently for a number of treatments in an outside unfamiliar facility. That could partially explain his behavior.  The other big reason is untreated pain. I strongly recommended that he is given some liquid morphine regularly, so the daughter went back to the nursing home staff and suggested this. The change was dramatic. Within 20-30 minutes after the ingestion of liquid morphine her father would be able to sit up, eat and communicate. A couple of hours later, when the drug wore out or when the dose was insufficient, he would resort back to silence and inability to do his basic things, wincing and unable to interact or talk. I suggested dose increase and also more liberal use of the drug in frequent intervals. Two weeks later, as his burns were healing well, the morphine was much reduced and he was returning to his old good self.

In another extremely sad case I saw, a 45 year old woman was brought to me from a nursing home outside the Greater Toronto area by her caring sister. She was bound to a reclining wheelchair, the left leg was in a brace with the knee straight and the left hand curled under the covers. Her story was the stuff horror movies are made off. About 5 years ago she was shot by her husband in the head while he committed suicide afterwards. This lady survived but with huge injuries. The bullet went behind her eyes and destroyed her eyeballs, so that the eyes had to be removed from their sockets leaving her blind. The neurosurgeons tried to clean up the bullet fragments from her brain. After this surgery, unfortunately, she got a stroke that damaged the right part of her brain. Specific areas of the brain control both movements and sensation in our body. When this lady’s right brain was damaged, it was the left side of her body that got paralyzed. So, here she is, blind, brain damaged and paralyzed in one side, which left him totally dependent on others for everything. But the tragic story did not finish here. Shortly after the stroke she started complaining bitterly (whichever way she could, with some words, sounds or body jerks) of pain across the whole left paralyzed side. Moving her from chair to bed and vice versa was an ordeal, and the staff (inpatient, untrained and not educated in her condition) let her and the relatives know that probably this “was all in her head”.

They were absolutely right, it was all in her head, but to be correct, not the way they meant it (as a “figment of her imagination”). This unfortunate lady had suffered a serious and very difficult to treat neuropathic pain syndrome seen in about 8% of all people with stroke, that we call “central post stroke pain syndrome”. When I examined my patient with a soft feathery make up brush, she found it very painful. Over the years she had been able to recover her ability to speak and respond to questions, so she told me clearly how uncomfortable my little brush felt on her skin. Touching her with a sharp pointy object was even worse, while the slightest movement of her paralyzed side was unbearable. Her very long toenails on that left leg were the proof of her inability to tolerate the slightest touch or movement and the skin over the toes was dry and scaly as water on the skin was not tolerated.

Probably my most important contribution to this lady’s care was a scalding note to the nursing home indicating what the diagnosis is with advice to handle her very gently and stressing “this was in her head, but in her brain”!

Why did I tell you all this? Simply to show you that pain in institutionalized settings in a huge issue, untreated and poorly understood for people who are seriously  physically impaired and/or have reduced cognitive capacity or ability to communicate. This goes as well for young kids with cognitive impairment but I am not a kids’ pain doctor, so I leave this to specialists in pediatric pain. Stats Canada told us that in institutionalized seniors, chronic pain affects  close to 4 people out of every 10. 

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