In my situation, it was the nurse who would phone Dad's doctor, while he was in long-term care (LTC), and determine the type of medications he should have. She would not be truly assessing and diagnosing, as we knew he had a brain tumour, but the doctor was truly unaware of Dad's daily situation. He was rather vague about his short and long-term prognosis, as well.
I tell this for those, like me, with Power of Attorney and those who need to determine the best course of treatment.
Of all the disciplines, you would think that healthcare professionals would do their best to be current and up-to-date in best practices and current research. This is not the case.
It is not necessarily an age vs. newly trained nursing practices, but those who cling to outdated notions of pain relief, nursing care, medications, and an awareness of the biopsychosocial issues of healthcare.
However, once a patient is in LTC, family members suddenly become helpless to demand care. This is only right, as they are the healthcare professionals, but not all institutions are able to provide individual care for residents with individual issues. Nurses are hard to contact.
They do not differentiate residents with dementia, from those who have spinal stenosis, a brain tumour, MS, and few have expertise in these issues. Personal Support Workers are similarly undertrained in treating clients as individuals. Physicians are even worse.
For example, Dad's brain tumour meant that his dementia seemed to outweigh any determination of true pain, his daily treatment or the diagnosis and treatment plan. For example, Dad had had arthritis in his knees for many years. He was on Tylenol 3 for it. Once placed in LTC, it was at the whim of the nurses to determine his pain meds. That may sound trivial, but unless I begged for pain meds, they would not up it.
This is what his pain looked like:
I place these photos here not to shock, but to show you what pain looks like. Daughters know. I was scolded for showing these photos at a workshop for nurses and PSWs. All young men and women my children's age, who need educating. We deny pain. The powers-that-be insist that they know best. I was scolded by a relief nurse, while doing respite care in a private home. I provided a list of the signs of pain, and she said that since the client was unable to communicate and denied she was in pain, that I was wrong.
We know more about signs of pain, both in human and animals (check with your vet!). Yet, we ignore most of this information as well.
Imagine a daughter, explaining to staff his signs of pain: facial expressions, sighing, Ooohing and Awwwing, moaning, moving uncomfortably in his wheelchair, singing at the top of his lungs. Singing was an activity he adored, and the last thing he could do - I knew it was a sign of his pain as brain tumours give people headaches - this is documented in the literature I read.
Imagine me, trying to convince them that he needed upped dosages of something, I know not what.
They gave him another pain medication, not recommended for those with dementia. He had dementia. Of course, this truth I only learned later.
There are many issues around pain management for those with dementia. Pain is an abstract concept and those with dementia limited in their abstract thought processes. Some, like my Dad with a brain tumour in the area of language, had many limitation on expressive communication.
Both expressive and receptive communication is limited, as this symbolic communication is compromised with dementia.
The regular nurse was on maternity leave. This is the one we loved, with modern information and concern for patients. I fought with the doctor for three days, trying to track him down. The nurse had told me he wouldn't respond to her calls, and to call him myself. I reported him to the College of Physicians.
Signs of Pain
There are non-specific signs of pain: frowning, grimacing, grinding of teeth, fidgeting, bracing, rubbing, striking out, increasing or recurring agitation, poor eating or sleeping habits, sighing, moaning, groaning, decreasing activity levels, resisting particular movement, change in gait or behaviour or loss of function. Dad had all of these and, in hindsight, was clearly undermedicated.
Symptoms of pain
Loss of appetite, anxiety, bleeding, constipation, cough, confusion, dehydration, depression, diarrhea, dysphagia, dyspnea, hiccoughing, intolerance of sheets on their legs, sweating, nausea, vomiting, pruritis, insomnia, mouth pain, skin problems, seizures, urinary frequency, weakness.
Watch for changes in expression, a change in behaviour, physical, intellectual, emotional spiritual pain:
- being very quiet or moaning, rocking
- being friendly to now being combative
- from being cheerful to being sad
- eating well then refusing food
- sleeping well to insomnia
- gestures: wringing of the hands, fidgeting with clothes, "pleating", clenching fists, flinging arms about, reflexive jerking, rubbing a body part, rhythmic body movements (banging on a table)
- holding onto a chair for security
- tossing and turning in bed
- changes in body posture: slouching, slow shuffling, tense posture, rapid gait, tense sitting or lying positions