When “Emmanuel” was moved to a long-term care home, his family believed it was the best decision for everyone involved. Emmanuel, on the other hand, disliked being in the home from Day 1. He felt betrayed and abandoned by his family. He did not want to be in the care home. Most importantly, he doesn’t believe he belongs there. He wants to go back to his own home and is determined to prove to the staff that he is independent and can take care of himself.
Although he can assist his caregivers during care, he needs assistance to safely transfer to his wheelchair and vice versa. He refuses assistance from his caregivers and is constantly asking to leave the home.
Hearing Emmanuel talk, no one would think that he has dementia. What he says makes sense. Therefore, for many months, the staff just believed that he was merely a “rude, cranky, angry, demanding old man.”
A Misunderstood Reality
“Don’t trust anything he says. He is manipulative.”
Emmanuel’s ability to articulate his thoughts led staff to believe he was merely difficult rather than a person living with dementia. He was even labeled as manipulative. Emmanuel, a smoker, had once attempted to leave the care home, resulting in a decision that he needed supervision while smoking. This restriction made him feel more like a prisoner who had been stripped away of his sense of freedom.
His behaviors led to avoidance by staff, who found him uncooperative and combative. Complaints such as “No one came to ask me what I wanted for lunch,” “They did not change my pads,” and “I didn’t shower because no one asked me” were dismissed as everyone perceived this as his attempt to make trouble.
Even when caught smoking in his room, Emmanuel insisted he had permission, further cementing the staff’s belief in his manipulative nature.
The staff believed that Emmanuel “wanted to make trouble” for them. He was unhappy so he “wanted to make everyone else unhappy”. They believed that Emmanuel “knew exactly what he was doing,” and that he just “wanted to make life hard for everyone.”
The Reason for Emmanuel’s “Difficult” and “Manipulative” Behaviour
As Emmanuel’s behaviour has become increasingly difficult, the home decided to assign him a dedicated companion to keep him, and the other residents, safe.
Now having 24/7 one-on-one support, “Jiehong,” his caregiver, witnessed firsthand proof that Emmanuel was not being manipulative or a liar. Since Jiehong now had the time to focus on Emmanuel, he was able to read his file and history.
Jiehong found out that Emmanuel has alcohol-related dementia (ARD). Everything started to make sense:
Emmanuel has a form of ataxia which is why he was shaky and unsteady on his feet.
He believes he can still walk on his own and take care of himself because he also has anosognosia (a condition that prevented him from understanding his condition.)
He also has the symptoms of poor judgment, in the example of him lighting a cigarette and smoking in his room. Emmanuel’s judgment is impaired.
He wasn’t lying about not being offered to take a shower or have lunch. His memory was impaired. He truly did not recall that someone had invited him to take a shower or go to the dining room.
He was exit-seeking and determined to leave, because in the four months since Emmanuel came to the home, his brother died and he was not allowed to visit him. He was afraid the longer he stayed, the more family members he would lose without having the chance to say his “goodbyes.”
One afternoon, about 5 minutes after helping Emmanuel change his incontinence pad, Emmanuel asked for help to be changed. Jiehong thought Emmanuel was joking, but he was serious. This prompted Jiehong to investigate more about Emmanuel and his medical condition.
Realizing the truth about Emmanuel’s condition, Jiehong’s heart sank. He recognized that Emmanuel’s actions were not manipulative but a reflection of his impaired judgment and memory on top of his inability to comprehend his health condition. This understanding fostered a deeper sense of compassion and connection. Jiehong began to see Emmanuel not just as a difficult resident but as a person grieving the loss of independence, freedom, and loved ones.
This made Jiehong realize that everything the staff was saying about Emmanuel was not true at all. He wasn’t a liar or a manipulative person. Emmanuel was telling the “truth” based on what he remembers to be the “facts.”
Understanding Breeds Compassion and Connection
The one-on-one time that Jiehong spent with Emmanuel allowed him to get to know the person behind the dementia. He understood why he was angry, cranky, unhappy, and wanting to leave all the time.
We are all different, but we are also all the same. We all desire independence, freedom, and love; and we also feel loss and grief. We mourn the loss of our independence and freedom. We grieve the loss of loved ones although we may all grieve in different ways.
Although Jiehong still feels stressed and tired from the demands of his caregiving work, he finds patience and empathy for Emmanuel. He found a connection and shared values, fears, and emotions. He also noticed that his newfound compassion caused a positive change in Emmanuel’s moods. He began to smile more, share happy stories, and even showed signs of contentment in the care home.
Emmanuel’s story is a powerful reminder that understanding breeds compassion and connection. By looking beyond the surface behaviours and truly getting to know the person, caregivers can provide more effective and compassionate care, improving the quality of life for those living with dementia.
If you have concerns about a loved one or a friend and don’t know what to do, you are not alone. Reach out and ask for help. We can help by brainstorming ideas with you that will best suit your situation. Begin by contacting us through our website www.DementiaSolutions.ca to arrange your free 20-minute consultation with one of our Dementia Care Advisors.
DISCLAIMER:
The contents of this blog are provided for information purposes only. They are not intended to replace clinical diagnosis or medical advice from a health professional.
2 Responses
Dementia Solutions, helps me understand more and how to deal with my clients, have empathy toward them,
awesome article . I worked in nursing home for 45 years and have witnessed this with residents that were difficult mainly due to dementia .