Edith lived at an assisted living facility. She had a history of mild dementia, but was able to complete most tasks with set up and occasional assistance. A bout of pneumonia put Edith in the hospital. When she was discharged back to the facility, she was referred to therapy to restore her strength and independence. Physically, she improved quickly. Cognitively, she experienced a steady and complicated decline.
Each morning, as we worked on self care tasks in her room, I would asked her how night was. Edith shook her head and cried. She was exhausted from lack of sleep. She was frequently tearful and grew more distraught each day.
For several weeks, Edith had been experiencing visual and auditory hallucinations coupled with delusional thinking. Each morning she would recount with vivid detail the man who sat outside her window and taunted her at night.
The man was younger, in his mid twenties, and he wanted her to let him in. She would go to the window and beg him to leave her alone. He would tell her that he was constantly watching her through the window. He called her names. He threatened to tell others that he had seen her naked if she wouldn’t let him in. Edith would hold her head and sob in despair.
There was no comfort in the daytime either. Edith still believed he was there, and when we would look out the window together, she could tell me where he was hiding or that he had gone to work for a little while. She knew elaborate details about this man and his life, but couldn’t explain how she knew those details.
A Few False Starts:
Reasoning and logic were no match for Edith’s hallucinations and delusions. We explained to Edith that the presence of this man was highly unlikely, even impossible given the weather conditions and the accessibility of her window. Edith could agree in principle, but it was not enough to override her belief that he was real.
The staff and I worked hard to make Edith feel safe. The maintenance man installed a bar on the window. We hung heavy curtains. We tried leaving lights on at night, and playing music or the television to drown out his voice.
We let Edith keep her cane in her bed for protection. We gave her a flashlight. We made sure the call light was near her when she was “tucked into bed”. But any strategy we put in place was powerless against the voice that threatened to tell everyone that she was “dirty”, and “promiscuous”, and “ugly” if she dared called anyone for help. We tried to reassure her that no one would believe those things to be true. We begged her to try and rest as a few hours of sleep would do her a world of good.
Edith’s physician prescribed a series of medications to try to curb her hallucinations. She was highly sensitive to any change in medication, and was unable to tolerate psychotropics, antidepressants, or sleep aids. Edith was eventually diagnosed with Lewy Body dementia. Medications do help some people experience fewer hallucinations and delusions caused from some forms of dementia. However, the medication intolerance common in Lewy Body dementia presented extra challenges for Edith. Her mild confusion plummeted into a world of false realities and disturbing beliefs.
The hallucinations seemed to be the biggest of all of Edith’s troubles. Her caregivers, myself included, were determined to bring her back into “the real world”.
A Different View:
Let’s take a step back. Let’s look at Edith’s brain and behaviors and see what they are trying to tell us: Edith’s brain is busy. It doesn’t have an off switch. Her body doesn’t rest for long periods of time. She spends at least 50% of her life engaged in another reality. Offering her quiet, peaceful moments may sound lovely in our well-regulated world, but Edith’s world is chaotic and disturbing. The last thing her brain wants is to be still.
The best thing we can do for someone like Edith is to offer activities to keep her engaged in our reality, and expect that she will need to engage in these activities at very unconventional times of day.
10 Tips for Managing Hallucinations:
1. Keep her safe. Someone like Edith is at risk for wandering or elopement. He or she is generally trying to go somewhere or get away from somebody. Close off access to exits and stairs.
2. Validate. Reasoning and reality orientation are highly ineffective and can lead to greater anxiety. Validation approaches address the emotion, not the message. Someone who is hallucinating needs you to understand if the belief or vision is scary, or sad, or distressing. You don’t need to “see it too”, but you do need to agree with the emotional content.
3. Gross motor. You’ll notice that people who are hallucinating don’t just sit around and watch the action. If at all possible, they are on the move. They are working out a problem or checking out a situation. There is gross motor activity. For caregivers, this means that the brain and body are seeking gross motor movement. Distract them with an activity that requires gross motor participation: bat a balloon, go for a walk, place post-it notes on the wall and have her find them. March, dance… just get moving.
4. Touch. Many people, particularly seniors, are touch deprived. Firm touch in the “safe zones” can be reassuring. These areas are the large body parts- mid-back, upper arm, lower thigh. Touching the hands and face where there are lots of nerve endings may be perceived as intimate contact, so avoid those well-intended soft touches. Pets are one of the best ways to provide comfort for someone who is anxious. Tapping into the instinct to nurture, as well as the need for touch, and a dog or cat can do wonders for reducing the anxiety of delusional thinking.
5. Call Someone. Many times a simple phone call to “someone” helps puts the issue to rest for a little while. A call to a son, or the “authorities”, or a manager may help the person feel validated and safe.
6. Oxytocin. Oxytocin is also known as the trust hormone. It is a chemical that is released in the brain that helps humans bond with each other. Deep pressure and massage prime the body to release oxytocin, and evoking a sense of trust helps release it. Read more about the clever strategy for evoking trust here.
7. Chores. “He who seeks rest finds boredom. He who seeks work finds rest”.- Dylan Thomas. Put out baskets of laundry to fold, a dust rag, and a broom. Channel busy time into productive time.
8. Vestibular Stimulation. When the brain cannot process stimuli in the environment, it is sometimes because the vestibular system is misfiring. Provide the opportunity to rock or swing. Have the person perform paired changes in body position: roll left and right, lie down and sit up, stand up and sit down, twirl right and twirl left. Music and dancing are great ways to get these positional changes accomplished.
9. Break bread. As humans evolved, the practice of the family meal became almost hard-wired into our DNA. Sitting down to eat in the company of others instills a sense of belonging and safety. When someone is hallucinating at night, it can be challenging to alter convention with a midnight meal. But for the sake of bending to someone else’s reality, the act of breaking bread at non-standard mealtimes is an effective strategy for creating a sense of normalcy and well being.
10. Hands on. What can’t be worked through in the mind is sometimes better left to the hands. How many of us clean when we’re upset. Or tinker in the garage to work through a problem. Offering a hands-on activity, as simple as a junk drawer that needs sorting, can be a great distraction for the brain.