by Debbie Compton
The Relationship Between Journaling and Caregiving
Many of us find ourselves in difficult caregiving situations where we need help finding answers to help our loved ones. The internet can often provide guidance and advice, but not always. I found little to help with my dad’s hallucinations from Parkinson’s in my research, so I set out to create my own solution. I took an unusual approach – journaling.
Journaling is popular these days with many. People find this exercise provides an opportunity to process emotions in a safe, contained space. More specifically, caregivers often journal for self-care. I journaled for a different reason; to look for patterns to help me treat my Dad’s Parkinson’s hallucinations. I hoped that by better understanding the situation I could come up with a solution. I highly recommend journaling for caregivers as journaling can provide benefits in many different circumstances.
Hallucinations and Parkinson’s
Here’s my story:
I entered my parent’s home on an ordinary Wednesday morning, expecting a typical greeting of hugs and well wishes. What I saw took me completely by surprise.
Dad hovered over Mom’s recliner, hitting it with a baseball bat! “What are you doing?!” was my immediate, horrified reaction, to which Dad replied, “Killing the aliens!”
Shocked by his response, my mind raced. What if mom was sitting in her chair when dad “saw” the aliens and began beating the chair? Why didn’t I know he had a baseball bat? How do I respond to this bizarre behavior? My poor dad was shaking from fright, yet he still tried to protect Mom.
How to Diffuse the Situation?
A little background: The doctor diagnosed Dad with both Parkinson’s Disease and Macular Degeneration a few years earlier. As far as I knew, though, he had never before experienced hallucinations. I never knew anyone with Parkinson’s before and was unaware hallucinations were a symptom of the disease. I felt utterly unprepared to be their caregiver moving forward.
My response that day to Dad’s hallucinations? I did what many caregivers do and responded to the bizarre behavior that I didn’t expect with rational answers. The problem is that a mind struggling with dementia no longer processes logic, and the ability to reason is gone.
Then, after setting the bat aside to take home with me, I searched the house for more things that could be used as weapons.
What I Found in the Research on Parkinson’s and Hallucinations
I desperately needed guidance and advice. So next, I did what I knew how to do: research to find a solution. I found lots of information about Parkinson’s and hallucinations online, but few solutions to real-life problems encountered.
The few posts I did find with information on how to respond to the type of situation I described above basically said “Don’t argue.” Unfortunately, I read that after I told Dad there was nothing on the chair. This information helped me understand his stubborn reaction though. How could I expect him to believe my words when he could see the alien sitting in the recliner?
Creating My Solution: Journaling
As I found little helpful information, I took what I learned and created my methods to determine, and ultimately resolve, the underlying problem. Responding lovingly and supportively is a good start, but I needed more. I wanted to eliminate the aliens. That was the only way to get rid of Dad’s fears, which were very real to him. Also, once I got rid of the aliens I would no longer have to worry about Dad mistakenly hurting or possibly killing Mom.
I took an unusual approach; I began journaling. I recorded absolutely everything.
Medications
I wrote when Dad took medications and noted any changes in mood or behavior thirty minutes to an hour afterward. Medications can cause a wide variety of side effects, so caregivers need to track any changes after introducing a new medication.
Food intake
I recorded what he ate to determine if the hallucinations were connected to an allergic response to some food he had ingested.
Nap schedule
I noted when he napped to see if overstimulation was involved. Perhaps the hallucinations from Parkinson’s resulted from being overly tired when he missed his nap, so his brain couldn’t keep up, I reasoned.
Exercise
Whether Dad got any exercise that day was another topic. If our loved ones sleep too much in the daytime and get no exercise, they are much more likely to be up at night. Moderate exercise helps improve circulation, regulate mood, increase oxygen to the brain, and delay disease progression.
Time of day hallucinations occurred.
I recorded the time of day the hallucinations started, if he was watching TV or not at that time, and the TV show he was watching. I looked for any correlation between the news, which can be frightening, and a murder mystery that might instill subconscious fear.
Everything else
I jotted down anything else that perhaps played some role in the alien appearances. These notes included where he saw them, where he sat when they appeared, and his general mood at the time.
I journaled as many details as possible to look for patterns. Dad got so nervous, upset, and often angry when he saw them that it broke my heart. Here was my big, strong father reduced to feeling terrified over something that wasn’t really there. I wanted to help but had no idea where to start.
My goal was not just to reduce the alien sightings but to eliminate them.
A Pattern Emerged
In time, it turned out that my journaling proved helpful in identifying patterns. I started to notice the aliens appeared only in the evening. Had we jumped to a snap conclusion, we might have classified Dad’s behavior as sundowning, and thought it was something we must simply accept. Sadly, too often caregivers ignore the irrational behavior because they either don’t know what else to do or they don’t want to put in extra effort to find the root of the problem. Frequently people treat these issues with unnecessary medication. Giving up was wholly unacceptable to me, so I continued to journal and look for clues.
My brother observed the hallucination began every evening at sundown. I noticed Dad always sat in his recliner with the front door open. Mom and Dad have a one-piece glass storm door, so from his recliner, he could look out the front door and see their white mailbox and people walking by.
I wondered if perhaps someone took a walk at the same time every day and Dad’s mind somehow transformed them into aliens. After watching outside in the evenings, no consistency was noted. He saw the aliens when no one was outside.
More discussions with Dad revealed the aliens consistently appeared at the mailbox. Then, he said, they tunneled under the walkway and appeared again in Mom’s recliner. Mom was in the kitchen cooking dinner each evening when they appeared.
How Journaling Helped Us Learn the Exact Root of the Hallucinations
After reviewing the details recorded in the journal over time, we realized the setting sun shone on the white mailbox outside Mom’s and Dad’s house, creating a glare. Dad’s macular degeneration I mentioned above caused everything to be blurry, so his mind conjectured it must be an alien. We figured out that the “tunneling” Dad described occurred as the sun continued to set when the glare on the mailbox disappeared. They reappeared in Mom’s chair because the setting sun now shone through the kitchen window directly on Mom’s recliner.
How the Solution Became Clear After Patterns Emerged
Here’s what we did: We closed both the solid door and the kitchen blinds each evening before sunset. Now, Dad couldn’t see the setting sun creating the glare off his white mailbox, and with the blinds closed, no alien light shone on Mom’s recliner later in the evening.
To our great relief, and thanks to persistence in journaling, we destroyed the aliens!
Journaling for Caregivers
I encourage you to begin journaling if you haven’t tried it. It’s a great problem solver as I found with my Dad, and can be used in many different types of caregiving situations. It’s also a great brain dump and stress reliever. Additionally, keeping a journal is a wonderful way to remember those funny little things that happen. It cheers me up to read about humorous conversations we had or crazy things we did. You think you’ll remember, but that might not always be possible.
About the Author: Debbie Compton
Debbie Compton is a three-time caregiver for parents with different forms of Dementia. She is a Certified Caregiving Consultant, Certified Caregiver Advocate, Educator for the Alzheimer’s Association, and author of 9 books. She speaks on caregiver and dementia issues, and about bringing hope and laughter to often-stressful situations. Debbie is also the founder of The Purple Vine LLC, whose mission is to empower caregivers with the tools and systems needed to live happier, safer, less stressful lives. Connect with Debbie on LinkedIn Follow her on FaceBook Read her blog and join her tribe.
All of Debbie’s titles can be found here on Amazon.
NOTE FROM DEBBIE:
After my experience with Dad and the aliens, I created a journal called “Write to Remember”. It has lots of room to record tons of details. Inspirational quotes are sprinkled throughout, and some journal prompts for those days when you need a distraction from the chaos. The pages are undated because we don’t need any pressure to write every day if we don’t feel like it. The purpose of keeping a journal is to understand the root of the problem rather than simply treat the symptoms.
Resources:
How to Recognize Hallucinations and Delusions
The Michael J. Fox Foundation
FAQs About Hallucinations in the Context of Parkinson’s Disease
Below are some of the more commonly asked questions we hear about hallucinations and Parkinson’s Disease.
What are hallucinations in the context of Parkinson’s disease?
Hallucinations in Parkinson’s disease refer to perceptual experiences in which a person sees, hears, smells, tastes, or feels things that are not actually present. These hallucinations can be vivid and disturbing.
Are hallucinations common in Parkinson’s disease?
Yes, hallucinations are relatively common in Parkinson’s disease, particularly in the later stages of the condition. They can affect up to 50% of people with Parkinson’s at some point during their illness.
What types of hallucinations are commonly experienced in Parkinson’s disease?
Visual hallucinations are the most common type of Parkinson’s disease. Patients may see people, animals, or objects that aren’t there. Auditory hallucinations (hearing sounds or voices) and olfactory hallucinations (smelling things that aren’t present) can also occur.
What causes hallucinations in Parkinson’s disease?
Hallucinations in Parkinson’s disease are often associated with changes in the brain, including the depletion of dopamine and alterations in other neurotransmitters. Medications used to treat Parkinson’s, like levodopa and dopamine agonists, can also contribute to hallucinations.
Are hallucinations dangerous for individuals with Parkinson’s disease?
Hallucinations can be concerning, as they may lead to confusion and distress. In some cases, they can increase the risk of falls or other accidents. Caregivers and healthcare providers need to monitor and address hallucinations to ensure the patient’s safety.
Can hallucinations in Parkinson’s disease be prevented?
While it’s not always possible to prevent hallucinations in Parkinson’s disease, healthcare providers can help by carefully managing medications and monitoring for early signs of hallucinations. Adjusting medication dosages and considering alternative treatments may help reduce the risk.
Are there support groups or resources available for individuals with Parkinson’s disease and hallucinations?
Yes, many support groups and resources are available for individuals with Parkinson’s disease and their caregivers. These can provide emotional support and valuable information on managing hallucinations and other aspects of the disease.
