Caregiver Reality Check
As Mom continued to progress through the later stages of Dementia, new medications for agitation and sleep had to be introduced. We tried various alternatives with food, exercise, routines, and special interests, but safety remained an issue. Coming from a proactive and preventive mindset, I did not want medication to be the only way. When it comes to the deterioration of the brain and keeping our loved ones safe, I had to accept this as another twist on our journey.
I reached yet another level of acceptance as this reality check settled into our new normal. I think caregivers know to expect twists and turns on their journey, but the reality is still heartbreaking. My next guest, Brian Moritz, is here with me to share how caring for his Mom from out of state evolved into a difficult reality check.
Brian was born in a small steel town just outside of Pittsburgh, PA, but grew up around North-East Ohio. In 2013, Brian accepted a job offer that moved him to Austin, TX. Shortly after making this career move, Brian's Mom started exhibiting symptoms of Dementia. Brian is the father of two fantastic high schoolers and has an amazing, understanding wife. Brian enjoys mountain biking and racing cars whenever possible in his free time. Although he has returned to enjoying hobbies, it comes with a heavy heart. In August 2021, Brian's mother succumbed to Dementia and gained her angel wings at a young 68.
We all know our parents will pass someday. Many of us grew up with grandparents or neighbors that passed from various issues. We were aware of how it affected our parents. And yet, this circle of life still feels like a shocking reality check when it begins to happen to our parents. As Brian explains the gradual decline his mother experienced, it reminded me about Mom when her hallucinations began. I heard about hallucinations and delusions, but they were rarely connected with Dementia. I needed more details, so my inner researcher took over, yet again.
What are hallucinations, and what causes them?
Hallucinations are experiences of something not really there that involve any or all of our senses. The most common type of hallucination is visual experiences for those living with Dementia. The most common types of Dementia induced hallucinations are Lewy bodies and Parkinson's, yet those with Alzheimer's or Frontotemporal Dementia may also experience hallucinations.
Lewy bodies appear in the brain's nerve cells as protein clumps and are named after the German doctor, FH Lewy, who first identified them. About 1 in 10 with Dementia has Lewy bodies. Because of the build-up of faulty proteins, the important chemicals needed to send messages around the brain are reduced. Like the Tau Proteins causing Alzheimer's, this build-up breaks the connections between nerve cells, eventually causing the cells to stop working.
I want to bring your attention to the build-up because so many dismiss Dementia as a disease of old age, but it begins to form far earlier in life than most are aware. Lewy bodies and Parkinson's cause problems with thinking, movement, mood, and how well the body works. For those living with Lewy bodies, the symptoms begin before or around the same time problems with movement develop. For those living with Parkinson's, the symptoms develop many years after the problems with movement started.
We often spend the first stages of Dementia in denial that our loved one has any form because it is a painful reality check. I hear from more caregivers who have both parents alive struggle with convincing them to transition one or both to retirement communities, even though they know it is the right choice to make. Although the choice may be right or best for their loved one, I believe marriage vows, "in sickness or health," stop them from proceeding. Lack of knowledge about the pending journey keeps many drudging down the same path in hopes they die before their loved one, so they do not have to make those hard decisions. I think Mom expected the same outcome, but I had to make the choice for memory care for her.
As I adapted to Mom's changing world with more environmental restrictions, I realized the odd statements were connected to broken memories and hallucinations. I tried to find a Gerontologist who felt comfortable talking with me on the show about hallucinations, but all responded saying they did not feel confident addressing this topic. So what I share with you now are more areas I have learned through trial and error with Mom.
If your loved one is experiencing hallucinations, then please consider the following.
1. Have your loved one's eyesight checked for floaters, which are common, while other sight problems are not. There could be damage to the Retina, Optic Nerve, or Macula along the back of the eye.
2. Is your loved one experiencing other health problems like kidney or bladder infections?
3. Does your loved one overindulge in alcohol? The Wernicke-Korsakoff syndrome is also referred to as Alcoholic Dementia caused by thiamine deficiency.
4. Discuss all medications your loved one takes with their doctor to notify them of changes causing hallucinations so the dosage or type can be adjusted. If nothing can be done, understand that end stages will need all hands on deck as these changes worsen. Mom had to be switched from Temazepam to Trazodone to stop most of her hallucinations.
5. Do not try to reason with your loved one, and learn the art of improvisation instead. Remember, we are stepping into their world, regardless of what they think it has become. You can pretend to see or hear what they can to help create a moment of calm or defuse agitation. Perhaps, ask them to draw what they see or paint their image. Even paint colorful blobs, their attempt becomes a positive distraction.
6. Do not try to diminish their fear or belittle their experiences because what is real to them is causing far more than you can imagine in their entire system reacting to a surge of cortisol or panic attack in progress. Try to introduce a mantra they can revert to or recognize once they hear it from you. "I am loved, I am safe. I am loved, I am safe."
7. Hallucinations may happen because of broken memories replaying in their mind. A misfiring of a post-traumatic episode from childhood or occupation may create the need for constant reassurance they are safe and surrounded by people who love them.
8. Look in their room at night, from their perspective, laying on their bed to see what might be casting shadows or creating scary images. I think it is safe to say we all have some kind of childhood memory of the boogie man or monster under the bed.
9. Try to speak in soothing tones, stay calm, and carefully gain eye contact with them until you figure out what your loved one is reacting to or causing the hallucination. Try to introduce yoga as a daily routine to begin before their pattern of hallucinations begins or as a wind down for the day.
10. Suppose your loved one acknowledges hearing voices, attempt talking with them to join in that conversation, or redirect the conversation so they may not focus on the voices. Redirection may be to start a different activity during the day with the help of music or pet therapy or an article to hold during the night like a blanket or stuffed animal. Mom has a Snoopy dog.
11. Unfamiliar environments may cause unwelcomed memories or confusion to regular routines. Avoid removing your loved one from a memory community for holiday celebrations or outings unless they cannot be avoided, like trips to the doctor or dentist. Introduce simple computer games on a Kindle tablet for them to enjoy in an unfamiliar environment. They will find a pleasant way to engage in a new environment rather than panic.
12. Be aware of sensory overload. Sometimes tv is left louder because hearing aids are not worn or adjusted may cause agitation from excessively loud noises. Be mindful of what they are exposed to on tv because even the news can trigger a hallucination or delusion.
13. When you run out of ideas for redirection or improvisation, pray together or over your loved one. Read scripture to them and ask them what they think about the passage.
Thank you for joining in and listening today. I hope this episode gave you more food for thought. Until next time, BE PROACTIVE. Take care, everybody.
Intro: Vacation Time by Khris Paradise
Outro: Misty by Khris Paradise