Dreams, Meltdowns and Dementia

Author: Rose Ong (Living With Young Onset) |

Assisted Living Home Richmond Hill

The other day, I was reading an article by a UK doctor, Dr. Jennifer Bute. Dr. Bute was been diagnosed with Early Onset Alzheimer’s in May 2009 and has had a profound attitude in the way in which she views Dementia in general. Where many people think of dementia as a curse, Jennifer is very upbeat and positive and sees dementia as an opportunity to be embraced.

Dr. Bute has a Face Book page called “Glorious Opportunity” as well as video clips online, where she takes a Christian perspective on ways in which to comfort and calm Dementia persons when they experience a “meltdown”.

Meltdowns can be caused by a number of things and Bute believes that meltdowns happen for a purpose and has to do with communication or the lack of, as severe phases of dementia leave people with the inability to express themselves. She says,

‘Every communication has a purpose and the challenge is to discover it. No word or action is meaningless, what sounds like nonsense or repetition of the same question or sentence is, to express a feeling, to show a need, to give information or to get a response. What appears to be an inappropriate response or action may be a form of communication.’

When I first heard of people living with Dementia having hallucinations, (which I believe Bute experiences from time to time) it made me wonder if they also had dreams that were so realistic that they believed they were true? I was curious, because I’ve had dreams that I thought were real.

My dreams have always been very vivid, but in the last few years, I’ve had dreams about doctor appointments that I was convinced were real. I would wake up in the morning and have the impression that I had forgotten to write an appointment in my calendar book. I’d check the book and sure enough, it wasn’t there. So, I would write it down and go my merry way to the next obstacle in my path. Two or three weeks later, I’d tell my hubby I had an appointment, and we’d go out to it (pre-pandemic), only to find there was no appointment. This happened twice with my hubby and once with each of my sons before I got the message that I can’t rely on my memory to retain anything that I don’t instantly write down before I hang up the phone. I still have the dreams, but now I know that they are not real and I can avoid the meltdown that eventually results. That is the closest I have come to a hallucination. That I know of.

Meltdowns are not something most people are comfortable talking about, but they are a common expression of frustration experienced by people with Young Onset Dementia (YOD). It becomes evident to the person with YOD that they can’t cope with a situation, or a conversation or even just a loud, noisy restaurant. For whatever the reason and whatever the place or the circumstances, the YOD person can not focus on anything going on around them. It all becomes confusing and unrelatable.

For an example, whenever I’m on the phone, my hubby insists on trying to get my attention and talk to me. When this happens, I go ballistic, because I can’t focus on either conversation. I usually give him the talk-to-the-hand gesture and double down on listening to my caller. You would think that eventually, he might get the message, right? No, he continues to do the same thing anytime I’m on the phone. And as soon as I get off the phone, I explode with frustration. I’m sorry, I know how pathetic I sound, but I’m trying to expose the affects of dementia in my life. Maybe somebody reading this has had a similar experience.

Just a few weeks ago, my “better half” purchased a laptop for me. Lovely guy, right? I have been exclusively using a tablet for games, email, - everything actually, for 6 years. I had to relearn how to setup and use this new device. To those of you who think this is an easy exercise, you obviously don’t have YOD. Over the course of 2 weeks, I had meltdowns, daily, culminating with a final H-bomb of a meltdown, where I threw the laptop to my hubby, marched upstairs and slammed our bedroom door 3 times, before dramatically throwing myself on our bed, sobbing. Not a pretty picture. I vowed to never pick up that insane laptop again. Basically, I got tired of hearing the men in my life say, “This is so easy; I don’t understand why you are having so much trouble with this…” Well, guess what, this device that was “so easy”, took both my hubby and son 3 hrs to restore all my files and set it up the way I wanted it! They stopped talking about how easy it was…oh, and my laptop and I have resolved our issues now.

Dr. Jennifer Bute has an insightful list of suggestions on how to cope with and calm a YOD person in the midst of a breakdown, using herself as an example:

  1. Introduce yourself. Please don’t ask me questions.
  2. Simplify or calm my environment.
  3. Reassure, and show me what I should do. Don’t overwhelm me with words.
  4. Remove or reduce stress triggers - Noise - perhaps turn down or off Lighting - switch more lights on or off. Too many people - take me to a quieter place.
  5. Change to a more familiar activity or make a cup of tea. Perhaps remove me from the situation and take me for a walk or a car ride. Music can calm and reassure.
  6. Find my centre to focus on; that thing that takes me to a place of peace. (My words, not hers)
  7. Talk about hobbies, passions, or subjects that meant a great deal to me earlier in my life.
  8. Videos or pictures of events or outings.
  9. I might not be able to distinguish dreams from reality. Please don’t laugh or call me a liar.” Walk with me.