This morning on PBS, on a show called Healthy Body, Healthy Mind, they covered something I had never heard of: Pseudobulbar Affect, or PBA, which can also be called involuntary emotional expression disorder (IEED). It can occur in people with Alzheimer's disease, multiple sclerosis, Parkinson's disease, or some sort of brain injury, among others. It is something like a lesion or short circuit in the brain, which can cause involuntary and inappropriate emotional reactions. Someone can cry broken-heartedly, for example, even if they are not really sad, or they could laugh uncontrollably at a funeral when they are really grieving.
In all the things I have read about Alzheimer's for years now, I had never heard of this specific condition. I had heard of people with dementia crying a lot, and wondered how anybody could deal with their loved one being that heartbroken. On the show, they talked to people with this problem who had MS and were able to discuss it clearly, and they said that a lot of times, they weren't any sadder than normal, but this just happened. This uncontrollable and frequent crying does not always mean that they are sad or upset.
I wanted to share this information because I know that seeing our loved ones in distress is very hard for all of us, as caregivers. It may help to know that sometimes they may not be suffering as much as it appears that they are.
My hb had a stroke 25 years ago, and after that, crying was common, though usually when it might be an emotional moment: sees cute dogs, cats, babies, the flag being raised, etc. He also mellowed some, which kids said was a good thing. I believe vascular dementia started then; emotions changed.
Remember Jim Brady, who had that TBI and was almost killed when the target was Reagan? Every time he'd appear on the air, for years, he'd cry about almost anything. I thought of it almost as being as involuntary as sneezing when you look at the sun. I'm not sure they are aware of it. A variety of anosognosia, i guess.
Since several people have been talking about their loved ones crying, and the caregiver not knowing what was causing it, I'm bringing this topic to the top again.
This is happening right now to my DW. This has been going on now for weeks. The crying is off the charts during the course of the day.
I was assuming that she has been more aware of what is going on, (especially since the holidays which were always special to her) so her level of sadness was real. I'm sure there are underlying problems, like PBA, but maybe they really are sad and brokenhearted beyond our ability to comfort them. Which would make us very sad as well. So how do we know which it is? More tests, drugs to make them less aware?
Or maybe we can just cry with them. It's hard, but this is a pretty sad and horrible illness and affects both of us. I just try to get her through it as best as I can. We have an appointment with the neuro, so I'll ask and see what they say.