My wife’s cousin is an entrepreneur and very good at video production. A series I don’t think he planned on making was one tracking the weekly progression of his mom, currently in her late sixties and suffering from Lewy Body Dementia.
As of this writing, Joe and Molly have appeared in six videos. We get to see them have lunch at local eateries, get coffee, take a short road trip, and talk with each other as he gets her squared away in her room at the nursing home. Sometimes their laughter and tears arrive at different times, sometimes last different lengths, and often hold different meanings.
As Joe mentioned, little information is out there to help people understand dementia and the effects it has on patients, their family and friends, and the many caregivers surrounding them. We have a lot to learn about this disease; Joe mentioned a nurse who had been working in this field over three decades, and has never seen the same case twice. So the series is an educational and touching way to give real-life examples of what people experience, and perhaps prepare those who may someday have to endure this hardship from any perspective.
I have to warn you: Some of it, especially Episode #6, isn’t easy to watch.
As I watched Molly and Joe, I thought about the subject of aging and dying, specifically regarding parents. Considering we don’t have a choice in the manner, I wondered if I would have preferred to lose my mom mentally or physically. If you choose physical, at least you didn’t have to watch helplessly as their consciousness slips away like a fading sunset. If you choose to lose someone via their mental faculties, despite the feeling that you don’t know that person anymore, and they don’t know you, you still have the gift of physical touch, an important aspect of human connection (I’d give anything to be able to grab my mother’s hand again). Both are part of life but both – forgive me for the crude phrase– suck.
One other thing I learned about these videos is not only do we have to be patient with those afflicted with dementia (or any other illness), we have to be patient with ourselves and remember that it’s okay to feel lonely, confused, guilty, and inadequate in how we care for those who need it.
Dennis Prager once heard from a caller who was caring for his elderly and sick mother. The caller said he felt guilty for wanting her to pass on because of the strain he felt from putting his life on hold to constantly see to her every need. Prager said he thought the man was a wonderful son, and a great person. Incredulous, the caller said, “Dennis, did you hear what I said. I just told you I want my mother to die.” Prager interrupted the man and said something to the effect of, “Not only do I believe you’re not a bad person for having those feelings, but I believe you are one of the best people I have ever spoken to.” Too often we focus too much on what we feel like doing, and instead fail to give more value to what we should be doing. Actions matter most. Feelings are nice but, in the end, irrelevant.
Joe, you’ve done a great thing with the videos series with your mom. You’ve shown a side of dementia people don’t often see, and this will help educate those who need it. Not only that, but you’ve shown what a good son and honorable man you are by patiently caring for your mother, regardless of how difficult it is for you.
Well done, sir.
Image: Modified from Screen grab: https://www.youtube.com/embed/nt8C-P8Fc4g