BY JENNIFER SIEDMAN

There is a post going around on Facebook about dementia.  On one hand I can appreciate it but on the other I can’t. To me, it lacks recognition of a big audience impacted by dementia – children.

It goes like this …

Someone once said, “When you love someone with dementia you lose them more and more every day. When they are diagnosed, when they go through different stages, when they go into care and when they die. ‘Rapidly shrinking brain’ is how doctors describe it. As the person’s brain slowly dies, they change physically and eventually forget who their loved ones are. They can eventually become bedridden, unable to move and unable to eat or drink. There will be people who will scroll by this message because dementia has not touched them. They may not know what it’s like to have a loved one who has fought or is fighting a battle against Dementia. To raise awareness of this cruel disease, I would appreciate it if my friends could put this on their page for today. A special thank you to all willing to post to their timeline.

I empathize with the people who share this post, and the many who comment about their mom, dad, uncle, aunt who have suffered the ravages of dementia. Dementia is ugly cruel! It slowly peels back and robs you of the layers that make a person whole. It leaves you lonely, misunderstood and incredibly lost when you feel forgotten by the person who suffers from it.

I have experienced it first hand but not in the way most do, with an elder. I watched my son Ben, diagnosed with the rare disease Sanfilippo Syndrome, regress into childhood dementia. I describe it as slowly watching Ben fade away – a person once opaque slowly becoming  transparent. Nine years after his death, I can still taste the fear of  invisibility – him to me and me to him – in the back of my throat.

I want to post a comment to show I KNOW and tell them about my experience with dementia – how it started to rear its ugly head when my son was not yet 5 and how by the time he passed away at 17 it had stolen away his ability to talk, walk, and even support his own body weight. I want to tell them how it left only rare moments of eye contact or the slight turning up of his lip, to tell me that some happiness, some piece of him still resided within. I want to hit the Share button as a way to say SEE me and all the other families whose children will suffer dementia as a devastating dimension of their underlying disease.  

But I don’t.

I cannot help but see the greater unfairness. The fathers, uncles, sisters, mothers lived full  lives. The layers of their lives had a chance to build to whole before dementia slowly started to peel away their essence. In so many pediatric rare diseases, the onset of the “rapidly shrinking brain” occurs so early that the child has not even begun to become the person that a normal life would allow them to grow into. These children disappear before we truly get to know their personality, their passions – the them that makes them who they were meant to be.

As a parent, this is heart-wrenching torture, but as the sibling, it is utterly tragic. Adult siblings who watch their brother or sister move closer to forgetting them, have a lifetime of memories and a deep-rooted knowledge of who their sibling was before dementia robbed them of their essence. The siblings of a child with pediatric dementia are cheated out of the opportunity to deeply know their sibling  – not only because they will not know a lifetime of shared experiences but also because their sibling is disappearing as they themselves are growing. Families are left to fill in the gaps – assigning characteristics and traits to the dementia-plagued child, based on some insight into what the child might have grown up to love, do, or think. This gap-filling is especially hard on the siblings. With so few memories to draw from, many formed when they are young themselves, the siblings live with the pressure and constant fear of forgetting their brother or sister, even before they  die.

And then there is the way children with pediatric dementia are viewed out in their community. These children are not given the forgiveness that is afforded to the increasingly forgetful father. Instead, they are mistakenly labeled as behavior problems. I will never forget the woman in the supermarket who chastised me for allowing Ben to repetitively push the grocery cart into me.  I wanted to yell at her, “He’s forgotten how to stop. He only knows that when his hands are on the handle he needs to push,” but her mind was already made up.

Children who experience pediatric dementia are often also misunderstood in the medical world. Many suffer years without a diagnosis and incorrect or inadequate medical care. Even with a diagnosis, research into dementia is largely adult-based, so pediatric providers lack strategies to help families who are caring for these children. When Ben was 9 and experiencing a two-year long period of little-to-no sleep, and panic attacks so extreme that I thought he was hallucinating (all symptoms of dementia), the solution the medical world offered me was placement in a psychiatric unit (without a parent)  and a regiment of lithium. In those long days I found myself researching Lewy-Body dementia, finding a specialist in circadian rhythms, purchasing sun lamps to tackle sundowning, and suffering the deepest despair I have ever felt over my inability to help my child.

Dementia is lonely for ALL whose loved ones pass into it. And the world certainly needs to stop looking away as families face this unimaginably cruel way for someone to pass from this earth.  Recently, a very wise pediatric palliative care doctor shared these words with me,“While most of the rest of the world flees a sorrow that deep, having someone here or there who at least will not run away and can stand still, –even if they can’t bear to lean in fully—says something.”

So yes, I want to post a comment. I want to ask others to lean in or at least not run away. I want them to SEE childhood dementia. But I can’t post.  I’m too afraid that if I do and they don’t respond,  another layer of my son Ben – the layers that now reside only in my memory and in my heart – will peel away.