Five years ago we got the daunting news: Popsicle has early onset Alzheimer's.
The news was devastating. Not entirely unexpected, but devastating nonetheless. The road's been long and difficult to navigate. At times narrow and daunting, other times wide and open to all threats. It's been times of fighting the tide, pretending it's all good in the hood, despairing over the ugliness of this process.
We tried treatments. All kinds of them. Experimental, holistic, commonplace. Oh how we tried. But the brain is a mystery, his disease more so, and us, helpless.
People don't know much about memory disease -Alzheimer's, dementia, and all the other names it goes by. They think it only happens to old people, that it means forgetting names or phone numbers, that it isn't terminal. So today is a day of education for ya'll, a day that'll keep you in the know and save you face one day when someone you know is diagnosed.
1. HOW LONG WILL THIS TAKE?
The answer always is: we don't know. Always. Some doctors try and give timelines, some professionals say there's a specific pattern the disease follows, some people want to say it'll be forever. None of this matters. The disease happens by it's own volition every. single. time.
Usually it's 5-10 (possibly even 15) years from the date of diagnosis. Factors like age, health (aside from the brain), level of activity also come into play. So far, we've been at this for five years. That five years has looked like early signs of confused memories that, after a few years, turned into rapid decline then plateau, rapid decline then plateau (sort of like what happens during weight loss).
Right now we are in the later stages of the disease so changes aren't as obvious or marked to us, though there are moments of identifiable decline. Maybe this is because his language is so muddled and his personality so absent that loss feels and looks altogether different.
2. IS IT CURABLE?
Modern medicine knows a lot. One thing it knows very little about is the way the brain works, heals, degenerates. That said, there are medications to attempt at slowing the process, brain games that keep connections between neurons strong, diets that supposedly assist in brain health, but there's so much conflicting research and opinion. It boils down to the fact that once brain matter degenerates, recreating it is a million shades of challenging.
No, at this time there is no cure.
3. DEMENTIA ISN'T FATAL, IS IT?
No. And yes.
No, dementia itself isn't fatal or listed as a cause of death. Yes, the brain forgets life sustaining functions that lead to heath crises that are fatal. Sometimes that's swallowing, other times it's coughing or breathing or eating or maintaining body weight.
No, dementia won't kill you directly, but it'll open the door BIG AND WIDE for another issue that will.
4. WHY A MEMORY CARE UNIT?
The hardest part of this journey for our family was the decision and process of moving my dad out of the home. However, safety for all involved is key. Dementia steals the sound mind taking with it reasoning, understanding, critical thinking. Trying to explain to a dementia patient that they need to stay inside because it's cold, or eat to sustain themselves, or go to the soccer game because we all are is hard, tedious, and frustrating for everyone.
From personal experience, Popsicle would grow anxious and relieve his fears by walking, walking, walking, walking. Sometimes for hours on end, sometimes in the dark of night, sometimes in the pouring rain. He wouldn't know to tell us he was leaving, or that he'd come home. We knew he couldn't continue to walk in our neighborhood with no streetlights or sidewalks. We feared he wouldn't be able to find home again, to communicate who he was to a stranger if lost, or remember who is safe to follow.
5. DOES HE REMEMBER YOU?
No. Yes. But mostly no.
No he doesn't remember our names. (He hardly remembers his own anymore.) Sometimes I don't think he remembers our faces. But I do believe that deep inside of him there's a piece of remembering there. Like his spirit that lies deep under the foggy blanket of dementia can sense us, but naming us, placing us, acknowledging us doesn't happen anymore.
This is a part of the memory loss process -forgetting those who are dearest to you. There are stages to this loss (well, to all of it really) that start with confusing identities (like my mom and I), then forgetting names, then associations (like that I'm his daughter), then it's simply just the process of recognizing someone whose face is familiar.
6. DOES HE KNOW WHAT'S HAPPENING?
He did for the first while. He'd become frustrated when words just weren't there anymore. He'd lose track of what he was doing and you could see the pain that caused. He would put the wrong fuel in his truck or get lost in familiar places and have to call for directions. I can't imagine the terror that would cause in his heart and mind.
Then he didn't. After he surrendered his license he forgot about the truck and motorcycles he used to drive. Then he didn't remember that my mom and I were two different people and he'd get uncomfortable with the two of us in the same room. We moved him and he didn't ask to come home or say that he missed us, because he didn't remember before. He didn't know what he'd lost or understand the loss to come.
7. IS HE SUFFERING?
He isn't. At least not in a painful or emotional way. Mostly because he's unaware.
Are we his family? Yes. Not because we're losing our memories and minds, but because it's so damn hard to watch him be stripped of every last bit of Popsicle-ness. His dry wit, love for life, and strength were all what made him so lovable, now he has none of it and we grieve the way he disappears a little bit more each time we visit.
Dementia is ugly. There's nothing beautiful or wonderful about it. The redemption in all the mess is the community that's gathered around to love on our family.
So, love on yours please.
And, when someone you know is diagnosed, remember that there is beauty in all the tangled ugh of it all; you simply need to look up and around and away from the disease.