I often say my first word was “Why?” and I’m guessing it’ll be my last one, too. That natural curiosity has served me well professionally, helping me figure out what’s going on for a person living with dementia, what’s causing a problem, and how to remedy it.

Around the time I learned that magical word "Why?"

Around the time I learned that magical word 

Last week, I decided to include my newsletter readers, asking what topics they’d like to know more about. The responses told me I haven’t been asking enough questions lately. The hands-down duds are topics I tend to talk about a lot: behaviors; medications; navigating the system; and end stage/dying. Glad I asked! A huge thank you to everyone who set me straight 🙂

(By the way, if you’d like to anonymously add your opinion, use this link and go for it. It’s only 3 questions…and the 3rd one is optional.)

I promise to talk way more about what you do want: dementia basics; communication; creating a plan; knowing what’s normal; knowing what to expect; knowing what to do; early stage; middle stage; and late stage.

With that in mind, I’ll start with what to expect, in broad terms. If you want more detailed information about any aspect of the disease process, just email me or tag me on social media and I’ll answer. Deal?
For Your Parent:

A chronic, progressive, incurable, terminal decline over time (usually 8-10 years, but it’s a disease process that can last anywhere from 2-20 years, depending). So everything I mention, just know I’m talking about over time. These four things are the framework for everything else, but I’ve found there’s a lot we as care partners just don’t think about unless it’s specifically named.
For You:

Endless shock and awe, generally speaking. Shock at your ability to be heartbroken, yet still step up and adapt; awe at your capacity for love. But also:

  1. Loss. Loss of “normal;” loss of free time; loss of relationship(s); loss of the dream of how you thought life was going to go before this diagnosis showed up.
  2. Exhaustion. Physically, mentally, emotionally, spiritually. Bone-deep. Self-care has to happen, or you’re screwed (as is your parent, when you fall apart due to all the ways in which exhaustion ground you down to a nub).
  3. Frustration. With the situation, with your parent in a situation, with the system, with people who work in the system, with yourself.
  4. Anger. In a toddler-having-a-meltdown operatic kind of way. Even if it’s all happening internally.
  5. Guilt. Because somehow your brain has convinced you that you should have (fill in the blank with whatever ludicrous idea you want). Should haves typically expressed to me include: should have seen it coming; should have been able to stop it; should have done it differently. It’s worth noting that “done it differently” is the only thing you remotely have control over: you’re learning information now to help you do it differently in the future. (Good for you!)
  6. Shame. When your brain decides guilt isn’t enough and you need another knee-capping emotion to ride shotgun. It’s that nasty little voice that whispers, “Other daughters actually know what they’re doing and not only that, they’re doing it perfectly…so why can’t you?” It must be because you’re not good enough, right? Cue the shame spiral. You’re definitely entitled to your emotions, but also you’re entitled to read The Gifts of Imperfection: Let Go of Who You Think You’re Supposed To Be and Embrace Who You Are. (Not to spoil the ending for you, but it turns out there’s no such thing as a perfect daughter.)
  7. Love far beyond what you thought you had the capacity for. Compassion in action is kindness. Love in action is beautiful, worth the effort, and lives in the moment, treasuring each sliver. Love in action is the active, moment-by-moment antidote to regret. Love is the only part that really matters in all of this, because love is the place where you and your parent are connected and always will be, long after a name is forgotten, long after a last breath. Love never dies.

 

REMINDER: you are never, ever alone! No matter how isolated you may feel, the truth is that I’m right here on the other side of the screen and I am always rooting for you! Reach out any time, social media links are below.

I’m always interested in what you have to say! Send me an email to christy@ctcdcm.com. 

Christy Turner is the founder of DementiaSherpa.com (CTC Dementia Care Management) and has enjoyed the privilege of working with over 1,045 people living with dementia and their families. Follow on Facebook, Google+, Instagram, Periscope, Pinterest, Twitter, and YouTube. Content varies daily across platforms.