How I Wish We Handled My Grandfather's Diagnosis
It took a while in my family to find a new rhythm once Alzheimer's was a part of the equation. Questions and queries, some vulnerable, some exposing the cracks of our merry band of brothers, and some just plain sticking their head into the sand.
"So, what do we do next?"
"Whose going to take care of us?"
"There's no way we can tell him he shouldn't drive!"
When there's a crack in the edifice of the institution that has been holding your family together with his own brute strength and problem solving, there's bound to be some stumbles along the way. That's what I tell myself looking back on how we coped, with grace and a little humility that comes with the benefit of hindsight being 20/20.
But seeing as how my hindsight may be your present-day experience, let's get into it!
Have a conversation
I was an inquisitive pre-teen when my Poppop was initially diagnosed. But this is information that I've come to from conversations with my mom since his passing. At the time I knew something was up. In my best Harriet the Spy–inspired sleuthing, I kept my eyes and ears open to suss out what was going on.
I know it must have been scary for my mom and her siblings to consume and process this information about their dad, and then to have to process and regurgitate that information in consumable pieces for my cousins and I, apparently proved near impossible. Perhaps this sample script will help.
"Hey Shannon, I have some news about Poppop. He went to the doctor's the other day because he's been a bit forgetful sometimes, maybe you've noticed. The doctor says that this forgetfulness is probably going to continue, he's got something called dementia. It's important for you to know that Poppop loves you and cares about you and he isn't going anywhere today, but just like he takes care of us when we're sick or have an injury, we're going to need to give him some extra love and patience to help him feel better."
Come up with a plan
Dementia and Alzheimer's disease care are constantly evolving spaces. Innovations and therapies are being worked on and approved by the FDA, scientists are hypothesizing and gaining more information about it. In short, what you think you know about Alzheimer's and dementia is likely out dated, as of initial diagnosis. Take a minute, breath, and seek out answers.
Organizations like the Alzheimer's Association provide resources and education and are a good place to start. From there, it's a battle of phone calls and answering services and being put on hold to identify the specialists and advocate for yourself or your loved one as you embark on this journey.
I know it's scary and it's easy to go within yourself out of fear instead, but these beginning steps are of the utmost importance to preserving memory, independence, and options for as long as possible, so try your best.
This may not be your cup of tea
Perhaps the to-do lists and the conversations aren’t your cup of tea. If you're a team of 1 trying to tackle this and that's true, then I'm so sorry. In our beautiful interconnected lives of today, I'd like to believe that most family systems are going to have a team of people who all play a roll. Look around, your team could be your neighbor, your lifelong friend, or the members of your support group. Each member of the team can have a role, share a little bit of the to-do list, and have a few of the hard conversations so we can all get through this together. But you don't get there without having the conversation and developing a plan.
My hope is that through conversation and resilience, we will develop an army of people who refuse to be quiet and sit in a corner or hide from dementia and Alzheimer's, cause we're all needed in the fight.
Which, if any, of the following most often trigger agitation in your loved one living with Alzheimer's disease?