Navigating Family Life With Alzheimer's
Last updated: October 2023
Interpersonal relationships are hard, at least, I think so. We all come into them with our own experiences and feelings, and a family is no different. When a diagnosis of mild cognitive impairment, dementia, and Alzheimer's overturns the apple cart, it's hard to find your footing again as a family and get everything back on the move.
Here are some dos and don'ts from my personal experience of living in a family affected by Alzheimer's.
Find a way to process your grief. You're going to have feelings, you're going to mourn the things you think you won't have and the path of life you may not be able to take (even though none of us have nailed that magic 8 ball thing), and deal with them. As soon as you're able to process those feelings in your head and your heart and come to a place of peace with them, the sooner you'll be able to be show up for your loved ones and care partners.
Remember your loved one is still with you. Grandma/Grandpop/Mom/Dad/Auntie/Uncle is sick, but they are still very much here with you today. With such a finite time on this Earth together, it’s important not to lose sight of that. Give them your time. Find accessible activities that you'll both enjoy to celebrate your awesome connection.
Talk about it. Bring the big scary disease into the spotlight, have conversations about it among the adults and the younger people in the family. Kids likely won't have the same frame of reference for Alzheimer's that adults do, they won't know this isn't the type of sick where you stay home from school and feel better in a few days. Consistently talk about it. Perhaps you'll explain why you have to go to Grandma's and Grandpa's even though they might not want to, discuss why Poppop keeps calling Mommy someone else's name, or engage about how Mommom was having a hard day with her sickness, which made her cranky and that outburst had nothing what's so ever to do with little Suzy.
Lose yourself in the role of being a care partner. At all points in life we wear different hats: sister, father, nurse, husband, teacher, friend, etc., and the role of care partner tends to be the large floppy beach hat that sits on top of all the other ones. Remember that while you're fighting for the comfort and the ease of your loved one with everything you've got, that your comfort, your ease, your life is not a negligible variable in the equation.
Allow Alzheimer's to define your relationship with your loved one. Before Alzheimer's there was William, Tom, Nancy, Patricia, wholly formed human beings who gave you kids, life, and love. Before Alzheimer's my Poppop was an authority, ruling with an iron fist; before Alzheimer's my Poppop was putty in my chubby little hands, allowing me to want for nothing; before Alzheimer's my Poppop took care of his family, putting a roof over the heads of each child who needed it. As he battled with Alzheimer's, I respected him with my time and attention, addressing him, asking him questions, inviting him into a conversation or an embrace; as he battled Alzheimer's, I accounted for him in plans, asking him to come to my college graduation or Tommy's wedding and coordinating the logistics to make it happen; through his battle with Alzheimer's, I continue to give of myself to those he loved.
Right the apple cart
My Poppop lived in a simpler time. In fact there's an area in a suburb of Philadelphia that's so packed with congestion now that it's hard to believe that only a few short decades ago, one might have found my blue-eyed Pop walking around it with his wagon collecting apples, which he'd eat (always preaching to us about his pristine chompers) and I'd guess hustle sell (since I know my Poppop). So, I'm pretty confident in these dos and don'ts, because if anyone knows how to right an overturned apple cart it was him.
Have you or your loved one been diagnosed with Mild cognitive impairment?