Active Imagination or Real Problem?
Dementia is not a disorder which has a sudden onset. Our loved ones don’t just spontaneously begin exhibiting symptoms of memory loss or personality changes. Instead it begins slowly, so gradually as to hardly be noticed until eventually the would-be caregiver realizes there is a mountain of evidence that can no longer be ignored.
Case in point: in the early ‘90s, my Grandma must have told me literally hundreds of times that her brother-in-law had died.
“Leah, did I tell you Lester died?”
“Oh, I wanted to let you know Lester died.”
“Well, we got some bad news: Lester’s died.”
“Lena called to tell me Lester died.”
It began shortly after the actual event of Lester’s death: every time I called Grandma or went over to visit her, I was informed that Lester was gone. Initially (when I was still in that blissfully ignorant stage) I would boldly reply back, “Yes, Grandma, you told me about it last time we talked.”
Then in the summer of 1995 she said she’d heard on the news about the recent death of a movie star, but she couldn’t remember the name; the actress was blond, Grandma said, and she’d reportedly committed suicide. Turned out she was telling me about Marilyn Monroe.
By December 1996 she didn’t even know it was Christmas day (she said there hadn’t been anything on TV about it); then she asked me how I got her phone number. But by January 1997 it all came crashing down; in addition to my grandparents’ impromptu road trip which resulted in their being stranded two hours from their home, as well as Grandma’s glaringly obvious inability to have “normal” conversation, she seemed totally unaware that she had a lens missing from her glasses, and most shocking of all, while sitting in her own chair in her own house, she announced to Grandpa that it was time for them to go because they had to be “getting back home.”
So, question: How on earth did I not realize that something was happening to her?
My answer: Weeellllll….
The truth is I did realize something wasn’t right, but I had no idea what it was or what to do about it. I knew I was growing more and more concerned about the well-being of both Grandma and Grandpa, but I didn’t know how to begin to broach the subject that it might be time for me to help them.
My grandparents had always been fiercely independent, and the idea that they would just willingly let me start handling their business sounded ridiculous—even though they had already appointed me to serve as their representative with durable Power of Attorney—something they had done just in case they should ever need it….
I’ve come to learn this problem is a fairly universal one for family members of dementia patients: I knew my grandparents needed help, but they didn’t know.
Every family’s situation is different, but because undiagnosed dementia can pose such major risks, I urge you to take your loved one to their doctor for a complete physical as soon as you begin to suspect something’s wrong.
Tell Their Doctor Your Concerns
Mention the behaviors you’ve seen that are causing you to wonder if dementia could be in play. You may want to do this away from your loved one so they don’t become alarmed—or irate. This isn’t intended as a “go behind their back” maneuver; it simply allows you a peaceful way to ask a medical professional to evaluate both your observations as well as your loved one’s cognitive abilities so they can receive the care they may need—and that they deserve.
You Can Also Talk to Other Caregivers
Maybe you know someone who has provided care for a loved one with dementia. Seek them out and pick their brain about their journey. Ask how they knew it was time to step in and what action they took to get started. I recently did a presentation for the Alzheimer’s Foundation of America’s “Educate America Tour” where I shared my own story and some of the tips I learned along the way; you can watch it here: https://www.gotostage.com/channel/c77a965e5d774cef9905bd5d2172db2a/recording/394d82846f41484e9194a24ce54ba709/watch
Listening to an experienced caregiver can help you feel less alone—and you can learn from their experience. If you like reading, visit www.alzauthors.com to see the books of more than 250 authors, each with personal experience as caregivers for loved ones with some form of dementia. My own book, Goodnight, Sweet: A Caregiver’s Long Goodbye, is part of the AlzAuthor’s collection. Select the book(s) you’re interested in, click on it and you’ll be directed to the Amazon page where you can order it.
Use your web browser to search reputable websites containing a wealth of information on providing care for a senior loved one.
The Alzheimer’s Foundation: www.alzfdn.org
The Alzheimer’s Association: www.alz.org
Web MD: www.webmd.com (use the site’s search bar to look for specific articles on Alzheimer’s/dementia or other cognitive impairment)
There are a number of well-documented and trustworthy sites for you to consider—many more than these I’ve listed, but this can get you started. The more you understand about your loved one’s condition, the better equipped you’ll be to work with them in a patient and understanding way. It can also help you cope with the demands of your caregiving role.
The first step in surviving this journey is to acknowledge there’s a need for you to be a caregiver in the first place, and even when it’s hard, there’s a sweet joy you will get from knowing you’re providing help for your loved one; in an odd way, it can breathe life back into both of you.