So, my mom has Alzheimer’s disease. It probably really started in her forties, but we began noticing it around 2005 when she was just 50. I had graduated from UGA in December of 2004; I was living in my parent’s basement, and mom and I were trying to enjoy planning mine and Darian’s wedding together. I say “trying to enjoy”, because mostly it really seemed to stress my mom out. This was weird, because my mom used to be freakishly good at anything with lots of details, making lists and charts and calendars and systems. She was smart–really smart, with a master’s degree in speech pathology and always interested in learning something new.
But with the wedding, all of a sudden she had a hard time keeping up with everything, or would miss an appointment that we had set up, or would need to go over something easy like tablecloth colors multiple times to get it straight, only to need to talk about it again the next day. So unconsciously, I did more and more myself, concealing decisions that needed to made just so that she wouldn’t have to stress out to try and remember it. I remember a fight (and mom and I NEVER fought!) the day before the wedding. She wanted to be able to go check over the reception site to make sure everything looked okay on the Big Day, and I wanted her with me doing mom and sister stuff. There wasn’t time to do both. I talked her into sticking with us, but in hindsight, I realize that she probably couldn’t hold in her brain many of the details of what we had decided about tables, flowers, etc., and just wanted to ease her mind that it looked beautiful.
The wedding was beautiful and happy. Instead of a groom’s cake, we had a 25th anniversary cake and toast for my parents, whose wedding date we almost ended up sharing. But afterward, mom’s memory got worse. She began to get lost in familiar places, no longer could read maps, and needed several lists just to get through the day. Eventually she was diagnosed with MCI (mild cognitive impairment) and early-onset Alzheimer’s soon after. Needless to say, it was a hard time for everyone–made harder by the fact that my mother’s main coping skill was to never talk about her disease, and/or pretend she didn’t have it.
Ten years later, my mom spends her days mostly sitting at the kitchen table, doing puzzles meant for two year olds, and coloring pictures meant for a similar age group. She knows that she still likes dessert, <smile> and being outside, and listening to music. She no longer recognizes the people most important to her as her husband/kids/grandchild/friends, but instead as rather nice people who keep showing up and smiling at her and trying to talk to her. She has increasing difficulty with many aspects of basic, daily living. She still lives at home, a choice we have only been able to make for her because of our four amazing caregivers–CNAs who rotate in and out of the house around the clock–who keep her safe, feed her, and help her with all aspects of daily living and personal care. (My early 30s advice to you about getting old: BUY LONGTERM CARE INSURANCE. You just never know!)
I don’t talk about my mom’s illness a lot. First, it’s sort of uncommon at my age to have a parent with a terminal illness, though there are of course some who do/have, or are even younger than me and have gone through this. Second, Alzheimer’s is a unique disease–I’ve only ever known one other person whose parent had the early-onset form, and still, she was 10 years older with kids in middle and high school, not preschool. Unlike cancer with its aggressive treatment plan and the slash and burn effects it has on a person’s body, generally with a shorter-term prognosis, Alzheimer’s is like a slow, grinding, marathon of a disease. The only similar ones I know of are M.S. and Parkinson’s, which are still different in that people still retain their mental faculties for a longer time. And lastly, I don’t tell people my mom has Alzheimer’s because usually the first thing I hear when it comes up is some form of “Oooooh yeah. My nana (or uncle, or cousin twice removed) has Alzheimer’s too.” And then they tell me all about their nana’s Alzheimer’s. And you know what? It’s not that I don’t want to hear about it. I know good and well how sucky it is to have someone you care about become progressively demented and lose their minds. I have serious empathy for anyone dealing with this crazy disease, and yes, everyone pretty much knows someone who has had it.
But here’s the thing: it’s not the same. While I’m sorry your nana has this disease…she’s your grandmother. Not your mother. You expect that your grandmother is going to get sick from something and die. And it is sad when that happens, but it is the natural way of things. Your nana is/was in her 70s or 80s, not her 50s. You still had years of fond memories with your nana (hopefully!) like I did with my grandmother, who is still living at 85–things like sleepovers, shared vacations, baking cookies, presents and cards lovingly selected at birthdays and Christmases, etc. My child was lucky to have my mom be cognizant enough to hold him when he was a baby, help in small ways with his care, know his name for about two years…and that’s about it. She still laughs at the sound of his play and little kiddo noises when we visit, and occasionally will reward him with a rare smile. But that’s it. So when I hear you say that XYZ relative has Alzheimer’s, I truly, truly, empathize with you, but inside I am thinking: “listen to what you are saying to me! This isn’t the same thing!”
I imagine that if you are someone who has lost a loved one too young to cancer perhaps…a spouse you expected to grow old with; a child you expected to watch run and play for years to come; a parent who should have had many more years to spend with you and your kids–the list goes on. I imagine that you have had the same experience as me, where you are either vulnerable enough to share the fact that this person you loved had/has this horrible disease, or you need to answer a question about it out of necessity, and because it is a well-known disease that many people have had experience with, you get a response related to that person’s experience that is meant well…meant to empathize, but doesn’t quite hit the mark.
I’m not trying to be all high and mighty, because I’ve done it too–in fact, just last week someone mentioned a close family member who had a disease similar to my mother’s, and what was the first thing out of my mouth? “Oh, I know how you feel…my mom has early-onset Alzheimer’s.” And the person I said this to was lovely and kind, and started asking me questions. She learned way more about my mom than I did about her dad because we suddenly ran out of time to talk so I couldn’t return the favor of listening about her experience.
So here is my challenge to you and to myself: try your best as you walk through life to be an empathetic listener. Instead of jumping to share your experience when someone tells you about a loved one with a disease, ask the person questions. If they have brought up that person with you, it means that they are okay with you asking about it in gentle and tactful ways. Even if you think you are saying or asking the wrong thing, you probably aren’t, or the person will readily forgive you if you do. It is healing for most people to talk about their experiences with others. Then, after you have learned something about their experience, you could say something about your own loved one, while acknowledging that you may not truly understand what they are going through–ESPECIALLY if the situation is not the same, or if your person is not as close of a relation. I think that is the difference between empathy in the objective sense, and true, loving, empathetic listening.
With you trying to live empathetically and to love people well,