That Damn Dementia!
“I have to remember that dementia is a terrible, nasty, heart-wrenching, punches-to-the-gut disease that brings me moments of sorrow, frustration, joy, laughter, connection, and bewilderment as I care for my mom - a person I dearly love who will eventually stop being someone I know.”
— Adele [what I say over and over to myself with every passing day]
Passion with Purpose
This information is for anyone who knows, cares, or loves someone who has dementia. These are stories you may relate to. Practical tips and tricks that are hopefully helpful. And motivational messages when you just want to scream “that damn dementia!”
-
I’m a researcher and philosopher at heart so you can imagine some of the resources you will find span from the greatest neuroscience schools and universities to the deepest of spiritual writings. I find this combination helpful because dementia is not only a disease of the brain but a journey of loss and grief.
Admittedly I came late to the loss and grief side because I was overwhelmed with the practical needs and medical information. But I found it so important and something that many people were not getting a grip on that I attended the University of WI-Madison to earn a certificate as a Grief Support Specialist.
My point of view on this journey is as a child whose parent has Alzheimer's - my mom. I happened to be living with my parents when she started to show symptoms so I have been there from the start. I cared for her while I lived with them and after I moved out. I was there when she was alone in Independent Living after my dad died. I was there when she needed to move to Assisted Living and now I am here when she is living in Memory Care.
Anyone who cares for a person with dementia will tell you that even if you don’t live with the person there is still a very real and impactful responsibility. For me that includes weekly lunch visits, trying to celebrate holidays and special days, keeping communication with her brothers and their families, relaying her status to my brothers, holding the Power of Attorney for both her Health and Financial decisions, and preparing for her funeral. There is much more I do and have done over the years while she has progressed, but I’ll write about in posts.
-
They say some mothers and daughters are two peas in a pod. Mom and I aren’t. Don’t get me wrong. She taught me many important lessons. I believe many of my values and ethics come from the behaviors she modeled and beliefs that she held. She taught me the importance and value of an education, common-sense knowledge, and lifelong learning. She showed a kind, caring and loving spirit, which I hope I have inherited and displayed. She opened her home to the strangers I brought home and to the stray cats who found their way to our patio door; I still welcome strangers to my house and always available to cat sit.
She and I were close, but not best friends. Having my mother as my best friend would not have worked. I wanted (and needed) a role model and a safe person to always come back to, one who truly loved me unconditionally. I know she was proud of me and because of having her as a foundation I excelled at many things, including the freedom to fly. She did, however, keep her “mom’s phone line” - what I called the extension of the umbilical cord - connected to me no matter where I moved or how old I was. She never scolded, yelled at, judged, or belittled me. At the end of the day, no matter what I did she was my mother and she loved me.
As much as people said we looked alike, which always made us laugh since I’m adopted, I think it was our mannerisms and professionalism. I mimicked her stance, facial expressions, dress and speech when I was a girl. She would walk in the door after work wearing a suit with high heels, full make-up, carrying a brief case, later a computer bag and cell phone. I correlated her dress and actions to professionalism and intelligence - why wouldn’t I want to look like her? You can probably guess that quickly changed when I reached high school, but maybe not as much as you think. More on my goth years to come.
Mom once told me that she believes she was born in the wrong decade. From the stories she told me about her college days and in her early days as a teacher, she was probably right.
She and her sorority sisters would talk about other careers, not just teacher, secretary or nurse, the only ones really available to them. She told me most women went to college to get their “Mrs.” degree, but not her. Career first. Husband second. And the husband wasn’t an option but felt like a graduation requirement. Her BA in education was not wasted, but I think many of her aspirations were squashed because of the pressures of her generation.
Her first jobs as secretary then teacher were “what she could get back then.” Positions she was proud to hold and excelled at but not fulfilling any passions. Along with the lackluster feeling she had about these jobs, they of course paid next to nothing because “it was a woman's job.” And to finalize this point, when my parents adopted my brother in 1965 she had to agree to give up any job she had outside the home! She did but filled her time with volunteering and joining what she called a “feminist book club”, where they actually read books, not drink wine. More on her feminist tendencies to come.
We enjoyed similar things: the love of Packers football (she was born in a small town on the outskirts of Green Bay), popcorn with butter, decorating for Christmas, a good documentary film, the love of jewelry, walking (no hiking for her), bonfires, sitting by a lake, getting lost in a good book, fresh sheets on a bed, fresh vegetables from a garden, fresh fruit especially raspberries and watermelon. She never had a sweet tooth until a few years ago when Alzheimer’s changed her cravings and sense of taste; I like to say she has come to the “dark chocolate side”.
As much as we were alike, we were also very different. Mom was not one to crack a joke or add something witty to a conversation versus where I have been known to do both. Mom never thought of herself as pretty, which led her to wear makeup even when she went to the gym. I’ve always been described as “cute”, and I certainly had my “cuteness” back in the day. I’ve never had a problem advocating for myself, speaking up for others who cannot speak for themselves, or protesting when it was time. I don’t think my mom ever protested anything. Not because she didn’t feel strongly about a current wrong, but I am sure it is because she thought of it as something she “shouldn’t do at her age or because of her position within the community.” I did get her to wear a political t-shirt once, which she soon covered with a cardigan.
I know I’m talking about her in the past tense, like she is dead. She’s not. Well, in some sense she is but that’s due to the progressive nature of Alzheimer’s. Sometime in June of this year (2026), I remember having this feeling that her spirit - what made her Lynn Revoy and my mom - left her body. Due to the loss of skills and abilities, I don’t recognize her as my mother anymore. She is a wonderful woman who I get the honor of loving and taking care of until she dies.
-
I like to describe these postcards as “a bit of sass wrapped in a hug” Read messages like: “Heard your loved one has dementia. At least they won’t remember what an a**hole you are. Call me so I can remind you how much you are loved.” You will be able to purchase them one-by-one or in bulk, with or without stamps. Remember…a post is fine but a postcard is even better. Available this October.
-
Instead of adding another book on dementia to the growing number out there (even though I am sure it would be good), I decided to put the knowledge I have gained through my own research and stories from life experiences with my mom in a series of packets.
Packets organized by topic, such as: First Symptoms & Diagnosis, How to Find a Facility, Changes in Clothes and Food, How to Celebrate the Holidays & Family Traditions, Spirituality-their’s and mine, and many more.
Each packet has practicalities and worksheets but also journal-type pages for processing the range of emotions that will certainly accompany you through this tough time. Look for the first one in December!
Happy 89
What’s in a Number?
I love celebrating birthdays and not just my own. When I was little I can remember making a card for my mom with big red hearts all over the paper. I would write something simple like “Happpy Berfday” and sign it with scratches that were supposed to spell out “Love You”
Meet Mom and Me
Forever on the Journey Together.
They say some mothers and daughters are two peas in a pod. Mom and I aren’t. We are alike in some ways, while very different in others. One thing I know is the same: our love for each other, even when she doesn’t know who I am.
LET’S CONNECT!
Have a question …something you want to share…wondering if I can come over for dinner…or you think you knew me from back when I used to have short hair…then send me a note. Would love to connect!