A caregiver oops moment


While I was thrown into caregiving with zero experience and even less confidence, I was proud how over time, I became even good at some aspects of caregiving. Changing a colostomy bag, for example. I give myself a gold star for becoming a pro in that area.

However, I recently realized that I let some basic things slip. It didn’t cause any damage but I did feel like a big dummy.

My mother got sick in 2012 and I spent the entire fall and part of winter with her at her condo. In that time, and in subsequent visits, both before and since she died, never did I stop to consider changing the furnace filter.

I didn’t even know where the darn thing was located.

At my townhouse, I change out the filters every 2-3 months, because we have pets and the dust and dander builds up fast. Never did it remind me to check out the filter at my parents’ condo.

The only thing that alerted me to my dereliction of household maintenance duties was when I was finally able to open the outdoor storage room connected to my mom’s condo. It can stick with the weather changes and become near impossible to open. After a few tugs it popped open this time, and the first thing that jumped out at me was a bag of blue furnace filters, which Mom had neatly labeled.

That’s when my heart skipped a few beats. Uh-oh, when was the last time that was changed?

I figured out where it was and had to pry off a vent cover to get to it. I was afraid to pick up the filter, figuring it might disintegrate before my eyes into a cloud of dust. Well, it was pretty bad, but since Mom didn’t have pets, it wasn’t as bad as it could have been. Also, there is no air conditioning at my parents’ condo, so the filter only saw use in the winter months. I could make out a faint outline of the original filter under the years of dust accumulation.

If I had to guess, it’s probably been at least five years since it was changed.

Of course, I had some moments of guilt, but a dusty air filter isn’t what took Mom’s life, cancer was. And because I was so focused on taking care of her, I let some maintenance duties slip. I’m OK with that.

But if you do find yourself caring for a loved one and you are not familiar with the home, it is wise to learn where things are: the furnace, water heater, breaker, in case you need to access it. For example, you’ll never guess where the water heater is at my parents’ condo. I’ll save that for another post.

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Touch in Dementialand (aka The Huggers and the Non-Huggers) — Welcome to Dementialand

I’m sharing another post from the wonderful series that Welcome to Dementialand has written. This one really hit home with me, because my dad was definitely a “non hugger.” He was never very demonstrative, even before dementia, but when my mom would visit the memory care center, and she would try to hug him goodbye, he would admonish, “No more hugs!” My mom tried to joke about it but I know it hurt her.

That being said, it is very important to recognize and honor the level of touch a person with dementia demonstrates they want. There are many factors involved, as the post explains.


The last photo of Dad and I together, July 2011.

This is the second of a series of five posts about the senses in Dementialand. Today we focus on touch. The issue of touch, or tactile stimulation, for those with dementia is complex. An entire book could be written on the topic, and I will be clear that this post is not a complete summary of […]

via Touch in Dementialand (aka The Huggers and the Non-Huggers) — Welcome to Dementialand

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A new season, full of old memories


Fall is my favorite season. I love the cooler weather, and breaking out those sweaters. I like watching the leaves change color, though sometimes raking up all of those leaves is overwhelming! Hey, at least it’s good exercise.

But fall can be a difficult time for those of us who have lost loved ones. Whether you celebrate the holidays or not, it’s difficult, if not impossible, to escape the holiday spirit that takes over the country this time of year. I read this week that a radio station has already switched over to an all-holiday song format!

With the change in season, I’ve been a bit nostalgic lately. This photo with my father was taken in the fall of 2002. I can’t believe it has been 14 years. At the time, it had been awhile since I had seen my parents and my first reaction was that they looked “so old.” Little did I know what was in store. Dad would lose his mind to dementia, my mother would battle colon cancer.

But in 2002, my parents were enjoying a modest but comfortable retirement. I was earning a modest, but independent living. What we consider to be a mundane moment can turn out to be a moment to treasure.

I’m glad I have this photo with my father. It is one of the few I have before the dementia took hold, a moment in our lives when things were blessedly status quo. Don’t let those moments pass you by, document them if you can. You’ll be grateful for the memories later.


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RIP Miss Norma


Photo via Driving Miss Norma/Facebook

I’ve written before about how inspiring I found Miss Norma to be. At 90, after losing her husband and being diagnosed with stage IV uterine cancer in a short period of time, Norma decided to skip grueling cancer treatment and “hit the road.”

Norma joined her son, daughter-in-law, and dog and embarked on a year-long adventure of a lifetime. The journey was lovingly documented on the Driving Miss Norma Facebook page.

But all good things must come to an end. Norma Jean Bauerschmidt died Sept. 30, 2016. When asked how she wanted to be remembered, Norma said, “Wouldn’t it be nice if others could just spread joy in the world.”

Wouldn’t that be nice indeed.

Her bright, upbeat, and loving spirit will be missed, but I will forever be inspired by her choice to embrace quality of life and truly live the time she had left in this world. Norma in many ways reminded me of my own mother. I’ve included a couple of my favorite photos and posts of her below.

In memory of Norma, do something special for someone you love, or for a complete stranger. Spread the joy!



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What You Smell in Dementialand

When I look back at how little I understood dementia while my father was battling Alzheimer’s, it inspires me to share excellent posts like this. I hope those of you who are dealing with dementia in your own family will find the information helpful.

This is the first of a series of five posts about the senses in Dementialand. As I write this, it’s a gorgeous early fall day. I am sitting in our living room with the windows open. Coll…

Source: What You Smell in Dementialand


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Book review: Simply Happy

I had the privilege of receiving an advance copy of simply-happy-cover
Simply Happy
, a different kind of Chicken Soup for the Soul book. This time, publisher Amy Newmark has written an entire book herself, based upon the wisdom she has gained from reading all of the inspirational submissions over the years.

As you may remember, I was honored to have my first-ever Chicken Soup for the Soul submission, French Toast, accepted and published in Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias, which benefitted the Alzheimer’s Association.

I was as surprised as anyone to pick up a Chicken Soup for the Soul publishing credit. I am pessimistic by nature, though I prefer to refer to myself as a “realist.” My job as a journalist involves me seeing the worst and best of humanity day in and day out, and I admit the bad news seems to have more of an impact than the positive.

But that is exactly what Newmark is trying to address in this collection, which offers simple, realistic tips on generating greater happiness and satisfaction in your life. Newmark uses prior Chicken Soup for the Soul submissions as the main resource, adding what she learned or how she applied some of those lessons. Newmark was a successful Wall Street analyst before she took the Chicken Soup for the Soul helm, so she doesn’t gush rainbows and kittens, but addresses struggles that many people can relate to and how changing your perspective or outlook can help. There are no wonder cures or guarantees of happiness here, but I found myself relating to quite a few of the essays.

One that definitely hit home was the “Imposter Syndrome,” where people (especially women) feel like they are inadequate, even when everyone around them thinks they are amazing. I definitely suffer from this and am sure this is common among caregivers!

I also enjoyed the essay about removing toxic people from your life and embracing the art of saying, “No.” As caregivers, we often feel it is our duty to do everything, but that eventually leads to burnout. We have to learn when to say no and ask for help.

Simply Happy goes on sale Oct. 4th and would make a thoughtful gift. If you read it, let me know what your favorite passages were.

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Meet author and Alzheimer’s caregiver advocate, Joy Johnston

Such an honor to be including in this group of authors writing about Alzheimer’s and dementia.


Joy Johnston 1I write about Alzheimer’s because my father’s experience with the disease turned me into an advocate, not just for those with Alzheimer’s, but for their caregivers as well.

My father lived with Alzheimer’s disease for about four years. In that time, my father went from fully independent to living in a memory care center. My mother went from healthy and active to stressed and exhausted, and I believe the prolonged period of stress contributed to her colon cancer diagnosis, just six months after my father died.

As a long-distance caregiver, I experienced my own challenges. It was difficult keeping track of my father’s condition, as details were filtered through my mother’s optimism, which was welcomed at times, and a hindrance at others. Because my father had not shared his end-of-life wishes, my mother and I were forced to muddle through those difficult decisions. I now encourage everyone to document their…

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