October 17, 2016 · 9:32 pm

A caregiver oops moment

furnace

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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October 12, 2016 · 9:01 pm

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.

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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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October 8, 2016 · 8:00 am

A new season, full of old memories

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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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October 5, 2016 · 8:00 am

RIP Miss Norma

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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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September 30, 2016 · 8:49 pm

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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September 24, 2016 · 8:00 am

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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September 21, 2016 · 1:17 pm

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.

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September 17, 2016 · 5:03 pm

A brief film with hopefully lasting impact

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Image: Netflix

If you have Netflix, you may have seen an ad for the 24-minute film Extremis. I often ignore whatever Netflix is promoting, because often it just doesn’t match up with my interests. But this short film addresses an issue near and dear to my heart: end-of-life care wishes.

Extremis follows Dr. Jessica Zitter, a palliative care specialist at  Highland Hospital in Oakland, California. She helps guide families through the toughest decision of all, when to transition from life-sustaining care that is often uncomfortable for the patient (breathing tubes, feeding tubes) and focus on comfort care, allowing a patient to die peacefully.

It is often the toughest decision a family will ever make.

Much like some people are more motivated to quit smoking after hearing the stories of lung cancer victims versus reading inspirational brochures, I hope that this film will serve as  a sobering wake-up call about how important is to make end-of-life wishes. The consequences of ignoring such advice is outlined in painful detail in the film.

At the same time, when no orders are in place, each family reserves the right to decide what care their loved one will receive, even if it goes against the doctor’s advice. I may not have agreed with all of the family’s decisions in this film, but I could tell they came from the heart.

Anyone who has been through an emergency medical issue with a loved one will relate to this film. Suddenly you are faced with making major life-and-death decisions under the worst of circumstances. It is overwhelming and emotional. There is despair and hope and guilt and more than anything, a cloud of uncertainty hanging over everything. It’s a moment you never want to experience but also one that you never forget.

If you have a chance, check it out and let me know what you think.

 

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September 10, 2016 · 8:00 am

Ways to battle wandering

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One of the most frightening aspects of my dad’s dementia was his tendency to wander. It is unfortunately a common symptom of Alzheimer’s and other dementias. It can place people in life-threatening situations. In fact, a gentleman with Alzheimer’s in the same town where my parents retired wandered away from his home one winter and died from exposure. He’d fallen into a ditch and had gotten tangled in some weeds and brush.

Fortunately, my father’s wandering never led to physical danger, but it did scare my mom and I. On a few occasions, my mother had to call the police, who were wonderful about tracking my father down, but it was nerve-wracking until he was home. It also became impossible for my mother to take my dad on any errands, because she couldn’t trust him to wait for her. One time he wandered away while she was in the dentist’s chair, and ended up at a fast food restaurant a few doors down, which he claimed was full of spiders. Another time, he wandered away from McDonald’s while my mother was in the restroom. The police found him near the drive-thru.

When I was contacted on Twitter about A Caregiver’s Guide to Wandering, I was interested in learning more. The guide was inspired by Sergeant Jacqueline Fortune of the Harris County Sheriff’s Office in Houston, Texas, who’s department was using Boerner, Inc.’s McGruff Safe Kids ID Kit to address wandering calls in the area they serve. The company decided to create a guide to help caregivers cope with the specific wandering issues associated with dementia.

The 12-page guide offers innovative, concrete tips on preventing wandering as well as developing an action plan to implement when a wandering incident occurs. The guide is designed to be used by agencies — it is in use in the VA Hospital in Palo Alto, California and in agencies in thirteen other states, including several Area Agencies on Aging.

I believe this guide could be useful to every dementia caregiver. If you know of an organization that works with the aging in your community, recommend A Caregiver’s Guide to Wandering as a resource for dementia caregivers.

Full disclosure: I received a complimentary copy of the guide for this review.

 

 

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September 5, 2016 · 8:00 am

Will a dementia wonder drug suffer from price gouging?

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If and when a medication that reverses and/or prevents dementia arrives, will anyone but the wealthy be able to afford it? I’ve been pondering this question ever since the pharmaceutical company Mylan was roundly criticized for drastically increasing the price of EpiPens, the common treatment used for severe allergic reactions.

As with Turing Pharmaceuticals and its 5,000-percent increase for its toxoplasmosis treatment Daraprim, Mylan issued a significant price hike for a drug that had been on the market for quite some time. But what about new drugs that are medical breakthroughs for diseases that have proven elusive to treat?

Let’s face it, a medication that could effectively treat dementia would be one of the major medical breakthroughs of modern times. (Of course we must consider that there are several forms of dementia, so a medication that can target Lewy Body Dementia may not work in Alzheimer’s patients, and vice versa. )

Focusing on Alzheimer’s disease, the demand for a proven effective treatment is going to be huge. In an NPR interview about how drug companies price their products, an expert reveals the main factor is how much are people willing to pay for the drug. The interview focuses on Gilead Sciences and its drug Sovaldi, which can cure hepatitis C in most cases. The medication was much more effective than anything else on the market at the time, and hepatitis C can cause serious health issues if left untreated. The medication only needs to be taken an average of 12 weeks, so the price per pill was higher than it would have been for a treatment that took longer. You may have seen the headlines, “A $1,000 pill.” It was true that Sovaldi was priced at a total of $84,000 per bottle when it launched in 2014, though thanks to competition and public outcry, it costs about half that now.

So how much do you think families who have a member battling Alzheimer’s will pay for a medication that could restore their loved one’s sanity? It’s easy to say that a cure is priceless, but in reality, there is a price tag on everything. Perhaps the more interesting question is if the government should step in and regulate prices in such cases, in the name of public health.

I know that if an Alzheimer’s cure pill had been available while my dad was alive, at the prices listed above, we would not have been able to afford it unless Medicare paid for most of it. While I am a firm believer in the free market, I also don’t think any family should have to let a member die because they can’t afford medication.

What are your thoughts? Should medical breakthrough drugs be more heavily regulated to ensure access to the general population?

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