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.

#AlzAuthors

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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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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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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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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Grieving is a Lifetime Experience

Bonnie, who makes beautiful Memory Bears for those who are grieving the loss of a loved one, captures the essence of grief perfectly in her blog post. Grief doesn’t end, it becomes part of you as you move on, a changed person. 

My husband and I both have hospice backgrounds, so we have a lot of training and experience in the field of death and dying. We are familiar with the theories pertaining to death and dying a…

Source: Grieving is a Lifetime Experience

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Respite Care Share chosen as a top 10 idea

 

Photo credits: mayores/flickr & Vera Berard/Freeimages

Photo credits: mayores/flickr & Vera Berard/Freeimages

As caregivers, we are on the front lines, finding solutions on the fly to deal with daily issues that crop up, and most of our wisdom is never revealed beyond our family. There are also problems that we encounter that don’t have easy solutions, but where do we turn for assistance?

There are organizations that care about these issues. OpenIDEO recently hosted a challenge that centered on improving the end-of-life experience for all involved. My idea, Respite Care Share, was selected as one of the top 10 ideas. The challenge prompted me to submit an idea I had kicked around in my head for some time, but had no idea what to do with it. Respite Care Share was born after I pondered what to do with my parents’ condo after their deaths. I am in no rush to sell, but it bothered me that it just sits empty when there are so many people who need shelter.

I wanted there to be a way that homeowners could temporarily gift their rental properties or vacation properties to caregivers who need a respite from caregiving duties. The participating properties could be listed on Airbnb or a similar platform, and caregivers could rent for free for a brief stay. Caregivers could also search for and secure a vetted caregiver via an online service so their ill loved one would receive competent and compassionate care while the caregiver is away.

Caregivers deserve a break and studies show that their mental and physical health can benefit greatly from even a short respite. But convincing caregivers to take respite can be a challenge. Even though government programs like Medicare will cover respite care up to a certain point, it only pays for the ill loved one to be placed in a facility temporarily, and does not cover the caregiver expenses at all.  Removing or reducing costs could eliminate one of the barriers to respite care that caregivers face.

Still, there are some caregivers who cannot bear the thought of leaving their loved one’s side, even for a night. That’s why Respite Care Share would also include caregiver care packages that would include gift certificates to personal care services that only take an hour or two, such as a free massage or yoga session. The point of the program would be to support caregivers in taking respite that is appropriate for them, and making it simple to arrange and as affordable as possible.

Respite Care Share is still in the planning stages but it is exciting to see how a nugget of an idea has developed into a prototype with potential.

If you have an idea on how to improve the caregiving experience, don’t be shy. You never know who may see the value in your idea and help turn it into a reality.

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