Category Archives: Blogging

caregiving and accountability

The Stress of 24/7 Accountability of Caregiving

This isn’t a rant or a complaint, just information to help people understand one of the many challenges of full time caregiving.

My aunt has lived with us for almost three years. That first summer was physically, emotionally and logistically demanding. I was constantly exhausted and stressed.

The hardest thing at the beginning was not knowing what to expect and learning how to navigate changes that I couldn’t predict.

One change was the increased traffic of well-intentioned visitors. Except for my closest family members (brothers and cousins), visitors added to the chaos those first few months. Once I identified it as a stressor, I was able to set some boundaries. Most people respect them and are very understanding but we’ll still get the occassional surprise visitor. Who does that?

If you’re reading this and know someone caring for a loved one, please don’t drop in unexpectedly, it’s rude, inappropriate and disruptive.

I’m lucky that my aunt doesn’t have demanding medical or physical needs.

The hardest thing about being a caregiver now is the constant accountability and having to make detailed arrangement for anything that takes me away from the house. I can’t run to the grocery store if someone isn’t here with her. Weddings, funerals and every family event are tricky to attend because all my back-ups are usually attending those, too.

People don’t realize that every event and activity requires planning and arranging for someone to be with her, prepare her meals, help her in the bathroom, keep her on her schedule, let alone coordinating my own family members. I can’t tell you how often I thought I told my kids about a funeral or an invitation/event and they never heard about it. Blank stare.

It’s a chore to enjoy normal family things. I tend to opt out of movies, get-togethers with friends and family, dinner out or the occassional sporting event because it’s just easier than scrambling to arrange one or more caregivers.

Any solution is temporary. It’s great when people offer to help but it’s always only temporary. My daughters were just getting comfortable taking responsibility for 24 hour care to allow me to be away overnight but my aunt’s physical and mental abilities have declined so quickly that none of us are comfortable with that.

My mom and I will try to share caregiving as long as possible. My aunt will spend a couple of months at each of our homes to give the other a break. It’s much easier than trying to manage her care in a nursing home, for now.

 

Dark and Quiet-Glad I’m Home

election 2016 aftershock

I’m stunned but not surprised if that makes sense. When some were so sure that there was NO WAY IN HELL that Trump could possibly be the next president, I worried that there WAS A WAY in this country.

I feared what some wouldn’t admit out loud but would freely express in the privacy of the voting booth.

When the no-brainer, game-overs were not ending Trump’s game, I knew it could be possible. But I’m still in shock.

Here we are. Thoughtful people are wondering what they can do.

My son, who voted for the first time and who might have written in Harambe had the GOP selected a human, asked a few times last night, “What are we supposed to do?”

Truth is, I don’t know. I have no idea how to convince my friends who are truly and systemically invisible under a Trump presidency (you know, minorities, non-Christians, women, girls, immigrants, the poor, the jobless, sane people) that this country or the world is safe.

I don’t feel safe.

But here’s what I plan to do in the next few days:

Besides medicating myself with all the leftover Halloween candy in the house and praying the Rosary incessantly (there is palpable calm and peace there), I’ll be….

Keeping the TV off. I’ve had enough of the chaotic ratings-chasing, soap-selling, vertigo-inducing “news” media that helped create this mess. Clearly, the talking heads and experts don’t know any more than I do. They did not see this coming.

I don’t care how it happened. It happened. I’m filtering and censoring what plays in the public spaces in my home. It’s not informative and it’s not entertaining.

Second, I’ll do my best to encourage civility in the family. We are all on edge and stressed about this terrifying  and depressing turn of events. Last night found us snapping at each other.

election night tweet

Exhibit A

I’ll try to be positive and calm and see if that rubs off. I’m hoping my kids (or Jodie) will make me laugh about something. See exhibit A, above.

Third. I’m declining to engage about this topic in the next few days, except to the extent that my kids need to talk about it to calm their own anxiety.

Outside of my family, no offense. I can’t talk about it. It’s too depressing. But really, what is there to say? Most people I know are reasonable and we all feel the same so do we really have to pontificate? No.

It sounds selfish and maybe it is but I need to regroup. It’s my way of staying out of the soup of despair. Total self-preservation move. Eventually, I’ll reengage but I’ll wait for the aftershocks to settle.

Finally, I’ll encourage my kids to double down on their gifts and interests and not to rely on gatekeepers, institutions or conventions to move them forward.

Two political parties were disrupted last night (though, if you read this prophetic piece by Naval Ravikant, it was really one). Get used to disruption and maybe take Jay Samit’s advice.

It’s time for me to go dark and quiet for a while. #blessup.

Maybe It’s Time to Question Our Sacred Cows

This TED talk by Mike Rowe is graphic but you can handle it. Rowe is the host of “Dirty Jobs” on the Discovery channel and he’s committed to bringing dignity to work by showing some of the most dangerous and well, dirty jobs.

He wonders whether we’ve declared war on work and suggests that we question platitudes like “follow your passion”.

Since enrollment in trade schools continually decreases, he wonders whether there will be enough skilled workers to fill the jobs needed to rebuild the country’s infrastructure.

The mike rowe WORKS foundation promotes hard work and supports skilled trades through a trade school scholarship program. Rowe also wrote a book to promote the trades and to raise money for the foundation scholarships. “Profoundly Disconnected” was only available on the foundation website when it was published but that button takes you to the eBay auction page. Amazon’s prices seem to be more reasonable so I included it here. If you find out that the book is available somewhere that would benefit the foundation, please let me know so I can change the link.

 

Disclosure: This post contains affiliate links. If you make a purchase through a link, I receive a small commission at no additional cost to you. Thanks.
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Transparency in Advertising with Morgan Spurlock

Welcome to Day 23 of “31 Days of Great Ted Talks”. You can find a run down of the other exceptional TED talks in this series by going here.

This funny and thought-provoking TED talk slash documentary shows how independent film maker, Morgan Spurlock, went about getting brand sponsors for a documentary about sponsorship, marketing and branding.

He even auctioned off the naming rights to the TED talk about the project.

One thing I loved was watching people tell him “no”. One guy even said “yes” then asked to turn the camera off so he could tell him “no”.

As uncomfortable as it is to watch people get rejected, it’s valuable-especially when they persevere and come out on the other side.

How to Cure Alzheimer’s

There’s been virtually no progress in finding a cure for Alzheimer’s disease since it was first diagnosed in 1906.

Samuel Cohen argues that promising new research could lead to a cure with proper funding and public pressure to do so.

Although Alzheimer’s is the most expensive disease (1 out of every 5 medicare dollars is spent on patients with Alzheimer’s), it accounts for less than a tenth of funding.

 

Confessions of a Comedian With Depression

What’s so haunting about this TED talk by Kevin Breel a young writer, comedian and activist is how he could be just about any kid I know.

I realize anyone can suffer from depression at any time but you don’t think of young, athletic, academic and funny kids when you think of depression. You think of the kid who OBVIOUSLY doesn’t fit in and that circumstance leading to depression.

The thing is, how do I know that any of the 4 kids under my roof aren’t suffering or struggling with depression if, as Kevin described, it’s possible to present two different personas?

Let’s say my kids are all relatively healthy, mentally and emotionally speaking, it sounds like there’s a great chance that one or more of their friends, who otherwise looks healthy and stable is suffering. How can you tell?

Mental health issues are so stigmatized unlike other organs and body parts that are broken that it’s nearly impossible for kids to reach out to the people most likely to be able to help them.

I would love to hear what Kevin has to say about his parents’ role in helping him understand his depression and his ability to advocate for mental health. According to his website, he traveled extensively as a teenager doing stand-up comedy, it sounds like they’re pretty supportive.

If you watch this talk, please let me know if you also can’t stop thinking about it.

Kevin has a new book out that I’m anxious to read.

 

Disclosure: This post contains affiliate links. If you make a purchase through a link, I receive a small commission at no additional cost to you. Thanks.
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Think Human Trafficking Doesn’t Affect You?

Even though Noy Thrupkaew had been investigating human trafficking for more than 8 years, she never made the connection that her beloved “Auntie”, who cared for Thrupkaew until she was three years old, had been the victim of human trafficking. The young, distant relative was brought from Thailand to the United States on a temporary work visa to care for Noy.

The young woman endured repeated abuse from other members of Thrupkaew’s family until she ran away and eventually went back to Thailand.

Contrary to the common assumption that trafficking only involves bad men forcing young girls into prostitution, that scenario only accounts for 22% of human trafficking in the world.

Applying a more accurate definition: “the use of force, fraud or coercion to force another’s labor”, Thrupkaew shows how we all benefit unwittingly from human trafficking.

In this thorough and powerful TED talk, Thrupkaew challenges all of us to follow the labor and supply chains of the products we consume.

Thrupkaew hasn’t written a book (though she should) but if you’re interested in learning more about human trafficking, including ways to combat it, you can go to this government website: 20 Ways You Can Help Fight Human Trafficking…..and if you buy shrimp from Costco, ask about it.

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Kids Can!

This TED talk by Gever Tulley is a great go-along to Sugata Mitra’s research in self-organizing education. Instead of giving kids access to a computer and having them learn biochemistry on their own, the kids at Tinkering School get tools and learn equally impressive skills and concepts.

Of course, Tulley’s written a book which I bought a few years ago and have to admit, was too scared to have the kids do most of the challenges. “Fifty Dangerous Things (You Should Let Your Children Do” would make a great challenge series. One challenge at a time is enough for me!

Disclosure: This post contains affiliate links. If you make a purchase through a link, I receive a small commission at no additional cost to you. Thanks!