If You Have Aides, 3 Things You Have to Remember About Acting Like Your Own Boss, aka YOU'RE in Charge!

It's so hard to deal with people. I had aides in New Jersey and had to find even more aides for my stroke care when I came to Pittsburgh. I called them personal assistants to give the job a more elevated status. It didn't help.

One was allegedly addicted to cocaine. One brought her boyfriend every time.  One told me I was discriminating against her when she couldn't lift my wheelchair anymore. One took her 2 whining children along.

One smoked wherever she went, even when there were "no smoking" signs posted. It was like a revolving door. I hired and then I fired. But what they all had in common was they needed money--my money. It took me a year to finally figure it out.

There are tons of aides, I later found out, through various websites. But the trick is finding great ones. You have work ahead of you as well. These 3 tips will help you find and keep the aides you want!

1. Establish your role from the start

Unless it's your wife or husband, they're your employees, not the other way around. They work for you. And as your employees, give them a fair chance of doing things their own way. Then, if you don't like the way things are done, speak up. That was the hardest part for me, realizing that they work for me. But once I did, that was the end of feeling like they were in charge. Plus, they're not mind readers. You have to tell them what you like and what you don't!

2. Appreciate your employees
 
When you're your own boss, you're dealing with people who, as a matter of fact, are sensitive souls. Say thank you a lot, but don't overdo it. I used to say "thank you" roughly 100 times a day. (I started counting because I knew I was doing it too much). Now, I say thank you for above-and-beyond activities, like opening a box of tissues when not asked to do so, anticipating my bad allergies, or complimenting them on a good suggestion.

3. Give employees the resources to do their jobs

Provide them a list when they come, on things you want to get done for the day. Always stock up on kitchen and bathroom wipes, the antiseptic kind, like Clorox or Lysol. Have something to dust your furniture, and even dry washcloths will do. Keep your vacuum in top-notch condition by showing the aides how it works, i.e. filter placement and emptying it to avoid clogging. 

When all is said and done, it's really up to you. 

Stroke Survivors Could Easily Handle a Power Nap. But Do They Want To?

Everyone feels tired at some point. But I fight napping. If I nap, even for 15 minutes, during the daytime, I'm hit with insomnia at night and go to sleep at 4am. It all started when I stayed up later and later to write this blog and other things.

Karl Doghramji, MD, Medical Director of the Sleep Disorders Center, Thomas Jefferson University, Philadelphia, reports, "The avoidance of naps has been proposed as a method of enhancing sleep continuity on the following night." 

Truer words were never uttered. When it comes to strokes specifically, The National Stroke Association (NSA) says that post-stroke fatigue, or PSF, affects as much as 70 percent of stroke survivors, especially in the early years. PSF happens without warning. PSF is not just feeling tired and wanting to take a nap. With PSF, you have to take a nap. 

The NSA identified 3 types of fatigue for stroke survivors:

Cognitive (like mental fatigue, difficulty focusing)
 
Physical (like function limitations, spasms, pain, muscular weakness, interrupted sleep)

Emotional (like crying and laughing at odd intervals, depression)

I encountered all of them. On the cognitive side, even six years later, I still have mental fatigue and usually rest once a day; just resting, not necessarily napping. I have all of the physical ones randomly. As for emotional fatigue, I am still, somehow, motivated, but I cried and laughed at the wrong times and places the first few years. And depression? I still have it, though rarely, but doesn't everybody?

The top 10 foods, according to the NSA, that can help ward off fatigue include:

1.   Walnuts
2.   Pumpkin seeds
3.   Quinoa
4.   Yogurt
5.   Whole grains
6.   Wheat bran cereal
7.   Red bell peppers
8.   Tea
9.   Watermelon
10. Dark chocolate (Watch your intake and your waistline!)

I tried all of those on the list, but I'm back to insomnia again. 

According to strokeassociation.org, survivors expend more-than-normal energy to do everything.

“You may have less energy than before because of sleeping poorly, not getting enough exercise, poor nutrition, or the side effects of medicine. You have as much energy as before, but you’re using it differently because of the effects of your stroke. Things like dressing, talking, or walking take a lot more effort. Changes in thinking and memory take more concentration. You have to stay 'on alert' all the time--and this takes energy,” says the association. 

So if you fight napping and still have trouble with Circadian rythym, where you wake up later and your days go until 4am, for example, try these methods coming from UCLA's Sleep Disorders Center:

• Poor sleep habits can also disrupt your sleep pattern. A sleep specialist can help you adjust your behavior to promote better sleep. Maybe you have sleep apnea.
• Bright light therapy may help shift the circadian system and reset the body's clock. Properly timed exposure to bright light can help advance or delay the sleep cycle. The television or computer, for example, may interfere with bedtime because of the bright lights. 
• Studies are exploring the use of melatonin supplements to treat circadian disorders. Melatonin is a natural hormone. Your body produces higher levels of it in the bloodstream at night. It is believed that melatonin helps signal your body to go to sleep. It may also play a role in resetting the biological clock. Talk to a doctor before taking melatonin. 

I want to join the world at 7am and go to bed at 11pm. But I'll conquer insomnia. It just takes time, the experts say, and that's the response I like the least.

Aging Gracefully, Dammit! aka I Can't Blame My Stroke on This One

Sarah Jessica Parker was the sex columnist, Carrie, in the television show "Sex and the City" and Shania Twain is the rockin' Country star and Kevin James is the hilarious comedian, but what do they all have in common? They've all turned 50 years old, (emphasis on "old"). How did that happen? They were 40, and then, in the blink of the eye (from my perspective), they've probably lived longer to date than they're going to live in the future.

I count myself among them because, at the age of 67, I am going into the sunset of the rest of my years and a senior citizen, and I, too, passed the midway point of life.

I hired a new aide who's 24 years old. We were talking about her mother who's 51. She was saying when her mother and she walked into a store or restaurant, everybody who didn't know them thought her mother was her sister.

"She really looks young," she said, "and people can't believe she's that old." Old? She thinks 51 is old? I let that go, didn't go rogue or anything.

I look younger than I am, too, so I asked the aide, who already knew my age--67--what other people would guess my age to be.

She replied, "You don't look a day over 62." 62? I think I look late 40-ish, early 50's at the most. Maybe I am delusional. Or maybe my vision is poor. Her comment got me to thinking, "What's our obsession with age?"

In How to Overcome Age Obsession, Sanjay Gupta, CNN's Chief Medical Correspondent, writes, "If you think about it, whichever stage of life that you’re at, if you look back at the other stages, you will realize that you had a good time then but you probably will not want to go back there."

The Huffington Post reported on a segment of Today Show, Why Are We Obsessed With Looking Younger? where make-up artist Bobbi Brown says, "It's about resetting your brain. It's not about how you look; it's how you feel and how you think."

I say (this is the delusional part) that age is only a number, when I'm alone and trying to convince myself that age doesn't matter. But let's face it. We're one year older than the year before, which is why Jack Benny, when he celebrated his 39th birthday in 1933 on the radio air, stuck to that magical number for the next 41 years, no matter what his age really was.

It's not an original story. My mother gave me hell after I threw her a surprise 65th birthday party, and my cousin, Joseph, came up to her, according to my mother, and said, "Now we know how old you are." She was embarrassed and didn't talk to me for a week. She was age-obsessed, too.

You want to get a harsh reality check, to feel really old? Think about your kid's age. My older son is going to be 40 in January. My other son is going to be 35 in April. I can still remember the seemingly millions of stories, when Andy had to be rocked incessantly in the middle of the night when teething for every tooth, when Jordan climbed out of his crib at 11 months and landed on the floor at 4 am. 40 and 35? That's when the truth really sinks in.

There was a Bingo tourney in the community room of my apartment building yesterday. The 24-year-old aide asks, "Do you want to go? They're giving away a designer handbag."

"I detest Bingo," I reply. B-15. O-52. "I get shudders from the boredom," and from the age-related insult. (I always thought, Aren't most who play Bingo over 70?)

She goes on. "While you're playing Bingo, you could meet some of your neighbors in your home."

And there it was--"in your home." Let me tell you something about my "home." It isn't a home for the disabled even though I had a stroke. It's an apartment building, not an assisted living facility, already beginning to feel defensive about my age. And furthermore, I continued to myself, feeling my anger almost turn into rage, I don't like Michael Kors handbags with the MK highlighted all over the bag. I shuddered again. I realized I was going into topics she didn't even broach. And I knew, just knew, I was on the edge.

"I have an idea. Let's go shopping for a new I-phone case," I insisted, yearning to appear hip.

And shortly, I returned to the Verizon store, lost the anger, and was, in my mind, 48 again. 

5 Hilarious Thoughts about Campers and Stroke Survivors

J, a good friend, and I accomplished the 2-hour drive from my place to the campground in Ohio, stopping at Cabela's in West Virginia, the hunting, fishing, and outdoor gear emporium that also had bison burgers and deer meat custard if you wanted to take a break from shopping. (Only kidding about the custard). I bought a long-sleeved shirt because I didn't pack any and the air took on a chill even though, technically, it was still summer. Going to Cabela's put J even more in the mood for camping, but I just kept muttering that line to myself that Dorothy says in The Wizard of Oz: "There's no place like home."


J and I traveled the gravely, rutted road for one mile once we got off the highway and then we were there--Seneca Lake Resort--which was 300 lots filled with 300 trailers. This time was the first for me since my stroke 6 years ago that I agreed to go. It was a gargantuan step that took me out of my comfort zone of television, writing, and exercising in my own apartment. I was ready for the challenge.

As we pulled up to her trailer house, J had an addition--an attached, screened-in porch as do some of the people, and some people have ongoing projects--an extra bathroom in progress, a built-out kitchen soon to be completed, an almost expanded bedroom. And some people only have the original trailer. But all of the people enjoy camping. I mean, really enjoy camping.

I can't expect anybody who hasn't experienced a stroke to know, at exactly the point of our arrival, what dangers lie ahead. I hadn't fallen for over a year and yet I saw all that lay before me--a high step up to the screened porch, four  wooden steps to get into the trailer, throw rugs as my eye could visualize, a back deck with a high step, and 5 rocking, unstable recliners throughout the porch. But I had come this far and I wasn't going to renege. I just wasn't. I had to pee and it was a decision whether to go up those wooden steps or hold it in. (I held it in for a little while longer).

The weekend was great, but the challenges even more so. So I present the list: 5 Things You Have to Remember about Camping as a Stroke Survivor.

#1: Forget your fear of bugs. This is camping. The first time I saw a wasp in J's trailer, I thought life as I knew it was coming to an end. I'm allergic to anything "bee-like." Then my mother's words returned to me: "If you don't bother it, it won't bother you." My mother's words weren't at all true, but you have to forget about the flyin' and/or creepy crawlies when you go camping. You have to pretend that they're your friends. (Come to think of it, some of my friends have stung me, too, but I digress).

#2: Lose your fear of food. Sometimes, you just have to go with the flow. I am a picky eater. I eat the same things every day and only the combination varies: yogurt, bread, cheese, turkey, peas, bananas, and oatmeal. J served spicy-hot chili with meat one night, sausages with fried onions and peppers the next night. I ate sparingly, but not sparingly enough. No more information needed. 

And it was shocking  when J's husband, who has Southern roots, announced that dessert was boiled peanuts. I never had boiled peanuts and the thought of those little legumes jumping and sloshing around in scalding hot water made me sad. But after I tasted them, I was hooked and I didn't feel sorry for those peanuts anymore. I started thinking if boiled peanuts were offered on Amazon, the website where I should own stock in the company, I'd order them.

#3: Don't ever say, "Eeeew." We went fishing, just the three of us. Their son stayed with a friend and they were catching bugs to put into the ant farm that I bought him as a gift (also known as a child's self-created apocalypse. Beetles and ants? You can imagine). Anyway, I was sitting on the rocking boat and I was pretending that I wasn't sea sick, when all of a sudden, J's husband caught a big one--a flapping, pissed-off bass that was putting up a pretty good fight. 

After reeling it in, J said, "Here, you hold it by the line while I take a picture." There were a lot of things wrong with that picture, but at the top of the list is the fact that the fish, now going bonkers, was spraying lake water on my body. I was a little OCD now from my stroke, and once we returned from fishing, I couldn't take a shower after because the trailer's tub is too high, but I promised myself that I wouldn't say the "E" word even once, so I let the fish have his agony while she snapped a few pics. But that doesn't prevent me from saying it now, safely back in the comfort zone. EEEEEEEEW!

#4: Do what the other campers do. Mostly everybody had a golf cart on their property for visiting other campers or just snooping at the other 299 trailers to see what they had going on. I saw them going by, golf cart after golf cart, many of them driven by young kids. The park didn't care as long as your foot touched the pedal. J had a golf cart, too, and said she wanted to give me a tour of the park-like setting. The golf cart's speeds were "off" and "beyond-your-wildest-dreams-fast, aka "Indy 500-car fast." There were no seat belts, so her husband used a spare garden hose to keep me from falling out. That gesture really wasn't necessary because I wasn't going anywhere. Seeing the setup beforehand, I grabbed tight to the bar right behind J's head, and the garden hose belt fell off 50 feet from the trailer when we started. 

We were off! I kept me eyes open in a wide-eyed stare, waiting for my eventual death, going around sharp curves and hard bumps in the road, but after a few minutes, I enjoyed it. My hair was shot to shit because the golf cart didn't have a windshield either. But the amazing thing about all the campers we passed on that mini road trip is that they didn't care what I looked like. If you ever want to feel accepted, go camping. The reason? Everybody in the camp looks like shit, too.

#5: Relaxation is the key. For 3 days (except for the aforementioned), I was totally relaxed. I lay in the sun thinking only good thoughts. I sat in the recliner and saw, through the screened-in porch, scores of cardinals, hummingbirds, and yellow finches traveling to and fro to the 5 bird feeders, hanging from strings to keep them out of the raccoons' reach. I reclined by the fire pit and was thankful for J sharing this experience with me and the lily pads she pointed out on the lake, for J's husband who was all about safety, and J's nine-year-old son for offering to help me to traverse the flagstone walkway and showing me the frogs he caught (and let go). 

Soon as I got home, it was back to the same old, same old, but for 98% of the 3 days I was there, I had found nirvana.