COVID and the Rehab Facility: Talk About a Clusterfuck!

I found out from the Emergency Room doc--after I had fallen 3 times in 2 days from the lack of power in my stroke-disabled,  weak leg--that I tested positive for COVID; me, who is basically a shut-in while pandemic surges forth. 

So I had to go to a rehab facility for the falls, to once again reclaim the strength in my feeble leg. Because of the COVID, once they found one that would even ACCEPT COVID patients, I went. Three days after I was there, I really thought that the time had come for me to die. At 2 am, I wrote my sons burial instructions and some relevant memories of all three of us as my breathing was impeded by the enormous congestion. 

At 6 am, the tide had turned. I slowly became less congested in the weeks to follow. But I was still positive. Everybody--the CNAs, the nurses, the doctors, the therapists, the clinical social worker--who entered the room wore a long gown that hovered above the floor. Nobody knew why when I asked them. They had face shields and N-95 masks, and I started to feel like pariah, diseased and isolated. 

After the third week, I was tested again, and it was negative. Off came the workers' gowns, off came the face shields. But they still wore N-95 masks. I had to wear a mask when I exercised in the hallway. But some other patients in the hallway were maskless. I didn't understand why nobody told them!

It was a clusterfuck for sure. I didn't say anything to those patients, escalating their misery to have gone to rehab in the first place. But why didn't the CNAs or the nurses say something about their maskless faces? I understood the answer after a few seconds on thinking about it. NO ONE, EVEN THE SUPPOSED EXPERTS AND RESEARCHERS, KNOWS THE ANSWERS! 

As Jimmy Dore, my favorite podcaster, says, "You're all going to get it [COVID]." The vaccinated usually would feel less of the symptoms longterm, but Dore who was vaccinated still feels awful after the 2nd Moderna jab, has joint pain, and still experiencing a stiff neck on same side the shot was administered.

I'll say it again: NO ONE, EVEN THE SUPPOSED EXPERTS AND RESEARCHERS, KNOWS THE ANSWERS! You just have to live with it, whatever the consequences are. Or not. 

...With My Private Part Flapping in the Breeze

 

I'm in a skilled nursing rehab facility currently with a week left to go because I fell again where I seriously gauged my knee and hand big time. The pics are gruesome, and yes, stitches on my knee right down to the joint. The hand left an ugly scar, but I'm not getting married again to display proudly the ring on my finger. Once was enough. Marriage, that is.

Anyway, I'm in Portland right now, and the name of this skilled nursing place isn't important because, with one bad seed of Certified Nursing Assistants (CNAs) among many good ones, it could happen anywhere. 

I came in on July 27, unable to move my feet to walk and with broken capillaries on my left thigh that were dark from bleeding under the skin. Like I said, big time.

Priorities, at least for me, are constantly changing. Before the fall, joyously vegan, I overly stressed to my assistant that there must be rice in my hummus, red pepper, olives, and black bean burritos because she or I sometimes forgot. Now, the pain was my priority, screaming loudly from my hospital bed any time--day or night--completely without drama. I was on Oxycodone and Tylenol, sometimes taken together, and it took a half hour at least for the pain to subside.

As I came to improve slowly with the PT and OT assisting me, I could see, at last, the light at the end of the tunnel. Now for the first time, I have zero pain. But at times, because getting my brace and shoes without which I hadn't walked in my stroke since 2009, was too time-consuming for the CNAs, they brought me the bedpan on which I was willing to compromise. 

I saw this particular CNA before. Her demeanor was rushed, hurried, with me and other people. It wasn't the attitude that any patients want, especially brain-injured people of which I am one. She entered my spacious, two-bed and bath room out of view. I was lying down.

"You rang for help?" she asked begrudgingly, secluding herself behind the curtain.

"Yes. But come to where I can see you closer," I said. 

"I'm right here," she said, still out of view, as she took her time getting the gown on for protection because we had two staff members with COVID yesterday.

She appeared now.

I said, "I might have soiled my pants [I didn't, but half my body is paralyzed and I couldn't determine]. The reason I used the call bell was because I have to go the bathroom right away, and I didn't want to yell the news across wherever you were located." 

I didn't tell her I had been ringing for 45 minutes. All the CNAs are constantly busy with placing and removing bedpans, bringing in meals, and generally attending to the patients' whims. I know that.

"So you want me to clean you up and put on a new gown if I get it dirty? Finish your business and then I'll clean you up." 

She attempted to leave when I demanded, "I. Want. A. Bedpan. Now." The thought of pooping more just wasn't acceptable without the bedpan, like pooping into the winds. Uh, no.

So she went behind the curtain again and returned with the bedpan and sour looks. 

"I'll be back," she said with a snarl, or at least I heard it that way.

When she left, I called for the nurse manager. (FYI: If anything goes wrong with those attending you, call for the nurse manager. There's always one on every shift). Something had to be done. 

The CNA returned the same time as the nurse manager and both came into my room. The lower half of my body was still exposed, not exactly the best way to present an argument, with the private part flapping in the breeze from the fan.

"I don't want this woman to come to my room any longer," I said, gesturing at the CNA. "She has a bad attitude and it's not the first time I witnessed it. If somebody requests a bedpan, there shouldn't be any dispute about it. She needs re-training!" (I'm a big fan of training, having done training for others most of my professional career). 

The nurse manager was apologetic on behalf of the facility, but even she knew the damage was already done and it was too late for apologies. The nurse manager had the decency to cover my private part, also too late. And then, the two of them left. 

A couple of hours later, I resisted the urge to feel sorry for the CNA who had to learn the lesson of compassion the hard way. Maybe, just maybe, that lesson will help others who can't stand up for themselves.

4 Things That Stroke Survivors Think About, Whether They Admit It Or Not

There was a commercial back in the 90s. A man, supposedly talking to potential drug users, holds up an egg. "This is your brain." [cracks the egg on the frying 

pan] After watching the egg fry for a couple of seconds, the same man says, "This is your brain on drugs. [pause while egg fries] Any questions?" Great analogy. 

There are therapies out there for drug users and if they don’t leave before the therapy is finished, and if they don’t do drugs ever again, chances are they will recover fully. Same thing with alcoholics. Don’t leave the therapy before it’s finished. Don’t have another drink ever. 

Not so with the brain-injured. There are not chances for full recovery no matter what you do more often than not, and here is where the 4 things come into play. People say “stuff” when they come to visit a stroke survivor, and the stroke survivor, maybe glad of the company, doesn’t say what’s in his or her mind. But the survivor is thinking for sure. As long as you’re not in a coma, this is what the visitor says, and this what the survivor thinks: 

 Visitor: You look great! 

 Stroke survivor’s mind: Do you have any idea what I am going through? I feel terrible inside. What do you mean? Do I look like the last time you saw me? 

Visitor: What are you trying? 

Stroke survivor’s mind: Am I looking lazy? Are you keeping a tab on what I am doing? Overseeing my progress? I am stressed out over the things they make me do. 

Visitor: Let’s be positive. 

Stroke survivor’s mind: This injury feels like hell. I am tired of fighting it. And I need to put up some extra effort to assure you I look positive? Screw that! 

Visitor: You need to learn to treat it like normal. 

Stroke survivor’s mind: Come on! This is by no means normal! I am not stupid! I have been trying so hard, okay? So please shut up and stop lecturing me so cluelessly! 1

============= 

People say stupid stuff. That’s a given. But if you go and visit a brain-injured person, remember these things, and just stop. Talk about the weather. Talk about a movie or a just completed book. Talk about a meal. But for cryin’ out loud, don’t say these 4 things. OK? 

1: This experiment–what stroke survivors are really thinking– comes from an exercise Daniel Gu was conducting in which Brain Exchange members had to think of what Wendy–a fictional character who is also a survivor–would think to herself when asked. Kudos, Daniel, for reporting back so efficiently about these glaring 4 things.

Younger or Older: If You’re Destined to Have One, When Is It Better to Have a Stroke or Other TBI?

 

I had a stroke in 2009 and I was 61. So the question I continued to ask myself, even now 13 years later as soon as I came out of the coma, is it better to have youth on your side or is it better to have a stroke or other traumatic brain injury in your twilight years? There are pros and cons.

Before 50 

Pros: Ah! Youth! The advantages to having a stroke when you haven’t reached 50 yet have things to do most with recovery. As a rule, the younger you are when things went haywire, the faster the recovery will come. Of course, there are exceptions, as with any rule, and I don’t have proof that if you have a stroke before 50, there will be clear sailing from that point on. But the chances are greater. Watch this video:

https://www.youtube.com/watch?v=VGuBMroX7c8

Cons:  You’re just starting or in the middle of your career, whether you’re a barista or middle management, really everyone who works, as a matter of fact, when suddenly, because that’s all it takes, nothing. Depending on the severity, you may not be able to return. And if you return, prejudices come into play. All eyes are on the TBI survivor and that alone may make you screw up. They, the powers that be, see that you’re different, even if you’re not. Depression is greater in the under 50 crowd because you feel cheated. Emotions are stronger like guilt and frustration may come into play greater than the after 50 group.

After 50

Pros:  You understand sooner the whys and wherefores, limits and foolishness of your actions. You may feel like a grownup for the first time in your life, and that’s a good thing. You take absolutely nothing for granted. You start thinking about support groups, where laughter is the best medicine. 

Cons: You may think about death more and, even though you won’t feel it, how cold you will be six-feet under. Older people fall. It’s just the way it is. And having a fall or, to lesser extent, even an accident, sometimes results in a stroke or other TBI, and in that singular moment is the better part than what comes after, like lingering headaches, double vision, nasty incontinence, just to name a few. 

TBI survivors, do you feel the same way? No doubt some of you do, barring the exceptional ones like the survivor in the video or the ones who hide behind their positivity in a glass shell, ready to be shattered at any moment with another TBI!

Important Tips and Considerations When Researching Senior Care Facilities

This guest post was written by Claire Wentz at CaringFromAfar.com who wants you to know the scoop on choosing the right senior care facility. She has links to other websites which I found extremely helpful. I have faith in Claire that it helps if you're looking!

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Statistics show that seven out of every ten people will need assistance of some form during their lifetimes. In 2018, over 900,000 individuals resided in residential care facilities. According to the numbers, individuals entering their 65th year have a close to 70% likelihood of requiring some kind of long-term support or aid in the future.

If your loved ones have reached the age where they need more help than you can offer, nursing homes or assisted living facilities may be the best option. However, locating the right one involves many considerations. The Tales of a Stroke Patient presents the following article on what you need to consider when researching senior care facilities.

Does the Establishment Provide the Services Needed To Fulfill Your Loved One's Special Needs?

Not all facilities possess the means to provide specialized care. For instance, not all of them have the resources and trained faculty to deal with problems arising from dementia. Loved ones who suffer from Alzheimer's or a similar disease typically need specialized memory care services. Urinary incontinence is another condition that may require more care than some facilities offer.

Another factor to consider is that assisted living homes and nursing homes are not the same. If your loved one is unable to cook and needs around-the-clock medical care and extensive aid performing daily activities, a nursing home may be more suited to those needs. While assisted living facilities offer access to similar services, the aid offered is not as expansive and these establishments provide more independence, such as allowing residents to cook, share rooms and participate in a wider range of recreational activities. Visit facility websites, social media pages and the facilities themselves to verify exactly what services they do and do not offer. 

Does the Establishment Meet Certain Standards?

With all the news stories circulating about poor nursing homes, it has become even more imperative to personally check the quality of the institutions that will house and care for your loved ones in their remaining years. Read reviews to learn from other people's experiences. Talk to the staff and gauge their enthusiasm and competence. Individuals that seem to enjoy their work are often more invested in their patients and provide better care.

Ask questions, such as "Are the workers required to undergo background checks before being hired?" and "Are employees licensed and trained?" Is the facility equipped to deal with dietary needs and physical disabilities? Does it have safety and handicap measures such as clearly marked exits, wheelchair ramps, handrails and good lighting? How frequently does the staff check on the residents? Walk around and get a feel of the facility, if possible. 

Does the Establishment Fall Within the Affordable Range?

The average cost associated with nursing homes and assisted living facilities varies based on location. Medicare may cover a portion of the expense up to a certain time, while Medicaid can pay for all of it but has stringent qualification requirements. Pick an affordable facility.

If you need funds, one way to acquire them is by selling a home. However, beware of hidden costs and remember that there are other considerations such as realtor fees when figuring out how much you can make from the sale. For example, if there is a mortgage, you need to look at the outstanding balance. The price you set will also be influenced by the average realty prices in the area. If you need help figuring this out, there are helpful online calculators that can estimate how much you could make from the sale. This will give you a reasonable estimate on which to base your decisions.

Taking the time to perform research and evaluate each facility helps ensure your loved one lives in comfort. When choosing, considering the cost and closeness is also vital.

Brought to you by Joyce Hoffman and

The Tales of a Stroke Patient, the true story behind my hemorrhagic stroke and its consequences, including gruesome health professionals, frightful depression, and near-death encounters. I'll take you on the journey in this blog I've written for over 12 years, but be prepared for a bumpy ride. For more information, please visit my website or contact me today for the chance to do a guest blog!

If You Don't Believe in God, This Video Isn't Your Jam

Just because you had a stroke doesn't mean that you wronged God, or vice versa. Maybe, just maybe, He has another plan for you.

Clem Suder, the man who showed me faith again--he a Christian, I a Jew 

It's the "Why" of Post-Stroke Fatigue That I Wanted Answers To!

Hippocrates, the father of medicine, said long ago in ancient times, "Suddenly a healthy person is seized with head pain, immediately the voice fails, he snores, and the mouth is open (gapes), and if someone calls or moves, he only groans, nothing with meaning." He was describing apoplexy, which came to be as stroke around the 1700s. 

Though doctors now understand the causes and effects of a stroke, the condition hasn’t always been well understood. Even now. Apoplexy, or stroke, is a disorder in which a person falls with no warning yet retaining pulse and respiration. 

In all that time, doctors still don't everything? Stroke is the fifth leading cause of death and the first in disability around the world. Well, it's time to bring stroke forward to the front burner!

One of the things about which the doctors are puzzled is fatigue. Take me, for example. I need to nap sometimes, less often because I'm taking Vitamin B12, the energy booster. But if I feel that a nap is about to happen, I don't want to take a nap because it means later bedtime. Rather, I need to take a nap. 

I asked the pharmacist if any of my medicines could add to the fatigue which is becoming more prevalent recently.

"I see here on the screen that you didn't change medications for a few years. So why are you tired recently?"

He was no help. And no, it's not COVID. I was tested--twice recently. 

The American Heart Association claims, "Fatigue is frequent and often severe, even late after stroke. It is associated with profound deterioration of several aspects of everyday life and with higher case fatality, but it usually receives little attention by healthcare professionals. Intervention studies are needed."

And so it goes, study after study, that healthcare professionals admit more studies on Post-Stroke Fatigue (PSF) are needed, but few, if any, are being done.

From the National Institutes of Health (NIH): "There are some data that point to right hemispheric strokes being the cause of PSF. Damage to the brainstem has also been linked to fatigue. However, fatigue is so prevalent in the general population of stroke victims, the two types of stroke...do not completely explain the cause."

The NIH also goes on to say, "Fatigue may improve with time, but it can also be persistent and some patients may never be completely free of it. Tasks that may have come easily before the stroke may be harder and therefore require more energy than they previously would." 

I've done a formula and the result is this: compared to what I used to do, before the stroke, it now takes 3 times as long than the prior. 

So I guess we have to wait longer for the "why" role fatigue plays in most stroke survivors' lives. I don't know how much longer, but it won't be tomorrow, or even next year.

Emotional Intelligence: Most Brain-Injured People Have It

Do you know what Emotional Intelligence is? Let's pause for a moment and define it. 

Emotional Intelligence is not one or a few but ALL of your brain's mindset. They include the following:

• Social Skills
• Motivation
• Empathy
• Self Awareness
• Self Regulation

SOCIAL SKILLS

It's foremost to know where you are and where you're going. Otherwise, it's like trying to make a long trek without a map.  First, you won't know how to start. Second, you won't know if you are drawing close or just walking around your destination. That is, you understand what your current social strengths and limitations are. 

Brain-injured people, after awhile, should know their strengths and limitations. 

MOTIVATION

There are many theories that point to why people do the things they do. But my favorite is the Drive Theory in which people are motivated to an action to reduce the tension that is caused by unmet needs. You might be motivated to eat in order to reduce the state of hunger.

The drive theory is based on homeostasis, the idea that the body is working to maintain a certain state of balance.

Brain-injured people ultimately know what to do to avoid scary behavior that cause their equilibrium to go haywire, not at first but after repetitive falls, for example.

EMPATHY

Empathy is the ability to put yourself in someone else’s shoes to communicate that understanding back in return. It's the ability understand people's situation and feelings from their point of view.

Many brain-injured people say, "You can only know how this [stroke or other brain injury] feels if you were to see it for yourself."

SELF AWARENESS

From understood.org, people with self awareness can: 

• Recognize their strengths and challenges
• Understand and talk about their needs and feelings
• Recognize other people's needs and feelings
• See how their behavior affects others
• Develop a growth mindset and learn from their mistakes

Brain-injured should be able to accomplish all on the list, with practice and lots of it.

SELF REGULATION

Dr. Steven Stosny says in Psychology Today, "Consistent self-regulation requires focus on your deepest values rather than feelings. It's also the best way to feel better. Violation of values invariably produces bad feelings, while fidelity to them eventually makes you feel more authentic and empowered." 

In other words, taking feelings out of the picture, what is the right thing to do?

Most brain-injured people, at least the hundreds--maybe more--that I met online (and after awhile) are more patient and inwardly compassionate, looking at what is right--the core values--than focusing on feelings which makes you angrier, frustrated, hateful. 

To all of the brain-injured people out there, wouldn't you agree that I'm talking, with lots of repetitions, acquiring emotional intelligence is already almost there for you? If necessary, think about it and read this post again to understand my point of view. 

We got this, right?

My Blog "The Tales of a Stroke Patient and More" Has An Update!

I stand by that old expression that has been attributed to so many: "If it ain't broke, don't fix it." I hate change but accept it--eventually.  

So I'm happy to announce on this snowy Christmas eve that The Tales of a Stroke Patient and More blog has a new home. After over 700,000 readers around the world (except Antarctica), I switched apps, a treacherous step indeed, and so I had to change where it now resides: 

https://talesofastrokesurvivor.blog

Coupled with the location change was a name change. There were two: I dropped the article "The" and the unneeded "And More" in the title. And after almost 13 years, which just seem like last month, I am definitely a survivor.

My memory of that place, the dreaded rehab center in Pomona, New Jersey, still remains, and I'm reminded of another quote said by Edward de Bono: "A  memory is what is left when something happens and does not completely unhappen."  

Anyway, so there it is. New location. New name. (And just in time for the) New Year.

Like It Or Not, It's Time For This Stroke Survivor's Top 5 New Year Resolutions!

This year has been tough, more for some, less for others like me who occasionally don't mind being shut in the cocoon to write. But, alas comes the time for New Year's Resolutions. I love to write resolutions because it gives me words and actions to be accountable for. So here goes!

1. I will never stop being a vegan. Veganism gave me more energy where I only take limited naps a month. I restrict my diet to only vegan things and the one food that I loved--corned beef--I don't miss at all. 

2. I promise to do my exercises regularly. Three times a week was told to me when I started out. But now, everyday is advised by the physical therapist. Sometimes, I'm tired and just don't feel like exercising, but I'll take a power (15 minutes) nap and try again.

3. I want to see Brain Exchange flourish continuously because I have devoted the rest of my life to survivors of stroke and other traumatic brain injuries (TBI). Sara and I started Brain Exchange that sets up a writing partner 1:1, like the old pen pal program, to everyone who joins the initiative that is EXCLUSIVELY for stroke and other TBIers and meetings where everyone shares the struggles and joy, plus a Facebook group called Brain Exchange. If you know anyone who fits the bill, please have them look me up on Facebook.

4. The one thing every therapist said--physical, occupational, speech--in the 12+ year I've had my stroke is drink a lot of water to keep you hydrated. I like tea and coffee, and there's no difference with water for hydration. But herbal teas and decaffeinated coffee are fine because the caffeine will make you more anxious if you have more than two cups of the caffeine varieties. But I like fruit-infused water. Throw some lemon in your thermos of water and it's being hydrated with water and Vitamin C all at once!  

5. I will refrain from correcting anybody who says "supposably" rather than "supposedly." As Dictionary.com says: "While supposably is a real (if rare) word, most people will opt for synonyms such as possibly or conceivably. Because many mistakenly believe others using supposably is a mistake, a lot of people avoid supposably so as not to invoke the wrath of people who are supposedly grammar snobs." 

I learned something new. I am a snob.

6. I'm almost a third done my memoir and I want to finish it by 2023. I have everybody in there -- my family, my childhood, my adult years, my sucky marriage, my suckier ex-partner. But writing comes easy to me, and I'm resolute to publish it. Stay tuned, readers!