As I mentioned in another post, I sometimes get some AWESOME patient stories.

Take “Barry” for example. I’ve had him for 5 different admissions over the past, oh I dunno, 3 years?, because of various major problems that unfortunately have come up with him over time. Both he and his wife are nice people, they’re realistic in his abilities, they do most of what I ask them to do (read: they’re compliant) and although they speak fluent English, their mother tongue is Hebrew so I get to hear accents, terms and phrases that I haven’t heard since I was a very little girl when my Russian-born paternal grandfather was alive. With all of that, every time Home Health Company #1 (of 2) has offered Barry to me, I’ve always said yes.

I have Barry right now because he recently had brain surgery to remove a benign brain tumor that he had had for several years but was now giving him more problems. The good part about the tumor being removed is that his vision, which had been nearly all, if not totally gone because of the tumor, had now partially returned. The bad part was that the surgery/anesthesia had left him very confused, disoriented and disorganized, as well as weak from having such a procedure and laying in bed for so long. So my goals were to get him stronger and more self-sufficient, re-teach him how to use his eyes again and work on his ability to, well, think.

Working on strength and self-care was easy…it’s what I do. Even working on his vision was simple enough because it really only involved reminding him to look at things to help him get the job done (after a few years of being blind, it’s no longer a habit to use your eyes). However the “brain stuff, that was more of a challenge. Not a big one though…I just went back to my days of working with my patients who had psychiatric disabilities, who many not be in tune with the “here and now,” and did a lot of reality orientation, number work, memory games, problem solving, following game rules, etc. And slowly but surely (this is his 4th week with me) he’s been getting better.

Except for the riddle.

Q: “What do you call a sleeping bull?”
A: “A Bulldozer”

I frequently use this riddle for my patients who have memory impairments due to injury or illness (not due to Dementia)…their response, or lack thereof, helps me to determine “where they’re at” in their cognitive abilities. When I tell it to them, I look to see if they remember my telling it before, if they remember the answer (with or without help, and if so, how much help) and if they “get it” (which can be determined with a laugh or a groan). Barry started off with laughing at the joke (so he “got it”) but not remembering it from visit to visit (short term memory deficits), to eventually knowing that I had told him the joke but couldn’t remember the answer (improvement of the STM), to being able to remember the answer with a hint (i.e. “The answer is a ‘bull-something.’ A Bull what?” – to which Barry would usually first say, “Bullshit! A bullshitter!” with his cute little accent). He still can’t remember the correct answer from visit to visit (usually 48 hours apart but occasionally just 24 hours) but can usually remember it in the 45 minutes between the beginning of the visit and the end of it. He also tends to remember “Bullshit” and his other totally bizarre, no idea where it came from answer of “Alligator”. So he’s not there quite yet, but almost.

Other forms of reality orientation include working on the date, names of family members, etc. He’s starting to get there almost consistently (although he fluctuates back and forth between thinking it’s the year 2010, 2011 and, my favorite, 210) so we’re making it a little harder by seeing if he can differentiate between the various Home Health people who come to visit him.

Sharon: “Barry, what’s my name?”
Barry: “Your name is Sharon.”
Sharon: “That’s right! Good!”
Mrs. Barry: “And why does Sharon come here to see you, Barry?”
Barry: “To torture me!”

Yeah…he’s almost ready to be discharged, LOL!

I do my best to make my therapy sessions as fun and enjoyable as possible – it keeps the patient motivated, redirects them from the hard work I ask of them, etc. But sometimes there’s no way to get away from the tragedy of the moment.

I met “Jack” yesterday. He’s in his late 60’s and recently had a huge, massive stroke that was so bad they had to open his skull to allow for the swelling within his brain. He spent several weeks in the hospital, then several weeks in a Rehab place but still needed a lot of care. And I mean a LOT of care. The Rehab place strongly suggested that Jack’s family send him to a nursing home but they wanted to bring him home. It’s their right to choose that, so home he went.

Enter Home Health. The whole shebang, too…Nursing, Physical Therapy, Occupational Therapy, Speech Therapy, Home Health Attendant (to help him with bathing) AND a Social Worker.

Why?

Because this guy is out of his mind.

Usually a stroke causes weakness on one side of the body or the other. Sometimes there may be varying degrees of problems with eating or talking or how you see the world. Unless you were very weak to begin with, you can usually regain SOME part of your life, even if it’s not the way you used to do it, or if you always need some help to do it. But sometimes a stroke will occur in some areas of the brain where it’s not so much your movement that’s messed up, but something even more important.

How you think. Understand. Your entire personality.

And that’s Jack and his problems resulting from his stroke.

Physically, he’s fine. Oh, he has some issues with his balance but he can walk (rather, RUN) around the house, take his clothes off, etc. But:

— He can’t talk (well, he can but it’s just gibberish and half-sentences that have no realistic context)
— He doesn’t seem to understand what you’re saying (he will follow visual cues…so if you put your hand out to shake, he will shake it. But if you say, “Jack, shake my hand” without putting your own hand out, he does nothing)
— He often doesn’t know what certain items are for (it’s called agnosia. Put an everyday item into his hand and he has no idea of what to do with it)
— His attention span is *about* 1 minute
— All he wants to do is go outside. Outside is dangerous because there’s uneven surfaces and cars in the street but he doesn’t realize that – his judgement is horrible and he just wants to GO. RUN. And he knows how to go into the garage and press the button for the garage door to open.
— He doesn’t seem to recognize his family, except as people he vaguely knows (it’s hard to tell because he can’t tell us. But he was more affectionate with, but also more physically ready to hit his wife than me).

I hate to even say it, but the only way to explain Jack’s behavior in layman’s terms is that he acts like a belligerent drunk who is THIS CLOSE to passing out. I think you know what I mean.

The only way anyone has been able to control Jack since his stroke has been with medication. Heavy-duty sedatives that make him sleep his life away, because without them he’s running around the house, trying to leave and getting ready to hit his wife, the woman who he perceives as the one hindering his ability to leave.

So we have a guy who is sleeping most of the time and agitated when he’s not. And he doesn’t understand anything.

Not really a candidate for Occupational Therapy at this time.

I spoke to my supervisors – we agree there’s nothing I can do for the guy right now. So after some teaching to the family about safety (get new locks on the door that he can’t open, get alarms on the door in case he still figures out how to open the door anyway, buy a Medical Alert bracelet for him in case he gets lost, talk to the doctor about continuing to play with his meds to get him on more of an even keel, call 911 if he’s agitated enough to try to hit you, etc.), I got ready to leave. The family was still at wit’s end though, and were practically begging me for more help. I had mentioned to look for things to keep him busy…they had already figured out he could fold laundry so he was folding towels, on and off, for short periods of time. I had also suggested rolling a ball of wool or yarn – again, a simple, repetitive task (repetition helps to soothe and relax – that’s why people are told to “count sheep” when they can’t fall asleep). Perhaps using a broom to sweep the house. Maybe the exercise bike, if the Physical Therapist said it was OK. I asked what he liked to do when he was healthy…they said he played soccer and enjoyed music. I suggested that perhaps they could involve him in music. At that point his wife pulled out his ukulele and gave it to him, I guess to see what he would do with it. And Jack, whose mind was one big mess of global confusion, settled down for 3 whole minutes and played that ukulele. It was incredible. As screwed up as he was, that part of his brain still worked. He sat on the couch and plunked a tune while his wife sat at his feet, crying. He was so close, yet so far away.

He didn’t play for long…his need to “go to work” overtook him and he was running around the house again. But for those few moments, when I could see a glimpse into the man who was lost, most likely forever, I felt totally helpless. He was a relatively young guy who had been healthy and strong, had a wife and family who loved him to pieces and he was totally lost because of his sick brain.

And I could do nothing.

I’m a health care professional. My work, my entire career, is based on helping people. When I can’t, I worry about my adequacy in my job…do I just not know enough? Surely there must be SOMETHING I can do to help turn some of this sad tragedy into hope, be it ever so small, for the future? But for him, I had nothing.

And it sucked.

I called the nurse to let her know I had seen Jack (both asleep and awake – I even went home and came back later to be able to see him in both states, in case he was more reachable in one than the other) and that there was nothing I could do. I also let her know about my concerns for his and his wife’s safety when he was in his agitated state. And in talking to her, I discovered I was not alone…apparently both the nurse and the Physical Therapist were in the same boat as me and really had little to nothing to offer this guy right now, when he was so unteachable. Speech Therapy hadn’t seen him yet so perhaps there’s hope for that but all of the rest of us were done.

There are still some unanswered questions for Jack – as I said earlier, nursing home placement was recommended and they refused, apparently still in denial, despite being told about the slim chances of his recovery (statistically speaking, people with brain injuries due to massive strokes like these don’t do very well). Seeing how much work he is, I have a feeling that may come up as a viable option for them in the not-too-distant future.

Still though, it’s a shame. Such a loss.

I love my job. I really do. Except for the times, here and there, that I hate it. Not because of what has been done, but because of what can’t be done.

I’m sorry, Jack.

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