Today was a day of bodily functions. I got covered in urine from doing a squat pivot transfer for my poor incontinent lady, and I spent the whole day worrying about poop.
One of my patients recovering from a CVA (stroke) is a lady who is being discharged tomorrow. She goes by the name Cupcake (obviously changed from her real name!) and she has done really well. We have cleared her to walk around the unit without supervision, and her affected right arm has gotten really nice return from the hemiparesis caused by her CVA. The one thing that has continually bothered her is the lack of feeling in that arm. Her brain can still send her hand sensory information (so that she can feel her fingers tingling) but it can’t read the sensory information her hand sends back (so that she can’t feel whether her hand is in cold or hot water). This is not the end of the world, but it is annoying as all get out. Think about it—not being able to tell exactly what your hand is doing unless you are looking at it? The really unfortunate part is that there is no magic cure for this; while we can do things to encourage recovery, either your feelings will come back or they won’t. So, we had talked about this, how it was affecting her life, and I’d offered compensatory strategies to try to make the situation less aggravating. She is a fiercely independent, self-sufficient woman, and had been working very hard to be able to take care of herself again despite her challenges.
This morning, one of the nurses came into our office and asked, “Who is giving Cupcake a shower today?” I told her that I was, as we try to help our patients get dressed their last day of therapy so we can give an accurate depiction of their functional levels on discharge. “Oh good,” she said. “Can you two practice having her wipe herself?”
This is not at all a random thing to ask an occupational therapist (OT). “Toileting,” as we call it, is an essential part of our therapy plan as it’s a key part of regaining your independence. The unique part was that I was being asked this about a patient I thought was already independent in this area. The nurse explained Cupcake’s family was concerned that Cupcake wasn’t able to clean herself after a bowel movement because of her decreased hand function and that this would be a huge problem when she went home. I told the nurse that I knew Cupcake found it challenging to clean herself because of her sensation issues but that there was no physical reason she couldn’t do it. I promised I would talk to her this morning.
Well, long story short, I didn’t get the chance to mention it during our session. Cupcake’s roommate was in the room with us and kept chatting to us the whole time. Between hearing the “handsomeness” of all the male employees debated and the stories from the book this lady planned to write (“once my hand works again”) about rehabilitation called “On My Way Through Stroke I Met a Cupcake,” Cupcake and I were thoroughly distracted and the issue of toileting never came up. Instead, I planned on asking her that afternoon, when we had another session and presumably a little more privacy.
Cut to an hour later when Cupcake’s discharge planner comes practically running into our office and pulls up a chair at my shoulder. “Ann, can you please help Cupcake learn to wipe herself?” she asks, clearly upset. “She’s so upset and embarrassed about it, and her family is so worried. They don’t feel emotionally able to help her with this, and as of right now they’re hiring someone to do it.”
“So they are going to have someone sitting around waiting for her to poop?” I asked in total disbelief.
The answer was yes. I explained to this discharge planner what I had explained to the nurse, that there was no reason Cupcake COULDN’T wipe herself, what I thought the problem was, and what the plan would be: I would review the compensatory strategies with Cupcake and practice them if need be. The discharge planner left, leaving me convinced that I was singlehandedly responsible for this family’s stress over the discharge and Cupcake’s mental anguish over her inability to toilet herself.
Finally I tracked Cupcake down and pulled her aside. Cupcake is a sweet woman (as her name suggests) but she is very private and proud; we have formed a good rapport, but she doesn’t really discuss her feelings or her issues with me voluntarily. I was frankly very nervous to bring up this topic with her, since she is definitely the type to take offense if you cross a boundary. So I tried to be respectful as I asked, “I just wanted to check with you—apparently you have some concerns about cleaning yourself?” I may have used a gesture to indicate what I meant. There can be no shame in toileting discussions.
She gave me a “you must be shrooming” look and said, perfectly calmly, “No, I’m good.”
“You are?” I asked. Or squeaked.
“Sure, girl,” she said. “I had some trouble before, but I figured out that if I use those wet wipes it’s a lot easier for me. It takes a while, but I can do it.”
“So you feel comfortable? You’re not planning on hiring anyone to help you?”
Again with the shrooming look. “No, we’re good.”
We talked about the issue a little bit more so I could cover my bases, but basically the gist was, she had been nervous, but now she felt comfortable, her family felt comfortable, and everything was fine. The stress I’d felt since 6:50 that morning when the nurse came in (there were more elements adding to the stress that I’ve not mentioned because of length, but trust me, there was stress) was eliminated the moment I actually talked to Cupcake—a lesson about procrastination, I guess. Cupcake was feeling good about going home, and the crisis was averted. And I was reminded again why occupational therapy is important.
How much do we take for granted? Especially when it comes to our bodies and the daily routines that depend on them working the way they always have? Think about what happens when you have a hard workout and the next day your quads hurt whenever you move—think how aggravating it is to try to move anyway, to try to sit and stand and walk when your legs curse you with every muscle flex. You can be the most appreciative, thankful person in the world, but do you really appreciate how much your hands do when you do things like go to the bathroom? And Cupcake? A woman who was born with a congenital deformity of her left arm but never applied for disability since it felt like a cop-out, a single mother who worked two jobs so that her infant son would know nothing came for free. One day something in her brain goes “pop” and her whole life—and fiercely independent worldview—is changed. She can’t use her one arm the way she wants, she can’t walk without help, and she can’t clean her buttocks after having a bowel movement, which to her was the most intolerable thing of all. It may seem silly, but try walking around knowing that you can’t keep your butt clean, and tell me that that kind of shit wouldn’t matter to you (pun intended.)
CVAs and other physical ailments affect everything about a person’s life. What I love about occupational therapy is the fact that we care about everything. Yes, we work on the obvious big things like recovering arm function and being able to stand again, but we are also the people who look at the little things (“I can’t tie my shoes”) and acknowledge them as equally important. We sit down with our patients and say, “Ok, what sucks right now, and how do we fix it?” We aren’t magicians, and we aren’t any more important than other medical professionals, but we are trained to care about what our patients care about and thus to fill the gaps that can be found in the recovery process.
It was nice to be reminded of that, and of why I feel good about what I do—most of the time anyway, you know, unless I’m covered in incontinence. And while I hope you never need an OT, I sincerely hope that someday you too can meet a Cupcake.
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