This week's shadowing was quite an eye-opener. Things were a bit chaotic due to the July 4th holiday and the resulting change of schedule (I observed Tuesday this week instead of Monday). I went to bed Monday night thinking I needed to be three towns over at 10:30, so I set my alarm for the normal time. Once I got up and checked my mail Tuesday morning, it turned out I needed to be at the office at 10:00 instead. I was about five minutes late, but since Molly was still with her previous client, no harm done. This up-in-the-air quality seems to be an inherent part of home health, so you just have to roll with it.
We had to drive separately, since I was heading home straight from the client's house while Molly was driving on to her next client. Molly actually pulled over on the way there and got my cell number so she could brief me during the drive. I felt a little less than law abiding listening to her talk about the case while we were driving, but in hindsight, I'm really glad she did.
Have you ever had a friend or family member with ALS? It's a degenerative neurological disease where the motor neurons that control voluntary movements slowly die off. Basically, over time, your muscles waste away, and you gradually lose the ability to make voluntary movements. Your mind, bowel and bladder function remain intact, as does your heartbeat, but your body becomes less and less responsive, and eventually most people are unable to breathe on their own and die of pneumonia, infections, or other respiratory problems.
[Note: As always, the client's identifying details have been changed.] I wouldn't know this to look at Janet, the woman who opens the door to us with a smile. She is neatly dressed and put together and has kind, intelligent eyes. Molly introduces me to her, and her handshake is not very firm, but it is there. I also meet Janet's mother, who is helping take care of Janet.
We sit down at the table, and Janet reaches for a small whiteboard and a black Sharpie and starts writing with a neat, controlled hand to ask Molly a question. Janet's symptoms started with difficulty swallowing and slurred speech. Less than a year later, she had to give up a much-loved job. Once the neurologist diagnosed her with ALS, his only interest was in documenting her decline with quarterly visits. He didn't even think to suggest OT to her. She was already dead to him.
Her speech may be gone now, but her wit and intelligence are intact. She and Molly are discussing her left index finger, which seems to be stuck in flexion (bent inward toward the palm). Molly fashioned a cast for night wear to see if tight ligaments were the problem, but they were not. Molly and Janet work with some kinesio tape to get the errant finger to stay in extension. After a little practice, Janet is able to apply the tape herself, and is pleased not to have to ask someone else to do it for her. They then discuss stretches to keep the relevant muscles from tightening up, and Janet writes in frustration, "Why didn't the dr or the VSN recommend this??" All Molly can do is shrug.
Molly and Janet discuss hair-washing and hair care for a bit, and Janet writes that she is having trouble getting many of her pants and blouses on and off. After some discussion, Molly suggests adding hidden velcro closures to the sides of the pants. She demonstrates how the velcro can be added without changing the pants' outward appearance (I think this is absolutely brilliant!), and Janet agrees to let Molly take a test pair to a tailor and have them altered.
Next, Molly writes that she is concerned about her gait and that she feels she is getting more awkward. Molly watches her walk a bit and says the problem is that her movements are very straight-ahead and that there is little lateral movement in her neck and spine. Molly shows Janet some exercises to help maintain her lateral trunk and neck movement.
Janet is exceedingly grateful for Molly's help and worriedly asks, "Is there a limit on # of visits?" Under current rules, the answer to that question is, thankfully, no.
Back out in the hot sun, walking to our cars with bottles of cold water Janet insisted on giving us, I can't help but remark to Molly, "I think you're the only healthcare professional that even gives a darn about her any more." Molly reluctantly agrees. How sad is that?
Molly said OT is considered palliative, and thus not really necessary, in cases like this. That attitude makes me want to scream and throw things. It's easy to write someone off when you're not that particular someone, the thinking, cogent, fully aware human being who is trying to keep getting up and showering and dressing and LIVING every day, probably for at least a few years. All I know is, Janet deserves to live as much as she can for as long as possible. Isn't that obvious??
Observation time this visit: 2 hours
Total observation time thus far: 7 hours, 15 minutes
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