As some of you are aware, my father in his second back-to-back rehab post hospitalization, the latter for 4 simultaneous infections. One of the conditions relates to his dysphagia. He's in a very good rehab center for the second time. I've been very pleased with the staff and consulting doctor. For the second time in this second rehab, I've met an NP with a rehab/physiatrist medical group, the same one I decided to boycott years ago after being told by one doctor somewhat bluntly that Dad is old, and he's going to have pain, and there's nothing to do but get used to it. I boycotted them as well after one of the doctors refused to script for TENS in PT I requested. I've had TENS therapy in PT; it works just as well if not better than anything for me in relieving pain.
In addition, I wrote on the intake papers that I won't allow any medical or personal information on me to be shared with any ACO. That caveat was neglected and an ACO contacted me. That did it. I don't return to or even consider a firm that can't follow basic instructions on privacy issues and release information to a for profit corporation making money off of my medical information and Medicare. Now, that firm is "treating" my father; it wasn't involved the first time, so this apparently is a new arrangement. Given that the therapists and the therapy director are top notch, I don't see what this firm is adding. This group is finding its way into what I considered a top notch rehab facility, and the NP is making decisions that I don't feel are either consistent with the facility's policy (nominal meds) or our own philosophy.
One of those decisions is to use a scopolamine patch on Dad's neck to decrease the secretions and/or counteract the thickness of the secretions and mucus. I did some quick research as soon as I got home and learned that scopolamine is countraindicated for someone who has glaucoma, which Dad does. It's unclear to me how she justifies this, given that that information was included in the Discharge Instructions from the hospital. So I called the evening shift nurse and asked her to hold the patch until I spoke with the rounding doctor.
I'm obviously unhappy about this, but also don't want to deprive Dad of something that might mitigate the effect of mucus in his dysphagia. But I'm still very uncomfortable with trying an entirely new treatment on a 99.5 year old man. So I'm wondering though if anyone else has any experience with the scopolamine patches for someone with dysphagia. Good, bad, reactions - I'm interested in it all.
Thanks for sharing your experiences.
Position a wedge at their back so they can not roll back. Place one leg over the other and bend the knee , this is more comfortable than having both legs on top of each other. Also prevents the pressure from one knee on the other leg.
Easiest way to figure out the best position is to lie on your side yourself, get comfortable then try to mimic the same positioning of each limb. (More difficult than it sounds.) I used a lot of pillows to cushion legs, arms, head, neck...
But to not hear that gurgle sound and when I finally saw him sleeping comfortably it was well worth the time it took to get him all tucked it.
However, Dad fell out of bed early Thurs. am. No one knows if the complications he's having now are from the fall or the patch. In the area he fell, it would be hard not to have hit either a chair or the oxygen concentrator.
Since Wed., he's now developed extreme weakness, more intense coughing, more sleeping, less eating, twitching of the extremities, deep throaty voice, and some abruptness with me. He can't stay awake for more than a few minutes.
The staff is concerned, as am I, and monitoring him closely. Labs and chest x-ray were ordered; doctor mentioned possibility of another bout of pneumonia.
Another ominous sign is that the stump of the former index finger (radial arm saw accident) has turned from purple on Wed. to black today. I asked about gangrene; nurse was unsure. Doctor said it could be from oxygen deprivation, another issue b/c even on 5 liters, he desats when he moves around.
He goes on Palliative Care tomorrow; some of the staff are already suggesting moving to Hospice Care. Either way, he unfortunately won't be coming home. (Stopped by his house tonight; what a strange sensation and sadness to know that he'll never return home.)
Doctor said perhaps a week, or less. I kind of expected that, but we'll see what the labs and x-ray show.
Thanks to everyone who answered. I will try to answer more individually, but things just changed so quickly, and I need to start making some arrangements. And I'm emotionally exhausted.
confusion, hallucinations, difficulty urinating and rapid pulse. He is a very mild mannered dementia person in the late stages so these were not his norm and definitely not worth the benefit of the patch.
Since your Dad is so much older, I would worry too- Seems like they are so much more sensitive to drugs and side effects. Maybe they are thinking the comfort of those secretions is something they can control and seem to think it is more important than his pressures/vision at this point. Keep 'em on their toes. Remind them of his glaucoma. Seems like hospital and rehab stays are more work for us as caregivers!!!! I'm following this to see what happens! Also just curious- does your dad have Parkinsons?
This is a common but off label use for Atropine.
I do not know if you could get a regular doctor to order it to see (no pun intended) if it works but if Hospice is involved they might be willing to order it.
I had, previous to the Atropine given him Benedryl. He had always had allergies and the Benedryl worked well but it does make you sleepy and gives me a "foggy brain" I figured a foggy brain is the last thing a person with dementia needs so I discontinued the Benedryl and went with another allergy pill that was a "non drowsy" one but I do not think it did as good of a job drying up secretions.
How much longer is Dad likely to be at this rehab? Where will he go after that? I guess it would make a difference to me if he were leaving in a week or in a month.
My husband, Coy, was constantly drooling, clearing his throat, and spitting out fluid. He kept a plastic bowl spittoon with him constantly. This bothered him a lot. The hospice nurse suggested a "motion sickness patch" that had the side-effect of drying the mouth. She said it may actually cause too much dryness, but we could just stop it then. It don't know what this was, but from descriptions it was probably Scopolamine. We tried it. It worked a treat! Coy was much more comfortable without constantly spitting out fluid. Of course, he was on hospice and no one worried about possible withdrawal, or other side effects. If we noticed side effects, we'd stop. (Coy did have dysphagia, but I'm not sure the patch was suggested for that reason.)
My mother drooled a lot toward the end and I talked to the nursing home medical director about the possibility of trying such a patch for her. The director asked if the drooling was bothering my mother, or seeing it was bothering me. Well, she never seemed to notice. I guess it was more that it bothered me. She said they watch that the chin does not get sore, but otherwise they consider drooling a cosmetic problem. If it isn't bothering the patient they tend not to want to add another drug. I accepted that.
My suggestion is to try to keep your mind as open as you can, given your previous experience. Make a list of the questions you want to ask, and consider the answers carefully.
What I've read is not that scopolamine is necessarily contraindicated for someone who has glaucoma, but that it should be monitored carefully in that situation. I'd ask if the glaucoma has been taken into account, and why they think some risk there is justified by the dysphagia benefit. (Almost all treatment options are tradeoffs.)
Scopolamine is not a new treatment. Did you mean that it would be a new treatment for your dad? But if he has new symptoms or worsening symptoms, wouldn't you consider a well-established drug that is new to him?
The really disastrous thing you mention about this medical group is their disregard of your privacy rights. Did you report them? How did they defend themselves?
I borrowed a TENS unit from my son (who had it for therapy after an accident) and fully read the manual. I concluded that it would not be useful for the kind of pain I had. So, I think, denying someone a TENS unit could be a legitimate medical decision.
Poor patient communication is, unfortunately, fairly common.
But the privacy violation ... I can't think of any justification for that!
Try to establish a good relationship with this NP. You are both presumably working in your father's best interest. Don't make accusations, but do ask questions.