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Topic Slow recovery or end of life? Go to previous topic Go to next topic Go to higher level

By DandC On 2014.06.27 18:01
Our PWP has been diagnosed for 10+ years and is in the advanced stages of PD. He's had many falls and chronic UTIs from an indwelling catheter since 2011. Last Friday he feel and broke his hip and had replacement surgery Sunday. On top of the hip, he also had another UTI and also contacted an antibiotic resistant infection in the hospital (VRE), which was treated with the "antibiotic of last resort." Before the surgery, he was confused and hallucinating, which isn't unusual with these infections, but he was also extremely agitated and restless, fidgeting with his hospital gown and bracelets, catheter, bed clothes and anything else he could get his hands on. He was not "awake" at all, but his hands and body didn't stop moving and fidgeting with things for more than 12 hours or more, and had persisted off and on since Saturday. He also hasn't eaten since Friday and any food he's given he aspirates. He was discharged to rehab yesterday and all of these conditions except the infections are worse. When he was transferred to rehab, he thought he had died and was asking everyone where he could find his wife who died four years ago. My wife and I have cared for him since then and both agree that something is different this time. We also know that, however, that PD does strange things to people (an obvious understatement) and that standard treatment protocols can either be ineffective or disastrous for PWP. My question: are we crazy? Is this an end of life scenario or just another manifestation of PD (ie, slow, complicated recovery)?

By ResistanceFutil On 2014.06.27 19:55
Your PWP's doctor may be able to better answer. Also, did the PWP make his end of life wishes known before his illness had progressed? I am a strong encourager to get hospice involved as early as possible. The hospice intake people and the physician involved with the PWPs can decide if hospice is appropriate. Death does not need to be near, but there are decisions regarding future medical care that must be determined. The support from hospice for both patients and family is wonderful and can provide many, many months of less stressful care, if qualified. You may want to talk to the doctor or call a local hospice organization to help get some answers.

By LOHENGR1N On 2014.06.27 19:58
DandC, A hip replacement? Wow that's major surgery! When a patient with Parkinson's Disease is put under (anesthesia) it can take a long, long time to come out of it and to recover from it. Stress of the operation, being in the hospital, strange surroundings and noise in the hospital all could lead to unusual behavior. When I say coming out from under the anesthesia taking a long time I mean what may take a non-Parkinson's hours can take us days, what takes weeks could take months. Plus you have him without his medications during the operation and probably recovery room (this can throw Us for a loop and take days to get our medication back to levels per-operation). Everyone is different but You're not crazy! I'd say if I had to guess it is and will be a slow complicated recovery. It is so important to make sure His Neurologist WRITES down his dosing times of medications for the staff at rehab. By this I mean say if he takes Sinemet for example 4 times a day every 4 hours till bed time. To the staff that means 4 times a day or every 6 hours, which make Us go 2 hours longer without our med's during the day and can have a profound effect on our functioning. Unless the doctor writes the time between doses most staff will not listen to you or the patient. I hope this helps you some and gives a better grasp as to what's going on and as always run it by the doc. Take care, best of luck and hang in there

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