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Topic End stage here? Dad is fading fast Go to previous topic Go to next topic Go to higher level

By HKMP5N On 2013.08.16 08:13
Greetings all:

I am an only child and my Dad is my PD patient. A few weeks ago Dad and I still went out to eat and he managed fairly well. Sure, his walking and movements are severely degraded now but he was still doing well enough. Last weekend was a different story. He called me twice with "something is not right, I need to go to the ER!!!!". I called an ambulance for him (I live 1 hour away and the ONLY care taker for him) and he goes to the ER.

ER takes blood, runs a CT, then come back and say everything looks normal. Currently Dads urine shows a really dark brown color. How can this be when his labs "look normal" as the ER said?

Also, Dad has gotten so weak he no longer can get out of bed, so basically he is bed-ridden. Dad has requested a wheel chair so I figure he has walked for the last time. I have him ready for assisted living but they are trying to find someone that can do his TB test before they allow him to enter.

I am an only child and all my Dad has in terms of care. I am only 43 years old and honestly I am beat down. I have given, given, and then given more to help him and I don't know what else I can do.

For those experienced here. Is my Dad coming close to the end here?

By LOHENGR1N On 2013.08.16 08:37
HK, Your Dad may need an adjustment in medication, sounds like it's not "holding" or doing it's job. Have you run this by His neurologist? Many times the level has to be changed and it results in seemingly miraculous results. Don't forget We have to tinker with dosage (always under Doctors supervision) to compensate for the loss of more dopamine producing cells in the brain. His dark urine is probably resulting from his Carba/L-Dopa (Sinemet) which has as a side-effect darkening our urine. Take a breath, talk to his neurologist expressing your concerns and you might find you get quite a bit of your Father back. Also did they check for infections at the hospital? As they can also knock Us form a loop and rapidly. Take care, best of luck and hang in there.

By HKMP5N On 2013.08.16 08:48
Well, I took him to his neurologist 2 weeks ago. A new medication was given for newly diagnosed myasthenia gravis. The DR saw him in pretty bad shape and kept his sinemet and ropinirole the same. Whenever I do call over there I am lucky if I get a call back in 2 days. Then, god forbid if I miss that call they never call again.

By Pearly4 On 2013.08.16 10:59
So hard to predict end-stage or time of death, especially with two diseases involved let alone Parkinson's alone. I saw my mother overcome a lot and bounce back repeatedly.

Have you thought of involving Hospice care? Doesn't always mean imminent end-of-life care, but on-going care in a terminal disease situation as well. And someone would be looking in on him and providing you with more frequent and reliable information. Sometimes covered by insurance and/or Medicare. They will provide assistance in home, or even in some nursing homes, hospitals, etc.

Nothing is simple, but I guess I'd start by contacting a local hospice care group or even his doctor.

By HKMP5N On 2013.08.16 13:11
Pearly, I have selected an assisted living facility for him to move in. At this point I have to make arrangements to get his TB test done (requirement of the facility). At this point he has told me he hopes to walk again one day.

By parkinit On 2013.08.16 23:28
Two things other than med adjustments this could possibly be per my experience:

1. One trend I have seen in my spouse is that his PD symptoms quickly escalate when he starts getting a UTI. I always see the PD worsen before UTIs, then headaches, then back aches, then possibly nausea, and lastly, a fever.

Did they test his urine for bacteria?

2. Also, my spouse has a few times told me he thought he was dying and "take me to the ER." He couldn't tell me what was wrong, he had no temp, no aches, his BP and oxygen levels were normal. They found nothing wrong at the ER. I suspect it was a panic attack, which is common with PD as well.

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