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I was wondering if anyone had any experience with the end stage Parkinson's Disease. My Dad seems to be declining very fast and with each day it picks up speed. Before Christmas he was struggling but his mind was fine. We'd have conversations and I would take him to the doctor. He was eating by himself though I was preparing the food. In other words, he was still my Dad. But in the last week, he seems to have slipped away from me. And now he is just sleeping all the time. So much so that I can't get his Parkinson's meds into him. When he is awake, he's agitated all the time and seeing things that aren't there. He's been yelling at me though I have recently realized he's not actually yelling at me, he thinks I am someone else. It's become near impossible to get him to do anything or even help him to do anything. Is this what I can expect? I called in hospice over the weekend and we have everything we need, I would appreciate hearing anyone else's experience. I thought I was prepared for this, but now I am not so sure.

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I so relate to your post. My Dad, 83, Parkinson's since 2008, has changed dramatically in the past 6 months. No hallucinations, only the dementia, short term memory is a thing of the past. My husband and I are his caregivers 24/7 and have been for close to three years. We are reaching the end of our ability as we are burning out. We hope to have him move to an assisted living with extra care on med management and with memory. He is not ready for the memory care part of the facility yet, but if he becomes ready we wont have to change facilities. This one has a Memory Care section. Just move rooms.
It is so hard to watch them change and so rapidly at times. This time for me has been so gut wrenching and so much heart ache too. I am glad I am close with his PD dr as she is a great support on how to handle Dad and his needs. She agrees it is time for him to go to Assisted Living. Big Hugs
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So sorry to hear you are going through this. The truth is that no matter how prepared we think we are for the end, we're not. Its always shocking and overwhelming. You've put so much effort (literally blood, sweat and tears) into keeping your dad physically and psychologically healthy, that its gut wrenching to suddenly feel so helpless.

I experienced this with my dad a few years ago. His diagnosis was Alzheimer's but the symptoms sound identical. He was on a roller coaster for almost six months. We would have days of bedside vigil's, last rights, the works. He would then sit up, completely coherent, wondering what all the fuss was about and why hadn't anyone brought him a cup of tea! I was a deflated bundle of raw nerves when he finally slipped away peacefully.

In hindsight, there's two things I wish I had access to at the time; this forum and a book I just read, "With the End in Mind: Dying, Death and Wisdom in an Age of Denial" by Kathryn Mannix.
Coincidentally the author was interviewed today on my local station.
rte.ie/radio/utils/radioplayer/rteradioweb.html#!rii=b9%5F21318905%5F19148%5F15%2D02%2D2018%5F
Have a listen, I think your might find it helpful. And feel free to message me if you would like to chat. Take care.
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He must take his medications, else he will continue to worsen.
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Has he been checked for a UTI?
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Daddy passed 13 years ago from Pk. The end was rough. He was 'Ok' for a long time, then the decline that ended his life was quite abrupt. He suddenly couldn't swallow, so we fed him liquids. Too soon, he couldn't even do with that. Mother called in Hospice and he was gone within 2 weeks. They were peaceful, calm weeks. I had the opportunity to help with him and give him his morphine and Ativan and he was calm and looking forward to going. A few lucid moments, but most of the time he hovered between this world and the next for hours at a time. His final passing was with his room filled with us kids, our spouses, singing and prayers. We told him he could go. We watched as he slowly and peacefully walked through the door into the next world. It was about the most spiritual thing I have ever experienced.

I could only hope for such a peaceful passing for someone who bore this horrible illness with such dignity.
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My husband was diagnosed with PK in 2010 and dementia 5 yrs ago. He has had many periods where I thought he was really going downhill fast only to return to his previous state a week or so later. when he becomes agitated and then calms down he sleeps for a while or goes into some kind of trance and just stares with his mouth open for hours. Maybe his meds need adjusting, my husband was having more bad side effects from meds than it was helping so is now on hardly anything except anxiety med. good luck... This is not easy on anyone involved.
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If you do not have Hospice in place it might be time to do that.
They will help you with this difficult time.
They will help provide supplies and medications needed. You will have a team of people to help you and the entire family. From a Nurse, CNA, Social Worker and Chaplain if you wish.
You will how to prepare for the phases that are to come.
Their goal is to help provide comfort and relieve pain.
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Dad had PD for 10 1/2 years and passed just after Christmas. He had had some hallucinations in prior months, but nothing of real concern. In early Nov, he began to have violent hallucinations. By early Dec he'd had a significant weight loss, and we brought in hospice. He was really incapable of helping us help him with anything. No one seemed to have any idea how long he really had, even saying that hospice is often extended beyond the initial 6 month period. He passed in 3 weeks. PM me if you want to talk.
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