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 End stage? 
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Joined: Sat Apr 01, 2017 10:21 pm
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Dad was diagnosed with LBD about 3 years ago. Had bad bout with delusions in early stages, very very bad and violent. That was eventually resolved with medication and things were acceptable for him to be at home with mom until earlier this week. He has been completely incontinent for a few months but could change his own Depends, walk on his own, dress self, etc, just slowly. In recent weeks he's been sleeping more, but this week he was suddenly unable to get out of bed or walk at all. We took him to the emergency room where he was evaluated for such things as stroke, heart attack, infection, etc., and all came back negative. He is at a state of the art medical facility, and no stone was left unturned. Ultimately, the dementia specialists opined that this was a next level of his LBD. They discussed how this disease is not generally one with a gradual decline but rather has plateaus followed by steep declines. Two days ago he was no longer able to feed himself, opened his mouth like a bird, put food on the spoon, but then did not seem to figure out how to get the spoon to his mouth. Yesterday he had extreme difficulty swallowing and has been put on a diet of puréed food. Today he was diagnosed with aspirational pneumonia as a result of his aspirating while being fed solids yesterday and put on oxygen and IV antibiotics. The plan before today was to attempt a rehab facility to see if he could get any strength back while also looking for a long-term care facility. His cognition has also drastically declined. He is talking very little, knows who we are but isn't interacting with us or the medical staff at all, and is not interested in anything - no tv sports or newspapers, his prior passions I am wondering if he is approaching the end of life and if we should be asking the doctors about hospice, or if he may rally. It is so hard to say with this disease, looking for any input from those who have already been through this.


Sat Apr 01, 2017 10:42 pm
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Joined: Sat Mar 25, 2017 1:32 am
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Hi,

I'm so sorry you and your family are having to go through this, I know from experience with both my parents exactly how hard this is. Unfortunately, and I really hate to say this, although vastly hastened, your father's story sounds exactly like the last six months of my mother's life. We lost her to DLB last March. In the end, palliative care and hospice were a Godsend. They relieved so much of her pain and did away with many things (meds, treatments, etc...) that, in the end, were unnecessary and would have been uncomfortable and painful for her..

Again, I'm so sorry you are having to go through this. I hope you, your father, and your family find some form of comfort during this difficult time.

Randy


Sun Apr 02, 2017 4:14 am
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Joined: Mon Apr 03, 2017 8:13 pm
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Michdaughter wrote:
oday he was diagnosed with aspirational pneumonia as a result of his aspirating while being fed solids yesterday and put on oxygen and IV antibiotics. The plan before today was to attempt a rehab facility to see if he could get any strength back while also looking for a long-term care facility. His cognition has also drastically declined. He is talking very little, knows who we are but isn't interacting with us or the medical staff at all, and is not interested in anything - no tv sports or newspapers, his prior passions I am wondering if he is approaching the end of life and if we should be asking the doctors about hospice, or if he may rally. It is so hard to say with this disease, looking for any input from those who have already been through this.


My husband is about 1-1/2 steps behind your Dad. He has had 2 "off the cliff" events over the past 3 months. First was a fall and 2nd was a bad head/chest cold. It seems to bring on a new lower level plateau. But never a recovery of any level. He doesn't yet qualify for hospice, but I wouldn't hesitate to bring them in and discuss options. Doctors aren't very good about discussing stark realities. Dementia patients qualify for hospice under different conditions and often, even when their life expectation is beyond 6 months. Good luck

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jjKing, caregiver


Sun Apr 09, 2017 7:38 pm
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As an update Dad was placed on hospice a week ago. But as is typical with the Lewy Body "roller coaster" he actually seems to be improving. He did not want to eat at all for over 2 weeks, drinking very little, and socially withdrawn, until yesterday. Today he had lunch and dinner - a few bites of soup, yogurt, etc. Not a lot but much more than before. He is also engaging in conversations, which he had not before - his mental is much better than his physical. He Is bedridden and completely incontinent and, we were told, has difficulty swallowing but that did not seem to be an issue today. Can't take the unpredictability of this disease and the idea that he may be like this for months....


Thu Apr 20, 2017 9:30 pm
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Glad that you are Hospice qualified. They can be quite helpful. And happy too that he's having a bit of a rebound.

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jjKing, caregiver


Fri Apr 21, 2017 3:27 pm
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I can relate - last week on Monday my Dad was given 2 to 3 days to live, the family all flew in to say their goodbyes. My Dad was in bed, non responsive, gurgling and it was apparent he was nearing the end of his life. On Saturday he was still hanging on, my brother's girlfriend is a doctor and she said let's get him in the wheelchair, life is for living, let's give him the best quality of life possible in his state. We did so, and low and behold my Dad came to - he is no conversing more than he has in the past year. We are able to have a conversation. It has been a true blessing. He did not eat anything for 5 days, and now he is back to eating and seems to have rebounded. My Dad was diagnosed 4 1/2 years ago with LBD. The suffering he has been through has been horrendous. Remain strong my friend I feel your pain.


Tue May 02, 2017 1:25 pm
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Joined: Sat Mar 04, 2017 10:02 am
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Location: Near Fort Bragg,NC
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carolekamc wrote:
I can relate - last week on Monday my Dad was given 2 to 3 days to live, the family all flew in to say their goodbyes. My Dad was in bed, non responsive, gurgling and it was apparent he was nearing the end of his life. On Saturday he was still hanging on, my brother's girlfriend is a doctor and she said let's get him in the wheelchair, life is for living, let's give him the best quality of life possible in his state. We did so, and low and behold my Dad came to - he is no conversing more than he has in the past year. We are able to have a conversation. It has been a true blessing. He did not eat anything for 5 days, and now he is back to eating and seems to have rebounded. My Dad was diagnosed 4 1/2 years ago with LBD. The suffering he has been through has been horrendous. Remain strong my friend I feel your pain.

Thank you for sharing such a cool thing. Enjoy that gift.

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Jim


Sat May 06, 2017 5:09 pm
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I started this conversation line and wanted to post an update. Unfortunately, my father passed away on Wed. July 19. He was at home and surrounded by family. In early April he was sent home on hospice with my mother arranging for 24 hour care. He was bedridden and incontinent the entire last 3 1/2 months of his life. For about 2 of those months he "rallied", we let him eat whatever he wanted - no more puréed or soft food diet, he simply wasn't eating with that -- and he ate a decent amount, showed more interest in things, was reading the paper, conversing with visitors, watching the news, etc. He was coughing with most meals but lungs remained clear, the hospice nurse said he was coughing up the food. He then began eating less and less, and would need to be fed, and sleeping more and more. By July 1 he showed no interest in food whatsoever, refused everything, and would drink only small sips of iced tea, everything else caused a sour face. He also started getting confused as to time -- knew who I was but was mad I wasn't coming home at night (I am 50 and have my own home and family nearby) and completely withdrawn. It was another one of the sharp declines LBD can bring. His advance directives were very clear -- no artificial nutrition -- so we respected his wishes. He lost consciousness on a Friday and passed the following Wed. It was a long and drawn out process but he knew who we all were until the end. HIs cause of death was listed as Lewy Body Dementia. I know what a roller coaster this disease can be, and the toll it can take on a spouse and family and most sadly, the dignity it takes from the individual who suffers from the disease. But we remembered the best of Dad at his services this past weekend, and I would not want the last 5 years to define him. Please remember your loved ones the same way.


Tue Jul 25, 2017 10:25 pm
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