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Input on Care - Reflecting
Posted: Monday, March 26, 2018 6:13 PM
Joined: 3/26/2018
Posts: 2

Hello everyone (first post),

My grandpa passed away last month and at death was diagnosed with dementia with lewy bodies. A neurologist last November stated that it was evident he had some form of Alzheimer's or dementia. As I mourn his death, I keep thinking back to the sequence of events from when he first went into the facility (beginning of January) to his death and can't stop thinking about; was it the care at the facility? the medication? the transition? progression of the disease? or some combination of all. Regardless, I'll describe a little of his situation and would appreciate any feedback/thoughts based on others' experiences.

My grandpa lived with my grandma until he started wandering and had issues sleeping, making it challenging for both of them. My mom helped with reviewing facilities and determining the best action for care and found a MC facility that seemed to fit and cater to all the symptoms that my grandpa experienced (paranoia, hallucinations, inability to sleep, & anxiety) but he was mobile, re-directable and very talkative. At that point, he had not been on any mediations, the neurologist in Nov 17, suggested meds that would slow the progression, but that was all & we decided at that point not to pursue. He moved into a MC facility in January of this year. After 3 days, the facility stated that he was wandering into other people's rooms at night, became aggressive and threw someone's walker at the window. And at that point stated he needed to transitioned to the emergency room & admitted into the geriatric psych unit for further evaluation. I spent the time with him in the ER while they ran some tests and he behaved fine that whole time. The next day he was admitted into the geriatric psych unit. He remained there for about 3 weeks. They started medications, multiple at once (depakot, neurotin & trazadone, apologies on the spelling). He still was talkative and mobile. He then was transferred back to MC, where he spent 3-4 nights again & after having challenges with aggressive/violent behavior he was back to the geriatric psych unit. Within a week, he had gotten progressively worse (unsteady on his feet, fell, & needed to be watched one on one). They then added klonopin & took him off the anti-psychosis med he was on as he had an adverse effect. Then within another week, he completely stopped talking & walking, could barely open his eyes. Then from then it was two weeks and he passed away, the last 5 days they had him on bedrest and pretty much was sleeping & bedridden.

This was a new experience for me and my family and I don't want to take the easy road and blame the facility or way the care was handled, but I'd just like to understand if others experienced communication challenges with facilities and change in expectations. I just believe if a Dr. was giving me a medication they would be prepared to provide answers & clarifications to anything that I asked, the same should be for the POA for a LO and I don't feel like we received that. The entire experience was very frustrating and traumatic to see him change so much week over week. Especially frustrating now that I read all the debates about anti-psychosis meds & dementia patients and the risks associated, you would think the doctors would want to discuss in detail before adding so many different meds at once.

Appreciate any input!




Posted: Tuesday, March 27, 2018 7:41 AM
Joined: 1/8/2016
Posts: 365

Hello and welcome to this special message board. I'm sorry for your loss and pray you find comfort with time. As I read your post I can tell you want answers. Unfortunately, this disease doesn't follow a set of rules in progression. Yes, it can seem like the medical community is guessing on medications and care, but I think they are only going by the current symptoms.

 In my experience there was very little left of my mom by the time she passed. Dementia was her personal nightmare as mine. She was in MC for 2 years and there would be declines and then she would level off for a while. And, repeat. This was not a happy journey, but a journey I'll never forget. As you can see we still come back to the message boards to offer support and comfort. If anything it has forever changed me and now I have new friends and connections that I have met on this site. I am so grateful for this site and the people on it.


Posted: Tuesday, March 27, 2018 1:20 PM
Joined: 11/9/2017
Posts: 305

I am so so sorry for your loss.

I just don't know how to say this, since I have asked the exact same questions and received little in the way of answers. People don't want to discuss the issue after the person has passed and nothing can be done.

Please be aware: I am not a doctor and have no professional experience in the medical field. I have only what knowledge I have been able to research on my own--and what I have been able to PRY out of my brother, who IS a hospice doctor. My distrust in doctors now knows no bounds.

Yes, I think the medications might have contributed to the speed in which your grandfather became bedridden. I can't figure out which medication was the antipsycotic. Was it the Depakote? Klonopin is a strong anti-anxiety and causes intense sleepiness; could that be why he seemed to be sleepy all the time?

I question the decision (I question all their decisions, actually) to give him two anti-convulsants right away though. Neurontin is one that I take for nerve pain, and it is extremely disorienting initially and can cause dizziness, which may be related to his falling.


Veterans kid
Posted: Tuesday, March 27, 2018 11:08 PM
Joined: 10/17/2014
Posts: 1239

I don’t have any advice really-

I wanted to offer my condolences on your loss of your grandpa. 

I don’t know much about LB, just there are more complications for our loved one.

I’m sending you virtual hugs,


Always be VK