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My 96yr old Dad has Severe Lewy Body Dementia - for weeks he's gone back and forth between not eating/drinking only sleeping for 2-3 days - we think he's nearing the end, then comes back around and wanting to go outside - this has happened 3x this past month - just two days ago he woke from 2 days of sleeping and asked for a shower (not a sponge bath) he demanded I let him shower alone - even shut the door behind him and locked it! uuugghhh (of course I unlocked it lol), insisted on putting on regular slacks and shoes not slippers. He was even already in a wheelchair and now wants to walk on his own. He seems steady enough - I stay close by. So he's been up and around - not using his wheelchair for 2 days now. He's feisty as all ever - even rude (this was his typical personna as I was growing up - bully) and hallucinating a bit more now. Up at 2am insisting I get him his coffee - when everyone else in the house is asleep - he's making all kinds of noise. I asked him to speak quietly as others are sleeping, and he just barked out that if he's awake - everyone should be awake! uuuggghhh! At first I thought it was a rally - but I'm not even sure what's going on any longer - it's so confusing! What has been your experiences with the rally?

This isn't typical imho as an RN, of the rally. Some things in the "rally" are organ shut down and extreme confusion; so extreme that there's no recognition of physical limitations, etc. And it doesn't usually have this sort of reaction. This reaction is looking more like extreme confusion and restlessness and would be likely better treated with some calming medications.
More typically a rally is that someone is quite down for the count, often unresponsive, uncommunicative, not eating or drinking for days, and the family is sitting vigil at the bedside expecting the end. Suddenly the person awakens, knows folks that they didn't know for some time, sits up, asks for favorite food. MAY even say they have been dreaming about loved ones from the past who are gone now. Seems to be getting "well". It lasts but a short time. Death may follow soon after.

If this is a rally it is a somewhat unusual one, but then I always say, when folks ask what to expect, that they should expect the unexpected.
Good luck, Mama.
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Mamacrow Oct 16, 2024
Yes, it is a bit confusing! He was talking to my Mom last night (she passed 10yrs ago) and for the last couple of weeks he's been talking to 3 of his brothers that have passed as well. That's why I thought he was going - but, nope - loud & clear this morning - He's back to sleep now and hallucinating - I'm not sure who he's talking to right now lol!
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My Mom had a rally. She was bedridden for a few years. The day before her massive stroke, she perked up and was very happy and wanted to watch TV with me. She asked for her favorite food, a bagel and cream cheese.
We sat and ate bagels and cream cheese, and watched early episodes of the Dick Van Dyke show together. We both laughed and laughed together, talked about old times - and we both had a fantastic time. I remember wishing she'd always been like that while I was Caregiving for her. That day was so special and memorable. That night she played her favorite songs by Elvis Presley really loud on Alexa.

Very early the next morning - she had a horrible stroke right in front of me. Was hospitalized, and was beyond help - they transferred her to Hospice to pass away a few days later. I will always remember how happy she was on her last day.

Am thankful for the Rally. It was a gift for both of us.
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Daughterof1930 Oct 17, 2024
What an amazing gift for you both. As someone who lost her mother to strokes, thank you for sharing
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This does not sound like a rally that most experience before dying, but just the "joys" of someone nearing the end and giving it all they got.
Lewy Body dementia as you know is the second most aggressive of all the dementias, so you know that his time is very limited anyway, plus he has his age against him as well, so just enjoy these more lucid moments with him and make sure you leave nothing left unsaid.
And I'm guessing that your dad is under hospice care as well, so they can probably better answer any questions/concerns you may have. But they too are human and often get things wrong, as it is only God that knows the day and time that He will call your dad Home.
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Mamacrow Oct 16, 2024
Yeah, the hospice folks are stumped as well. ???
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My mother (99, advanced dementia) appears to be re-learning skills.

After umpteen tests, the hospital concluded her sudden inability to move a muscle or talk was behavioural. Eventually she lost her temper, opened her eyes, sat up and yelled at a doctor. He thought it was a rally. Now, 2 years later, she feeds herself full meals and holds brushes, pencils to make art (child-like, not detailed), moves herself around her bed, has gone from bed baths to showers on a chair. She is articulate as ever. This has been going on for 6+ months. I’m also wondering if post COVID fog was a factor. The staff at the home is baffled.
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I agree with funkygrandma that it doesn't sound like a rally. Although I'm not sure anyone believed me my mom had many "good" (more lucid) days right up until her final weeks. Mom's rally lasted a day, maybe a little longer, and it happened right before her condition deteriorated rapidly. She had been in a wheelchair and pretty much non verbal for a couple of years and according to the staff at the NH suddenly began "talking up a storm", I was only there for a small portion of that.
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From Google:

Dementia patients can experience a sudden return of mental clarity and memory, also known as terminal lucidity or "end-of-life rallying", shortly before death: 

What to expect: Patients may experience a burst of energy, speak more, eat or drink again, or want to sit up. They may also be more aware of their surroundings, see or hear things others can't, or want to say goodbye. 
 

How long it lasts: Terminal lucidity can last a few hours to weeks, or even MONTHS. 
 

Why it happens: The exact cause is unknown, but it's not uncommon. 


What it means: It's not a sign that the patient is getting better. It's an opportunity to say goodbye and make meaning of their life. 


How to prepare: It's important for families and caregivers to be aware of this phenomenon so they can prepare and make the most of it. 
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Mamacrow Oct 16, 2024
Wow! Months?!!! Just might be what's going on then! Didn't think to google the question lol - Thanks!
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My aunt with Lewy Body and Parkinson’s rallied for several months. Maybe a year, I can’t remember how long now. Her daughter gave the credit to CBD oil. Aunts manifested by her starting to talk again and very lucidly. As she continued to lose weight and kept falling she stopped talking again. But it was like a miracle. She had been incontinent for a good while. Cousin had taken her by cousins house which was unusual because they were generally at aunts home. They were sitting on the sofa and aunt all of a sudden said, I have to go to the bathroom, got up and went straight to the bathroom. I remember the day so clearly as I was in bed with back spasms when cousin called and said, do you want to talk to mom? She’s talking. I was befuddled. Maybe due to the muscle relaxer I had taken but this was so unexpected. We sort of thought maybe cousin was a bit confused but no, aunt was talking. She lived several years past that time.
My DIL’s father did the same thing with a drug he had been given but it was just for a few days never to return. He died a couple of years later.
I always thought a rally was a few hours before death. A few days at most.
My uncle, the husband of this aunt developed dementia about a year before he passed. He had covid several times. He was in a rehab towards the end and I went by to see him. I told him I was 97. He looked around for 97, not recognizing me. I asked did he want to go to his room and visit. He was up at the nurses station. He said no, he would stay there with his brother. The brother had been dead for years. When his daughter came to pick him up from the rehab, he got annoyed with her because she wouldn’t wait for his brother to get into the car.
He died a few weeks later in his sleep. He had a date to meet a lady at the senior center to play dominoes a few days before he died. So I’m not sure what to call these episodes either but they seem like little gifts to me. This couple were only in their 80s. She was ill a long time with the Parkinson’s and them LBD. He not so long.
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Mamacrow Oct 17, 2024
Wow! That's amazing! Well then I guess it really does depend on each individual! Interesting. Thank you for your input, much appreciated.
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