What's your experience with the rally?
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?
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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.
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.
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.
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.
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.
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.