I haven’t seen my husband so engaged in months; maybe a year. Colleagues from pre-retirement whom we hadn’t seen in over a year, came for lunch a couple days ago. I had hoped for DH to rally and he did.
Even expecting it as I did, it was really something to see! I had also expected him to crash and burn after they left but he continued to behave normally (well, normal for 2 years ago) for two days. We were even able to have a couple conversations during which he appeared to track relatively well and show empathy. The crash came sometime during the night and this morning he seemed his old disoriented self again. 48+ hours seems like a long time to maintain lucidity at that level.
I’m wondering if that is indicative of the jagged progression of LB dementia. Neuro-psyche evaluation for diagnosis is not until March (!)
I am also wondering if I should invite people over every 3 days for lunch!
I have read that showtiming can be exhausting and he did crash afterwards but not as hard as I would have thought considering the length of time he was ‘up’. Maybe that was due to the two excellent nights of sleep we both had.
QUESTION - if it’s possible for DH to (unintentionally, I assume) put aside dementia behaviors for a social gathering, should I be concerned that he might be able to do the same for his 3 hour neuro-psyche evaluation and skew the diagnosis?
I’m pretty confident I wouldn’t be able to understand the mental mechanism underlying my husband’s behavior even if explained to me, but, as always, thank you all for your answers - this would be so fascinating if it wasn’t so sad and scary.
(maybe this should have been posed as a new question??)
In older people, the brain is deteriorating. If you are around them a lot you will observe this. It happens little by little but you can see the inability to pull out and express information they have had for years and be unable to process storage and use of new information. That brain storage often crumbles first with most recent events then as age progresses, it loses those memories from long ago, like parents dying. Many lose the part of the brain to express meaning or to speak at all early on. It is so frustrating for the patient and caregivers alike but the caregiver must not get upset with the person whose language is slowly being taken from them.
Lastly, as a kid talking to friends finds language easy, it makes them less anxious, happier, and the body then releases endorphins that increase the ability to function. This is the same with older people. When they are in a comfortable “language base” or a language that does not need processing but is just natural, their entire body relaxes and the person actually feels better.
Symptoms for someone with Lewy Body dementia typically include hallucinations, body stiffness and not being able to move/walk and falling(just to name a few)so if your husband is exhibiting any of those perhaps he'll be diagnosed with Lewy Body. And if your husband already has Parkinson's, Lewy Body dementia often goes hand and hand with that.
Lewy Body dementia is the second most aggressive dementia with a life expectancy of just 5-7 years, while Alzheimer's is the slowest progressing of all the dementias with a life expectancy of about 6-20 years.
And of course someone can be diagnosed with more than one type of dementia as well.
I think you can't predict if this will sustain, but how lovely he had it, and while I wouldn't jump into anything I would try to open things up a bit more and see if he loves it. I think this puts me back to that old thing "What should I expect" in which case I always say "The unexpected". Because that's what it seems to come to.
Best out to you.
I noticed that with my Dad, he was an electrical engineer so anything regarding that professional he was still sharp up into his 90's but only if someone asked him related questions. On the other side of the coin, he kept forgetting to take his pills and would forget to use his walker, etc.
my father had Parkinson’s and was not showing many signs of possible dementia when he had two brain surgeries for DBS placement. After the surgeries he sadly never regained pre surgery mental state of lucidity. He was in the hospital for months. One day I walked into his room for a visit and he was so complete lucid I was shocked and relieved. I thought this could be it, we could have him back. Maybe this entire time it was delirium and not dementia. He was speaking loudly, clearly, making complete sense. Knew who everyone was, was respectful his doctors, nurses and orderlies. He was able to use his phone to call family and friends and have conversations with them. These were things that after his surgery he was not able to do since he seemed to be in full dementia. I was asking the doctors and nurses caring for him to check all his levels (vitamins, medications etc) Justin case maybe they had found the perfect level for him to be back with us without dementia. He remained clear like that for about two-three days. Then one morning he was back to not truly knowing who I was, demanding to go home while packing his clothes in the super small pocket on the outside of his empty overnight bag. It was so strange and heartbreaking. From my experience and from reading your question I am thinking that perhaps levy body’s dementia may offer complete day(s) of lucidity (showtiming).
I know this is easier said then done but try not to worry about the doctors seeing any three hour showtiming and thinking he is truly fine and always lucid. These are the specialists in this field they would know that a person with Parkinson’s dementia can showtime for hours on end (if our suspicions are correct). But just to be if you are able to let them know prior to them examining and testing him, that he has showtime’s for two days straight in the past, that will help them to know to look out for it. And see past it if it is a long moment lucidity and not his usual state.
I hope you get the help you both need.
you are doing a great job!