If this is terminal lucidity - question

May flowers

Has anyone dealt with terminal lucidity? My FIL is stage 7c and I’m wondering if this is it.

After weeks of agitation, my FIL is not only calm but carrying on clear conversations with us. He knows who we are (sort of, he thinks I’m his daughter - but he hasn’t know he has a daughter for over a year). He is talking about his past and places he wants to visit. He told us where he was born, where he went to school, where his kids were born and where he lives now. He is talking about gas prices and the last time they were high. He just subtracted 2022 from 1939 to insist to me that he is 83 and not 82 ( his birthday is in December). He is asking about his children and grandchildren. He keeps asking where is wife is. He is clearly expressing his needs and wants. He is making jokes and laughing. He is not running his chair into things, but is asking me to redirect his chair. He is asking to go to the bathroom. He is watching baseball with us and commenting on the plays but has not followed a TV show or sports game in years.

He is where he was over 2 years ago, maybe longer. He has not communicated anything even close to this for the past year.

I don’t know of any physical reason he would be weeks from death, though. His BP is better, his O2 and heart rate is good. He still has an irregular heartbeat. He is eating like crazy, and does not have to be coaxed, and is eating all meals with a spoon the last two days. 

Anyway, I know there is no way to know. But I wonder if the asking about his wife is a means of closure for him. Every time he asks, he cries, I think he knows she’s gone somehow. I hope our fibs in *this* scenario doesn’t hold him back if he is trying to say good bye, if that makes sense.

Or maybe he’s just having really, really amazing few days.

ninalu

Wow, May Flowers. I wish I had some helpful insight to share from the dementia perspective. 

Outside of dementia, I've known only 1 person in my life who became surprisingly alert, present, and oriented just prior to beginning active dying. She was ill but had no dementia. Prior to becoming alert, she had been almost completely unresponsive for a significant period of time. Her alertness, when it came, startled all of us, confused us, delighted us. We wondered if she was all better, and then we felt crazy for wondering. 

What does Hospice say about this? 

Sending you and your loved ones good wishes.

Quilting brings calm

I have no insights either.  Just a question.  Has there been any medication changes in the last few weeks?  Could a new one be helping or a removed one finally be out of his system?  Not sure how that would make this much of a difference though.

May flowers

Thank you both…

The hospice nurse does not see anything that makes her think he is close, but that we are all on God’s time.

They just upped his Risperdone dose two weeks ago. It initially made him more agitated (almost bipolar acting) but maybe (hopefully) that has leveled off. Three days ago he had to have a haldol and almost a week of low dose morphine at night to relax to sleep. But he hasn’t needed either for a few days.

Such a roller coaster. 

Joydean

May flower, i have no answer because of the dementia, I have seen and know of people that were very ill that just all of a sudden started talking and doing things they had done in years. It was like a new lease on life, but it didn’t last very long. I hope this is not the case for your MIL. But wow it has to a good day to see him this way! Enjoy this time with him and God bless your family.

Daughter80

May Flowers, 

I have no idea but what a nice blessing no matter how long it lasts. Hugs 

May flowers

Thanks, daughter80 We are enjoying this time of clarity. We put him to bed at 9 and he has been talking non stop. At the moment he is complaining that the hospital bed is too small.

mommyandme (m&m)

Sounds really nice for these moments. I hope for the smiles to continue.

ButterflyWings

No idea, but wow! That’s amazing. Dementia really keeps us on our toes one way or another that’s for sure. Glad for you, that you are getting these moments. And I’ve been resisting the urge to say “I’ll have what he’s having” because I know you all and he, have been through the wringer up to now.

May flowers

Ninalu, my mom and dad were both really lucid a week or so before their deaths, both were in bad health. My mom had ALS and was able to speak even though she was nearly comatose before, and my dad was just very sick, but felt his end was near. Both times they called all of us in to say goodbye.

My FIL is trying to tell us so many things right now, and really wants us to get what he is saying. He keeps asking, do you understand me? Do you hear me? Or saying, “This is important!” I am trying to figure out what he is trying to convey because it seems so important to him. Yesterday, he was trying to tell us things about his money, his tools and such, and we reassured him that everything was safe, just where he left it, and the money is all there and everything is being taken care of.

The caregiver thanked him for being so cooperative today and he thanked her and told her he wished he could do better. She cried at that. He told us last night that he can’t get his legs to go where he wants them to go.

She and I are both “trippin’” as she would put it, at how clear he was again today, but it’s hard too, because he is so aware of his current state. He is crying a lot. 

Is it possible to jump from 7c back to 6?

May flowers

BW, it’s kind of surreal. I am trying to absorb every second (I made DH turn down the TV last night so we wouldn’t miss a word) but I am so tentative because I just have a feeling this is just the last hurrah. I can’t explain it.

ButterflyWings

(((May))) - I can understand why you feel that way, especially going through that with your parents. One things for sure, you and your DH have given your FIL such tender loving care. It is the best we can do.

aod326

My DH had 3 (I think) days of terminal lucidity, 2.5 weeks before he died last April. Although it was lovely, I genuinely began to wonder if maybe the dementia had gone! (His illness trajectory wasn't normal and we only knew after an autopsy that he had EOAD, so, in theory, it was possible.) I actually worried that he'd be mad when he found out most of his clothes had already been given away, and that we'd spent so much money on his care!

He was otherwise very healthy. At the point he hadn't eaten or drunk anything for four days, his BP was still 130/70. 

Best of luck.

May flowers

Thank you for you for sharing your experience, aod, also for sticking around after your loss  - it means a lot to us still navigating and trying to understand it all. 

It’s interesting you mentioned money, because he asked us today if we were paying the caregiver or he was, and how much. We tiptoed around that one. 

Did it feel like your DH was like he never had dementia, or just back to an earlier stage? For us, It doesn’t feel like he’s back 100%, just that he’s rewound by about a year or two. But of course, in the back of my mind I wonder, maybe he just had some kind of psychosis and is better because of Risperdone, but I know, that is extremely unlikely.

We put him to bed and he wanted to know what time it was, what time we would get him up, and what we were going to be doing. He hasn’t spoken more than 10 words a day for months, and he hasn’t spoken in sentences for at least a year. 

He has called me and my husband by name both days. I told him today he was my favorite father in law, the caregiver said he’s your only father in law, and he said “I’d better be”. He is making me laugh (and cry a bit)

ninalu

Mayflowers, 
It sounds intense and touching that your FIL is communicating with so much intention and desire to be understood. It also sounds as though you are handling it beautifully, with kindness and empathy. 

I got a tear in my eye from the part where your FIL said he wished he could do better.
I'd be "trippin'" too. {{}}

Battlebuddie

My husband is about where your father in law is. He has had three seizures . Each time he has 

“ come back”  - more alert, more language, looking around at everything, etc. The first time when his brother came to visit he exclaimed “ my brother!” And began to cry, so recognizing people he hadn’t known for a while. It lasted about 2 to 3 weeks and then he began to return to baseline. Each time would jazz him up again. Could your FIL have had a similar neurological incident, possibly in the middle of the night or early in the morning? 

  Although it’s been nice in someways for us , it’s also been very hard. My husband gets jazzed up temporarily , but then has to move back over ground he has already covered. It’s a bit like Ground Hog Day. I’ve already grieved some losses , that now I have to grieve again. 

   I bring this up because I want you to understand that when he goes back to where he was - (and he will) be prepared for it to be hard emotionally. Be prepared for this to be a happy experience, but also to be sad and tough in many ways. 

   I will be watching this situation with interest. I feel for you I really do 

May flowers

Helper-heart

I don’t know if any neurological event, but I know what you mean. I have wondered if he had a stroke because one eye is drooping more than normal. 

DH and I are braced for the other shoe to fall. Trying to enjoy it but you know. It is dementia after all.

ImMaggieMae

May Flowers, when my DH first went on Risperidone things improved a lot for about 4 months but then began progressing again. After another 4 months they upped the dosage which helped but didn’t change things as much. About a week ago his neurologist’s office doubled his morning dose of memantine and we are seeing several small but positive changes. I didn’t think that memantine did anything other than to slow progression. He has been taking it for a couple of years I think.

May flowers

MaggieMae, I think it could be the Risperdone as nothing else has really changed. He keeps asking me about money and how much things cost. Like how much Virginia cost just now. He is fascinated with numbers too. Saying random numbers or counting. Tomorrow, I’m going to get his old coin collection out for him. 

He met my son’s fiancé today (they were engaged last night -yay!), and he asked if he was old enough to get married.

It’s all so odd. He’s in bed now, but still chatting away. 

May flowers

I thought I’d follow up on this post, the lucidity continues. One weird thing is that the mornings he is relaxed, but the afternoons from about 2 to 6 he is angry but SO clear. The more upset he is, the clearer he communicates with us.

The other day the hospice nurse, caregiver and I were talking to him and that side appeared out of nowhere. He hollered that he didn’t want a blanket, he didn’t ask for it and we should burn it. He wanted to know why people were giving him things he didn’t want. Caregiver gave him an ice cream sandwich and he yelled that he didn’t want it and grabbed it out of hand and ate it and said “Thank you”. He told the hospice nurse he never wanted to see her again. 

He is all the time saying “get over here right now and do what I asked you”. A few times he has told us to take him somewhere that he is sick of being here. He tells us to leave all the time. It’s not all bad, we had his old bowling trophies out and the caregiver said she wanted a trophy and he told her she had to work for it. Plus, he’s been very affectionate to the dogs, trying to whistle for them again, and still giving us  and kissing our hands (DH and I) at night and being silly.

He argues with people on TV too. And is still fascinated with numbers, he repeats every number the sportscaster says during the game. The other day it was a 3-2 count and he said “don’t walk him”.

Today he told DH and I “There is just one word I want to say”, then silence. So DH says “what is the word?” and FIL argued for 5 minutes that he told us and we weren’t listening. So finally, he stopped fussing and DH said, “So, what is the word?” and FIL said in the most exasperated tone, “It’s too late now”. I have no idea, but we missed it.

He still asks about his dad every day. He clearly knows DH and calls him by name, he still calls me by his daughter’s name. Everything DH and I say to each other he says what, he wants to know what, who, why, when and where, if it is a problem to be solved he tries to give advice and then fusses that we aren’t out doing it.

Anyway, we have added on a .25 Risperdone in the middle of the day and his demeanor is calmer, but his clarity is still good.

What is so surprising is considering he said less than 10 words a day a few weeks ago. It’s like he has rediscovered language and it is bittersweet because we are loving communicating with him, we are seeing his frustration over not getting a point across. In the past few days he has told us he is not right and he can’t find the words anymore.

We are stumped. The hospice nurse says she has never seen anything like it.

​fesk

May flowers, glad you posted. I was wondering how everything was going.

When I was reading up on antipsychotics for my mother, I remember seeing they could improve disorganized thinking and incoherent speech. Maybe this is what is happening with your FIL. It is a shame though that he is recognizing his inability to fully communicate. Just this morning, my mother said "I can't even talk anymore" in frustration. Heartbreaking.

     

Hopefully, the additional dose will help to stabilize his mood throughout the day.

May flowers

Fesk, that is fascinating about antipsychotics and speech/thinking. That is likely what is going on. The rest of his abilities have not improved and the confusion is still there, it’s  just the ability to communicate and access some memories. I wish I could say it’s a blessing but it’s hard to see him upset over his limitations, same as your mom. His being unaware seemed to be easier on him in some ways.

If it keeps up, maybe we need to consider an antidepressant. I’ve often wondered how he would do on MCT, but it’s not easy to get here. A hcw told me you can get Delta-8 at vape shops though.

MN Chickadee

Mayflowers what state are you in? I'm in MN where medical marijuana is very hard to get although they did recently add Alzheimers to the qualifying conditions. We only last week legalized recreational low-dose THC edibles for the general public but not other forms or possession. You are right that Delta 8 has become very common even in some areas you would be surprised by. The US 2018 Farm Bill legalized the THC compound in hemp, which is from the hemp plant and not the marijuana plant but basically the same for all intents and purposes. It's all THC. So  Delta 8 has sort of quietly flown under the radar.  I have heard it is a bit gentler and more relaxing than the MJ version. It has been available in stores in my area (smoke/vape shops and CBD shops) but most people didn't understand what it was and were wary of it, because hey it's supposed to be illegal here. MN only last week recently got down to regulating Delta 8 on a state level such as allowed dosage and requiring they not make it look appealing to kids. So you may be able to find it. However I would be careful with dosage for anyone, you or your LO. Start very low, consult his doctor.

Olly_Bake

Hugs May Flowers! It is so hard to hear them upset over their limitations. I can't do anything for myself anymore my LO says. This is what he says when it is bed bath time. Hope all is well with you all today.