Is this a hallucination?

May flowers

For the past month or so, when he is agitated, my FIL is calling out for his dad (deceased many years ago). Sometimes, he calls for his mom and rarely for his late wife and other friends, but daily for his dad. I follow it with a fiblet. Sometimes, I am not sure if he thinks my DH is his dad. He calls me by his daughter’s name which I’ve just begun to answer to instead of correcting.

I’m wondering if he is seeing people that aren’t there or he is confusing us with other people. He does carry on conversations with people that aren’t there at times as well. He gets very upset that things aren’t getting fixed, whatever they are, and that his money is gone. We reassure him and his answer is always “b***s***”. 

harshedbuzz

MF-

It can be hard to sort out at times. 

I'm pretty sure my dad had auditory hallucinations in the later middle stages-- he often complained about children upstairs playing past their bedtimes. He time-traveled a lot. We never did figure out if it was my late sister and I as kids he heard, my late sister's kids who lived with him for a few years or if they were some random kids. It amused me that he felt a need to discipline them-- personality persists well into the disease process as you have seen given your DFIL standard "b***s***" replay to your reassurances. 

If your DH or another man is in the room, on TV or even him reflected in a mirror or window, it might just be confusion. But if it's just him, he's probably hallucinating. 

One time when I was visiting dad in MC he barked at me not to sit in his chair because one of his dead golf buddies was already sitting in it. He didn't seem bothered by the visitor (me sitting in his lap was another matter). I was happy he had a visitor.

Dad also described a visit from my sister the afternoon he died. He told me all about her finally getting the time to visit that morning despite working fulltime and raising 2 children without much help from that b**tard she'd been married to. He was so articulate in describing this that the SLP who was doing a swallow test with him had no idea this didn't really happen. She was spooked when I explained my sister had been dead 26 years. Other family members of mine believe she'd come to prepare him for his next stage. 

HB

May flowers

Thank you for your reply, HB, it doesn’t matter  DH is in the room or not. I do think he is talking to someone he hears or sees from time to time because it is complete back and forth conversations. Other times I think he is talking to someone imaginary and then he will stop and say, “do you hear me?”, talking to me, lol.

At night at times, he is talking to his children (probably dreaming) as if they were young telling them to stay together and don’t run off, calling them by name.

One thing that is odd is he was a quiet, soft spoken timid man. He was never really the one in charge at work, etc. He rarely raised his voice and never cussed that my DH can recall. But boy is he bossy and mean now! He tells us to get in here or go do that. We are never really sure what he wants us to do but if we ask him he will cuss at us and tell us if we can’t do it get the h*** out of there. He told me the other day if I couldn’t help him he would chop off my head!! Good thing he’s immobile (yikes)

That reminds me of a kind of funny story, sad but funny… he was ranting about something to DH (unintelligible) and as clear as day he said, “I want to say just ONE WORD”. Then nothing. So of course, DH says, “What’s the one word, dad?”  For the next 5 minutes my FIL argued that he had told us, and we weren’t  listening, etc. after he finally calmed down, DH asks again what the one word was, and my FIL sighed and said, “You missed it, it’s too late now”. So whatever the word was, we missed it. DH and I were both trying so hard not to laugh. I know nothing about dementia is funny, but that particular exchange was pretty funny.

By the way, my mom (ALS) did not have dementia but was for sure talking to deceased loved ones in the days before she passed. She was seeing all sorts of pleasant things and she told us she was ready to go.

mommyandme (m&m)

May flowers, 

The first thing I thought when I read your post is that maybe your FIL is getting ready to move on.   I presume you’ve also had that thought since experiencing your mom’s passing. 

If only we had a crystal ball that could help us navigate this journey.  

May flowers

M&M, that has crossed my mind many times! I’ve asked the nurse if she thinks this is it, and she says physically she sees no signs, and he is eating like a horse and alert. At the same time, she says it’s all in God’s timing so we don’t really know.

I would love a crystal ball!

The hospice nurse saw him in his most agitated state this morning and she was amazed at his strength. It took 3 of us (after medication) to get him changed out of urine soaked clothes. He was hitting, kicking, cussing, spitting out meds and threw his cup and plate at us after he was in his chair. We gave him his pool noodles and he was hitting everything, and then started taking bites out of them. He finally calmed.

The plan now is to up the risperdone dose further and see if it helps. We want to make this manageable so we can keep him here if at all possible. But today, DH and I admitted to each other, if we cannot get the behaviors under control, we will have to consider SNF where they have the staff to deal with it.

MaryG123

In my opinion, and it not being my loved one, I think it’s time for the SNF.  It doesn’t seem humane for you or him to be wrestling with him like that.  I’m so sorry.

May flowers

Thank you, MaryG. We want to try medical interventions for now to make it workable, which is what they would be doing in a SNF no doubt. Hospice is working with us on that. If we can’t get that worked out, we will have to consider SNF.

It may seem inhumane that we were having to help him like that this morning, but he was soaked head to toe in urine, in a wet bed. We weren’t wrestling with him, the hospice nurse and I were just holding his hands so he didn’t hit or grab the caregiver.  We try leaving him alone for a while but the  he hollers for us to help him because he hates to be wet and hates to be in bed. 

Fortunately, he is not always that difficult in the mornings and calms down once he’s in his chair. Usually it’s around mid-afternoon that he ramps up, and calms again around bedtime. So far neither morphine nor haldol will touch his agitation when he’s like that. 

​fesk

May flowers, I agree with HB that it is very difficult to tell. My mother has some of the same behaviors. She will ask for her mother or ask where her mother is at times. I do think she is confusing me with her mother sometimes. Then at other times she will say father, sister, daughter or name one of her children. I think this has to do with her confusion/loss of words more than anything else. She is mentioning whatever loved one she can think of - whether or not it's the right person if that makes sense.

She also talks with herself or others. She will talk sometimes, and I will ask her who she is talking to - sometimes she says herself, sometimes she says she is talking to me. As long as she is not distressed, I think this is ok.

We too are at the cursing stage I'll call it. My mother would never have said some of things rolling out of her mouth. And yes, I have laughed too. And, she has even said the "I have to tell you one thing - just one thing"!.

Risperdal did nothing for my mother. Is Hospice consulting with a geriatric psychiatrist or do they have a specialist on staff reviewing the medications?  I do think they need to try a different medication. It's been a while on the Risperdal; although, I don't know what dose they have him taking. 

Does your FIL like music? That may help to calm him. I would try that and aromatherapy.

I am hopeful with the right medication you will be able to continue to care for your FIL at home. There was a point when my mother was having extreme issues. A family member was continually telling me to consider placement. It did not take too long until a medication was found that quieted the behaviors for her. I do not like some of the side effects so I continue to see if there might be a better fit, but the situation is now very manageable.

mommyandme (m&m)

May flowers, 

I’m so sorry for these distressing (i would be distressed but you always read so calm) problems with your FIL.  I hope the solutions bring calmer waters soon. You and yours are in my thoughts. 

May flowers

Fesk, I’m sorry you are dealing with some of the same behaviors. It sounds like our LOs are at similar stages. 

When the behaviors are so out of character for them, it is hard not to find some humor in it because it is so bizarre (for them). DH commented once that he wasn’t  just surprised his dad cussed, but that he did it so well!

Music does help as does gentle talking and reassuring when he’s mildly agitated but when he has the crazy eyes, nothing seems to work!

They are going up to 1mg twice a day on Risperdone. If that doesn’t work, I think we will have to try something else. What is your mom on? 

I still wonder about the prostate med he takes, he has taken different forms, but they all seem to increase his agitation and confusion. I got the ok from hospice to try a natural prostate med made with saw palmetto and some other herbs, and we will see if that works any better. 

I also think he has restless legs which may account for his constantly moving his legs and spinning in the bed. I read it occurs alongside dementia often and he did have RLS years ago. I consulted the nurse about adding iron, and she reminded me of the constipation risk, so I am using iron in the form of blackstrap molasses, which also has potassium, magnesium, and calcium. He has been on it 3 days so far and no constipation  (knock on wood). I mix it with chocolate milk to hide the taste. I noticed much less leg movement and spinning yesterday so praying this works. 

M&M - it is for sure distressing, but I don’t feel overwhelmed (yet). I have to credit my DH for his calming influence, he is laid back and has a great sense of humor. Our caregiver (9-2) is always  upbeat, even in the middle of the craziness. She will say, “we will have a good day… eventually!” I’m very grateful for the support from them, and all of you here, there is no way I could do this without it.

​fesk

May flowers, I'm glad you are revisiting the prostate med. You just never know. You may already be doing this, but it would be good if you could give that a little time before increasing the Risperdal. Maybe a week if that is manageable. If both med changes are done at the same time and there is an improvement, you won't know which helped. Ideally, you want the Risperdal at the lowest effective dose for your FIL.

  

My mother is currently taking a low dose of Zyprexa. There's quite a bit of history that I'll either message you or spare you. The Zyprexa is effective at keeping the agitation and behaviors in check. However, it has made her worse cognitively which I have a difficult time accepting. There are physical side effects that I watch closely. These are at a minimum on the low dose. We did try other meds to see if there was a better fit for her, but at the moment this appears to be the best one. I find it extremely frustrating that we cannot manage her symptoms without negatively impacting her cognition or physical abilities. 

May flowers

You make excellent points, fesk. He has been at the higher dose for a few days and while it is calming him more, it is making him unable to communicate or feed himself. He is also having more issues swallowing. I am for backing off of it some, but DH is not and it’s his call.  

He still has enough breakthrough agitation even at the higher dose (in the afternoons when it wears off some) that I think we will be able to tell if the prostrate med is working. Hopefully. 

Olly_Bake

I read this post earlier last week but didn't have time to sit and respond. If the prostate med removal doesn't work, have you asked hospice to remove the Risperdal and try another med. Previous hospice before going regular home health had dad on olanzapine. The 2mg was good but I did not like when they increased it to 5 mg due to him becoming helpless and sleeping way way hard. Just a thought because I know you and hospice have played around with the risperdal for a few weeks now.