As I've said in another thread, I just got back from 3 days away, while Jeff's wonderful sister stayed with him, so there's bound to be some strangeness until the status quo has been in place for a while.
But the trajectory Jeff's been on has not really altered from the changes that have been setting in for the past month or two, so it's not entirely about my being away.
He has a constant stream of delusions running through his head, and they're often troubling ones. Such as our son having a motorcycle accident (he doesn't have a motorcycle,) or someone else getting hurt. This morning, it's all about Emily Gillespie (that's my maiden name, and he's now using it) having been killed or in an accident. While these things don't seem to be tearing him up, it's going on most of the time. After a bit of rambling, he looked at me and asked "Are you Emily Gillespie?" This is new. The first time he's ever not been sure about my identity.
Have any of you found that it was worth pursuing a pharmaceutical solution to this sort of thing? It's possible that if he doesn't seem to be in enormous distress, it's better to just let it go on. I don't know.
My dh doesn't suffer from the same type of dementia yours does. He does suffer from delusions at times, will look at me and ask where I am. I can see it isn't a permanent type thing so I just go along, answer truthfully, say I am Shirley. He just stares at me, doesn't argue. Other times he calls me by name. I don't want to start any type of medication for anything unless it is absolutely necessary. I just go with the flow. He thinks neighbors are doing all sorts of weird things, people come in here and take his things. I am sure he doesn't recognize his own possessions. It must be horrible to be in their shoes, blank mind at times, fearful. If I leave the room, he comes looking for me. Must be because he is afraid to be left alone in a world he doesn't "know."
Emily--have you discussed this with Jeff's doctor? My goals were/are to keep Steve safe and content. Having constant troubling delusions wouldn't fit my definition of content. I don't like meds particularly either, but with this disease and all the psych symptoms, it may be unavoidable. Perhaps a low dose of something would do the trick for him.
none of us want to use a med if its avoidable but i agree with marilyn if hes stressing over the dilusions and they are causing HIM anxiety then i would ask for something. like marilyn again the goal is to keep them on an even keel and as 'normal for them' as much as possible. hallucinating and delusional behaviour if NOT causing anxiety would be something i wouldnt treat. you can usuallly tell if its disturbing to them. they tend to be fearful and anxious. my DH hallucinates alot but is smiley and generally content so far. it is a fine line i guess.
DH has just started not recognizing our dog, Millie, who has slept with us for 8 years. Last few nights after getting into bed he will wake up and tell me to get that cat off the bed! I turned on the lights and showed him it was Millie- but he still insisted it was a cat. When he wakes in the mornings he recognizes her. Only happens at night. So far, I've been able to calm him and he goes back to sleep. Yeah, Emily, watch and wait and see.
Vickie, my DH doesn’t recognize our pets anymore either. He also calls our cat a dog. He keeps asking me if I have a dog, then asks the dog’s name. So sad considering the cat used to sit on his lap on the couch & they were best buddies.
emily, I agree with divvi and marilyn-if the delusions do not cause him anxiety then wait and see before meds are prescribed. In our case, the delusions disoriented him, made him afraid and then aggressive because he was sure someone was going to take his house or hurt him. DO NOT let it get to that stage for the safety of both of you. BTW, DH was on lexapro when this happened. I'd advise you speak with his doctor to determine the various alternatives available.
The real question becomes "Is this the disease or is this a reation to the drugs" It seems as you add drugs you get reactions that may not be good, then you have to decide does the benefit out weigh the bad side effects and as you start dealing with some of the heavier drugs I think the issue becomes more important. If no new drugs have been introduced or no changes in the amount given in the past month, then I would say it is the disease.
" This is new. The first time he's ever not been sure about my identity." ...............Emily, I am sorry.. that had to have hurt. I know the first time it happened to me, it was a brutal blow. I am also sorry to hear Jeff's declines seem to be coming fast and strong. It happens this way sometimes, then often they will level off and plateau again. This is what happened with Lynn, and I hope it is the case for you as well.
As for if/when to medicate, you already answered your own question...."Yes, I'm not interested in adding meds unless things were unmanageable, or clearly too difficult for him."
That is what we all truly want isn't it.... we just want to make them as content as we can. You are a smart cookie, I have little doubt that you will instinctively know when it is time for Jeff to have his medications adjusted.
Docs were pretty firm in advising that generic depakote would be good. It was a disaster; increasing delusions similar to what you described. Despite his dx of FTD- as they are now coding it "he had FTD but it has progressed to general cerebral atrophy", an increase of generic aricept was also advised.
Atypical- but he did better, at least as far as I can tell, on that at 10mg. Worse was none and also worse was 20mg,(at a split dose) which was tried as an alternative to 23mg because insurance did not cover that. I have read that this dosage cannot be considered as an alternative to 23mg because that is continued release .
I don't know! I've posted before that N would try different meds in an alf but not at home with only me here to deal with H at 6'2", 200 lbs and still with considerable strength due to years of yoga.
I thought about you a lot and hope the trip was good.....
For people with Lewy Body Dementia, sometimes increasing Aricept/Exelon or adding Namenda reduce delusions. Is something like that an option worth trying? I'm thinking you might be lucky and something less than an antipsychotic might help some.
When to medicate and when the medication is in place does it create problems. Well last night we spent the night at the ER. We added Seroquel 50mg at night. Long story and 5 hours later.....possible the Seroquel reaction, possible a major anxiety attack. Good news he's in great shape, everything clean, clear and excellent bill of health. Bad news they don't know what happened. So Neuro throws it back to me, do you want to stop med, cut back med or try new med??? Oh please there's no MD next to my name. I said I orginally ask for a anxiety med for occasional use and you wrote the script for this. Anyway has anyone used Seroquel and ativan (or something like that together) We see primary on Wednesday .......Poor hubby what an awful awful awful day for him. And today he's good and I am grateful for that.
Terry my DH has been on Seroquel for quite some time. He takes 75mg at night and this week I started giving him 25mg in the morning. His neuro doesn't know about the morning dose because he has never replied to the letter I sent him asking about it! DH had/has haluucinations and is paranoid.