HWD, 56 yrs old, having extended lucid period!

CS 63

I haven't posted here in awhile.  I thought my HWD was at a stable stage, early stage 6,  and things would gradually progress - wrong!  He was admitted to hospital (in Canada) in Sept as he was having agressive episodes and I no longer felt safe with him at home.  He was admitted to the mental health ward and they worked on his meds til they had him stable and happy.  All of the nurses liked when they were assigned him because he was so thankful and appreciative of their help.  This continued through the fall and Christmas.  I visited every day and helped with his personal care etc. He had the occasional anxious moment or delusion but a little extra attention or meds and he was back to his happy self.  Early in January he had a couple of more intense moments but again they were able to calm him down quite quickly.  We were in a nice routine!  As January progressed he had more anxious and depressed episodes and then in the past couple of weeks he's been all over the place.  Very sad, crying inconsolably , wanting to die, is a loser. ... then will be calm and smiley, then angry and agressive - punching walls, throwing chairs etc.  All the while he is more with it than he's been in a long while.  He realizes where he is, how he is, how he used to be.... it's like we went back in time almost a year.  How does that happen when  this disease is supposed to be progressive and affect memory?  He got so bad that he is now back in the intensive care part of the mental health unit.  The dr said it could be that the meds at the strength he was taking aren'T working as well and/or its progression and he needs a stronger dose.  So that's what we are trying, a stronger dose hoping it won't affect his balance etc.  She said that increased agression is common in FTD so we are trying to address that.  She is very good at communicating with me and taking baby steps with the meds knowing that he is sensitive to the doses.  She said she has only seen this extensive period of lucidity in one other patient, I should ask her for more details.

Anyway, has this happened with any of your loved ones?  I'm at a loss and it breaks my heart to see him so upset when I thought he was at a stage where he was slipping into a comfortable safe place.

ImMaggieMae

It will be interesting to see what is causing all the changes. What types of medications is he on? I know that Risperidone helped some of husbands symptoms and continues to help.

Ed1937

CS, I'm sorry you had to deal with this. Hopefully they can adjust his meds again to give you both a little more comfort.

CS 63

Update,

Things went from bad to worse over the weekend and HWD ended up being agressive with some of the staff and ended up in the secure isolation room overnight.  They realized that that was not a good place for him but for everyone's safety that's where he needed to be.  The dr on call on the weekend happened to be specialized in geripsychology and so spent some time reviewing my husband's files and did a thorough exam.  She feels that he's been misdiagnosed and the he actually has corticobasal degeneration.  She left good notes and suggestions for the regular dr.  When I researched it his symptoms fit better than they did for FTD or EOAD.  It's so hard to diagnose this disease, but now that his symptoms are more advanced iT might be easier ?  Anyway, Dr is calling for an urgent neurology evaluation so that we can get a better diagnosis in order to know where we are going and what the best cocktail of meds will be.  Again,  if he were over 65 we could have had a geripsych evaluation years ago and had a better idea then.  It infuriates me that he's too young for the services that he so needs.  

I was able to visit yesterday and again today and his agitation level has gone down but he is fairly sedated and very unsteady on his feet.  The nurses are going above and beyond to help.  I hope he gets back to some semblance of what he was but i'm content that he's not being agressive or anxious right now.

He is currently on Seroquel which they have increased from 25mg to 50mg/ 3 times a day with Ativan as needed.  This increased dosage has caused the unsteadInes as he's so sensitive to the dosage - which is also common with corticobasal degeneration, but has also likely calmed the anxiety and agression.  He started with risperidone last summer but we found that seroquel suited him better.  He is also on keppra for seizures and the Dr recently added Epival as it helps with seizure activity and depression.  She doesn't want to add or change things until we see how he fares with this.  

On a positive note, I know he is starting to feel somewhat better because he was complaining about the nurses not leaving him alone!

jfkoc

Has the possibility of LBD been ruled out?

CS 63

At this point I'd say the only thing ruled out is vascular dementia.  As for LWD he has never had the nightime 'dreams' nor has he had hallucinations.  Delusions yes but no hallucinations.

CS 63

Sorry, meant LBD not LWD.