Mischevious with super energy

KatieKat1

I would guess my DH is in Stage 5-6, but sometimes he has symptoms of each stage so it is difficult to determine. 

Is it common to have a person you are caring for to be into everything - leaving water running ( I have turned off the valves under sink) open all the doors and closets, moving furniture around, bringing things from indoors to the outside (we have a locked in fenced yard) and even tearing magazines, getting into Kleenex boxes and emptying them out, loves paper towel to leave around, and maybe destructive if there is something they do not like such as a knickknack (most are locked up), and so on.

DH is on Seroquel - 125 mg. total for the day but spread out.  He has so much energy and just paces from morning until I can get him to bed around 7 PM - and then he may or may not get up again but can be lead back to bed.

Never sits to watch TV and has no attention span. 

So, is this all normal for a person with Dementia / Alzheimer (FTD)?  He also has aphasia and he does not understand some of what I say but he still has a sense of humor at times and of course I cannot understand nothing he says unless I can get him to show me.

I would like to slow him down a bit but not sure if that is possible or a good thing to do.  He cannot take walks because he has bad knees, and cannot always get into the vehicle these days so we do not have the nice car rides I would like to go on just to get him out and about to see something else other than indoors and our yard.

M1

Sounds exhausting Katie. Maybe some room to move on the seroquel dose, but this does sound typical for FTD. Worth a phone call maybe?

Michael Ellenbogen

Maybe wearing a knee brace may help him to take a long walk. Just walk slow and not fast. They do work as I have used them at times.

MN Chickadee

That was how my mother was in stage 5 and early 6. So busy. So much energy. It was exhausting. She rummaged through drawers and closets, tore things apart. So many broken things, from dishes to books to furniture. We could never find anything in the kitchen because she would have squirreled away the can opener in a sock drawer. We had to put baby locks on all the cabinets and fridge because she ruined so much food. There does come a time when they slow down. Now she shuffles around and doesn't really have the wherewithal to get into trouble. I know it's hard, but hang in there. See if you can find things he will spend some time on. My mom took to folding doll clothes and dressing dolls and sorting beads. Perhaps your husband would sort a pile of screws, washers etc. Mix it up and do it again the next day. Folding laundry, anything you can think of that will occupy him for a bit so you can let your guard down. Adult daycare was a life saver, because it was respite from constantly supervising her so she didn't hurt herself or our home. The staff there found ways to keep her occupied and she came home tired and ready to doze in front of the TV. Some have handicap accessible vans and provide transportation. Not sure if that is an option in your area but if it is I would look into it. In some states they are even making adult daycares part of phase 1a for Covid vaccination.

mommyandme (m&m)

I got a wheelchair just to use for long walks. It was actually so I could get out and exercise, win/win.

storycrafter

my husband takes 300 mg Seroquel and does well on it; still goes through manic and depressive cycles but not wide swings of intensity like before

KatieKat1

Storycrafter:  Yes - I have upped the Seroquel Dosage.  This has made the difference.  He still has sundowning, hunting and gathering, but the moods are better and I was even able to get him out of the house for a ride yesterday to do some errands.  We stopped to have lunch.  This is something we have not done in a long time.  DH now takes 50 mg Seroquel early AM, same dosage at Noon and then again at 4:00 PM.  I am not sure how long this dosage will be effective but so far he has had no physical problems on this medication.  What surprised me even more is that he even said a few short sentences yesterday.  He does have Primary Aggressive Aphasia, but let me tell you he can still swear when he wants to and has no issues with those words.

Thank you for responding to me message.

KatieKat1

M1 -

Yes - I have now  upped the Seroquel Dosage.  This has made the difference.  He still has sundowning, hunting and gathering, but the moods are better and I was even able to get him out of the house for a ride yesterday to do some errands.  We stopped to have lunch.  This is something we have not done in a long time.  DH now takes 50 mg Seroquel early AM, same dosage at Noon and then again at 4:00 PM.  I am not sure how long this dosage will be effective but so far he has had no physical problems on this medication.  What surprised me even more is that he even said a few short sentences yesterday.  He does have Primary Aggressive Aphasia, but let me tell you he can still swear when he wants to and has no issues with those words.

Thank you for responding to me message. 

KatieKat1

mommyandme:  Thank you for the suggestion about a wheel chair.  At this stage of my DH FTD he has issues with sitting.  I am lucky to get him to sit in a chair or on a toilet, and he still seems to have some notion that canes, walkers, wheelchairs are not for him.  I guess a part of his brain determines this but I do have some of those items in storage just in case and I think as the disease progresses there will come a time I will use those items. 

We have increased the Seroquel and for now that has evened out his moods and the continual pacing for hours, rummaging, etc.  Fortunately, there has been no negative physical affects from this medication.

KatieKat1

Michael E. - Thank you for the suggestion of a knee brace.  We do have a few of them.  DH should have had knee surgery some time ago but he refused it because he was an avid golfer at that time and he did not want to miss any time off of the course.  I wanted him to have the surgery in the winter but I think he had decided not to go through it all since his brother gave him some negative information on knee surgery that he had due to pain and whatever else comes with that surgery.

He really should wear the brace every day but he gets notions about things at times and I could maybe only get him to wear the brace when he felt like it.

We have upped DH seroquel dosage and he does better with the pacing, etc., but as for wearing a knee brace it will depend what his mood is.  When our weather gets better (we live in the East) we will try out that brace and maybe get in some walks at a park. 

KatieKat1

MN Chickadee:  Thank you for responding to my concern about DH and his pacing, rummaging, hunting/gathering all day long.

We have upped his dosage of Seroquel and he seems to be doing better with that.  He still does some of it at sundowning time but not as much.  I was even able to get him out for a ride yesterday to do some errands and for lunch which we have not done in a long time due to his moods.

I did order some different colored cloths from Amazon and when he seems to get bored I leave those on the table and ask if he would help me fold them.  He seems to do this at times and other times has no interest.  Since he has Primary Aggressive Aphasia with this FTD, it is not easy to communicate with him verbally but I show him what is needed and he seems to do okay with that.

I have ordered kids puzzles of 10 pieces, legos, and all kinds of things they suggest for Alzheimer patients and he has shown no interest in any of it.  If he had a choice he would love real tools but I don't dare trust him with those because he would try to find a way to remove things and most likely break objects.  He has so many real tools and they are all locked away.