What a night. About 10 days ago I had to take my dh to the ER because of his rages, paranoia, etc. The
dr. changed his medication and he was back to his usual sweet self. Last night things changed. When he got up from his nap I could tell he didn't look good. He never complains about my cooking or what I fix to eat.
He said he couldn't eat dinner because the stuffed celery was too stringy...then the paranoia started again,
someone stoled his box cuters out of the garage, then the sundowning started. Then he tried to be nice when he saw I was getting very upset. We went to bed and it was jerking time. He has been doing this jerking for over two years. But, when he had a jerking spell it would only be maybe 4 or 5 jerks during the entire night...but, last night it was almost constant all night long. I feel like a truck just ran over me. At 4:00 am.
I just got up.

We have a follow up appt. with his neuro this morning regarding his trip to the ER. When he gets up I know it is going to be a fuss to get him to shower and shave. I know this probably sounds minor to some that have it so much worse. But, I am really upset this morning and just venting.

I know..how you feel too. My dh was doing so good after the ER trip and I was thinking we will have maybe a few more months or at least get through the summer before I have to think seriously about placement...

I hate to say it, but I know myself and I know I can't handle this paranoia and delusions for any length of time.
This continual jerking all night is what really has me worried. I gave him an ativan when he started up last night with the paranoia and it didn't seem to do anything for him. I could see he was trying so hard to not be the way he was...but, he just couldn't control himself.

Good luck to you too with your appt. Let us know what the dr. says.

Vickie beat me to it! I was going to say to nix the shower and shave too. Besides, if he looks a little unkempt, it may be a better visual for the neuro of what's going on. You know, the old "picture is worth a thousand words" idea.

Back from the dr. Can't really say much...but, the dr. did increase his depakote (divalproex) from just once a day to two times a day 500mg each time. The dr. could see I was very stressed and my dh looked like crap...not shaving for a week and just kind of out of it. The dr. said to me..."You know this is a progressive condition" and your dh was stable for longer then most and now he is going down hill...he may keep getting worse or level off again, we just don't know". Don't have to take him back for a month unless I judge it to be necessary, because of course nothing can be done to improve the situation.

I think that even when it is bad and I knew it would get worse, I still wasn't ready for the worse. When I woke him up to get out of bed this morning...he could hardly get out of bed. This too was something totally new.
He was leaning to the left then the right and couldn't seem to know which direction to move into to get out of the bed. Also, I don't know about this walking thing either. I thought he walked slow before, but this is really...really slow and leaning a little forward and sometimes limping. Please someone tell me this is the normal progression and it will continue to get worse. I think I need a slap in the to face to face this horrible reality I have just discovered.. Strange how you know something, but when it happens, it is almost like you
didn't know are you have really been in denial...this only happens to others not me.

Judith, yes we do care. You have almost described my DH as to the walking. It gets worse each day it seems. So slow, just sort of shuffle, hardly picking up his feet at all. He uses a cane, but not the walker and I really don't think the walker would help - I think he would just fall over the walker. Yes, I guess it is the normal progression - and I know it will get worse. Hugs to you.

Judith,

I am so sorry.

I have to confess this as Vickie brought it up and Marilyn posted as well- one of the reasons I tried so hard to get H up from the falls before he was transported to the hospital last week (admitted to neuro following ER) was that I was so ashamed of how he looked. He had not showered or shaved or had a haircut in awhile, to put it mildly. The house also shows signs of neglect. I cringed to think anyone would see how we live or how H looks.

But maybe, maybe, it contributed in a relatively good way because the paramedics could see that he was unkempt, could hear that he was delusional and could appreciate the level of his agitation. Even though I had poa and health care proxy to give to them they said it was not necessary, that he clearly needed to be removed from the environment and transported.

Whether this will ultimately result in any good I don't know, but it got him to the hospital without guardianship, which I do not have. They said that in their opinion, which is accepted by the ambulance service and by ER admission, that he did not have capacity.

Unlike almost anyone, H had an adverse reaction to generic depakote. It is thought, as far as I know, to be a benign med but H went to crazy town on it with increased delusions and those delusions were action oriented, "I am going to the library now because they are waiting for me to write more books".

Ms. Ambien has just reminded me of the time- goodnight.

This is like from my great grandmother- for leg jerks try quinine, most readily found in tonic water, regualr or diet. (Now my preference is for a little tonic with my vodka and lime). H has tremors and shakes too but has been off alcohol for more than a year. So when he indicated he wants to drink I mix him a vodka, tonic and lime but with no vodka. It's not gin, he does not know the difference. Does it help? Would it be worse without? who can tell?

For me, just another little check mark on the coping side.

judith and others with declines. yes it hits very hard to finally be the one slapped in the face with the realitiy of it all. it happens to others seem to be generic form of denial. i hope you can get his meds ironed out to stabilize mood swings. its not easy but with dr followups can be done. wishing you the best.
divvi

Heck yes- dementia respects nothing! Not age, not intellect, not emotion, not civic responsibility, not acheivement, not a thing as far as I can tell.

I'm going to start a topic asking advice regarding placement- and don't want to go off topic, but an ALF director I met with today said "dementia sucks up everything in its path, and it is a wide and unforgiving path".

abby - you are so right about dementia not respecting anyone at all!! and the ALF director has it right also that person must have first hand knowledge because those on the outside not only don't want to look in they deny what IS in.

JudithKB - you are in my prayers. I know I live in denial most of the time. Reality is just too hard.