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 I'm scared -- new level of dementia 
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
Post I'm scared -- new level of dementia
The past few days really frightened me. Jerome has been almost completely disoriented about where we are, doesn't recognize it as our home, can't find any of the rooms, is afraid to sleep in the bedroom, has a frightened and suspicious look in his eye that is almost unnatural, and tells me that he feels "disconnected" from everything around him.

It is like he has finally "slipped over some edge" where he is no longer simply taking brief forays into Lewy land -- the brief forays are back into reality. It has scared the crap out of me. I guess I knew this would come, but I somehow thought it would not be so abrupt.

He is not having hallucinations, no capgras, knows me and feels safe even if very uneasy as long as I am right next to him. But he doesn't recognize anything else (except for the dogs and cat, God bless 'em!).

I've checked out any chance of infection -- none that is apparent. He tells me he feels "very unsure" and that he should be in a hospital. But there is nothing really "wrong" with him that warrants a hospital. I've called the doctor to arrange for another round of IV hydration, but he's never been like this before even when dehydrated.

He is afraid to lie down, yet he does not want to do anything. Any sound, TV, etc. agitates him.

So, I'm really scared. Don't know how to help him other than lots of holding. It feels like that horrible day five years ago when he was first diagnosed with some type of dementia and all I could imagine (and cry about) was the time when he would stop knowing me. Yesterday felt like that day.

Any advice, suggestions, commiseration? What do I do with him when he wants to do nothing, but nothing also agitates him? Is this how your LO slipped over the edge?

I'm so scared I don't even feel I can tell anybody but my friends on this forum.

Renata (and Jerome-in-Heaven)

Mon Feb 09, 2009 6:03 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)

Sounds very frightening. I'm glad he recognizes you and (the other?!) pets. It seems that he may get some comfort from that.

Can you call the psychiatrist involved? Perhaps Jerome's antipsychotic med could be increased?? (Is he taking any?) Or an increase in Provigil? (I forget if the VA ever approved that.) Could this be a delusion? Maybe check for hyponatremia??

Does he have the impression that his "real home" is elsewhere? Has someone done something to his "real home"?

Can he be engaged in any sort of around-the-house chores that will preoccupy him?

Hang in there! We are thinking about you both!


Mon Feb 09, 2009 8:17 pm

Joined: Thu Jul 03, 2008 11:05 am
Posts: 150
Location: Raleigh, NC
Dear Renata,

I wish I did have advice, but the best I can offer is commiseration. It is good that Jerome recognizes and trusts you. I often didn't have that when Mother was living with me; I'd have to call in my brothers to calm her down. (Now that she's living elsewhere, she seems to recognize me most if not all the time.)

Your love and the good care you give Jerome are obvious from your posts. I hope the love gives you the strength to hang in there with him through the next phase.

All the best from one who has been over the edge and round the bend,

Mon Feb 09, 2009 8:57 pm

Joined: Sat Dec 13, 2008 12:52 am
Posts: 118
Location: BC, Canada
((((((Renata)))))) My dad had dementia when he passed from a broken hip and when he would get really bad and seemed to have slipped right over the edge very fast like that it could aways be put down to one of two things. I don't want to get your hopes up at all because this may have absolutely nothing to do with your husband but it came down to either he had not had a bowel movement for over 24 hours or he would end up on antibiotics for a urinary infection and we have no idea how this would occur, it just would, he didn't have catheter or anything else that we could see that would have caused this reaction. I am so hoping that you find something as simple as this to bring him back.

Praying for you and Jerome. Liz.

Mon Feb 09, 2009 11:12 pm
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Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
Mother's forays in Lewy Land are also increasing in length- the attempts to buy her own clothes, not feeling like this is home. she does have more hallucinations etc. She is alternating between spurts of energy and nothing. The only thing I can do is keep her company and remind her it's that damn Lewy acting up. She agrees he's bad now.
Hang in there and we'll hope for the best
Take care


Mon Feb 09, 2009 11:16 pm

Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
He Renata,

You must be so frightened and scared. I can only commiserate as this is such a confusing, strange, idiopathic disease. I don't think all of our studying and searching can every fully prepare us for some of the phases our LOs go through. I had no idea that it could change so very abruptly. Guess we are jaded by the gradual changes. I would be scared too. Glad that he still trusts you and the pets as that is a good sign. I am sure by reading all of your posts that your close, loving relationship gives him great comfort. I am sooooo sorry for you. :(
When my LO gets in his "wild phases" he verbally attacks me (probably because I am the only one around to attack) and that is very hurtful and frightening so you are fortunate he still trusts you. We just went through med changes and..knock on far so good. Perhaps the Dr. can increase some of your LOs meds and help to get him through this.
Will be thinking of you and Jerome and praying this is only a temporary phase. Wishing you some positive thoughts through this difficult time. :)

Keep us updated.

Dianne C.

Mon Feb 09, 2009 11:50 pm

Joined: Tue Aug 12, 2008 9:54 pm
Posts: 4
Location: San Antonio, Texas
I am so sorry!! I feel your pain in your post. The love you have for your husband is so strong and you are such a wonderful caretaker. He is a very lucky man.

My husband also took a sudden turn. It happened in a split second. He was here and then he was gone. He has been in the hospital for 6 weeks, they have adjusted his meds, and he now knows me again and is almost back to normal(for him).

This is the cruelest disease!! It is so unpredictable and I find myself always trying to make sense of the non-sensical. I am so alone with this and I am so grateful for this forum. It helps me realize that I really am not alone. There are others going through the same experience.

Please see if maybe a medication change might help your husband. I was so reluctant to take my husband to the ER. It has been a horrible experience but it is turning out OK. Much as I want to completely care for him and distrust others caring for him, sometimes you just have to trust others because the needs are beyond what we can do.

I can only offer you hope and encouragement. Only you know what is right for your husband. You are brave and courageous!! You inspire me.

Sat Feb 14, 2009 2:03 pm

Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
Thank you, thank you for all your kindnesses! The past few days, I've been able to "pull" Jerome back for a few hours a day, as long as I am right there beside him and engaging him in discussion .. from theology to politics to just old family stories. He can focus, respond, track, etc. Then he is exhausted and once again doesn't really know where we are or that this is our home.

MM, thank you do much for reminding me that "boredom" is a state of mind that we project onto our LOs. I am so concerned about Jerome being bored, but whenever I ask him, he looks at me like I'm crazy to even think that. So, I guess he is stimulated to his capacity.

Robin, Jerome has been on 300 mg Provigil daily for a couple of years. Over the last six months, we've had to cut it back to 100 mg as he was over-stimulated, over-wired, and overanxious. He's also lost 35 lbs over the past year, so I'm sure that his body mass in relation to the dosage had to be re-balanced.

Unfortunately, I just think that Lewy is marching on and dragging Jerome along. I just hope that as it progresses he does not turn aggressive or violent.

Again, thanks for letting me know I'm not alone out here!

Renata (and Jerome-in-Heaven)

Sat Feb 14, 2009 4:16 pm
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