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SKlocinski

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A few days ago, Tom told me he woke up and didn't know where he was. I didn't pay much attention because he has done this in the past...long before ALS. But then Friday night he woke me up and asked me if I heard music. I did not and my hearing is much better than his. Yesterday morning he tried to tell me the music was coming from the microwave and the cable box. Last night he went to bed early as he always does. I was downstairs watching TV. Around 9 PM he got up and came downstairs. His eyes were as big as saucers...like he was not only awake but alert for something. We both went up to bed a while later. The first thing I know he is poking me awake. He is trying to tell me something but of course, he is now barely intelligible. I finally figured out that he was asking me "where everyone went"....Then he gets up and looks in the bathroom, the closet and out in the hall. I asked what he was looking for but didn't understand the answer. I finally got
him to go back to bed but he got in our bed instead of the hospital bed. I didn't object since I just wanted him to lay down because I was afraid he would fall if he
kept wandering around. So we're laying there and he says "Did you bring any money?" Money for what? We are at home. Then he gets up and goes out in the hall, looks out the bedroom window, goes in the closet. I asked him what he was looking for and he said "the bathroom". He did then go into the bathroom. I think he thought he was in a hotel.

This morning Tom tells me that there were 2 men in our bedroom last night talking about what a wimp he is for letting me take care of him and laughing at him. Whomever these people were, they evidently used to be nice guys but not anymore. Then later today he wanted to know what "they" were talking about. To my response "they who" he answered, the 2 men.

He is aware that he is confused and I spoke with him about it. He says it is because he hasn't been able to sleep. I called Hospice and they prescribed Risperidone to calm him down and hopefully keep him from being so agitated tonight.

I am thinking that either his being malnourished or CO2 is causing this problem. He will not or cannot take in enough calories even through his feeding tube and he will not use his bi-pap. I'm thinking that the most likely cause would be CO2 buildup since I wouldn't think dementia would present so quickly and I would have thought that if malnutrition were the cause it would build up slowly as well.

The Hospice nurse will be here probably Monday or Tuesday and they will do some blood tests. They will discuss this at their meeting and decide where to go from here. Just wondered if anyone and seen CO2 buildup cause this.
 

Vincent

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YES, too much co2 does cause confusion. Does he wake up with headaches? That's another sure fire sign of too much co2. He either needs to start using the bipap or get used to the guys in the bedroom.
Vincent
 

affected

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I would be suspecting CO2 first. As Vince asked, does he get headaches?

If he does not want to use his bipap you will have to discuss the best course with hospice - keep him semi-upright in bed and the possibility of medications to calm him.

If that route is taken it is probable that his time will be shortened, but as you know the risk of him falling and having a serious injury or death in a confused state at night is not giving comfort care either.

I hope you can work out a way to deal with this that he is comfortable with quickly. It must be very distressing to see him like this :(
 

Ells

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I also agree that CO2 is most likely culprit unless he's started or upped dose of opioids/strong pain killers?
 

SKlocinski

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Thanks for the replies everyone. Tom did take Tramadol for a couple of days after his fall but he hasn't taken any for a couple of days. He seems to have become overly attached to me. I have a pager so that he can page me if he needs me when he is upstairs and I am down or vice versa. Around 9 PM last night he paged me. When I went upstairs he pointed to me and to our bed...he was in the hospital bed. When I tried to decline going to bed, he said (quite clearly) "Isn't that our bed"? Well, who could argue with that. So I went to bed.

In the middle of the night, he got out of the hospital bed, moved his sheepskin to our bed and lay down there. At 2:20 AM he was ready to get up...and...you guessed it, I had to get up with him. When we went downstairs he wrote on the white board "Stay here today". I had called hospice yesterday and got a prescription for risperidone to take before he went do bed. I gave him one before he went to bed and it didn't seem to help much (they are only .25 milligrams) so I gave him a second one. That did seem to reduce his agitation somewhat and he did get some sleep.

Since he was agitated again this morning I slipped one in his feeding tube. He is lying in bed right now so hopefully he will stay put for a while and maybe fall asleep.

I am well aware that not using the bi-pap and not getting enough calories will likely shorten his life. But he made those decisions before this current bout of confusion and was perfectly competent to do so. He told me yesterday that he is just burned out. I sort of think that he is being clingy with me because he senses that his time is short and doesn't want to be alone, but that's just my assumption. When I suggested that he lay on the hospital bed with the head up he blatantly ignored me and got in our bed. He does understand what I am saying, so yes he ignored me.

And he thinks there is something behind his lounge chair in the living room. Something alive. I made a big show of looking and told him there is nothing back there that doesn't belong but he still insists. Oh, and this morning he got up from his chair and put his shoes on. Then he sat back down in his chair. I asked him where he was going (he never wears shoes in the house) and he didn't answer. I handed him his white board and said write on here why you put your shoes on. He gave me a little smile and quite clearly said "No!". I honestly don't think he knew why he put them on. A few minutes later he took them off. I just said "Let me get these out of the way so you don't trip over them" and put them away. He didn't say a word.

We had told hospice that we didn't need an aide but I think I am going to need to ask them to have someone come and sit with him if I have to go out as I don't want to leave him alone like this.
 
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Ells

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Sandy, I am no expert, but that sounds more than CO2 confusion.
 

lgelb

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What you describe resembles Larry's last ICU psychosis after his aortic dissection pre-ALS. He, too, had a history of severe confusion in the middle of sleep periods (once nearly knocked himself out waking up in the middle of the night at a friend's house). The more severe and prolonged version goes to stress, lack of refreshing sleep, and of course possibly O2/CO2 imbalance in this case. He could also be actively dying, in his way, as you note. That all kind of goes together with malnutrition. I would certainly check for a UTI since he doesn't sound well-hydrated?

While risperidone may knock him out, it's not really indicated for this. Not knowing his other drugs/conditions, I wouldn't suggest anything else, but he won't have stable blood levels as it's being dosed. When you get variable blood levels, the cure can be worse than the disease (which he doesn't have). If he were violent or abusive, that would be another matter, but that's not what you describe. Antipsychotics amount to a physical restraint in a case like this, and my personal bias is not to stand in the way of someone who wants to not be restrained, if that made sense.

I agree that you probably don't want to leave him alone. I'm sorry that you find yourself at this point in the journey.

Best,
Laurie
 

SKlocinski

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The hospice nurse was here today. She did test his oxygen levels and said they were low, although they were not excessively so. However, she said that it is quite possible they are lower at night when he is lying down. They prescribed a different medication that they are saying is more effective. The name of it went in one ear out the other and dropped on the floor. That won't be delivered until tomorrow though. The weird thing is that Tom is lucid and able to carry on a coherent conversation (within the parameters of his speech problems). He is very fatigued but oriented. He even realizes that the things he is seeing are not "real". Last night he called me upstairs a couple of hours after he went to bed and wrote on his pad "The odd visions come and go". The he wrote "Stick around". I asked if he wanted me to stay there with him he said yes so I went to bed at something like 7PM to keep him company. I could see him lying there with his eyes big as saucers and following something with his eyes. He said he saw things he never saw before but I was unable to understand him when he described them. Both the hospice nurse and I spoke with him about using the Bi-pap and/or using the wedge I bought him a while back to elevate him that he used once, said it felt funny and wouldn't try again. He did agree to try using that. Hopefully covered with the sheet and his sheepskin it won't "feel funny" and he will at least keep using that if not the bipap. The hospice nurse did seem to think it was the breathing that was causing it. The risperidone did not make him sleep nor did it make the hallucinations go away. It did stop his agitation...roaming around, opening and closing doors, etc.
 

affected

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If his O2 sats are low then his CO2 will be high.

I hope you can keep him comforted, it must be awful to hallucinate and know that much of what you see is not real, yet you are seeing it :(
 

SKlocinski

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Tom passed away last evening. He went to sleep in his lounge chair and passed peacefully.
 

affected

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I think that it is very fair to say that his breathing was indeed declining and CO2 was possibly behind the confusion he was having.

I am so glad he passed peacefully rather than falling when wandering confused.

You have looked after him so well. I hope you find peace in yourself quickly xxxx
 

Narrowminded

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Sandy I am so sorry for your loss.

Hugs my friend,

Sue
 
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