On edge

[Pepper]

I am on edge, operating on nerves. My head is all funny, tight band across my eyes. When I get this way, I go very very slow, almost as though combating this - on edge feeling.

Another episode of dementia last night, my PALS insisted he had to get into a car, fought me and went out the door and no car. The cold helped. He came in, and asked if the car is in the garage. I managed to get him into bed and again he wanted to remove the catheter. I reminded him - he is still bleeding from the last time he tried to pull it out. He wanted to cut it off instead. I turned the TV on, - Jay Leno. I told him it is Jay Leno time and got him distracted enough, he let me settle him into bed and watch his Jay Leno program.

 

[Miss]

I'm so sorry, Pepper. This is hard enough without that, too.

 

[Katie C]

Pepper... have you asked your hospice people if it's ok to give him a little extra quetiapine when he has an episode like that? No matter what Glen's dosage was, it was always with the understanding that he could have an extra 1/2 tablet if there was need. Also... be aware because you may be seeing that the dosage needs to be changed in general so the "episodes" don't happen.

 

[joni51]

Bless your heart Pepper, wish I could help you.

 

[abbas child]

Pepper, I hope you are feeling much better and your PALS is back to his "normal".

 

[Lavender Lady]

pepper so sorry about those episodes. I hope and pray I do not get FTD along with everything else. I know it would be very hard on my husband.

 

[Miss]

Doesn't FTD usually show up before the ALS symptoms?

 

[Katie C]

Missy... it's hard to tell. It can... but often it's not recognized as such until long after diagnosis. As with anything else.. there's no "one answer."

 

[Pepper]

Thanks. I am feeling better.

My husband told everyone he has Alzheimer disease 3 years before diagnosis. After his diagnosis, the MRI showed frontal lobe dementia. Hence his showed up together with other symptoms, mainly fatigue. That was how it started with him then walking funny, no strength in his hands but it was his swallowing and slurr speech that got him diagnosed. Now his dementia comes on more and more, mostly at night. I recognize it from his face, a dark shut up look, almost mean look. When he has that face, it is like a stranger taking over. He does not seem to recognize me and there is no talking to him.

I had a strange nightmare of him reaching over and hitting me, while I was asleep in bed. In my dream I thought, "As I thought, sometimes the sick can get very strong." I screamed with fear and woke up, still screaming, the dream was so real, for a moment I thought it was real. Then I saw him sitting up on the bed wanting to go some place. I asked him where he wanted to go to, he told me some place away from here. I guess subconsciously I am afraid dementia would turn him from this sweet patient gentle husband into one mean and violent as his primary doctor warned me could happen.

 

[abbas child]

Pepper, that is so hard. I wish I had words to help you. I don't, but will pray for your safety.
Ann

 

[LizT]

Pepper- very sorry youre having to deal with this and your hubby is going thru it. I know this wont help at all, but juat wanted to let you know that it is very common for folks with dementia to "act up" at night. Its called "sun downing".
Unfortunately, I cannot tell you what you can do about it. As Ann said, I will pray for you.

 

[Pepper]

LizT, thanks. Knowledge does help. Knowing there is a name for it, sun downing and that it is common with folks with dementia helps a lot. I will google that.