Paleobird's Next Big Adventure page 141

[Betorq]

I experienced reverse 'sundowning' in 2000 while in St Joseph's hospital in Atlanta. Part of it was the effects of the nurses doing their rounds and waking me up to take readings every few hours. They don't let anyone sleep, with these constant interruptions! So I complained of course & nothing changed.

In time, I switched my sleeping patterns as that was all I could do. I was sleepy, groggy & out of it in the mornings, but really slept most of the day & was bright, alert & energetic during the night, as if it were the day. As bright & chipper as someone who can't walk unassisted, get out of bed on their own can be... It was kinda whacked cos when I was feeling somewhat normal & wanting to be productive, it was the dead of the night. Once I got out of that hospital, I went into a 2nd one, for rehab. Then I was so unhappy there, I called my childhood best friend, Larry, to come break me outta there, without them signing my release papers. I didn't care, I had had enough! He did come & I crunched into his tight Camaro with my left leg in a full length cast, with the leg propped on the dashboard, & all my stuff crammed into his tiny trunk & backseat. I was then sleeping on my mom's floor, detoxing all those months of opiates I had been IV jacked into. So that lasted for about 5 days, classic d.t.'s: scorching abdominal pain & severe cramps, night sweats, crying, wide & sudden emotional swings, lack of appetite. That kept me up a lot @ night too. Once I had finished that, I got back into somewhat of a normal sleep & appetite pattern. I was sleeping about 11-16 hours a day then... That's when I truly groked the healing powers of serious sleep.

It is a very good sign that Bill has a strong hunger, even if he's eating institutional hospital foods, at least the "low carb" kerfluffle finally got worked out by your persistence. I wouldn't eat their food then or now, but somehow people do seem to choke it down, & get better & get released from hospitals every day.

Our thoughts and prayers are with Bill, you & your sister...

[KerryK]

Robin, I was so sorry to read about your Dad. The dementia and confusion that comes from infections (and longer hospital stays) is very scary. I lost my Mom after a difficult time in a sub-acute nursing home then months in a hospital. It was frightening when infections and staying in the hospital turned my normally lucid mother into someone who either didn't know me, thought she was in high school, or in a terrorist's home. She'd threaten me, abuse me verbally, or didn't know who I was or where she was. It gave me a brief look into the hell a child goes through who looks after a parent with dementia.

I hope he can go home soon and he recovers mentally from the infection. You take care of him and feed him so well, I'm sure he'll recover. It is very frightening, though.

Thoughts are with you and your Dad!

Kerry

[Paleobird]

You are wonderful and doing so much to help your Dad. I hope you sleep well and feel refreshed. What you're doing is exhausting and I can't help but think your primal living has helped to prepare you for the demands being put on you at this time. I can't say anything about 'Sundowning' except from the perspective of someone who came close to not being here. If your Dad is struggling with a massive infection then he is very weak. One really good sign is his appetite seems to be good. It took a long time (weeks) for me to have an appetite.

You and your family are in my thoughts with best wishes for a positive outcome for you all.

Being able to eat once in the late morning and then spend the day at the hospital, then come home for a bite and a decompress, then back for the evening shift is a good thing. I haven't felt the need to resort to hospital cafeteria food or vending machines.
Dad is eating well. I think we finally have them sorted out.

There's a pretty interesting wikipedia page on sundowning. A sentence there seems to suggest circadian rhythm is part of it. The way they wake you ever few hours in the hospital to poke and prod you I'm sure isn't helpful, not to mention the lack of any kind of natural anything, light, sound, quiet or whatever.

I can't believe what they are serving a diabetic person. That's just insane.

Oh yeah, that place is zoo 24/7. They are poking and prodding you at all hours plus all the noises of the guy in the other bed who has terminal lung cancer and a hacking cough that really sounds painful. (That guy got sent home with hospice care today.) Dad got moved to a bigger room today which does have a window than k goodness. Natural light helps.

I experienced reverse 'sundowning' in 2000 while in St Joseph's hospital in Atlanta. Part of it was the effects of the nurses doing their rounds and waking me up to take readings every few hours. They don't let anyone sleep, with these constant interruptions! So I complained of course & nothing changed.

In time, I switched my sleeping patterns as that was all I could do. I was sleepy, groggy & out of it in the mornings, but really slept most of the day & was bright, alert & energetic during the night, as if it were the day. As bright & chipper as someone who can't walk unassisted, get out of bed on their own can be... It was kinda whacked cos when I was feeling somewhat normal & wanting to be productive, it was the dead of the night. Once I got out of that hospital, I went into a 2nd one, for rehab. Then I was so unhappy there, I called my childhood best friend, Larry, to come break me outta there, without them signing my release papers. I didn't care, I had had enough! He did come & I crunched into his tight Camaro with my left leg in a full length cast, with the leg propped on the dashboard, & all my stuff crammed into his tiny trunk & backseat. I was then sleeping on my mom's floor, detoxing all those months of opiates I had been IV jacked into. So that lasted for about 5 days, classic d.t.'s: scorching abdominal pain & severe cramps, night sweats, crying, wide & sudden emotional swings, lack of appetite. That kept me up a lot @ night too. Once I had finished that, I got back into somewhat of a normal sleep & appetite pattern. I was sleeping about 11-16 hours a day then... That's when I truly groked the healing powers of serious sleep.

It is a very good sign that Bill has a strong hunger, even if he's eating institutional hospital foods, at least the "low carb" kerfluffle finally got worked out by your persistence. I wouldn't eat their food then or now, but somehow people do seem to choke it down, & get better & get released from hospitals every day.

Our thoughts and prayers are with Bill, you & your sister...

That sounds like absolute hell and one with which I am all too familiar. There comes a point where it changes from needing to be in the hospital to heal to needing to get the eff out of there in order to heal. Sleep. Just let me get some sleep for crying out loud!

Robin, I was so sorry to read about your Dad. The dementia and confusion that comes from infections (and longer hospital stays) is very scary. I lost my Mom after a difficult time in a sub-acute nursing home then months in a hospital. It was frightening when infections and staying in the hospital turned my normally lucid mother into someone who either didn't know me, thought she was in high school, or in a terrorist's home. She'd threaten me, abuse me verbally, or didn't know who I was or where she was. It gave me a brief look into the hell a child goes through who looks after a parent with dementia.

I hope he can go home soon and he recovers mentally from the infection. You take care of him and feed him so well, I'm sure he'll recover. It is very frightening, though.

Thoughts are with you and your Dad!

Kerry

Thank you Kerry. Dad is getting sullen and grumpy. I don't blame him for being pissed off at life right now but it is hard to be the one he takes it out on even if you can intellectually sit there and tell yourself. "That's only the infection talking, he doesn't really mean that."


Dad had a really bad night last night. He kept trying to get up and leave all night. He ripped out his IV and tore off his heart monitor wires which of course sends the nurses dashing in to help. He got combative with them thinking they were trying to attack him and he had to be physically put back in bed and they gave him a shot of haloperidol. AND NOBODY CALLED ME! I only found out that there was a problem when my Dad called me this morning just as my sister and I were getting ready to leave to see him and said, "They are trying to do an operation on me. I think they want to cut off my leg. Did you tell them they could do that?"

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I finally got his nurse on the line and figured out that the "operation" they wanted to do was to reset the IV line and that he had hit her when she tried to do this. When we got there Dad was going on and on about how these people he didn't know were in his house and they were trying to get him to sign papers in order to swindle him, etc, etc. Oh, crap. This isn't sundowning anymore. This is full on delusional.

The doctor thinks that some of the issue may be a negative reaction to the Cipro they had him on (now switched for pills instead of another IV). He was seeing things today that weren't there like bugs crawling on his blankets. The other speculation is that he may have had an additional mini stroke. So, nobody really knows how impaired he is going to be mentally once the physical ailment of the infection is gone.

Yeah, this sucks.

[Jac]

Yeah, it does suck.

Haloperidol is seriously nasty stuff. What you described about your Dad wanting to leave sounds reasonable and could be still associated with the sundowners. There's some speculation that it's to do with brain oxygenation, but there are other explanations to do with sleep rhythms and depth, blood sugar etc. Mostly it means that in the evening people tend to get confused and frightened, and my understanding is that it's worse when they're out of their usual environment and routines. I associate it also with the time of day that a fever will spike - there's something about our organism that leaves us vulnerable at that time. This latest confusion will definitely be made worse by the haloperidol, and it's not quick to leave the system with a half-life from a single dose of up to 1.5 days for some people and over 6 days for people who have used it routinely. I wouldn't be assessing him for cognitive function for at least 3-4 days after that injection, and longer if he gets it or another neuroleptic or sedative.

Is there any chance you could get a private nurse or caregiver to be with him when you can't be there? Trusting hospital staff to follow your instructions and call you if there are any changes has to be a worry for you now. That was a big breach, and shows that they're still not understanding what you want for him.

[Crabbcakes]

Good grief, Paleobird... wish I could be there to give you a huge-ass hug and then play bulldog guard for your Dad for you while you are home doing necessary stuff. Hang in there. HUGS!!!

[lissee]

I'm so sorry this is happening. Wish I had a magic wand that I could wave from afar and that everything would be better!

[zoebird]

Sounds like a combination of factors, so I'm going to talk about my grandma.

My grandmother has very mild memory problems, and she takes medication for it. Some years ago, she had to have a minor operation, and she was behaving as erratically as you are describing. It turns out that the medication for the infection/infection prevention as well as the sedatives they had her one (and the anesthesia from the operation) made her completely bats.

She was combative, she had the same fears/complaints come right up, and even believed that people were trying to arrest her and take her to the asylum.

Part of it is that the medications tend to drop a lot of filters. Most of us know the difference between dreams/nightmares, our normal fears (which we tend to keep under a modicum of control), and our waking reality.

The problem is that these drugs break down those barriers. Usually, it's anesthesia, but the rest of things do not help either. And cipro has a serious side effect in terms of having a psychotropic effect.

Thus, during this situation, they experience a lot of disorientation from being in the hospital, from being woken up repeatedly, plus the fact that the drugs are in their system having the normal side effects that they have for everyone, but are particularly prominent in geriatric patients.

Once my grandmother got out of the hospital from her operation, she did ok. The only problems seem to arise when she has an infection, and typically they send the nurse practitioner around to check on her. She's completely irrational during these times. . . and very aggressive towards the nurse practitioner. BUT, they have a male doctor (who is young, but dyed his hair grey because no one listened to him until he did) and she will listen to him and take any pill he prescribes. He usually prescribes a mild antibiotic. The symptoms continue until the antibiotic clears her system, and then she's back to normal.

Which is to say that she's not rampantly crazy or aggressive, just her normal anxious self (she's a bit anxious naturally), and then also with her mild memory problems. Overall, she's sweet and fun to be around, so she does ok.

She never remembers if you call, write, or skype, which is why I send the emails to my mother and uncle, and my uncle prints and gives them to her once a week when he takes her to church.

My grandmother is in her late 70s, btw. She's otherwise quite active -- she walks a lot, goes to water aerobics (which involves a lot of fore-planning for a person with memory problems) and is part of htat red hat group (or is it the purple hat group?). She also goes to church and spends most of her time in the child care rather than in church because she loves babies and kids.

So, I just share to let you know that this might be temporary. Or mostly temporary.

[sbhikes]

You know, when I had my hysterectomy I totally freaked out, too. I don't know what the deal was, if it was the medications they had me on or being confined in a bed and surrounded with tangled tubes and wires and not being able to really move plus having these rubber cuffs puffing away on my legs and the whole deal, but the first night there I just started freaking out. I was overwhelmed with panic and fear. And even though I was in my right mind and knew my panic was unreasonable I couldn't help it. I totally freaked out. Fortunately my mom pulled a full-on Terms of Endearment scene on the nurses until they gave me something to help calm me down. I can only imagine how much worse it would be if you were not aware of what was happening, how confusing that would be.

[Owly]

I remember how hard it was to watch when my mother would get confused, scared, and angry like that. It is difficult to remember that it isn't them but the illness making them act that way. I also remember how frustrating and scary it was for me when medical decisions were made without us knowing.

Much empathy for you while you're dealing with all this. It's a lot to manage.

[jacmac]

Bloody hell PB, what a lot you and your family are coping with. They say the light here in Australia is different to elsewhere in the world so I am sending you plenty of Love and Light
Jackie