On a previous thread I asked about H'as behaviors and was surprised to see it evaluated as sundowning.
I don't think I ever got back to that point. I read an article in the NYT and then visitied a locked AD ALF and the director said, "they are sundowning" and it was around 5pm.
From that limited information, I thought sundowning was this wild, uninhibited, spontaneous behavior that H just did not and does not exhibit. Can it start at any time, like in the early pm?
Dinner used to be at 8:30 or so, and now it is better if it is earlier. This is for both of us. I think he would be comfortable at ALF; diner is at 5:30!
He can eat and then I can do yoga, pray, and prepare for the next day-week-year-whatever! (At home I mean.)
Sundowning can start at any time. At one time my husband paced all day. He just walked from one room to another room. We don't have a large house and it is a ranch style so he just makes the circuit around the house. He was started on seroqul and cymbalta to help with these behaviors. They did work for a good while. Recently it started to get bad again, so his cymbalta dose was raised and his doctor added .5 mg of ativan as needed and 1 mg at bedtime since he was waking so early.
My home has been changed to the point a toddler can walk around and not get into any trouble. I have keyed locks on all the outside doors, so he can't leave. It upset him at first but now it doesn't phase him. I also have a lockbox that I keep all the meds in, since my husband will swallow anything given to him or that he sees. He doesn't always realize what is food and what isn't.
With my wife sundowning describes it EXACTLY! The behaviors used to happen around 5-6PM but during winter they begin around 3-4PM. It is not a clock time but a sun time.
Eating does have SOME effect, it is intensified if she has yet to eat, but it happens even if she has a big/late lunch.
Her behaviors are to become suddenly cognizant of her lack of knowledge and she becomes obsessed to "know things". She panics that she doesnt know who, what, when about ANYTHING that comes to mind. Once we were driving down Interstate 5 in central California trying to come home from a trip (a full day's drive) She became panicked and scared that she did not know where each exit ramp led to (BOTH the name of the town, the available services and who might live there!).
When that became too much she then obsessed that she did not know the destination of EVERY car that was headed the opposite direction(!) The more she questioned herself the more she became aware of her deficits. The more insight she had of her disease. The more distressed she then became.
SOMETIMES I can make up information (so that she then 'knows') but how can you make up a destination for hundreds of cars/trucks a minute?? Eventually I gave up and got a motel. We came home the next day.
Once I identified she was not 'depressed' at her symptoms but 'scared and anxious' at her knowledge deficit, I got her Ativan 0.5mg and it can generally calm her down. Our PCP prescribed it without another exam :-)
m-mann, it’s interesting how you describe her obsession to “know things”. My DH is obsessed with people. He thinks he knows everyone. He tries to talk to everyone who makes eye contact with him. Then he always tells them that it’s good to see them again. If I can’t distract him before he starts talking to them I have my little card that tells them that he has Alzheimer’s. Yesterday he talked to a young man in the doctor’s office & then when we were going home he kept telling me that we should invite him over to have something to eat with him. That has been his thing lately. Anyone who he meets he wants to have dinner with them. I tried to tell him that we really don’t know these people or where they live, but he just doesn’t grasp that. My DH has no idea that he has AZ. He never accepted that anything was wrong with him & now I don’t think he would even realize what it means
False familairty - My wife believes she knows anyone who is riding a motorcycle. (mostly 'biker types' rather than 'inexpensive transportation' types) She waves at them (sometimes they wave back) and when asked she tells me that they live 'right around the corner' or 'right near us'. Because we are driving there is never an opportunity to make any extended conversation. (thankfully)
I struggled to identify exactly what symptom this is I finally settled on "Delusion" - believing that something is true even though it is not. Certainly not harmful in our case ;-) Jim
Thanks Jim, I know I'm not the only one who has this situation (I hate to call it a problem!) but it's comforting to know that I'm really not the only one!
That is when I know it is time for meds when she starts asking questions. She will work herself up to crying. It takes about 30 minutes for zanex to kick in so as soon as she starts around 3:pm cst I give her 1 mg to calm her down.
Ditto here, dh is always telling people hello, and waving. Even in town where we know no one.
Sundowning is intense, starts about three pm and goes on for 3 hours.
I am attempting to get myself out of a slump and continue on looking for all avenues of help. He is native Hawaiian, there may be something there. ugh..just cannot seem to do much of ANYTHING, after last years marathon of calls, appts, etc.
My LO is a retired teacher an every little kid she saw was one she had in a class even tho she retired from teaching in 2001,never stopped her from talking to them like she knew them
Even my dh can't verbalize easily or often, he always manages a smile and some sound for a child. He loves kids and will stop and try to talk to all of them. I have tried to re-direct him but he just sees another one and goes to that one. I simply explain to the adult with the kids he has alz. and is harmless. Most of them are ok with this. As far as sundowning as soon as my dh gets out of bed, he is pacing. Even after bedtime I have to keep putting him back in bed. This is a problem day and night. Hospice is going to start him on something to help him sleep and maybe this will calm him down during the time he is awake.
Ativan seems so common here. H has it @1mg tid and I have it prn. I sometimes feel myself coming awake at around 5am and quickly put 1/2 under my tongue because I am not ready for another day, not quite yet.
Deb, we have a house kind of built in a circle where most rooms can be closed or opened with a series of French doors. H does the same thing, just walk around in a circle for hours. I close off my bedroom (which also closes off my bathroom), at night, and during the day add the sunroom to it.
His routine seems without agitation, just from his bedroom, into his bathroom, through the living room to the kitchen, to the pantry and back again, and again, and again. I guess I should not say circle because if I have closed off the other rooms he almost never goes into them. It too is a small house.
Oh! The "knowing people". In the early years, regardless of which of us was driving, H would wave, at those walking by, at those at red lights, whomever. I would say, "don't do that, you never know who will take offense." ("Carrying" is lawful here.) And he would just laugh and say "my zen is good; nothing will happen".
Sundowning I think. Oddly it happens for my DW at 8pm every night. This includes hallucinations. Her face becomes contorted. She looks around the corner and sees people. She keeps going down the hall to check that the rooms are there. Oddly, she thinks the voices in the TV are real people and won't talk in their presence. Like the others we've uped her meds and will again if it becomes too serious. The poor thing is frightened. I often find that while watching TV I hold her hand and wiggle my fingers. This touching seems to calm her. It usually passes within several hours. Overall it is an agitated state combined with hallucinations. Shes stage 6. Early onset. Hope you are all doing as best you can. Hate January in Minnesota.
Glad you got them mothert, and of course thank you again for the book. I enjoyed it and a friend who had his father pass away from dementia is reading it now.
Part of my sadness is also that I cannot carry on my little business so much anymore, I depend on him to husk the coconuts and he is getting really shaky. Too much trouble to try to find someone else.
As you said on another thread, I sound depressed. I am working hard on getting state medical as with our income I qualify. It is a bit of a hassle, but when I get it I am going to do the whole gamut, have not seen a doctor in many years. Some happy pills may be in order.
divvi I am pursuing your lead, and have another number to call today. Thanks again dear person.
Coco - good luck on the medical. Here in Washington if you have to have minor children, disabled children, disabled yourself or be over 65 you can not get state medical. Low income will not qualify one for it.
The last couple of days have been very difficult to get thru. 2pm - 6 pm it seems see swings up and down emotionally. crying to laughing, but mainly crying. I have double the dose of xanex and give it at 2:00 and 4:00 it has been very hard to watch her struggle thru this time.
Oh gracious - Sundowning brings back terrible memories. It was so bad at our house that I will beleive anything you folks say about it. This was aslo the time of day that my DW didn't like me at all. Her doc prescribed Seroquel and it helped a lot, but, it is a dangerous and expensive drug.
I am sorry to learn the last few days have been difficult. Do you have lorazepam available as well? I liked xanax for myself but have found it hard to be rx'd in the last few years. Anyway, lorazepam can be split and whatever dose can be put under the tongue for fast relief. It is not nearly as bitter as some of the others.
As I said in another thread, dean, I did not think sundowning included pacing. Based only on an article/video at NYT.com and from what the admissions director told me at a locked AD unit, I thought it was something like a wild outpouring of frustration. And maybe it is that, only manifested in different ways for different persons.
Because my H also has a seizure disorder he is, or so I have been informed, very limited in the meds he can take.
Coco- I am sorry these days are so very tough for you. I hope you can find some way to keep your business. I know for myself that I miss working so much. Sorry, you did not ask for advice and I may be wrong in saying that so I'll just stop now with best wishes sent your way.
Charlotte - I, too, live in the state of Washington and I know, because I have a nephew who is a alcoholic, never had a job in his life, bum, that state aid is available because he is "unemployable" because of the above. I have to say I almost lost my lunch when I heard about that. In addition, we taxpayers have footed the bill for him twice to go to rehab for a month each time, AND, he is on the liver transplant list (also compliments of we taxpayers). Now, here's a young man (40) who does this all to himself, while he impregnates stupid women who we taxpayers also get to support. Why is aid available to a parasite like him (sorry, but he is) and not available to someone like you? That really pi$$es me off. There is literally layer on top of layer of entitlements in this state (everywhere, really) that nobody knows about. If you could just find somebody who knows the system who could help you get through the maze. I feel so bad for you.
abby, many dementia patients experience pacing as a symptom of sundowning. Pacing in mid-late afternoons was one of the first signs of his dementia. While in the hopital for med adjustment he would pace all day and all night-nothing would knock him out to sleep. I am glad those days are over, however we are now in a phase where he won't sleep, gets into everything in his bedroom (clothes, coins, personal care items, etc) and throws them around the room at night. None of the meds we have seem to work on this. Last night he took a flashlight, toiletries, etc and dumped them into the toilet. Thank God he didn't try to flush it.
I'm new to this site, but not to Alzheimer's. My wife's mother had it, we cared for her until even with around the clock help we were overehelmed and in 2007 my wife was diagnosed, now moderate stage. I'm 70, she's 68 we have 2 daughters both have refused genetic testing.
Our MD prescribed Lorazapan and Melatonin for my wife's sundowning symptoms. She'd become a hyperactive roadrunner after 4pm. If we were at a restaurant she'd have to be taken to the bathroom repeatedly or would continually remove and put on her sweater. These meds for the last several months have dramatically alleviated her symptoms.
Welcome Nelsons, I am sorry you have a need for this site but glad you found it and all of us here. If you have read any of the posts you know you have come to the best place for help and comfort. Glad the meds are helping your wife.
hi there Nelsons. there are quite a few men here caring for their wives too. they as well as you are doing a really exceptional job:) i am sure. welcome to the group and know that we are a great group of folks who know the ropes some of us into this more than a decade. hope to see more of your posts. divvi
Residing as we do in an ocean front condo is a great blessing. When my wife is down and refuses to get out of bed. I've found that playing music, music that at one point was fun and stimulating has a profound effect.. For us 60's R@Rand Disco works well. initially she angreriy removes the earnpods outsoni use speakers until we go out. The music more often than not will alter her mood get her up dsncing on good days and we end up walking to the beach where the sounds of surf are a psych. dynamic all their own.
If she's hyperactive, softer music and a trip to the exercise room spending 30 mins on a stationary bike is frequently more effective than medication. I used to laugh at the concept of music theraphy until I attended a care givers group that'll encouraged it's use integrating it with exercise. it works when words have no impact whatsoever.
I realize that I am very lucky to reside where I do and to have access to a well equipped exercise facility a few floors below. I frequently say I've gone through all the stages of grief, but acceptace. I'll never accept the loss the loss of my best friend, i have learned to continously adjust and adapt, but never accept. we met when we were 14 & 17 have been married 51 yrs
Hi Nelsons, nice to see you posting. I have been on this site for a few months. it had literally saved me at times. I have learned SO much, and been able to say it like it is to the ONLY people that understand. your condo sounds lovely.