My wife follows me everywhere around the house or when we go anywhere. If I go to the bathroom she follows me in and waits for me. She had been on risperdal for three months .I called her Dr and we are reducing the quanity to One quarter MG twice a day we go to see her next week.He says it's progression of the AZ. I'm not sure. Does anyone else have this shadowing problem?
Oh, boy, have we ever! Shadowing is one of their favorite activities!!!
There is a discussion called "new here" a few pages over (use the search function). It deals with a lot of shadowers. There's also "lurkers", and they shadow because they follow you, but then they hide so you can't see them:
NEW HERE---My DW was a "lurker". (It's funny now that we look back, but then....oh, was it annoying...)
She would go into the next room and hide...stand absolutely still, and peer around the edge of the door frame. Just enough to get her eyes over so she could see you. If you caught her eyes, she stepped back, out of view. Then slowly, slowly, back again until just the eyes could see you. If you changed rooms, she'd change until she was in the adjoining room, and then more peeping. One time...I swear to you...TWO HOURS she stood there, exact same place, exact same position. How do they have the stamina?---
It will pass....it will pass. It's just like when you have a two year old that follows you so that you can't even sit down on the toilet unless they are right in the room with you. It passes for the two year old, it passes for the AD patient.
My DH has been shadowing me for over a year. And when we go anywhere, he follows behind me if I'm not holding his hand. It is lessening now, but not gone away. As trisinger said, it will pass.
Yep,Shadowing your every move is a very well known part of the disease. My DH also would walk into the bathroom with me and just stood there unwilling to leave so i just turned a blind eye but it was quite daunting and drove me crazy. plus when i took a bath he would stand over the bathtub say nothing but not move. i literally would bump into him if i turned around. i have no idea how to get them to quit this obnoxious habit for you, but just remember they must feel secure in our presence and feel comfort in seeing someone familiar. try to keep them busy doing something to take her mind off of it if possible- my best wishes, its so hard at times like this, ps i dont remember meds other than zyprexa which was for aggitation during the same time, that relieved the situation the zyprexa zoned him out sleeping all day which was ihave to say a relief.divvi
I hadn't considered the shadowing term, but I guess that is what is happening here. My husband is a large presence and he now stands right where I am going to be or right in my way...I am very claustophobic, and it drives me nuts. I stop walking and say excuse me, then he'll move, but it will start over again. He looms over me as I am cooking, and I want to scream...give me some space....but..not. I haven't thought he was that far advanced,but small things are happening that say I'm wrong. He isn't "tracking" as well as he was a month ago, but will remind me of things I have forgotten...hello? However, we haven't had an explosion for several days..am I hexing myself by saying that?
What the heck is sundowning...I have searched the various discussions for a meaning, but I get mixed results...I think slowing down, but then I hear gearing up. Explanation? Or am I just thick headed?
Kathi - for us, sundowning begins @ Sundown, or even just before, when the 'shadows' begin in the room...I usually turn on all the lights now because that seems to cut down on the 'behavior', but essentially, my DH just gets into a "dark" mood. No explanation at all for it -- he can be going along just fine & then BOOM, he's got his 11's on his forehead & just in a dark dark mood. (11's are when your eyebrows bend inward & make 11's in the middle between your eyebrows) He doesn't get "mean" or anything, but just a 'concerned' and 'very serious' look about him. NOTHING seems to help. And forget watching anything on TV at this time of day that might be "concerning" to him, i.e. the news! Or a "dateline NBC" program or "48 hours"...any of these at this time of day/evening just send him into a tailspin of "worry" and "concern" that whatever is happening on the TV is REAL & might happen to us!
Sundown syndrome--also called sundowning or sunsetting or sundowners--is a behavior common in people with Alzheimer's disease. It describes the episodes of confusion, anxiety, agitation, or disorientation that often occur at dusk and into the evening hours. The episodes may last a few hours or throughout the night.
I just wanted to add, my husband seems to be a combination of a shadower and a lurker. At home he will stand in a door way, and just peak his head around it. He is content to just stare at me. When I am not aware of it, I look up and it scares the bajebbers out of me! LOL Where ever I go, he does too, and yes, even into the bathroom. I think it brings him comfort, so it doesn't truly bother me.
But, in public, like a store... is the worst. He refuses to walk beside me. I think again, he resents the need to be looked after. He walks about 10 to 15 paces behind me. I always check on him, and he tries to duck in an isle so I can't see him!! If I do "find" him, he gets so angry, saying things like I don't need you etc.
I haven't yet taken him out since he has been on the seroquel... so I am not sure if it will make a difference yet or not I sure hope so though! He is more loving again, so perhaps it will make a difference.
I didn't know there was a name for it. My DH likes to hide around a corner and peak out at me--like a little kid. He laughs and teases me. It was kind of funny the first couple of times but it's getting annoying now. However, I find that if I ignore it, he'll usually stop.
Also, I guess he's doing this sundowning. Along about 7 o'clock he starts to pace. He stares at the calendar and then ask what day it is. Or, he'll look right at the clock and ask what time it is. I have a white board on the frig and I mark down the day and date and anything going on for the day. Most of the time, that's helpful, but now he's asking why I do that. He'll get upset and accuse me of babying him. Seems like I can't please. That's not whining. That's just sort of an observation.
My husband isn't really shadowing me yet, but there is some of that following me around. I do get to go to the bathroom alone.
But the trailing 20 paces behind, and walking very, very slowly. That I am dealing with.
Both of these are very common.
The sundowning is something you need to talk to the doctor about. Believe it or not there is medication for that. It is also not only dangerous, it can kill the caregiver who isn't getting any sleep. The medication basically lets them calm down enough to sleep.
sounds like it. any new behaviour that comes around late pm can be related to Sundowning. i have even heard that full moon can cause different mode swings. i believe it too as do many. sometimes new meds need time to kick in before the depression gets better. divvi
Shadowing is the most frustrating part of AD. I turn around and he is there, not even 1 step behind me. I'm continually saying "Move". He gets angry, but what can I do? No matter how many times I've requested that he walk beside me, he continues this 1 pace behind. I feel like some dictator. Take care!
This does explain why he is far better in the early hours of the day, and temper shows more in the evening. We just returned from a Doc visit to request meds for mood swings. Since he has FTD he is limited in the drugs suitable for him, so we are starting slow and easy. His Doc is very good with both of us and is willing to work how ever we want. However, I got a serious "Poor you" feeling from him when he mentioned the exact disease. ):-(
I have also been concerned by DW walking directly behind me (I know this is the proper place for the wife in some cultures, but not ours). The only way I can get her to walk beside me is to hold her hand. I found an explanation for this in the article "Understanding the Dementia Experience" that has been mentioned often in other discussions. Apparently one problem with AD is that they develop tunnel vision (loss of peripheral vision), so if they are walking beside the spouse they cannot see him/her. Walking behind allows them to keep the spouse in sight at all times.
My DH was in to shadowing - big time. Now he doesn't have the energy. Funny that I might miss his being behind me all the time. We had to go to the store today and all he wanted was to find someplace to sit...when I looked at him I started to feel guilty about even bringing him there in the first place. I'm guessing that anyone who saw him was saying 'now there's a man on his last legs'. Still, how could I leave him home alone?
frand, They usually have the push wheel chairs also, but you may have to look or ask for them. At the malls, they are usually at the service desk. At stores like Lowes, Sam's, etc with different doors for exit and entrance, they may have landed at the exit door. At supermarkets and such they often have a shopping basket attached in the front.
There is also a "transport" chair-light weight, inexpensive wheel chair, inexpensive to purchase at Costco or Sam's.
Fran, I called my insurance approver to see if my DH qualified for a wheelchair and she said if the doctor ordered it, it would be covered. She said I could rent or purchase. I asked which was better for us in the long run, and she's researching it for me.
It might be time for you to get one for your DH that is lightweight and easy for you to lift. It sounds like you definitely need it now. When he gets better, you can store it until he needs it again.
Mary - storing is lots of fun in an RV! We needed to replace one tire, which means replacing two. They wanted to know if I'd like the good one - NO - where in the world would I put it? HOWEVER, I have already thought about getting a wheelchair in our car (I've had practice since my sister was cerebral palsied). Somehow I feel as if I am counting the days until we go to Hank's regular doctor in August. I already have the handicapped paperwork printed out for her to fill in...
I bought a peoples chair not a wheel chair weighs 29 lbs at walgreens resonable they also have wheel chairs resonable Go on the interent. My wife can't walk far so this push chair is excellent.
Fran, in answer to your question - the same way parents push their small children in one of those "car" things at the grocery store! LOL Just kidding! Could he hold a "basket" in his lap while you pushed him? If not, a friend of mine had a basket mounted on the back of her husband's wheelchair (it was one of those that "lifted" on the back of his truck - it was motorized) but I'm sure that they make one that would attach to the handle bars.
since i lost my aide lately i had the same question, how to push wchair and grocery cart? someone did suggest the Barnie cart.. i bet DH would ride in it..awww..guys, this is why its so important to have a few hrs respite time per week! i am calling a new agency now to get set up again...ugh.divvi
I remember when I broke my leg in 5 places, had two surgeries and was wheelchair bound for three months, my DH would take me to the grocery store and WalMart and bring a motorized wheelchair with basket to the car door and help me in it. I was thrilled to be able to shop for myself again, and thought it was the neatest thing! However, there isn't room for two to sit in it, and you can't steer standing, and I don't think my DH could handle it now. So this would not be an option for Fran either.
When my children were toddlers (I had three in three years - the 4th was 4 years later), I had a babysitter and went shopping alone! I now go shopping on my way home from work. It's easier for me. However, Fran is all alone and can't leave her DH, so that is not an option either.
I know that there are personal shoppers who will shop for you - you give them the list and they do the shopping and bring it to you. If the removable cloth bags to attach to the handles of the wheelchair aren't available, I am out of ideas.
Ok, Lynn shadows as well as lurks. The shadowing I can understand. The lurking, I can't figure out why he does it. The man keeps startling me! I look up and can see him standing behind a wall peeking in on me. I say Hi hun, and he tries to duck out of the room! It is sort of funny, but I can't figure it out WHY! doesn't he just come in the room and say hi? Any ideas?
I have seen some of the "push" wheelchairs @ Walmart recently with the baskets in the front for the groceries to go in...they are not too big, but are pretty deep...enough for a bit of a grocery trip anyway.
IMHO, (WAG) they have started to forget who you are.
Let me give you a scenario: you have just found yourself in a strange house. You know you can't get out, and there appears to be someone else in the house. You're not sure if they're friendly or not, so it seems best to keep quiet and unnoticeable. But at the same time, you need to find out what they're up to. (They might be planning something about you.) So what do you do?
You keep quiet, and you peek into the room where the stranger is. If they see you, get back. Remember, if you can't see them, they can't see you!
You know, it occurs to me that all the doctor visits are during the day (well, duh). We have got to find some way of getting the doctor to see them after 7:00 at night. I know that's when my stomach started to tighten up each evening, knowing what was in store for me for the next 8-10 hours. Not only that, most friends and relatives see them during the day, too. You put anyone in our shoes after 7:00 at night, and there'll be no "It's in your head, dear." I can guaran-dang-tee that.
Have any of you tried videotaping the behaviors? It would be proof that what you say is going on is really going on. I realize no one would want a record of what life is like, but it might be helpful for the doctor.
I know this phase will pass, but I don't think I am going to make it through it. If it was just shadowing I think I could take it, but the constant anxiety coupled with the incessant questions that I can't possibly understand leaves me about ready to ... I don't know what. I am unable to get much done as he does not want me doing anything, but none of the distractions I try work. If we are out , he wants to be in and visa versa. He can't seem be calm at all if I am not in his presence. He gets upset and angry if I leave him in the car with my son while I run in the store for 15 minutes, but then he freaks out if I take him with me almost like the stimuli is too much. I try many things that give him my individual attention, but that does not work either. I know that he is frightened, but I am frightened that I can't take this much longer. I have a 12 year old son at home, so life must continue. I just don't know how we will manage once school and homework begins.
DH also trails along behind me. I'll be walking along talking away and he's gone. I feel kind of foolish. If I hold his hand, he stays right with me. That's ok on the street, but in the store it seems kind of funny.
Also, I was told one time the reason the energy and cognition seems better in the a.m. is because the oxygen to the brain is higher. The brain get less in the p.m. Don't know if that's true or not. Sounds reasonable.
Also, the other day we were at the nursery getting some plants. We'd only been there a few minutes when he said he was going out to the car and wait for me. Said he was too tired to stand around. When I got my purchases and went to the car he was asleep in the front seat. It was only about 11:30 in the morning. Does that sound reasonable?
Every time your Dear one shadows or asks questions incessantly, just stop and say to yourself, " thank God, he/she can still walk, talk, and communicate"! I would give anything to hear my sweetheart say anything comprehensible, or hear him repeat himself, or have him follow me (he is now in a wheelchair) I too had times of exasperation when my husband was at this stage but I am now so sorry I didn't live each day fully enjoying him. I say this with love wanting you to not have regrets and to know you lived each day as fully as possible before your spouse leaves you completely.
Mawzy, I think it is amazing that he found the car. I'd be scared stiff that he wouldn't be able to find it.
At this point if we go out and do stuff, I'll find my husband cat napping a little while after we get home. So yes, if it was beyond his energy levels it sounds reasonable. And their energy levels can be pretty low.
By the way, that cat napper is the guy who takes the 2 hour walks.
He doesn't do classic shadowing, but he was just in here checking out what I was up to, or just that I'm in the house. And the Hungarian Grand Prix is on TV right now. He was always a Grand Prix nut and has a love of Nascar these days too. And the Hungarian one, mind you. He was born in Hungary and always wanted to go to that one. Another one of those things we didn't quite manage in time. ...[sigh]...
Carewife, I'm going to keep repeating that to myself (did I just say that? LOL) Seriously, I want to remember what you just said so I will have more patience.
Trisinger that playout scenario is pretty good one and makes sense about as much as anything else. the shadowing period drove me to the brink. would turn around and literally run into him standing 6in from me. i saw him peeking around the wall at me many times, and its true you call to them and they back off:) i cant imagine what may be going thru the mind at that point but i dont want to live it myself. funny story about lagging behind-i was on the airplane getting out of the isle and standing there with DH in tow, i reached behind and grabbed his hand and accidently brushed his 'privates' said excuse me without looking back. pulling him along the isle towards the front of the plane, he stopped i turned and looked and i had a complete strange man in tow:::))))) and he was smiling:::))) i gasped and my poor DH was 3 person back and looking quite desperate. no need to explain how i felt:) after that i always had DH by his hand. divvi
I don't mind the shadowing. It has never bothered me as it does some folks. But the lurking, yeah that troubles me. trisingers reply is the only thing so far that has made sense. Except he seems to knows who I am though. After he has tried to duck and hide after I spot him, if I call out to him or come out to see him he is always alert and aware of who I am. So I keep wondering why he doesn't just come in and say hi! It freaks my sister out. She says I walk into the kitchen and there he is peeking around the corner staring at you.
Carewife, Thank you for the encouragement. I thought of that because I remember some behavior before that was driving me crazy and now I wish I had been thankful for what he could do and how he was feeling then. The shadowing is fine but I feel bad for him as he is so nervous and that in turn makes me stressed because I do not know what to do to help him. Any practical ideas would help. He likes to take walks, but 95 degrees is too hot. He likes to take a drive, but can't do that all day! We do both things, but there is a limit of how many times we can drive around in the car. Thank goodness I have a fuel efficient car. He used to love Nascar but TV doesn't hold his attention so much anymore. It probably doesn't make as much sense to him anymore. He is tired alot, but will not sleep during the day even if I lay with him. Maybe too nervous too relax to sleep. He does sleep well at night though. Never had any hobbies. I would appreciate some ideas from anyone. Thanks, Karen
I just reread all of this. Somehow I thought I was the only one with a husband that followed me in the stores. It seemed embarassing. That is no longer a problem - at this point he can't even go in to the stores and the tiny walks we take he has to have my help to keep his balance. carewife - I just can't feel guilty on top of everything else that those shadowing times got too me. I think we all do the best we can, and losing it from time to time just happens.
Mawzy, what's wrong with holding hands with your love, even in a store? Most people would think it's sweet. They don't have to know you're doing that instead of putting a leash on him ... :-)
Alice, my husband and I walk in the very early morning or late afternoon, to avoid the worst of the heat. (Also to avoid sun, since he's having trouble with skin cancer.) My father used to take my mother walking in air-conditioned shopping malls, to avoid the Iowa summer heat. I've heard that there are even exercise groups who go mall-walking in areas where the weather makes it hard to walk outdoors.
I just noticed that your account was created a week ago. Did I miss welcoming you to my website? If I did, I apologize. If you have been reading the blogs, you know I've been a bit emotionally overwhelmed lately. Anyway, welcome. You are in the one place where spouses can discuss their "unique" issues that no one else understands. I hope you have had a chance to look over the home page - www.thealzheimerspouse.com - and all of the resources it offers.
It sounds to me like your husband could use a few days of Day Care. When looking for a Day Care, you must be absolutely sure that it specializes in Alzheimer patients. They are not "baby sitting" factories. They have trained staff who know how to handle all Alzheimer behaviors and keep the patients busy with activities they enjoy. And it will give you a little respite from the stress of trying to figure out how to keep him entertained.
Joan, Thanks for the welcome. Love the website and certainly understand what you are going through. I am beginning to think my DH is ready for Day Care. I know he will probably object, but need to check into it soon. Hopefully it will do him some good as well. I haven't even called the Alz. Assoc. yet or checked into support groups since I felt EOAD would be hard to find a match for, but I won't know unless I try. So I will. Thanks, Alice
Let me know how the daycare goes! If I find another job, then I'm going to have to send my husband to daycare, too. And I imagine he'll be fairly cooperative, bless him, but I don't think he'll be happy with me... Sometimes, I think having him act up would be easier on my conscience!
And let us all know if there's anything we can do for you...
Divvi, I hope no one was drinking coffee when they read your story! I loved it! I'm glad I'm not the only one who goofs!
Trisinger, that was an excellent explanation for shadowing! My husband still "checks" on me if I am out of the room more than 5 minutes, and if I go outside, he's coming with me! For the most part when I go outside, I just grin and hand him a broom and he'll sweep the driveway, whether it needs it or not, and I can get my flowers watered.
Is there another name, or more technical name for lurking? I have been trying to look it up and have had no success. I find AD and shadowing, but no AD and lurking.
I'd bet ya if DH didn't shadow me so badly my Son, his wife and his MIL, together or seperately might have found a way to talk to me about their (dis)comfort level having my granddaughter around us. They have only heard the things I say over the past few years. Still, they were anxious to be moving near us this summer. Now that they are here .............. well ..............they're not here.