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 Wandering - Some advice please 
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Joined: Mon Mar 01, 2010 5:33 pm
Posts: 7
Post Re: Wandering - Some advice please
Thanks for all your comments. I did go to the ALZ store and I bought a key pad alarm for our two exit doors. Problem is I'm not sure they are going to work. The magnet and keypad need to be level with each other and the frame around the doors is higher. I will see if I can adjust it somehow. What I liked about it was that I did not have to worry about having a key all the time.

I have another question from a few of your comments. At what point was you LO not able to walk anymore? My husband takes just small shuffling steps and is sometimes very shaky on his feet. I wonder how long it will be before he is no longer able to walk. The problem I have with that is that our bedrooms are on the second floor. (eeeek!)


Sat Jan 01, 2011 9:51 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Wandering - Some advice please
When someone becomes bed-bound or wheelchair-bound is hard to predict. I don't think there have been any good clinical histories of large numbers of pathologically-confirmed LBD cases.

Many find that moving into a single-level home works best...and it's better to make this move earlier rather than later. And many end up moving a bed into a room on the ground floor.


Sat Jan 01, 2011 11:04 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Wandering - Some advice please
Dale began Lewy with delusions and hallucinations in February 2009. He is just now at the stage when walking is a big problem. Somewhere I learned to count (actually I have him do the counting) and he will move his feet with the count. (If I do the counting, he complains that I count too fast.)

He can climb a few steps hanging on to a bannister but I would not want a house with a second floor - unless I bought a seat that goes to the top. My cousin used one of those on their staircase for 18 years.

However, ... and this is strange..., Dale will occasionally decide to walk somewhere without his walker and have no problem (except when I notice him and scream.....) This afternoon, he fell. He was trying to walk without his walker and got dizzy.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sat Jan 01, 2011 11:11 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Wandering - Some advice please
Sunny, Have you looked at the "outside/entrance side" of the doors. That is where I put the magnets, that's usually flat. If they have a battery, be sure you are able to remove the covers to get at the battery, I found that out the hard way. Good luck!

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sun Jan 02, 2011 8:29 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Wandering - Some advice please
My dad shuffled for about 20 years because he needed a hip replacement, which he had done about 6 years before he died. He still shuffled after the surgery and this was before we knew anything about PD or LBD. His shuffling got worse and worse and about 3 years ago he started with the "stuck feet" thing. 2 year ago he started falling and wasn't able to get up by himself. 18 mo. ago his legs just about totally stopped working for walking. 12 mo. ago he was no longer able to hold his own weight for transfers, move his feet when people tried to get him into a vehicle, etc. His legs went between being very flacid and week, to frozen like steel in a bent position. He became totally dependent on a wheelchair then and required 2 - 3 CGs at all times for transfers, turning him in bed, etc.

This is probably another one of those things that's very individual in terms of timing, but observationally, it seems like it's in later stages when other things are happening that they can't walk at all. And as I'm sure you're aware, falls are a big deal the older you get. He went to the ER probably 6 times in 2009 because of falling and hitting his head. His bone scan showed he had incredibly dense bones, but that is probably an exception for an 89 year old. Nothing broken but his pride was hurt. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun Jan 02, 2011 9:55 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Wandering - Some advice please
Sunny, we had a security alarm system on the house long before my husband got LBD. I started leaving in on during the day, which meant I had to remember to disarm it first each time I needed to open a door, but at least I would know if Coy was leaving the house. Sounds like a good solution, right? One morning he packed a little yellow gym bag, put some highway maps in it, and said he was leaving. I told him I would be very sad if he left. I asked him where he was going and how he was going to get there and what he would do when his money ($7.35) ran out. Neither my appeals nor practical considerations deterred him. He was determined to leave. As he stood at the door I said, "The alarm is on. If you open the door it will ring at the security place and they will send the police." He said. "I don't care who they send. You deal with it. I'll be gone." And out he went.

Oh dear. Oh my. I don't remember any advice for this kind of situation in dementia caregiver guides I'd come across. What now? I shut off the alarm (which I wouldn't do if I had it to do over) and caught up with him a half a block down the street. Again I tried to plead and reason with him, and again he resisted and became agitated. He threatened me and I believed he would carry out the threats. He was then very strong and overpowering him would be iffy. Finally I said, "I am standing here in my nightgown. I don't know what the neighbors are thinking, but I am going home." (I planned to call the police.) To my amazement he said, "Oh. I guess I'll come with you." And he did. I don't know whether that particular storm in his brain had played itself out or whether the thought of his wife in full public view in her nightgown got to him, but he came home and unpacked his little yellow bag and that was the end of his running away efforts.

So door alarms of any kind don't stop the running-away-with-little-yellow-bag syndrome, but they are very useful in alerting you when the door opens, and that is probably sufficient for usual wandering. We also used a motion detector from the ALZ store, in the bedroom, and a baby monitor. Those helped me keep track of what was going on in the bedroom no matter where I was in the house.

When Coy had to be in a transitional care unit after hospitalization for a bleeding ulcer, he was in the memory unit. I noticed that the doors leaving the floor had knobs high up. Still within easy reach but not in the usual place. I understand this would discourage AD paitents. But my husband and his roommate did not have AD, and an unusually placed door knob would have been no deterrent to either one of them. Coy was not wandering by then, and a family member was usually there, so I wasn't worried about it, but I did cross that place off my list for future consideration.

I hope you find the right combination of devices to keep your LO safe in this regard. Good luck!

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Jan 02, 2011 4:14 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Wandering - Some advice please
You are absolutely right, Jeanne. We've had several times when Dale has been determined to leave on some trip only he has planned. One was a trip to San Francisco in the middle of the night. He actually pulled me outside in the wee hours of the morning because he had the tickets and we were late.

In another episode, he decided that he was one of the coaches of the Denver broncos and he was packing a bag. Just a few days ago, he tried to leave through the garage to fly to Portland. He was determined to see some childhood friends.

In each of these times, I have felt utter panic. I try to talk softly so as to get him talked out of the delusion but every one is different and the same methods don't give the same result. I don't know what the answer is. It is without doubt the one thing that I find the most difficult about this disease.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sun Jan 02, 2011 11:58 pm
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Joined: Tue Jun 22, 2010 4:17 pm
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Location: Connecticut
Post Re: Wandering - Some advice please
For inside doors I had the doorknobs reversed. That way I aould lock the door from the inside, keeping a key nearby and hidden.
The door could be opened easily from the outside just by the usual turning of the locking device. I've only used this in the bedroom to prevent my husband from wandering at night and becoming lost in another room, but I would think it would work anywhere throughout the house. Now, although I still am locking the door at night, it is hardly necessary, because walking has become, progressively, more and more difficult for him. Just incidentally; because of the possibility of falling, which has happened a number of times, I've taken a sheepskin sherpa bed covering, cut it up into strips, and nailed the strips to the corners of the walls so that a fall will not do as much damage if his head hits the wall corner. Life is surely a series of adjustments.....
Marcia


Tue Jan 04, 2011 2:37 pm
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
Post Re: Wandering - Some advice please
Frank will wander aimlessly around the house pushing furniture around moving the things on tables or counters to other rooms and getting coats out of the closet and putting them anywhere. At least 6-8 times a day he'll go out in the driveway and check the doors on the car and truck, I always keep them locked, but out he goes again and again to check. How would you discribe this? It's not hallucinations, delusions, or paranoia, he had and has them all, but what would this be? I need a word(s) to discribe him to his Dr.
Thanks, Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sat Mar 26, 2011 4:32 pm
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Joined: Mon Feb 21, 2011 9:55 pm
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Post Re: Wandering - Some advice please
Gerry, I am not an expert, but would you call it something akin to obsessive/compulsive behaviour. Just a thought.

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cared for Dad who passed away on January 28th 2013 R.I.P.


Sat Mar 26, 2011 5:02 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Wandering - Some advice please
My first thought was obsession but I looked both up and I guess either one could be used


Obsessive–compulsive disorder (OCD) is an anxiety disorder characterized by intrusive thoughts that produce uneasiness, apprehension, fear, or worry, ...


Paranoia is a thought process believed to be heavily influenced by anxiety or fear, often to the point of irrationality and delusion. ...

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Irene Selak


Sat Mar 26, 2011 5:45 pm
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
Post Re: Wandering - Some advice please
Ger & Irene, Thank you, his behavior is puzzeling and tiring, but tomorrow it could all be different.

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sat Mar 26, 2011 9:21 pm
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Joined: Fri Jun 05, 2009 4:15 pm
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Location: Onsted MI
Post Re: Wandering - Some advice please
We have a 2 story house and our bedroom is on the second level. There was a time when Wayne was not able to make the stairs so we just kept him in our bedroom. It is a large bedroom and we have a table he can eat at that I put him up to in his wheelchair. We have TV and computer there too (he cant use the computer but I play music on it and use it myself when I am there.) I have a baby monitor on when I am down stairs so I can sorta tell what he is doing. He is getting better at "doing" the stairs and usually we(my daughter and I)can get him down for supper. However, in the future when he can't walk - I don't know why I can't just keep him in the bedroom.

I am glad he doesn't wander too much...the other day we had some warm weather I took him outside when I was picking up some broken limbs from the big ice storm....he took off through a couple neighbor's yards. I called to him and started after him and he just went faster - I was really afraid he would fall but I finally did catch him and took his hand and lead him to the street and walked him home. Whew, never a dull moment. :roll:


Sun Mar 27, 2011 10:32 pm
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
Post Re: Wandering - Some advice please
I can't wait for the nice weather, I do enjoy working outside but having to keep track of Frank is a bit of a challenge. It takes about 4 hours to mow and I'm thinking I might need to do it on the day the caregiver comes. I have a choice of paying the caregiver or hiring someone to cut the grass, I think it would be cheaper to have the grass cut, we'll see, that's still 2-3 months away.
Have a good day, Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Mon Mar 28, 2011 7:49 am
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Wandering - Some advice please
Gerry, if you do it while the caregiver is there, you have actually given up your respite time. That isn't a good thing. You need respite time to stay sane.

Don't know if this will work for you, but I mow our yard...much smaller than yours, but I take Del out on the deck and I can watch him while I mow. He gets a little air and sunshine and I get the yard done. And maybe you will have to section it up...one part one day and another part another day. That works for me, too.

Do NOT give up your respite time. Smiles, Nan


Mon Mar 28, 2011 12:00 pm
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