Making rooms off-limits
Many people recommend making rooms safe for PWD and locking of hiding things away.
and in some cases preventing PWD's from going into unused rooms for preventing rummaging or doing dangerous things. This includes locking rooms, or putting up signs.
I wonder how far one can go in making rooms off-limits - don't go into kitchen, garage, another room where I keep medications. Some people call them "Safe Zones" or "Respite Areas"
If taken to the extreme, I think it's distressing and mean-spirited, especially if it is the PWD's own home where one resided for many years, and perhaps makes the home seem like a memory care facility. It's not nice to be limited to only a bathroom, bedroom, and where one eats or watches TV, for example.
However, if you take a kitchen and hide so many things (knives, etc.), remove oven/range knobs, etc. the room becomes very hard to use. Putting signs in kitchen areas are often ignored, or the signs are torn off by PWD. But making a kitchen off limits is also distressing.
So the alternative is to dementia-proof almost every space.
Anyone want to share experiences?
Comments
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@dancsfo said: "I wonder how far one can go in making rooms off-limits - don't go into kitchen, garage, another room where I keep medications. Some people call them "Safe Zones" or "Respite Areas"."
I suppose this is going to be very individualized not only for every home, PWD and caregiver, but it's going to be a moving target based on how a PWD's behaviors evolve as the disease progresses.
I feel safety trumps everything else. When you are caregiver it is your responsibility to protect your PWD from potentially dangerous situations. Full stop.
Every home is different. Some open-concept designs are limited in what needs to be secured. Basements and second stories can present the danger of falls for PWD whose spatial reasoning is poor. Garages not only often have items that could harm a PWD. My friend's mom went opened the garage door and missed a step down breaking her clavicle in the process. Dad knocked himself against a wall in the garage trying to jump a car's battery in the middle stages while mom had a shower. Another poster here had a DH who went into the garage and doused himself with gasoline.
There's an additional risk of extreme heat or cold if the PWD finds themselves unable to get back into the house. Dad once got locked in his garage in August in the middle stages while mom ran out to pick up some milk and a prescription. Additional exits from the home can be a problem. My friend's mom slipped out an open door and disappeared for a time.
Different PWD are going to present differently. Dad was never going to touch a stove, but his suspicious nature meant constant rummaging and hiding of things. No caregiver needs the stress of tearing a house apart looking for a photo ID ahead of an appointment that took months to get because a PWD felt it needed to be put away somewhere they deemed safe. My friend's mom was also safe in the kitchen and showed no interest in it as a place to go in the middle and late stages, but my friend locked down the entire second floor, her husband's first floor office and the powder room to provide respite for the cats mom insisted on "disciplining". Mom had a 3-room in-law suite with an adapted bathroom plus access to FR and kitchen.
I feel it's important to consider the caregiver. IMO, any tactic to support and lessen the work of dementia-caregiving is going to result in less resentment and exhaustion which will result in better care. Many caregiving spouses are older themselves and likely have chronic health conditions that make the physical aspects of caregiving a challenge. At 80, my mom just didn't have the energy to clean up rooms that weren't otherwise being used. Often adult caregiver children have their own careers, households and families to care for as well as their PWD and don't have the bandwidth to allow the level of freedom you describe.
"If taken to the extreme, I think it's distressing and mean-spirited, especially if it is the PWD's own home where one resided for many years, and perhaps makes the home seem like a memory care facility. It's not nice to be limited to only a bathroom, bedroom, and where one eats or watches TV, for example."
TBH, aside from my basement laundry, those are pretty much the only places I use in my house. I don't think I've been in my son's room in years. The sad thing is that, over time, any home in which a PWD lives is going to take on many aspects of a MCF. Many people who have made it a goal to keep their LO "at home" find it can feel like living in a "one-bed nursing home". I know when my friend's mom died, she and her husband couldn't wait to sell their home for this very reason. When my MIL died, my BIL and his wife completely gutted the bedroom which was hers to create and entirely new and unrecognizable space.
Another sad thing is that at a certain point, many PWD no longer recognize their homes as such and will beg their caregivers to "take them home" while standing in it. "Home" becomes more of a feeling of ease and safety than a place for many.
However, if you take a kitchen and hide so many things (knives, etc.), remove oven/range knobs, etc. the room becomes very hard to use. Putting signs in kitchen areas are often ignored, or the signs are torn off by PWD. But making a kitchen off limits is also distressing.
This is true, but in many homes, there is no safe alternative.
HB
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Thank you for the detailed answer, and as you said, it does differ for each situation (such as the stage), and safety matters a lot. It also seems like a journey of adjustments. It's not like you set it up, rearrange it, and you're done. Instead, one has to add/remove, shift things around all the time. (but also, not too often, as there's a lot to be said about being familiar with where things are)
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The PWD no longer functions as before, despite probably looking the same. This is because they have anosognosia and are not aware that their brains are functioning poorly and they are unaware of being able to keep themselves safe.
This is also because they develop agnosia, and don't recognize things, including where the bathroom is in their own home, or that clear liquid bleach is not a beverage. Having boundaries that the PWD can safely maneuver is comforting to the PWD.
Iris
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I
I see. I still have a hard time being in a PWD's mindset. I often simply treated it as a failure to form new memories, but of course, one may eventually have a hard time with even familiar places or things. (And I do remember reading about that condition in dementia books, which I had forgotten!). So in some sense, I can comfort a PWD with a limited set of surroundings or furnishings, perhaps by staying away froms some places or things.
I think it's similar to children, who may be scared to venture to new places (and meet new people), but later on will be comfortable discovering new places and will look forward to adventures. But with a PWD, it goes in the reverse direction.
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Overall, these lapses might fall into the category of loss of executive function, which is loss of the ability to figure things out and to make connections about things.
Yes, this is the opposite of how children develop, because every day they are learning more and more about how their world works, and about how they can maneuver safely within their world. Children test their boundaries, but as adults, we automatically know where to set a child's limits.
With a PWD, they may look and even sound the same, but they are lacking capacity. And the capacity diminishes over time, so what may be safe today may not be safe next week. Or in a different environment, such as a hotel room or a hospital room or if they have a UTI. Fortunately and unfortunately, we can learn from the misfortunes of other members who have had safety lapses and bad experiences.
At the same time, it"s best not to tell them that they aren't safe or that they don't know what they're doing, because this will cause backlash and arguing. This is where work-arounds come in. The members are very experienced on work-arounds.
Iris
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Regarding: At the same time, it"s best not to tell them that they aren't safe or that they don't know what they're doing, because this will cause backlash and arguing. This is where work-arounds come in. The members are very experienced on work-arounds.Thank you! I'm learning something new!
I still tell them that things are not safe when they try to do something dangerous. Or when PWD is opening and closing many drawers or cabinet doors, looking for something, I ask them "What are you looking for?" My work around has been (but it doesn't always work):
1) try to recognize something dangerous before it happens and do it for them or
2) ask if they need help (i.e. to help them find something / rummaging)
But like you said, it's often too late and I get backlash: "Leave me alone! I know what I'm doing." or more interestingly: "I need to do these things myself so I keep my mind sharp"
But moments later, PWD can
1) drop something they can't hold like a heavy bowl or pot or
2) perhaps gets frustrated by not finding something (i.e. milk is not in the cupboard, but it is in the fridge)
So perhaps a better workaround is to structure activities so that I distract them to do something safe (lay down the place mats), while I do the potentially dangerous things.
By the time they try to make the hot tea, which is dangerous, and it can turn into many problems (scalding burns) or I get a backlash or into an argument.
So I can try to just prepare things ahead of time in a fixed routine, whether PWD wants it or not. Maybe it makes things predictable for everyone.
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@dancsfo said: (but also, not too often, as there's a lot to be said about being familiar with where things are)
Familiar structure and routine can be useful in helping a PWD function at their best. But for some, progression can cause a PWD to become disoriented to time and place meaning that they don't recognize where they are as "home". This might mean they're unable to find the toilet or might mistake the guest room for their room and tear it apart in frustration looking for their things.
Dad disorientation to time and place looked a lot like he was time traveling. His reality was not real reality. As newer memories faded, we found him talking a lot about former coworkers, long-dead relatives, and even asking mom to pick up those dreadful polyester 1970s era plaid pants he favored from the cleaners.
A couple months later, he was living in the early 1960s while mom and I were hanging artwork in their new home near me. I hung an impressionist style oil of women in a park he liked, and he asked me where "his other one- the dancing girls- was". I said there was no such painting. I went through the pictures again thinking perhaps he'd bought something I didn't know about but came up empty-handed. He accused me of stealing it. Mom had no idea what he was talking about. He was so adamant about it I knew it had to be a conflated memory with some truth in there when it dawned on me that he was describing a Degas exhibition poster that had served as decor in their very first apartment when they were young and broke. I found it in the background of a picture of me at Christmas when I was 3. Familiar to him was something he happily disposed of when he bought his first house in 1961.
HB
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@dancsfo this is one of those topics where we say "its not something you're doing TO your LO, it is something you do FOR them". Understanding dementia means not applying our reality to their new normal (which is not reality as we know it), and it means not projecting our feelings onto someone whose brain is damaged and disappearing.
For example, my DH almost drank a full mug of mouthwash way back in late Stage 4 or early 5. May not have killed him but likely would have made him very ill, and it could have been a colorful cleaning product, hidden under the sink with the mouthwash but obviously not hidden well enough. The cortisone cream and hair removal product tubes look just like the toothpaste tube, so when our neuropsych said I needed to watch him at all times, they meant it.
Without disappearing the car, knives, locking door to basement and garage, hiding any valuable or important papers or possessions, taking the knobs off the oven I would have been negligent and actually just asking for serious trouble. Not simplyfing and dementia-proofing can be devastating and it is up to us to be proactive before a crisis occurs.
At one point I was regularly turning off the water at the toilet after each use once he began flushing banana peels, full paper towel rolls, etc (and backing up plumbing costing hundreds of dollars of expense). And his dressing, undressing, redressing phase caused me to finally hide the closet door and stash many of the clothes away. His dangerous wandering was slowed in part by my learning to hide his shoes (every single pair and boots, and my own shoes) or risk waking up to find he wasn't there.
I'm sorry you are having to go through this, and that your LO must as well. But it isn't you that is narrowing their world, dementia is doing it and you are just trying to be a wise, loving, and responsible helper to make it less stressful, less triggering, and more safe as their brain declines.
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@harshedbuzz Thank you for the info on your Dad's time travel to the 1960's and 1970's. A part of me is amazed that something as detailed as a Degas poster from 1960s is remembered, but also scared that these things can happen, and intrude into daily life due to the deterioration of executive function.
@ButterflyWings "doing TO your LO, it is something you do FOR them" is a good way of thinking. It's all done to avert a disaster before it occurs. I've done some things, and I need to do more. While there is some initial arguing when I "take away" things (where are my medicine refills?), it isn't a problem once you're accustomed to it.
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Oh yeah, I forgot to add the "don't ask, don't tell" motto that was key in our situation. And also fiblets. Truth is relative, and the best answer is the one that gives the most comfort. Learned that from the experts here.
When DH's car finally disappeared, I was the most helpful person in the world trying to get to the bottom of it for him. I volunteered to call the police for him since he wanted to report it stolen right away. And...where are those med refills?. Blank look. Crickets. Then omg, I will help you find them. Etc., etc.
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Here is a link to various safety tips from Alz Assoc. Have you seen this yet? It lists several things to address and states this will allow PWDs to maintain their independence longer. See how we have to shift our thinking?
Worrying that applying these safety best practices is limiting your LO is understandable because you are still thinking about your fully functioning, adult, spouse or partner. Dementia is stealing their capacity although they may look exactly the same. So, we learn all we can and take action early since "better safe than sorry".
And remember, you can't reason with someone whose reasoner is broken, so asking permission, letting them see you removing keys or IDs, bank cards or other important papers is not wise. I think it actually is unkind. And it can really, really backfire and cause your LO to lose all trust just when you really need them to rely on you more and more. So, "don't ask, don't tell". It feels wrong at first, believe me I know. But my DH escalated so fast I got the message right away. Listen to the wisdom on these boards. The experience here will not steer you wrong.
*Edited to add the link =)
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@ButterflyWings Thanks for the pointers. I've seen the safety document, but I will review it, given changes in reasoner ability. The "don't ask, don't tell" suggestion is very good. I've been doing that a bit more, and it helps.
I really do appreciate the wisdom and experience of those on these boards. Referring to actual experiences really brings these issues to life.
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Signs and locking things up are for different places in the journey. If a person can still read, understand, and follow signage, then very little needs to be locked up. If they're rummaging in the kitchen, you might child-lock cupboards and drawers with sharps and breakables, while leaving some spaces they have access to. Then if they try to open the locked one, you can say, "oh, that one's broken, so your stuff is here," and show the accessible drawer/cupboard.
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I don't know if it was his anosognosia or just stubbornness, or maybe even a level of mis-comprehension. But my DH could still read but would not heed. So, signs and my written cautions or instructions were not a deterrent to things going missing, defaced, or otherwise mis-used. I had to disappear or lock them up.
Its funny, but even now he can manage to get out the phrase, "I hear you" with the clear intonation that communicates "Yeah, OK. I heard what you said, and I don't agree". So, out of sight, out of mind has been a lifesaver.
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That's interesting. If you are one who believes in a regression theory of dementia, it makes sense that he can still muster the intonation of "yeah, no" effectively. My niece's could deliver a devastating put-down by age 3.
Reading, on the other hand is a lot more complex. Most kids aren't putting the skills needed to be a competent reader until closer to 6-8. I've mentioned my son with ASD in the context of similarities to dementia. DS was really an alphabet soup kid-- ASD, GAD, ADHD and SLD (specific learning disability-- dyslexia/dyscalculia). Sorting out the reading piece was eye-opening as there are a number of skills that need to come together to make someone a successful reader. At DS's therapeutic reading school, they did all kinds of testing to get to what it was that was interfering with a student's mastery of the skill. DS's issues were pretty mundane phonemic awareness glitches that responded well to Orton-Gillingham. But there were a few kids is his class who were hyperlexic-- these kids could decode and read aloud well beyond their age group but didn't really understand what the words meant. And yet, you'd never guess this from conversations with these chatty little guys.
With my dad, I noticed that he kind of could read words in books, magazines and street signs (this used to rattle me when I was driving) but as time passed they had no real meaning in terms of context. The onset was subtle. He'd been a voracious reader and we often sent books as gifts. If DH (who reads even more) came across a title dad would previously liked, he'd send it on or gift it and over time dad would say "he couldn't get into it". He'd get new titles from his favorite authors and then complain "their new books aren't as good as their previous work". Eventually he was re-reading the books he claimed were "better" and complained that they weren't "as good as I remember".
Mom tried the white board. It was a big fat fail. Dad didn't remember to look at it. If you prompted him to, he got irritated you just didn't tell him the information. If you told him the information, he got angry you were treating him like and idiot or bossing him around. Team "Out of Sight" for life.
HB
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I've worked in memory care off and on over the years. There are some that have to have their closets locked and minimal items in their dresser drawers because things go missing. Also have to lock some vanities in bathrooms due to rummaging and trying to eat toothpaste or drink mouthwash. Sometimes they will also go in other peoples rooms too and all vanities are locked through the unit. It just depends on the person. If someone is there often with a L/O then I'd lock only the most dangerous stuff like things they can ingest when you might not be looking. Otherwise, it's for their safety to lock up or even hide things sometimes.
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Thanks for sharing your experience. I agree it depends on the person.
Like you wrote, I found that rummaging can lead to safety problems. I can deal with rummaging in the silverware drawer, and having things put back in the wrong place. These are mild, daily issues.
But PWD rummages through pantry or kitchen, and there's a desire to not want a container partially empty, like a canister of flour or salt shaker, and to refill it (maybe trying to be helpful)
PWD will proceed to refill it, but often with something else. I'm lucky if it's salt in the sugar container. But I'm concerned that it may be some other light colored powder, like cleanser or borax, so I want to hide those.
Rummaging was explained to me by PWD as "because I want to know what's there and I forgot what was there". I tried putting labels, but they were torn off, so I gave up on the idea.
PWD wants to rummage through many drawers or shelves, if the the contents were forgotten. I can tell when it's happening when I hear drawers and doors closed shut, one after another. So sometimes, the "out of sight, out of mind" method sometimes fails, because PWD knows it is somewhere, will rummage, looking for it. At other times, hiding something totally unknown or forgotten works well.
I'm following ideas in this rummaging document, and will adjust as needed. Some ideas, like a "STOP" sign has failed for me so far. Maybe it will work in the future.
https://www.alz.org/media/greatermissouri/rummaging_hiding_and_hoarding_behaviors.pdf
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Our worst was furniture polish in the dish soap dispenser. But i also had lots of smeary windows that were wiped with Greased Lightning instead of Windex...took a long while to get that off. I wax at the point of having to put a keypad lock on my bedroom door when she was hospitalized and went to memory care, could not keep her out of my things and papers.
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That must have been annoying but also fortunate that it was "just" the windows and the soap dispenser. I try to buy things in different colors, scents, shape of containers and labels to help distinguish them, but I think that is just a temporary solution at best as cognition gets impaired further.
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@dancsfo be careful please. We can't reason with dementia or a PWD whose reasoner is broken. The pretty colors can look like tasty beverages which can kill your LO if ingested. Or at minimum, make them very, very sick.
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I agree. I will hide items the best I can, or prevent entry to some rooms.
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