Making rooms off-limits

@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

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

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

@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

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 =)

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.

@ButterflyWings

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