I work in nursing in a locked dementia unit caring for people with severe alzheimers and other forms of dementia. AmA!

My mom passed away from a physical condition. She didn't have dementia but my dad did. When she passed, we (siblings) agreed to not tell him she was gone. He did not attend the funeral. Our thinking was that it would be cruel to tell him and then have him to tell him all over again a day later that his wife had died. When he would ask where she was, we told him she was sleeping. That seemed to be enough explanation to satisfy him. Are you ever faced with this scenario and how do you usually handle it?

All the time. In that situation we usually ask the family what they would like us to tell them. Sometimes we tell them their husband/son/wife/daughter is at work, staying with so and so for the weekend, ect. And sometimes the family will say for us to tell them the truth. You have to be delicate with your choice of words when doing that. It's not easy.

whats the best way to fight the "i want to go home im not supposed to be here" routine? we try and redirect, is that all there is to do? its just like every 10 minutes or so. its destroying me

That's always a challenge. Gotta find something that they enjoy and make it available to them? Doesn't always work. This is a matter of knowing your resident. And again, everyone is different. There was a good suggestion below me though, with the bus stop.

Are you aware of the deep thanks I have for you and your kind? (Sorry, AMA, has to be a question.) Both my grandparents had dementia, one with Alzheimer's, one with bi-polar disorder. Their nurses and caregivers were incredibly patient and took very good care of them in their final years when my parents could no longer manage. So thanks!

It is a thankless job so it means so much to me to hear that. I am often dealing with angry family members but I have to know not to take it personally. Their loved one is usually no wheres close to being who they used to be. Both physically and mentally. So a lot of the time I know tge anger is really just the stress and frustration of having a loved one go through that. And often times we feel a sense of shame and guilt when we put a loved one in a facility rather than keeping them at home and that can come out as anger. If you ever have to put a loved one in a facility, shop around. Find a facility that you're comfortable with and one that is appropriate for their needs. If they need a nursing home, don't go to an ALF. And of they only need and ALF, do not go to a nursing home. But remember, there is going to be an adjustment period for both you and your loved one.

Do you tell patients the same joke heaps?

Yes! Not all of them, though. Some of them their dementia is more of a behavioral thing and their memory is still somewhat there. At least to the point that they would know if I did that. But others don't remember what happened 30 seconds ago and will crack up at the same joke over and over again.

Do you have a tailored list of jokes for patients that you know will work 100%?

On one woman, whenever she says shes hungry I tell her I'm so hungry I can eat a horse. She dies laughing each time. But you got jokes I'll try them out!

What's the age of your youngest patient?

50s I think. "presenile dementia"

My Grandmother was diagnosed with Alzheimer's a couple months ago and actually died 1 month after the diagnosis. We were shocked as she had been able to live by herself and function properly for years. Is it true that a lot of people are able to sort of "hide" their conditions? I was just wondering because she had gone downhill so quickly without any symptoms until the end.

Yes. In the beginning stages of the illness it is often hidden. Mostly because the individual doesn't understand what is happening to them as it is happening. One of the very first signs is they lose their sense of smell. So if BettyJean next door suddenly starts burning the cookies each time she bakes, tell her she might want to go pay a visit to her doctor. And to how quickly it can effect someone is almist always different. But from what I've seen, once they hit a certain point, it happens quickly. I'm so sorry for your loss. It's not easy.

How do you best deal with those who sundown?

Not take it personally. A resident coukd be as sweet as can be to you. But once the sun downers hit, you're their worst enemy. That may just mean that they yell at you and say nasty things. Or it may mean that they become aggressive and easily triggered. It really comes down to knowing them individually and what sets them off v.s. what works for them. Sonetimes you just have to leave them alone, not engaging them, for a little bit so they calm down. Patience goes a long way.

OP, can you explain what you mean by sundowners?

Basically, when the light fades and evening sets in, patients react by losing energy and getting cranky.

Bingo

It happens around sundown. It's a change in the behavior of some residents. Often times they become a bit aggressive or agitated. Wiki: https://en.m.wikipedia.org/wiki/Sundowning

I have a personal feeling that working in places like this may negatively impact in the worker's personal life, I know this is true for the majority of jobs, but it seems to me the probability for this kind of work in particular is higher, does this relates to you or anyone else that works with you? Anything you can tell about that or how you or someone else deals with it?

Also, any case of people who recovered from being in this unit?

Sadly, yea it does have a negative impact. It is very, VERY emotionally and mentally draining. I see it in myself and my friends and family have pointed it out to me that it has made me, to a degree, emotionally cold. I find myself faking sympathy/empathy a lot. You have to really be able to detach yourself to work in any type of medical field, I think. Sometimes that means being able to laugh in inappropriate situations. As far as people recovering, that's a no. Alzheimer's and dementia is, as far as I know, are degenerative and often affecting our geriatrics (old people).

This gonna sound a lot personal, but can you tell us how do you do with the emotion coldness? Interested cause I went through something involving this, imagine a rollercoaster of being warm and cold, something along the lines of what I've been through.

It is a rollercoaster. And I'm not sure. I'm still learning to deal with it. Being able to turn it off and on when at work and at home is a challenge I'm trying to figure out.

I have 2 questions: Have you ever witnessed violence toward a resident from a caregiver? Seems your patience would eventually wear thin and someone might snap.

Have you ever had a resident figure out a door code and escape, or had a visitor accidentally let a patient out?

Yes. But not as often as you would think. It's important as a care giver to recognize in yourself when you need a break. It's because of that that we rotate sets weekly so you're not dealing with the same residents every day and getting worn out. And please, even if you suspect the slightest bit of abuse, report it. And yes to the door code. Everytime that happens the code gets changed, lol. To avoid having a guest accidentally let someone out, we don't give out the code to anyone who doesn't work there. That includes emergency services. Someone will always escort them in and out of the doors.

Are you familiar with the Music and Memory program? If so, and you've implemented it (or something similar), what kind of results are you seeing?

I've heard of it but am not too familiar. We have guests come to our facility on a regular basis and play music. Usually the piano and sing. I know our residents really enjoy it. Even those who are no longer verbal will start humming and clapping along.

What advice do you have for someone who is just beginning their career as a nurse?

Breathe. Your CNAs are your eyes and ears. And your hands. Don't be afraid to get dirty with them. Be aware of your scope of practice. Choose your words carefully when speaking with family. Don't be afraid to ask for help. Document everything. EVERYTHING! It covers your ass. Common sense goes a long way.

Do you have to reorient the patients or do you just go with what they say and not agitate them?

A lot have delusions and you kinda have to play into that delusion with them. That is assuming it's not putting them or anyone else in danger. #1 rule: there is no arguing with a dementia patient. Sometimes it works to reorient them but often times there's no convincing them that the dog they had 50years ago is under the bed and he needs to come out so he can get fed. What do I do? I'll go to walmart and get them a damn stuffed animal of a dog if it's that common of a delusion for them. As long as they're dry and happy, I'm happy

Could you give us some more examples of delusions that you've had to play along with? I'm morbidly fascinated by the idea of delusions.

I have one gentleman who is constantly convinced that we are trying to starve him to death. Even as I am putting food down in front of him. It's to the point that he sets his alarm clock to go off every couple hours. That's his "food alarm". Some of the women believe that the building is their house and want to know what the hell we're doing in it. Another thinks I'm his sister and speaks german to me then gets very angry at me when I don't answer him (I don't know german). I'm the only one he does that to. There's a lady who is convinced she lost the kids she was baby sitting and will walk all around the place looking for them. It gets interesting. They change every day.

How much hooking up goes down in those types of places? Always hear stories about old folks in units like that catching an umm second wind.

In a regular nursing home or ALF, quite a bit. In memory care, not so much. Not to say that it doesn't happen. The problem is that they are not in a mentally sound state to give consent. They do have their rights, though. So it's a grey area. I have a couple men where I'm at who are still pretty mentally with it and are high functioning. They have been caught with a couple of my women who are nonverbal and have almost regressed to the mental state of a 5 year old. When we catch them the women are almost always upset and usually at that point have become violent due to the encounter and will take a day or two to calm them down. We usually contact the family of both parties to inform them of the event and try to keep them away from each other.

Is it true Alzheimer's patients don't die from it? Instead they live as long as they normally would only impaired?

Yes and no. From what I've seen a lot will develop other issues as a result of their Alzheimer's/dementia that will lead to their passing. The most common that I'm seeing right now is issues with eating. I have a few who hardly eat. Protein shakes are a god send in this situation.

How do you help keep your residents happy? My grandmother has alzheimers, and she gets really depressed when she starts realizing that she can't remember anything.

Keep them engaged. Try not to let them stay locked in their rooms all day. Socializing is still very important. And it helps when family visits!

So does this make you laugh your ass off? https://imgur.com/nXP0wsJ

Yes. And it's sadly true. We do have a couple men in my facility who are still mentally with it and take advantage of the women because of that.

Is this classified as rape? Do you do anything to stop it/remove the men?

That's really where it becomes a grey area. The man can say he didn't know any better just as much as the woman. We can watch them, keep them from going into rooms together. And even keep them on seperate sides of the building. Currently our resident rooms lock automatically once the door shuts and can only be opened with a key fob. That helps since they cant easily go behind a shut door together. But the higher functioning have their own fobs that are specific to their rooms. And those are the ones we have trouble with. We just always have to be aware as to where our residents are at all times.

Do you find yourself struggling to connect with patients because of the inevitable? On the flip side of that, do you struggle with getting too close to a patient and being deeply effected what the inevitable happens. What is the mood in the office when someone time has come?

Sorry for asking 3 questions. I'm just genuinely interested.

I'm currently having trouble connecting but I don't let that effect the care that I give. When I first started in this field it was hard because I was getting too attached and then I had to watch them die. When someone passes they mood is very "oh well that sucks... So what are we ordering for lunch?". It's not that we don't care, it's that we're trying not to care. Idk if that really makes any sense but you can't really care too much, I guess. If you did you would go crazy.

Do you plan on this being your life's work? If not, what's next?

I would like to but honestly, it doesn't pay at all. The hardest thing for these facilities is keeping GOOD care aides for these individuals. But there isn't much room for advancement and it's at the bottom if the pay scale. I am currently going through the hiring process for the VA. So soon (hopefully) will start another chapter in my career.

You mention a locked unit. Does that mean your patients have more severe cases?

They are all different and in different stages of their dementia, but yes. A lot of them are severe. Being a locked unit means no one can leave or enter without going through key coded door. In most ALFs and even some nursing homes, they can go outside on their own. This is not the case here. They need almost constant supervision. There is an outside area for them but it's a fenced in garden and they are not outside unsupervised.

We just put a friend in a memory-care residence. They can go outside on their own (it's fenced in) but not if it's over 95 F, which it has been a lot lately here in central Texas.

With my facility, it's fenced in but we usually have someone out there to supervise them. It will usually be someone from activities or a cna if we're not short staffed that day, lol.

My mom was diagnosed with early stage alzheimers a couple years ago. It's still really early but I can tell it's getting worse. Got any advise on how to help her remember more? Also she feels really bad with herself whenever she forgets something how can I make her feel like it's not her fault?

Sticky notes on everything! Be there to talk to her. We can never really know what it's like inside their head. Reassure her. Tell her you love her. And don't be afraid to seek help if you need it. Some insurance with cover the cost to have a care aide come to home and help.

Have you encountered they use of Music Therapy within your work? Seen it's benefits? (Former music therapy student who was captivated with the ability of specific songs and lyrics to soothe an anxious alzheimers patient. )

Ive heard of it but haven't seen it in practice. I should suggest it to my administrator.

Hiya, whats the hardest part of your job?

A lot of people I work with would say it's the violent residents. But I'm use to it and most of the time can read them and their behavior enough to know when its coming. So... Physically: Memory Care is not the same as a nursing home. It is an ALF (assisted living facility) with additional licensing that allows us to care for these people. That means legally, we can not take in certain residents. That doesn't mean we don't have them, though. Because we do. A lot. So when you have a 6' tall man that weighs 200+ lbs that is incapable of bearing weight, you run the risk of seriously injuring yourself (and the resident) during transfers. Even with 2 people. In that situation a nursing home would have a mechanical lift. Emotionally: getting attached to your residence. I advise against it. Once they hit a certain point they seem to go down hill fast and it's heart breaking watching someone deteriorate on such a way. Both mentallt and physically.

hello, i wanted to ask if you could share some of the creepier stories from your job. I knew somebody who worked at the VA and had a veteran who was convinced that he was his friend who died in vietnam. also, if you have time, what are the exact duties of your job?

Lightfairy described it well. Some creepy things, I've had residents ask me for permission to die. Sometimes once they're in the end stages of life they start talking to people who aren't there, saying names of dead loved ones. I had a gentleman continuously ask who the man in the corner of the room was. We brushed it off. After he died, the next resident that moved into that room would ask the same thing.

How does Alzheimers or dementia typically progress into being severe (does it predictably worsen over the course of years or does it fluctuate dramatically with individuals)? How often do minor cases go unnoticed and what are some signs that might lead toward getting a doctor's opinion? (I read the comment about the sense of smell going first, but what happens after?) And lastly, do you have a sweet and endearing story of a patient?

It really is different for everyone. The thing you have to remember about dementia is that it is a very broad term like "car". Iirc, there are currently 50+ (or 150+) different types of dementia and it often times gets misdiagnosed. The most important part in treating the disease is knowing what you have. The two most common are alzheimers and lewy body dementia. And alzheimers is only confirmed after death. That being said, I currently work with a wide range of individuals. I have the "pleasantly forgetful" to the nonverbal, doesn't know how to feed themselves, and at this point they are mentally a toddler. What I've noticed is when they get a serious injury, such as a broken hip or something, and lose a good portion of mobility, it will be after that point that their dementia will start to dramatically worsen. I always say "you either have your body or your mind" when referring to geriatrics. When one is already impaired due to an illness such as dementia and you suddenly lose the other, you go downhill fast. As far as knowing when to go to a doctor, your family is always gonna be the first to notice. But forgetfulness is a part of aging. It's when it starts happening a little more rapidly and you'll usual start doing odd things. You lost your keys but it turn out they're in the freezer. You can't figure out how to open the juice carton, you mistook the hall closet for the bathroom, you used raid bug killer instead of pam nonstick spray. Most people will do one of these once or twice but it's not a common occurance. It's when it starts happening all the time that you may want to be concerned for gramps. It often goes unnoticed when the individual lives alone. So please keep an eye on your loved ones.

My Grandfather currently has severe dementia and is in a locked wing of a retirement home (separated from his wife, my grandmother) and my Babci had severe dementia/Alzheimer's before she passed away. One day a nurse gave my Babci an extremely hot cup of coffee without a lid and it ended up spilling on her leg causing third degree burns. It seems to me a lot of nurses don't care for their jobs or do a horrible job at offering care. Why do you think this is the case? What can be done so that people with dementia are receiving appropriate and loving care that they need?

Sometimes it could be a "dumb moment wasnt thinking omg im so sorry" part on the nurse/cna. Other times they probably just dont care. Sadly. It is a very crowded field because it's easy to get into. Because of that there are peopke who just have no business being in it. It just wasn't their calling. And other times it could because it is also a very overworked profession so they could be burnt out and not even realize they're giving shitty care. Every facility I've been it we've always been understaffed. Not by states standards though. Or they are working in an ALF setting, and have residents that need a nursing home, causing them to be overworked and resulting in the same issues. There are many factors that could of been playing in there. I could write a whole other post on what's wrong with long term care.