Hi everyone! I work at a retirement home/demantia and due to there being prohibit rules workers aren't allowed to speak about whats going on and people will always ask me a lot of questions about my work so Here I am! I will of course still follow this prohibited to talk rule by not speaking in details about the individuals or places or who I am but I will still answer questions about the work. Atm I work on night shifts and it is pretty quiet so I was thinking I could spend the night answering your questions. So fire away!

https://imgur.com/a/gmqcX

(EDIT:) Reading your stories and other caretakers experiences warms really makes me smile! I had no idea that this AMA would get this kind of exposure

(EDIT EDIT:) I think some my comments got deleted or I just forgot to save them so RIP. I wanted to make sure that I read every question thoroughly. So back at it again.

(EDIT 3X:) I will go to bed. Im pretty tired at the moment. I will look through the comments when I wake up and answer some more and then I'm gonna close the AMA. Im really happy that I could help out some of you and give you some clarity. Take care!

(EDIT 4X:) Alright im gonna end it here. I have had so much fun reading your stories and answering your questions. Never thought this would be such a huge AMA. Take care everyone and I wish you guys all the best! <3

Comments: 1272 • Responses: 37  • Date: 

cwleveck3899 karma

I am 45 and have been diagnosed with Lewy Body Dementia. How will I and my family know when the right time is to put me in a home? I don't want to be a burden on them but I don't want to lose time with them either. I'm only starting to have trouble with memory now. I lose a lot of arguments, and I get confused, sometimes a little scared if I am not sure what's going on around me. Usually takes me a little while to figure out where I am when I wake up in the morning or from the occasional nap.

iworkwitholdpeople334 karma

Oh wow. I am so sorry to hear that! It truly breaks my heart and I truly hope your family can cope with it. Some of the suggestions I have read like - the notes! which are really great idea. Not stressing yourself with a lot of work or thinking and staying in an environment where you feel safe for an example like home will help with the confusion. Don't think about being a burden to them because that will only make you sad. I can't tell when it is time to move to a home and doing it too late will only hurt all of you to deal with it cause at that time you surely wouldn't leave your family cause you probably won't know what is going on. If it helps most of the residence here remembers their loved ones and they visit a lot. I hope you and your family gets through it as painless as possible.

cwleveck166 karma

My wife and one of my kids are reading all these with me, and I'm pretty sure we're on the same page here. And don't feel bad for me, I don't feel bad for me. If you've read any of my other posts here, I'm doing okay with it. And I still have lots of time. Lot's being relative, of course, to different people. But we're doing fine. Thanks again for all the concern.

iworkwitholdpeople85 karma

It makes me happy you are on the same page and you are enjoying your every moment. I wish you the best of luck to you and your family!

s3ans3an602 karma

I have 2 questions really that if you could answer would be amazing!

1 - What’s the best way to deal with their confusion?

2 - Is there any other advice you can give to someone trying to support a relative who has it? How to calm them or reassure them?? We’re trying our best but it’s such a unique illness and we just want the best for them

Thank you

iworkwitholdpeople699 karma

  1. It usually different from each individual. My best way is usually playing along in what they are seeing or telling. Also talking them away from subjects that will anger them or anything like that helps. One of the women living here would always think the employees stole her items and get angry but just asking about her dog or her husband or something like and instead she would tell stories about her life and that would make her in a good mood.

  2. Dementia is one of the worse things to deal with. Not only for the afflicted but also for those around. I don't know how far your relative is because it gets worse. But talking about things they know or memories always helps. Personally my grandma had alzheimers and she thought I were my dad. I totally understand how you must feel.

herinitialsspellher59 karma

My mom’s mom worked in a nursing home for years and when she heard that my dad’s mom had Alzheimer’s, she said it’s a disease worse than cancer; it steals a person’s soul before their life. It never really hit me until I saw my dad’s mom days before she died; she looked just like my grandma lying in her bed but she wasn’t my grandma anymore.

iworkwitholdpeople12 karma

So true. Losing a person while them still being around is weird and hard. I hope you coped it well.

Canbot309 karma

1.Do you tell them the same jokes they love over and over?
2. Are there any therapies that they do to promote brain health?
3. Do they just deteriorate to the point of staring off into the distance?
4. If you were in their shoes would you want to end it?
5. Do you ever mess with them, like calling them Mom/Dad?

iworkwitholdpeople622 karma

  1. I do! Their favorite one is ''A blind mand walks into a bar... A table... And a chair''
  2. There are! It is simple things like watching old photoalbums, sitting alone with them talking about their life asking about specifik details, also taking them out for walks.
  3. Depends on the diesease. Worst cases are just them talking a lot about strange things or disjointed and don't remember very well.
  4. Tough question. I have heard a lot of people saying they would kill themselves if they ended like that but to those who deals with it - everything is normal.
  5. Most of them actually has really great humor! So they would mostly mess with me. A day I was really tired I laid my head on my hand and rested my elbow on the table. One of the men living there smacked my arm away from under my head so my head fell directly into the table. He then laughed like a evil genius.

Wangchief181 karma

My grandfather has dementia and currently lives with me. He has this incredible aversion to showering and just refuses to clean himself, and also refuses help from myself or other outside staff. Have you seen this behavior before, and if so have you found a way to effectively promote self cleaning?

Side note: he’s also completely deaf, so communication is difficult to say the least. Thanks!

iworkwitholdpeople165 karma

I could imagine. Seeing it from their point of view. Maybe he is embarrassed about the whole situation? Trying to convince him that it really isn't a problem and it will be over in a second could be a solution. Otherwise try making it as comfortable as possible so when you get him in a shower try to have fun and make him laugh so he won't have a negative view on it.

JohnCondren155 karma

What was the best moment of your career?

iworkwitholdpeople418 karma

Hard to tell :D But there are usually moments that I will remember. I took one of them to the graveyard so they could visit her husband. She started crying and gave me a hug. We went for a long walk around a lake where she told stories about her husband and kids.

unbiasedasian132 karma

Has any of your patients suddenly become lucid, and knew what was happening to them?

What techniques do you find help to prolong their lucidity?

iworkwitholdpeople545 karma

One of the men living here always say some strange things. When he is in his bed he will tell me to remember to pad the dog when I leave and turn off the car aswell. Stuff like that. One day I had him out for a walk and we walked by a graveyard. He then tells me ''there is a german soldier graveyard in the back of it'' And I have lived here my whole life so I wasn't sure about this but he convinces me to go in and have a look. There actually was a german soldier graveyard hidden behind some trees. I was kinda shocked. But we left the graveyard and walked in a little neighborhood. He then yells into a garden where a guy was cutting grass ''Hey you ugly bastard''. The man comes over to us and im prepared to explain that he has dementia etc. Turns out the man he yelled at was an old work employee from like 40 years ago. He invited us to a cup of coffee and they talked about old times.

Just basic things like going for walks, ask them about their life or look at old photographs. Asking into details like ''what was your address'' or ''what did you do after school'' will always push them a little.

greffedufois82 karma

I care for an elder with stage 4 Alzheimer's. Any advice on how to convince her to shower? I always make sure the bathroom is warm, same with the water and I still outside the door while she bathes (she won't let me help, sometimes she will let me help dry her off but she's pretty shy) and sometimes let's me help her into her clean nightgown.

But often she doesn't want to bathe and gets a full shower maybe once every 2 weeks. I'd try for weekly but that just isn't happening. I also gave shower wash caps and bathing wipes if necessary.

I've read that bathing is a common issue and done everything I can to make it more comfortable, but are there any tricks or I guess trade secrets you've come across in your time working with multiple people? Thanks!

iworkwitholdpeople71 karma

We have one who is hard to make her take a shower but promising her to wash her back always seems to help lol. But some of the aggressive ones or who is really confused it's easier to just to start the shower and say ''alright take of your clothes'' in a friendly manner. Offering to give coffee afterwards will always help!

SrboSS154 karma

which patient had the biggest impact on your way of thinking and seeing the world?

iworkwitholdpeople161 karma

Hard to tell. One of the residents here are the sweetest thing! Always jokes around with me, hugs me, tells me she has missed me when I haven't been to work. She is the most loveable person I have ever met and it would make me sad when her times comes to and end.

Also there is a husband and wife who lives here. They are so sweet! Their tragic story was when they lived at their farm the husband got grumpy and forgot things and the wife and trouble dealing with it so he moved to our home. The wife unfortunately had a blood clot in her brain a week after he moved out. She lost her speech and the ability to walk. They only thing she can say is ''cluckcluckcluck'' but she understands everything you tell her. They live in the same home now and they still sit around every day holding hands and kisses! It makes me appreciate coming home to my girlfriend even more!

undreamt_odds53 karma

I watched a documentary a year or so ago about music therapy and from what it presented it seemed like it had a positive effect, have you had any first hand experience with this and if so what were the results?

passthepepper2124 karma

Hello, I am sorry but I am hijacking another question. I have another story I would love to share.

Years ago, I looked after a religious man with a rare form of dementia. As his disease progressed, he became nonverbal and bed/chairbound. He became very violent when care was being provided to him. Medication helped some, but he was always aggressive, almost as is he was trying to protect himself. He would hit out at the air, hallucinating.

His care providers would do his care very slowly, leaving and reapproaching, then describing what they were doing for him.Often he would nod and say yes to consent, but it seemed like he would forget what was going on within a minute and start hitting again.

He was started on music therapy. The music therapist would sing religious hymns with him, and he started singing along! It was amazing to see someone who was almost completely nonverbal sing along to familiar music.

The music was opening up some kind of pathways in his brain because he would say thank you and goodbye to the therapist. He would often be very calm after these sessions. He started making eye contact again, and occasionally smiling.

Music is a very powerful tool to affect the human body in positive ways.

Edit: grammar.

iworkwitholdpeople30 karma

No worries! Feel free :D My experience in musical treatment is very small. I will definitely try to implement it way more!

iworkwitholdpeople20 karma

We have experienced a little with it and I could totally see it work but not any definitive proves about it. But some of the residence will always listen to music they know when they are trying to sleep. It calms them! :D

infant_hercules52 karma

Hey,

Thanks for doing a Q&A, I hope I'm not too late and this comment doesn't get buried as this is something quiet close to my heart and it would mean a great deal if you could offer a little advice and guidance.

A little back ground information. My Nanna was diagnosed with Alzheimer's around about 4 years ago, she is 91 years old and still lives in her bungalow, alone. My Grandma, my Nannas daughter, is her primary carer. She is adamant not to have to put my Nanna in a care home. Over the past few month my Gran has started paying for some carers to come in at certain intervals during the day just to ensure that my Nanna is OK as it had gotten to a point where my Gran was basically living with my Nanna after a recent event of her taking a weeks worth of medication in a matter of hours.

The week before last it was my Nannas birthday, my grandparents took her an hour out of town for afternoon tea. They stayed for about 3 hours then drove home, when they got home my Gran did my Nannas hair and her nails for her for the family coming round to my Grans for food that evening. Family arrived, stayed 4-5 hours, we all had something to eat, then my Gran took my Nanna home.

The following day my Gran went to my Nannas, as she does every morning, and asked her if she enjoyed her day yesterday to which my Nanna replied 'what happened yesterday?'. It's truly heartbreaking to see.

I have a few questions below, some seeking advice, some wondering the normality of what my Nanna and we all are going through:

1) Repetitive conversations are something which stands out the most with my Nanna, she can ask how work is and you'll tell her it's going good and by the time she has processed the fact you've said it's good she has asked you about it again. Is there any tips on reoccurring conversations? It feel rude just to ignore her. 2) Whenever we try to start conversation with my Nanna it is unsuccessful, she just smiles and nods whenever you ask her a question, as if she is not really listening, again, is there any advice you have for this? 3) This is a bit of a strange one which I'd love to know the answer to; my Nanna constantly folds up pieces of tissue paper and stuffs them down the side of the sofa, in her handbag and hangs pieces on door handles, is there any reason for this? 4) Crisps. All she eats is crisps. If we walk into the supermarket the first thing she asks is where are the crisps? Is there a reason for a certain craving of food?

Again, thank you for doing this.

iworkwitholdpeople67 karma

Hey you! You are just in time! I will do my best to go over the whole thing. First of all your grandma sounds like the sweetest thing! The short team memory loss is sad. But most important of all if your grandparents had a lovely day then it was all worth its a memory to cherish. Actually had kinda the same with my grandma. Took her out in her wheelchair to the local bar where she had a beer and we went for a walk in the local park. I rode her home and my parents came by with food. She didn't remember it a couple of days after but she was so happy that day and I really had a great day with her!

  1. Repetitive converstations are there a lot of. I deal with this everyday. My best take on it is to force the conversation to something else she might remember. Like where she lived when she was a kid, hobbies, school etc. It is also a great treatment against memory loss but again in your case she is very old.
  2. She might be having trouble with coping with more than one thing. Try having conversations with her alone without music or radio or anything else. And use few and simple words.
  3. A lot of elderly people do this. Moves pillows, folds napkins, constantly has to do something with their hands. I think when their brain can't stay engaged they need to something with their hands. As long as it doesn't hurt anyone or is annoying I'd suggest you just would let her do it cause it isn't something that is going to change. Otherwise try giving her some towels so she has something to fold also consider stuffed pets. They tend to enjoy petting and taking care of them its sweet!
  4. Not sure. She might just love crisps! We have some who are the same way with beer and wine lol.

Thanks for your question!

ScaryPillow30 karma

  1. What lead you to do the type of work you do?
  2. What do you enjoy about your work?
  3. What do you dislike about your work?
  4. Do you feel that people with dementia are treated with respect and dignity?
  5. What type of training do you have?

Thank you so much for doing this AMA!

iworkwitholdpeople35 karma

  1. My mom has always worked with healthcare. So I kinda always knew I wanted to help others.
  2. I love that it really isn't stressful. My colleagues are also so helpful and sweet.
  3. Hard to tell. I dont really feel like I have anything that I dislike about it. Even changing diapers or changing sheets cause someone peed in their bed doesn't bother me at all.
  4. I truly do! After starting this kinda work I have the biggest respect for others who do the same. You kinda get a relationship with everyone who lives here so you are like family or good friends.
  5. You might have to elaborate that. But I was following one of my colleagues for weeks and just helping giving baths and stuff like that. If that is what you mean :D

HeadsOfLeviathan19 karma

How do you feel about assisted dying? Has working with dementia changed your view on this at all?

iworkwitholdpeople33 karma

Kinda a grey area for me. Where I live it's illegal. I met some who tells me they want to kill themselves if they end with alzheimers and don't remember a thing but when dealing with it everything will just seem normal.

Several things but one that will probably help anyone who has a relative living at a retirement home. So my grandma had alzheimers and didn't always remember me and I had a hard time visiting her because it was hard seeing her like that. Many of the residence family feels the same way and I totally understand. But just to make one thing for sure: Don't feel bad about visiting them because many of the employees will treat them well and sit with them and talk about old days. So they won't be lonely at all. If you visit them - do it because YOU really want to see them.

Chickenmcwater18 karma

I just feel like I need to vent for once since I dont like talking about it when I'm sober. Only 3 of my friends knows this but my mom is suffering from dementia. My grandmother has it also. My mother and father separated when i was 21 and now I'm 24. I heard from my aunt that as my mothers dementia progressed it started messing with her head, as it does with my grandmother, making her distance herself from our family.

I was always a "momas boy" but nowadays I rarely see her. She lives alone about 3 km from me but i rarely visit her because every time I see her I know that she doesnt really have full control of her memories and it seems like shes ashamed of that. She doesnt know where I "hold up" nowadays and every time I see her it is like a kind of strained conversation. I know that she still loves me but she cant seem to express it, you could almost compare it to any time we talk it is like talking to an old classmate that you used to get along really well with but you havent seen eachother for a long time so you dont have much to talk about or something similar. I have 2 siblings and I sure as fuck dont want to be the one catching dementia of us when we get older. The worst part is that my mother is 60 and she still has some years left. Her medecine that was meant to slow down the dementia doesnt work as well anymore and I'm not sure if she even will remember me before she dies. Ive been in a carecenter for people suffering from dementia and it wasnt pretty so I really dont want her to be in a place like that.

So since this is an AMA thread i have to ask a question, so what is the most popular ice cream flavour among the elderly people suffering from dementia that you've met?

PS: Dementia sucks. The end.

iworkwitholdpeople16 karma

First of all. Im so sorry to hear it and I hope you are alright. Maybe take her out and do something fun so the conversation doesn't seem that forced if you guys just sit across a table to each other. Maybe go for walk? You should enjoy your time together before it gets worse. The dementia center isn't always pretty due to most of the residence dealing with the same issues as your mother but sometimes that is a good thing. Feel free to private message me if you would like to talk about it. Well most elderly people likes basic things so vanilla. They are really not into trying anything new.

And yeah dementia sucks dick.

amooseme18 karma

What has been the most heartwarming and happiest experience you have had at work?

Similarly how do you get through the rough heartbreaking times which must happen more than most realise?

You work in an incredible profession often overlooked and undervalued. Thank you for doing a job most people couldn't do. It takes a special kind of care and special people to step into the role of carer. Even more when those people aren't related to you.

passthepepper289 karma

Sorry to hijack the question, but I have been wanting to share this story somewhere. Others I have told have trouble seeing past the sadness of the disease to see the humour and joy that you can come across while caring for these people.

I have worked with dementia,and one particular lady I cared for was a mother to the core,a mother who must've had a wonderful and twisted sense of humour.

She has very advanced dementia, often talking in word salads. When talking with her, her emotional state is often apparent, even if her words don't make any sense.

She has a babydoll that she treats like a live baby, swaddling and cooing him. Sometimes, we feel like we can interpret where her mind is at by decoding some of the words and body language. Sometimes she wants to ask all about you and catch up like you are her old friend, other times she knows your a caregiver and playfully makes your job harder. She has the cutest "queen wave" that she will send to you from down the hall.

Now, this sweet old confused lady gets upset sometimes; she sobs and cries and we console her with hugs and tea. One night, she had been in a mischievous mood, trying to get out of bed ( she hasnt walked in over a year). We helped her into her wheelchair and brought her out to the nursing station. After a while of sitting with us, she seemed to be getting tired.Two of us went to help her into bed.

She began to cry on the way to her room, getting louder and louder. She pushed us away when we asked what was wrong.She started sobbing. As soon as we got into her room, she stops crying, looks us each in the eye, and bursts out laughing. She was giggling so hard that she started snorting, which got all of us laughing almost as hard as her. The three of us were in stitches! We helped her into bed, cackling the whole time. As we were tucking her in she was holding her stomach from the laughter, tears pouring down her face. She grabbed our hands as the laughter slows.... " Oh my girls, what a night...what a night.I love yous". I will never forget it, and I always wonder what she believed we had gotten up to that night.

edit: a word, layout.

iworkwitholdpeople20 karma

What a sweet story! There will always be moments like these and I try to cherish any one of them!

iworkwitholdpeople30 karma

There are many! Even the small moments like kissing me on the cheek when they go to bed, giving me a hug or just them being grateful for being there makes me so happy! A moment which is both sad and makes me kinda happy at the same time was; A lady who lives here doesn't have dementia and she is completely normal. She is just old and are having trouble taking care of herself after her husband died. One day I took her out and we bought flowers and went to the cemetery where her husband was buried. She starts to cry and I hug her. We then went for a walk around a nearby lake where she told me stories about her husband and their family. But the thing that always breaks my heart is the ones who don't understand why their wives or husbands isn't there. Sometimes they will call for them in the middle of the night and ask about where they are.

bigbagsofspaghetti14 karma

I work night shifts at a home for people with Alzheimer’s and dementia as well! Two questions for you.

  1. How has working third shifts/working at a home in general affected you as a person - mentally and physically?
  2. How often do your male residents get sexual or aggressive (not sexually) with you, family members, and other residents? I know that dementia can tend to bring out some interesting character traits in people that they really didn’t have before, or traits they did have and just kept suppressed. I have one resident in particular who is always groping/trying to have sex with our female employees, and sometimes even me (and I’m a man).

iworkwitholdpeople16 karma

  1. Physically definitely! After a work shift I always feel like I been running a marathon. So I have trouble hitting the gym in the afternoon lol.
  2. It can happen. We only have a few residence where we know things like that tend to happen. So you are always prepared for it. Funny story actually. We have a woman who has gotten really aggressive and she don't like men. So the first time I met her my colleagues were like ''wait here and turn your back to her''. So I did that - she then grabbed my butt and said ''Not bad''. But yeah. Some of the men can get really inappropriate at times and asked some of the girls if they want to make a baby or come lie with them.

secretsauce00714 karma

My dad has FTD. Do you have any experience working with people with FTD? This shit sucks and any tips would be great.

He's at the stage where instead of opening the front door, he locks the door handle and deadbolts the lock then wonders why he can't open it. Speech is also fucked. Lack of nouns and verbs when he tries to talk.

iworkwitholdpeople14 karma

Im so sorry to hear that and I hope that you and your family is okay! Frontotemporal dementia is so hard to deal with. I know there a some medications which can help a little but there really isn't a cure and it will only get worse. When having conversation try just talk about things he surely remembers and ask about details. Like when talking about him - ask him about his birthday, address, first pet etc. But that is probably the best I can do. I really hope you can cope with it. It is hard to deal with.

DreamsAndChains10 karma

Do you notice patients trying to pretend they know what's going on when they don't, or do dementia patients tend to be too far gone to even fake it? I often feel like my elderly grandmother is pretending to be "with it" when she appears to actually be confused.

iworkwitholdpeople9 karma

Haha. Yeah we have had some of the residents do that. They will usually speak some gibberish. I will always acknowledge what they are saying like ''Oh yeah. You are right'' so they don't get the feeling that they have no idea about whats going on and gets sad.

ranchdepressing7 karma

What has been your creepiest experience at work?

iworkwitholdpeople20 karma

I had worked a night shift and it was my last shift after 7 days of work and I were really really tired. I fell asleep for like 5 minutes. And I had a nightmare that I was awake where I was sitting and I looked over to the couch next to me. An old man was lying there. His eyes are black and then he just screams at me! I wake up and had trouble breathing for a sec. That is probably the worst thing.

turnip_ron86 karma

What's the strangest thing that one of your patient's did?

iworkwitholdpeople19 karma

Strangest thing. Thats a tough question cause there is A LOT. I experience people shaving in the middle of the night, taking of their dirty diapers and hide them, picking up poop from the toilet and putting it in the bin and proceeds to wash hands in the toilet.

doughtyc5 karma

Do most families come to visit often or do they eventually stop coming since the residents might forget who they are?

iworkwitholdpeople12 karma

Differs. Some of them who is in a really highly advanced stage of dementia will change them as a person A LOT. Some of the relatives have trouble seeing them totally different from what they are used to. So for those who don't visit I totally understand how they are feeling. But dont feel bad about it cause they definitely are not lonely!

deanie19705 karma

Do you notice a change in your patients/residents during a full moon? I also worked with dementia patients and it was always different during a full moon.

iworkwitholdpeople7 karma

Actually yes! We have one who can't talk and she is numb in most of her body. But every time there is a full moon she will howl in the middle of the night. My colleagues has experienced it aswell.

bodaciousthepotato2 karma

Hi! First off thanks so much for the work you do! I have a grandmother with Alzheimers who just recently moved to a permanent care home similar to where you work. She has been very happy there and its great that there are people like you to help with such a difficult disease. It means a lot.

Anyway, I know Alzheimers is a bit different than dementia but they are also similar in a lot of ways. So my questions for you are:

1.) Do you work specifically with patients with dementia or a wider variety of mental illnesses? How does your treatment differ from patient to patient based on their needs?

2.) What would you recommend doing/saying to respond to or help calm a person with Dementia or Alzheimer's when they become upset or confused?

Thanks!

iworkwitholdpeople5 karma

  1. Our residence fully commits to dementia. It used to be a regular nursing home so some of the residents are just regular elders. They renovated the place into a small village with an icecreamstand and a small store. It is a rather new project but I really look forward to it being fully launched :D

  2. If there a many people it can stress out the person a lot. Talking them away from the bad subject. We had one who called the employees bitches and said they were stealing her belongings. And instead changing the subject to like ''But what about that dog you had when you were young? Was it a golden retriever?'' so it is something they know and will start to remember. But with you being calm and positive so they won't feel threatened is also an important way to go.

cubeeless2 karma

Are patients mistreated, just because they are older, helpless and have no voice?

iworkwitholdpeople2 karma

Not where I work. Most of the employees gets kinda a family relationship with them. I truly believe that my colleagues comes to work with the mindset of making a difference for others :)