Patty's Place
A place to talk about grief, dementia and caregiving. A place to find comfort when you are going through a difficult time.
A place to know you are not alone as you go through this difficult time.
Patty's Place
Navigating Hallucinations in Dementia: A Caregiver's Guide to Comfort
I would love to hear from you. Send me questions or comments.
What happens when someone you love starts seeing people who aren't there? For dementia caregivers, this moment can be jarring, confusing, and even frightening. But as I discovered during my mother's journey with dementia, these hallucinations can sometimes bring unexpected comfort.
When my mom first began seeing a little girl with red hair, I recognized she was connecting with her cousin who had died at age 11. Later, she spoke with her brother who had passed just a year before—someone we deliberately never told her had died to spare her from repeatedly experiencing that grief. Rather than correcting her, I asked questions and joined her reality. "What are they saying?" I'd ask, or "Isn't it nice they came to visit?" This approach preserved her dignity and the comfort these connections brought her.
Before assuming hallucinations are simply symptoms of advancing dementia, caregivers should consult healthcare providers to rule out urinary tract infections, medication side effects, or other physical causes. Once medical issues are addressed, the key challenge becomes how to respond compassionately. Rather than arguing about what's "real," successful approaches include validating feelings, offering reassurance, redirecting attention if needed, and making environmental modifications like improving lighting or covering mirrors that might trigger confusing reflections.
For many with dementia, seeing departed loved ones isn't frightening—it's comforting. My mother found peace in these connections, and that brought me peace too. By entering her world rather than demanding she enter mine, we created moments of genuine connection despite the progression of her illness. Perhaps the greatest lesson dementia teaches us is to be present in the moment, just as our loved ones are forced to be. Years later, I'm grateful for the times I set aside my need to correct and simply joined my mother where she was.
If you're navigating this complex journey of caregiving, know you're not alone. Sometimes the most profound gift we can give is simply meeting our loved ones in their reality, whatever that might be today.
Welcome to Patti's Place, a place where we're going to talk about grief, dementia and caregiving. I do this podcast in honor of my mom who passed away from dementia, and I just want to be able to share these things with you that I've learned. By all means, I'm not an expert, but I like to share my experiences and let you know that you're not alone, that there are other, that people understand and we're here, and so pull up a cup of tea and a cup of coffee or, if you've had a really rough day, maybe a glass of wine, and just sit back and relax and see what we can do and at least you find some comfort. Hopefully that's my goal with all of this that you find some comfort and know you're not alone. Today I wanted to talk about focus on dementia, but kind of it could be scary, it could be comforting this part of when your loved one starts to see hallucinations or feel hallucinations. It can kind of be I don't even know what the right word is when my mom first started seeing people that weren't there, or even sometimes she had smells that I didn't smell but she did, and at first it kind of throws you for a loop with it. I remember the one time my mom said she was smelling roses, and I didn't smell any roses, but I remember my mom had told me that right before her mom had passed her mom, my grandma, had smelled roses. So it it like stopped me in my tracks for a few minutes because I remembered that and I was like oh okay, you know. And then another time, one of the first times that she started to see people that weren't there, she said don't you see the little girl with the red hair? And we were in the hallway and there wasn't any little girl with red hair. But why it stopped me in the tracks was because my mom's cousin had passed away when she was only 11 and they were super close, they were more like sisters, they were inseparable, and her cousin had red hair. And so I knew right then, and there that's, who she thought she was seeing was her cousin. And I even asked her at one point what was the little girl's name, and she told me the name was her cousin's name. And I, instead of arguing with her, I just was like, oh okay, that's nice, you know.
Speaker 1:And sometimes there's other reasons. The first thing you probably want to do if it kind of starts out of the blue for it. You might want to take them to the doctor or have the doctor check them, because sometimes they could have a UTI and for some reason especially with elderly women and it can be for men too for some reason when they get a UTI it does make them have hallucinations with it. So you definitely want to get that checked to make sure it's not a physical reason for it. You know you want to make sure that it's not medication, it's not something physical that's causing those types of hallucinations with it. Unfortunately, the hallucinations are another part of dementia with it, and so you have to kind of learn how do you deal with it. You know how do you face that? You're like they can have whole conversations and you're sitting there and you're like who in the world are they talking to? So I think it goes back to being able to enter their world.
Speaker 1:It is hard because from my experience with my mom, when she really started to talk to and see people and talk about them it was towards the end of her journey. I can't say for sure that that's always what it means, but in my mom's case it did. My mom would say she saw her brother. She would talk about her mom and her dad. She would ask me when had I seen her mom? She would talk to her brother like he was there, and I knew he wasn't. And she would talk about her brother like he was there and I mean, I knew he wasn't in that. And she would talk about her mom and her cousin and she would have these full conversations with them and I'd be right there.
Speaker 1:Now, I never took the approach of arguing with her and telling her that they weren't there. Sometimes I would ask her just to see what she'd say, cause sometimes she didn't always name the person. She would just be like hi, you know. And I'm like, oh, who are you talking to? And you know she'd say, oh, I'm over there, you know. And I would sometimes ask her what did they look like or what were they saying, and things like that. And sometimes I just wanted to hear what she'd say. Like, you know, describe them.
Speaker 1:One time this was really really towards the end and she, she was like, don't you see all them over there? There's like 30 of them. And I was like are they the wee people? Like no, I was like are we talking about little fairies? What are we talking about, you know? And she's like, no, aren't they cute over there? And I was like, yeah, they're really cute. She also would start um, she, it looked like she was petting, you know. She kept moving her arm and moving down like she was petting a dog and there was nothing there. So in my mind I would say to her oh, is that Annie? Is that Vegas? Those were our dogs that we had, because that's what she looked like she was doing. She looked like she was petting those dogs and I know they both would have given her comfort. So whether that's what she really thought she was doing or not, I don't know.
Speaker 1:So you know, it can be really upsetting if, all of a sudden, you see this person, you know you're talking, you're talking to them and they start talking to you about people that aren't there. It can be really scary, it can be really upsetting and it's hard, because dementia is hard in and of itself. With it, you know, you're already trying to accept the fact that, yes, it's your loved one, but they're also not your loved one, you know, especially when they ask well, who are you, what's your name? And now they're talking to people that aren't there and a lot of times, like I said, at least in my mom's case and that they talk to family members or people that have passed and that can be upsetting too for you, because maybe you really miss that person, you know and you're like, how are they talking to them? Right, well, they could be. You know, there's that sign that you know as it gets closer. It brought me comfort and I could tell it brought my mom comfort to say she was talking to her cousin or her brother or her mom. It brought her comfort. So that brought me comfort because she felt comforting. Now there also could be hallucinations where maybe they're afraid. Luckily my mom didn't experience that, you know, and I'm grateful for that.
Speaker 1:So again, when your loved one is experiencing hallucinations and you can look this up too as well on the Alzheimer's website too it's another situation where don't argue with them, agree with them. If you argue with them, you're just going to agitate, escalate the situation and it's going to make it worse. I mean, on one hand, what difference does it make if they say they're seeing their mom, if it brings them comfort? Again, it goes back to us as the caregiver, because it's about our feelings and our fact that we have to accept that this person is going farther down in the dementia cycle and maybe even being close to death, and that is really, really hard it is. There's no easy way about it and, again, in my experience it's being able to step outside yourself and not think about your feelings in that moment and be with your loved one who has dementia and enter their world. Now it's not easy, especially if you're a 24-hour caregiver. You know it's hard. So if you can take that moment and be like, okay, they say they're talking to so-and-so, and it could even be somebody that you don't recognize either.
Speaker 1:But I guess sometimes I had fun with it, for lack of a better word. I just a lot of times wanted to hear what my mom would say with things. And one of the oddest things that my mom was her brother passed away while she was sick. We never told my mom that he was sick because we didn't want to upset her and she wouldn't have remembered. So we would have to you know why make her relive that over and over again. And he passed about a year before she did and we never told her because, again, we didn't want to upset her and then she'd have to relive it over and over again, told her because again, we didn't want to upset her and then she'd have to relive it over and over again. But she knew and she would say, oh yeah, there's my brother, you know, and she'd say hi to him and everything. I'd be like, oh okay, that's nice. So I think on some level she really did see him and she knew that he had passed, even though we never told her with those things.
Speaker 1:So again it goes back to being in their world, which is really hard, because a lot of times we have that tendency we want to correct our loved ones and say, no, no, no, it's this, no, they're not there, what are you seeing? But take a moment and think about it and be like, okay, they say they're seeing so-and-so and then look at it and say are they comforted by this or are they afraid? You know and think about it, are they scared? Are they? You know how do they feel when they're talking about and saying that there's someone there that you know isn't there.
Speaker 1:So you definitely want to give them reassurance, you want to remain calm, even though it might be hard for you, and you want to be supportive If they're scared. You might want to say things like don't worry, I'm here, I'll protect you, I'll take care of you, and maybe you might even try to turn their attention towards you so that can reduce the hallucination if they're scared. You really want to acknowledge the feelings behind the hallucination and try to find out what the hallucination means to the individual. You might say things like it sounds as if you're worried or I know this is frightening for you if they're scared. Like I said, fortunately for me, my mom was never afraid with her hallucinations. I felt that she found comfort because at least when I was there, when she shared those with me, it was all people that she loved. They were all family members that she loved and she felt comforted being around them. So I was lucky, she was never afraid.
Speaker 1:You also might want to try a distraction if they're scared or if, honestly, if you don't know how to handle it, maybe try a distraction. Maybe try to get them to go for a walk or move to another room. A lot of times they say too if they're frightened, the frightened hallucinations a lot of times will subside if you, they're frightened, the frightened hallucinations a lot of times will subside if you go into a well-lit area or where there's other people around. You could try that to see what works, see what you can do to redirect, because with dementia, whether it's hallucinations or not, it's always you have to redirect Because, again, remember, they're going to forget in a few minutes and they may ask you the same thing or they may move on to something else. So hallucinations are the same way, they're not going to stay forever. So you can redirect with them. Or maybe you try to get their attention, maybe you start playing the music they like or have a conversation or you bring in some activities that they like to do. So again, it distracts them, it redirects them.
Speaker 1:So the other thing, too, is you really want to be honest, but it's also in the way you respond honestly. If your loved one asks you about the hallucination or the delusion, be honest. If they say do you see them, you might want to answer I know you see something, but I don't. This way you're not denying what they see or hear, but you're avoiding an argument with it and you know you might also. You might also say you see it, if you want to, you know, or just be like oh yeah, because again you're not hurting the person and I know it's really hard as a dementia caregiver because we're used to just telling people the truth. And it's hard because in dementia you have to enter their world and their world is different. It's completely different than the reality that you see every single day. So it's hard to break that tendency to always tell your loved one no, it's this, this and this, it's X, y, z, what are you talking about?
Speaker 1:But think about it from their point of view, even with the hallucinations. How are they feeling? Enter their world. Try to be calm. It's not easy. If they're frightened, you want to comfort them. Try to redirect them. Try to find out why they're scared about it. In that moment, give them something else to do. Maybe, if they feel comforted by it, then you can have that conversation with them. You might too, especially if they're scared by the hallucination. Maybe you try to modify the environment. Maybe you can check for sounds. Maybe it's a noise coming from a television or an air conditioner or something like that. Maybe it's some lighting that you can change. Maybe that's what it is. It looks like a shadow or a reflection, so maybe you can fix that. Maybe you need to cover the mirrors with a cloth or something. And then, because think about it, maybe when they're looking in the mirror they think it's a stranger, and it's them. So if you have to cover a mirror, cover a mirror. What difference does it make, you know? So what if the mirror's covered? If it makes them calm down and they feel better. Well, that makes it easier on you with the with the hallucinations.
Speaker 1:For me, like I said with my mom, she found comfort in her hallucinations because they were all family members that she loved and so I think for me, in an odd way, it gave me comfort. I think I knew she was. It was really close to the end and I think I found comfort because I felt like they were there with her and she, you know, they were helping her along on her journey. So I never was scared. I never argued with her about it. It made me feel good and comforted. Even, like I said, she looked like she was petting her dogs, our dogs, and I even joked with her about it and I was like, yeah, they probably are laying there on the bed with her, comforting her with that. So for me it was never anything that I was scared about. I know I would say things to other people about it, you know, and some people responded okay. Other people, I could tell it upset them, they didn't know how to handle it. Like what do you mean? She's seeing so-and-so for it.
Speaker 1:So again, when you're dealing with dementia, it's thinking about how you're feeling with it and again it is not easy to take yourself out of it and think about it from the person with dementia's point of view. It isn't, it isn't easy to enter their world, especially when they say they're seeing things that aren't there. But it goes back to the same. So think about it when you enter their world. If they say the sky is green, does it really make a difference to argue with them and say no, the sky is blue. And now you've agitated them and now they're all upset and now you've escalated the situation. Did it really matter that you were right? So sometimes you have to stop and you have to think about those things.
Speaker 1:When you're dealing with a person with dementia and it's the same as with the hallucinations, and again that can be really scary, you know, especially you know everyone feels differently about that. You know some people do find comfort thinking that you know a family member has come back and your loved one with dementia sees them. Some people like myself I found comfort with that with my mom Other people that might be like really a very scary thing. It might be something where you're like, no, I can't deal with this, I cannot handle this, no, I can't do it. And so, therefore, you lash out at your loved one with dementia saying, no, they're not there, how could you see this? And you get angry. And if you do, it's okay. You need to forgive yourself, but then try to redirect the next time, because a lot of times, if they see it once, they're probably going to see it again. And try to.
Speaker 1:The one thing about dementia that it teaches you is that you have to be in the moment. Because they're in the moment, five minutes from now, five seconds from now, they're going to forget what they just did. So they're always in the moment. And that's one thing that dementia can teach all of us is to be in the moment at times and not think about what comes next or what you have to do next. Just be there with that person, because you're going to look back on it and think about those times that you were with them in those moments and hopefully you feel peaceful that you were there and you weren't thinking about all the other things you had to do. Now, we're not perfect and there's always going to be days that you know we are thinking about those things. But when it comes to the hallucinations, you really need to think about how do you feel about those things? And maybe your loved one isn't seeing them yet, but there's a good chance that they will. It's a pretty common experience. There's lots of information about it on the Alzheimer's website with that.
Speaker 1:So think about how are you going to handle that? What are you going to do? You know what are you going to say. Are you going to be angry with them and then think about why are you angry? Is it because they're seeing someone? Or is it because you know it's coming close to the end? Or maybe you just don't even know. Again, you might. First thing you want to do is you want to look at and get some medical advice to make sure that it isn't something physical that's causing those delusions or hallucinations with them.
Speaker 1:But, like I said, the most important thing is try to be calm. Think about it. Think about how can you respond in a calm, caring manner to your loved one. How are you going to do that. How can you calm them down? Are they frightened or do they find comfort? Are they laughing? My mom laughed a lot of the times and it brought her joy when she talked about seeing the family members. So, like I said, I was really lucky. She felt comforted by it, so I think that's probably why I felt comforted by it.
Speaker 1:So when you're in those situations, are they talking? Who are they talking to? Are they happy? Well, if they're happy, then why steal that five minutes from them? If they're happy, just be like oh, that's really nice that they came to see you. What did they have to say? You know, it's the same thing when my mom would ask me had I seen her mother, my grandma? And sometimes I'd say, yeah, I've seen her, or oh, I'm sure we'll find her soon, don't worry, you know those different things I would tell her. And so, again, it's stepping into their world.
Speaker 1:It's trying to be calm for them and when they start to have those hallucinations, are they frightened? Do they feel comforted by it? If they're frightened, try to redirect them and maybe play some music for them or bring them to a different room or find different things. Let them know that they're safe. They're safe with you and that's what's important. They should always have someone that they feel safe with and maybe, if you are that person that they feel safe with, maybe that's why they're sharing that they're having that they feel so-and-so has come to visit them. So it's important that they feel safe and they feel comforted with it. Now, it doesn't mean that maybe when you leave the room that you break down and cry and be like, oh my God, they're seeing so-and-so. That's okay. It's okay if you need to do that, but let them have that moment. If you need to do that, but let them have that moment. And if they're frightened, try to calm them down and try to help them. Say you know, all right, if the person's coming through by the mirror, then throw something up on the mirror so they don't see it. It's the least that you can do for them when you're doing it.
Speaker 1:And again, hallucinations are scary. They are especially the first time, first couple times that they start to tell you that they see people and things that aren't there. And it is. It's not that they're out of their mind, it's just part of dementia. You know, dementia is so. Dementia is so complex. There's so many different parts to it that it's just one more part. And so, again, the more knowledge you have, the more places that you find information to help you guide you. That's what helps find information to help you guide you. That's what helps to help you find those tools, because it is not an easy disease, it just isn't. It's a very difficult disease to deal with and hallucinations are just another part of it. And think about how will you handle it.
Speaker 1:And, like I said, in my case, I don't know. I guess I just I was curious. You know, my mom would say that this person was here or that person was there. I like would ask her oh, what do they look like? What are they doing? Oh, that's nice that they're over there. Like, I guess I was fascinated by it, to be perfectly honest, and I believe that she saw them and maybe I believed it because it comforted me, but I don't know. I just found it very fascinating. I wasn't scared by it, and that's just me, and so I think that's why it was easier for me to handle that. I just a lot of times wanted to hear what she'd say and who it was and what was going on. I just found it very fascinating and I I believe that they were there with her through the whole time, even with me, especially towards the end, and it brought me comfort.
Speaker 1:And so it's just something that you're going to have to figure out what works best for you with it, and hopefully they're not scared, but they might be, and so you need to reassure them and be that safe place for them when these things happen. It's not always an easy thing to do, but you can do it. Enter their world. It's no different than handling anything else with dementia. Enter their world, agree, redirect them, try to stay calm. You know, and if you have to walk out of the room for a minute and break down and then come back, that's okay too. It's okay. And try to figure out how to redirect them and how to calm them down is the best thing that you can do when you're dealing with hallucinations with that.
Speaker 1:Dealing with hallucinations with that and hopefully you might have that good experience, like I did with my mom, and find comfort in it. You know, like I said, she found comfort knowing that her loved ones were there and that brought me comfort. So I hope this helped today. It's not an easy subject to talk about, but hopefully you found some kind of tools that can help or at least give you some ideas of what you can do if your loved one is experiencing hallucinations or to think about the future if they do do that, and you can get some tools going for yourself with it so you know how to handle it when it does happen for yourself. So hopefully you've enjoyed your cup of tea or your cup of coffee or a glass of wine, if that's what you needed today. Hopefully you found some comfort and you didn't feel so alone with this journey for that. So I will be back next time on Patty's Place, and so thank you again for joining me right here on Patty's Place.