When your loved one experiences delusions or hallucinations for the first time, it can be frightening and overwhelming for everyone involved. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we’ve learned how to navigate these challenging moments.
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Takeaways
Tip 1: Get in the Right Frame of Mind
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Tip 2: Validate and Reassure
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Tip 3: Tell Them the Truth They Need to Hear
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Tip 4: Distract and Change the Environment
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Tip 5: Debrief and Document
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Tip 6: Care for Yourself
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Key takeaways:
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Full Episode Transcript
Nancy Treaster
When your loved one has delusions and or hallucinations, particularly the first time, it’s probably going to be very scary for you. It was for both of us. We want you to be better prepared than we were.
Sue Ryan
We sure do.
Nancy Treaster
Now, a lot of what we’re gonna talk about today is probably gonna go against your natural instincts. In this episode, we’re gonna talk about how to be prepared, how to be present, and how to act, and we mean that literally, when your loved one has delusions and hallucinations. We have six tips. Sue, you ready to get started?
Sue Ryan
I am
Sue Ryan
We’re starting out this podcast episode with a disclaimer. The majority of our podcast episodes are about 20 minutes. And yet we feel like this one may last longer than that because this is a topic that is a very serious topic. And it’s sometimes scary for both our care receiver and for us. It’s very serious and we’re making it very real. We’re sharing.
stories from our own experiences and others to help you understand both hallucinations and delusions. The other thing we wanted to make sure we’re doing is often people use them interchangeably and we felt it would be really responsible for us to bring you a definition of what that is. And the National Institute of Health summarizes the definition this way.
Sue Ryan
Delusions are thoughts. They’re false beliefs held strongly despite evidence to the contrary. Hallucinations are sensory experiences. When the person sees, hears, smells, tastes, or feels something that isn’t there. Several common examples of this to give you kind of an idea of what they are is believing they’re not in their own home.
Someone is stealing their belongings, not recognizing who we are and not believing us when we say who we are, believing others are conspiring against them, seeing people who aren’t there and not recognizing themselves in the mirror. And Nancy, you’ve got a pretty powerful story about that.
Nancy Treaster
I do. My husband has we’ve discussed this before he’s got frontotemporal dementia, something called primary progressive aphasia, which means that what went first was his language capabilities. So when he was earlier in his diagnosis,
he would talk and he would you’d have he’d be having a conversation with you and he’s skipping words and using a lot of what I come to call jibber jabber. And he had no idea that what he was saying didn’t make any sense. And we would go along as best we could. And sometimes if he’s trying to tell me something that I have to say, you know, okay, show me show me because I didn’t understand at all what he was talking about. But he had a unique hallucination. And that was he didn’t recognize himself in the mirror.
He thought it was someone else. So he could have the longest best conversations with someone we came to call the man in the mirror. He would jibber jabber up a storm with the man in the mirror. They laughed. They had the best time. He’d point at him. I mean, he, the man in the mirror became his best friend.
And what was wonderful about is the man in the mirror didn’t ask him questions. The man in there understood everything he was saying. It was awesome. And that worked really well for us for a while. And then he started getting angry with the man in the mirror. He started getting scared of the man in the mirror. There was a point where I took all the mirrors down in our entire house, anything that was hanging. And I hung sheets over the mirrors in the bathroom because the man in the mirror was upsetting him so much.
And then one day he pushed the sheet aside and looked at the man in the mirror and started having a pleasant conversation with him again and all was good and I took the sheets down and we were back to the man in the mirror was a good thing. What’s important about that story is these delusions and hallucinations are very, very real to them. And so a lot of what we’re gonna talk about now is how to handle those because
Nancy Treaster
you’ve got to get in the right frame of mind that this is real to them. In many cases, they are frightened or angry or upset. Most delusions are not as pleasant as the man in the mirror who’s a good buddy. They’re very frightening and very upsetting and very scary. So when we get into these tips, you need to get in the right frame of mind that this is very real to your loved one. So let’s start with tip one.
Nancy Treaster
Tip one is about getting yourself in the right frame of mind when this happens. So when it starts, you may find yourself doing a quick check.
Nancy Treaster
Who are you? I’m Nancy. No, you’re not. As soon as you get that quick pushback, this is going to go against most likely your natural instincts, but you need to just stop, especially the first few times it happens, you’re going to be upset and horrified and you’re going to naturally want to argue. You need to get calm, calm down, take a deep, deep breath. And I can’t tell you how many times I told my mother-in-law this, you’ve got to put on your inner actor. This is your chance. This is your chance to win an Emmy. Every time put on your inner actor.
Sue Ryan
Become a thespian. Yep. Yep.
Nancy Treaster
Check your body language and really get in there with them. You’re going to have to meet them where they are. Don’t argue. Don’t try to convince them otherwise on their topic. Don’t try to reason with them. Once you get that first little pushback and you realize you’re in one of these delusions or in a hallucination, you got to get in there with them. And don’t rush through it. We’re gonna help you figure out how to get through it most of the time. But in your instinct after you do it a few times is you’re gonna wanna get to the end really fast. Don’t do that. Sometimes you lose your opportunity and you cause it to go on much longer than it should have because you tried to rush it. So don’t rush through it.
Sue Ryan
Okay. Nancy, it’s a really good point about getting right in there with them because we could be considered a stranger to them. We don’t think we’re a stranger to them. We may have known them 50 years and yet to them, we may be a stranger. And so when we meet them where they’re at and recognize that they don’t know who we are. And here’s the other. important part to help us through this is and not take it personally. Part of the reason we want to convince them, no, no, I’m your I’m your wife. I’m your husband. I’m your this or that is that we’re taking it personally. It’s like if we could convince them and we can’t.
Nancy Treaster
Yes. And we want to be just like you would be in a bad situation in a highly emotionally charged situation, you want to speak calmly, you want to speak slowly, you don’t want to add to a highly charged situation, you’re trying to diffuse. So put on your best actor or actress and start diffusing.
And one of the tricks you’re gonna use, we’ve got a whole tip on this, is you’re going to tell them the truth they need to hear. We’ll talk more about that later.
Nancy Treaster
All right, so you want to take us to tip two?
Sue Ryan
Absolutely. Tip two is to validate and reassure them. We’ve figured out where they’re at and we’re meeting them where they’re at. What we don’t want to do is actually ask questions about the delusion itself. So for example, if they say somebody stole my wallet, instead of saying, well, why do you think they did that? Or where do you think they put it? It’s to ask them how they feel.
and acknowledge that this is scary. I could see how that might make you feel scared or upset or whatever it is. Acknowledge what they’re saying and then listen without judgment to what they’re saying so we can get more about the underlying emotion they’re feeling. And when we acknowledge that this is what it is and we identify, yeah, I’m right there because as we said just a few minutes ago, we may be considered to them a stranger. So the more we can be reassuring and meet them where they’re at, I can understand how that might be frightening. And I could see how that would make you feel. That’s what would help them get more to a place of being normal. And then start using reassuring phrases with them. You’re safe, I’m going to be right here with you. And Nancy, that’s a story. You’ve got a really good powerful example of that too.
Nancy Treaster
My mother-in-law and father-in-law, both 90, lived three miles away and he had Alzheimer’s. He just passed away a few weeks ago, but he had Alzheimer’s. And his sundowning definitely started to cause him in the afternoons on a fairly frequent basis, I’d say four days a week, maybe five, to wanna go home and not know where he was.
Out of that probably 50 % of the time he didn’t know who my mother-in-law was and he thought she was a stranger. So he was in a very uncomfortable situation. He was in a strange place with a strange people and he was very concerned. Now remember he’s 90 very concerned that his mother and father didn’t know where he was. So he’s frightened strange place. My parents don’t know why I am they can’t come get me and I need to go home. So of course, I said this goes everything we’ve we’re coaching you on here goes against most of your natural instincts. And it did so with my mother in law. And so she would fight with him. No, we are home. We live here. No, we don’t live here. He’d say yes, you do. And when he knew who she was, still she didn’t didn’t he didn’t believe they live there. No, we don’t live here. Whose house is this, etc, etc. And she would try to reason with him and logic with him and he would just get more and more and more upset.
And so she would call me five o’clock in the afternoon. Can you come over? can’t calm him down. So I was always able to calm him down, but that’s because I use the tips that we’re talking about here. So I drive over, I’d sit down next to him, look him straight in the eye and I’d say, Pat, tell me what’s going on. And he would say, well, I need to go home. And I’d say, okay, all right. I understand that. My mom and my dad, don’t know where I am. I need to tell them where I am. I’d say, well, they know where you are. I said, they’re expecting you to come home, but not until tomorrow. And he’d say, tomorrow? Yeah, they know you’re coming home, but you’re just going home tomorrow. It’s getting late tonight. It’s getting ready to be dark. And you’re supposed to spend the night here tonight and then go home tomorrow. And he would say, tomorrow? I’d say, yeah.
Nancy Treaster
Okay. And then he was good. Now, I’m telling you, that’s why I go over there and I do the same thing every time. Now, if he wouldn’t calm down quite as quickly, I’d say, we’re here, you’re safe, it’s okay, everybody knows you’re here. I’d reassure him because he was concerned people didn’t know where he was. So everything we just said I would do consistently, finally got my mother-in-law where she would not fight with them for the first, then she thought she could fight with them for 30 minutes and then turn around and do what I just said. And I’m sorry you missed your chance if you did that. the best thing is as soon as you get that inkling, we’re in one of these, get in there with them in the world they’re in and start diffusing the situation and validating their feelings and making them feel safe and you’ll get through it. Anyway, that’s validate and reassure and that’s huge.
Sue Ryan
Reassure, yep, very good. How about tip three, Nancy?
Nancy Treaster
Tip three is the truth they need to hear. And Sue, you coined this phrase and that’s why we have it as the name of the tip, because I love it. So why don’t you at least tell us what we mean by that?
Sue Ryan
All right. I was raised not to lie.
And there’s an energy when you’re lying. You’re just, your body language is different. There’s just, you know, unless you’re really good at it, which I’m not, but the people lie. And so what I recognized is that it would be healthy for them for me to tell them something that could be the truth for them. It wasn’t the real truth, but it was the truth that they needed to hear. And so I did it from the energy of telling the truth. This is the truth they need to hear.
And it was confident. It was I’m telling them the truth, my body language. I could look them straight in the eye. I could do that. And that’s the truth they need to hear.
Nancy Treaster
And that’s how, with what Sue’s saying, that’s how you get your, your inner actor, inner actress going if you’re not a natural actress, is you convince yourself, this is the truth, this is the truth they need to hear. And it’s okay if part of the answer is, kick the can down the road. So when I would tell my father-in-law, you’re going home, it’s just not now, you’re going home tomorrow.
And that would make him comfortable. And what the natural instinct, I think what kept my mother-in-law from doing that is she was so worried that tomorrow he was gonna remember that he was supposed to go home. It never happened, ever. And I think honestly, if you can even worry, just take tomorrow, tomorrow’s not your problem. You’ll deal with it tomorrow if there is a problem, there’s not. But if there is one, you’ll deal with it across that bridge tomorrow. Right now you’re trying to diffuse the situation and it’s okay to the can down the road when you’re doing it.
Sue Ryan
Yeah, and you’ll learn what comforts them. You may try something and it doesn’t give them a lot of comfort. And just, it’s like an actor, you’re gonna ad lib your lines. But the energy of it is you’re telling them the truth. So your whole energy is there, yeah.
Yes. Yeah, and you’re trying to get in the moment and I’ll tell a story and this is probably the most difficult. One of the most difficult parts of my caregiving journey is when my husband forgot who I was. Now with my mother-in-law, my father-in-law, like I said, a couple of nights a week, he’d say, who are you? She’d say, I’m your wife. And he’d say, you know, you’re not. by the next and maybe he didn’t know she was all night long. And by the next morning,
It was fine. He knew exactly as she was. But for me, it was a turning point in our journey. And the way it started was one morning or one mid morning, we’re driving down the road. I’m driving, my husband doesn’t drive anymore at this point, and we’re driving down the road and we’re going to the bakery to pick up a birthday cake for his mother whose birthday is the next day. And he says, sitting in the passenger seat, he looks at me and he says, how do you like driving this car?
It’s an odd question. I’ve had this car for six years, but okay. I say, I really like it. He’s a car guy. So maybe just curious how the car drives. looks at me a couple of minutes later. He says, well, she really likes driving it too. But I thought, what’s an odd comment, but I mean, he’s got dementia. So who knows whatever driving, he says, now where are going? I said, well, we’re going to the bakery to pick up a birthday cake for your mother for her birthday.
Nancy Treaster
day. He says, you are gonna like my parents. They are the nicest people. I thought, my goodness, he has no unearthly idea who I am. Talk about a punch in the gut. But I held it together because we had enough hallucinations and delusions at that point, to where I said, Well, tell me about your parents and I put on my inner actress. And we went through the
Sit the day in the bakery, went to his parents’ house. had to kind of whisper. He doesn’t know who I am, so they wouldn’t say anything. We got home and I realized I hadn’t had a shower yet. And I’m like, I can’t go into the master bathroom, strip naked and take a shower in front of this man who thinks I’m a guest in his house. So I had to gather up my toiletries and some clothes and go upstairs to one of the guest rooms and take a shower.
The evening progressed, he still didn’t know who I was. So I slept up there. And that’s when I moved upstairs, because he never, as far as I know, figured out who I was after that. However, what’s interesting about the story is he did treat me like a guest in his house. He would say, now, where do you live? I’d say, I live upstairs. Okay, well, who lives up there with you?
I answered that question over and over again. If I wore my wedding ring, it would upset him. Who are you married to? I didn’t know you were married. It upset him if I wore my wedding ring. Several months into it, we had some friends come over for lunch. And we were eating lunch as a group. And remember, he’s got aphasia, so his language isn’t very good. And one of the friends turned to me, she says, my goodness, he’s flirting with you.
We did stop asking for Nancy at some point and he did start actually treating me like I was someone that he cared about, which was interesting. And so to this day, I don’t know, this happened four years ago, I don’t know if he cares about me and loves me as his wife of 34 years, or as his caregiver who he came to love over the last four years, I don’t know. But it…
Nancy Treaster
You know, I’ve learned to live in that I’m the caregiver who lives upstairs and it never went away as far as I know.
Sue Ryan
Well, I had an experience as well and mine did go away. So we want people to know both sides of it. And, you know, your story, I’ve heard others with stories like that and they are heartbreaking because, you know, like what I’ve always remembered is that deep down inside their heart still loves you. It’s just not able to express it in the same way. I had an experience with my husband where I was trying to get him to go to bed one night and
It was getting late and he was not interested in going to bed. So I thought, well, I’ll just go ahead and go to bed early, quote unquote, and maybe he’ll come in in a few minutes. So I said, honey, I’m going to bed. I’ll see you later. I go, I get in bed and I’m listening to hear anything. About 15 minutes later, he starts coming down the hall, walks in the bedroom, comes to the foot of the bed and says, who are you? And I said, well, I’m
I’m Sue, I’m your wife. He goes, no, you’re not. And he paused. And then he said, and I’m not gonna sleep with anybody who’s not my wife. So inside I’m like, yes, my husband is faithful. He’s got deep into his diagnosis of dementia and he is still faithful. This is a great man. On the outside, what I express is, I’m sorry, I got into the wrong bed.
Sue Ryan
Excuse me. And I’ll shut the door behind me. So I left the room, shut the door, and I went out into the living room and lay down so I could face the room bedroom. I thought, have no idea what I’m going to see the next day, what he’s going to be doing in there. But about 15 minutes later, the bedroom door opens and he walks up, he comes over and he looks down on me on the sofa. He goes, what are you doing here? I said, because I thought, aha, now he remembers who I am.
So I just thought I’d laid down. must have dozed off. He said, we, it’s time to go to bed. So, okay, honey, I’m on my way. So he had, and I called those dementia moments throughout our journey together. He would have periods of time where he was not there. mean, his eyes would be glazed over. Sometimes he was so fearful and you want to hug them and you can’t because they are part of their fears of who you are. don’t know their situation.
And so sometimes they pass and like Nancy with yours, I mean, it’s heartbreaking, but sometimes they don’t pass. So it’s being prepared for whatever that’s going to be.
Nancy Treaster
Okay, well, let’s talk a little bit about tip four, is what to do in that we’re diffusing, you know, like my father-in-law, how we the best way to diffuse.
Sue Ryan
Yeah. What we want to do is we want to distract them and change the environment. And that can look different. And we also want to interrupt their pattern so that we can if we can get them back on track, we can do that. So there are a variety of different ways to do that. One of them is based on whatever topic it is. We stay on topic, but we kind of distract them. So we’re not trying to change what it is. Example with my husband.
One evening he stood up and he said, it’s time to go home. Now, fortunately, this is actually something I had learned about in a support group meeting. And so I was all prepared. And I said, fine, honey, no problem. Let’s go. Would you like to use the restroom before we go? Use the restroom, off we go. And I said,
May we please stop at Walmart? And I used Walmart because that’s a store that usually has later hours. And I said, may we stop at Walmart on the way home? He’s like, yeah, okay. So we go into Walmart and walk around a little bit. just sometimes I would pick up a little something and sometimes not. And I would say, hey, honey, are you ready to go home? yeah, let’s go home. And then we would drive back home. So it had changed his pattern enough, but I wasn’t trying to alter it.
Then I got to thinking, well, what if I could do that with something that he was really interested in and not actually have to change the physical location? My husband loved ice cream. So I, and by the way, I don’t think he ever in his life turned it out. So I started when I got done with doing the dinner dishes, I would put out two bowls and two spoons. And if he did the time to go home, I would say, Hey, I think that’s a great idea. I was just about to get the ice cream out. Do you want to have a quick bowl of ice cream before we go? And he would be, yeah. And we would do that. And then he would forget that we weren’t actually at home. He would be distracted. So we weren’t changing the environment and.
And you know, so with my father-in-law, once he would say, okay, about tomorrow, I would immediately say, all right, well, let’s go into the den and watch TV, because I needed to stop the conversation and move on. I’d gotten him to accept it, and now we needed to distract and change the topic or change the environment, like you said. Yeah.
Sue Ryan
Another strategy is to gradually shift their attention, not a hard right turn, but make a small adjustment. And Nancy, I’ll go back to your story of where they thought that somebody had stolen their wallet and you’re looking for it. And one of the things you can have is something that they related to for a long time. It’s got a deep memory for them, something they had at work, something that they really love, something that’s got a lot of memories associated with it. And as you’re looking for the wallet or if there’s something else and you say, look at this. honey, this is such a, and start talking about that and see if they can start gradually focusing on that. And if we can again, break that pattern and have them focus on that, we have a better opportunity to then pick up a different conversation.
Nancy Treaster
Right? Or even in the, you know, someone stole my wallet. Great, let’s go. I’m sorry, but let’s go look for it. You know, you want to get on board and get in there with them, go look for it, and then say, you know what, let’s take a break and get something to eat. Let’s get some ice cream, as you said, you know, another good example. just and then, you know, somehow that just changes the subject and the environment and the topic and, and, and they’re distracted enough to forget that they are focused on their wallet.
Sue Ryan
Right. And pick something that they like. If they like music, say, let’s listen to some music. If they like TV, we’ll do that. If they like ice cream, pick ice cream. Pick something that they like. Walk the dog. Whatever it is, pick something that they like and say, let’s take a quick break and do this. And then we’ll get back to it.
Nancy Treaster
And that’s important to tip five, Sue, because tip five is about debriefing. And part of debriefing is recording what happened and also recording what worked. Because how did you diffuse the situation successfully? Because number one, the next time you get into that situation, you don’t wanna have to try to remember everything, what worked. Secondly, if other people are taking care of your care receiver, you wanna give them a playbook on how to diffuse the situation when it happens.
Sue Ryan
And that’s huge. mean, it’s so huge because we tend to focus on us being the caregiver. And yet there will be times when somebody else is and the more information we can be gathering that supports them and it’s what works, what didn’t work. So they’ve got a complete idea and you do as well, the things that you can be updating.
Nancy Treaster
I actually had to do that at one point when my mother-in-law ended up in the hospital and my brother-in-law and his wife had to come take care of my father-in-law for a couple of days and he was doing the sundowning. So I had to give them a rundown on what to say, what not to say, what works, what doesn’t work to try to help them be prepared and sure enough it did all happen. So they at least had the information they Okay, so part of recording, debriefing, mean part of debriefing is recording what happened and also what works and what doesn’t work.
Nancy Treaster
And then try to identify any potential triggers. Of course, we already talked about late afternoons, sundowning, quite common. Sue calls that tired brain syndrome, which is legit.
Sue Ryan
Yeah. And Nancy, I’d actually like to share a little bit about that and why I call it tired brain syndrome. The reason I call it tired brain syndrome is that’s what it is. It’s in the afternoon when their brains are tired, their brains are working extra hard all day long and they get tired. And if you can tell what my dad got, his brain got tired at about the same time. And what we started doing was preempting that we would get him to have quiet time. We would calm things down. We would put soft music on. We would sit. We would have it be where he could get restful so that his brain could kind of recharge. And that’s one of the things that’s really important. When you see a pattern that’s like that, remember that their brains do get tired and try to help with that.
Nancy Treaster
Is there a particular situation that causes it? People, there something in the environment? Are there shadows? There’s lots of things that could trigger it. The mirrors, obviously, in my house was one thing I had to take down at one point. So try to understand what might be triggering it. Also understand there might be medication, a sort of medical reason that it’s triggered. My aunt’s husband had Parkinson’s and he started seeing people in the bathroom in the bedroom.
She got on board and said, well, they’re not hurting us. It’s going to be OK. We’re just going to stay away from them. They’re not going to hurt us. But then talk to the doctor. And sure enough, one of the medication changes they had made, common side effect, was hallucinations. And ironically, hallucinations was most commonly seen people. So they were able to adjust his medication. UTI is another good example. They can really cause delusions and hallucinations, as well as other challenges.
Sue Ryan
Absolutely. And I had a coaching client whose husband developed a urinary tract infection. In a number of our podcast episodes, we talk about making sure our loved ones are drinking plenty of water so that they’re not getting dehydrated and they’re not getting urinary tract infections. Her husband, all of a sudden started having hallucinations and his were very, very profound and he felt like they were attacking him and he was
pushing and it got to be, she was afraid for herself and she was also afraid for him and talked to the doctor about it and they checked him for a urinary tract infection and sure enough it was. One of the challenging things about the urinary tract infection is that it manifests itself in so many different ways and we wanna make sure that when we are experiencing a hallucination or a delusion that we make sure a urinary tact infection is that underneath it.
Nancy Treaster
So I do believe a part of debriefing, unless it’s just something that happens commonly, if you get an uncommon situation, definitely talk to the doctor about it, because there are multiple medical challenges that could be part of the problem. Okay, let’s go on to tip six.
Sue Ryan
Tip six. We have been the best actors we could possibly be. And now we have walked off a stage. The acting is over and now it’s time for us to deal with us. We didn’t go to school for this.
Sue Ryan
We often had something happen. We have absolutely no reference reservoir for, we didn’t have any idea what was going on. And so it’s important for us to explore our own feelings, explore how we feel about this. Give you a quick example. It was my grandmother’s birthday and we were all sitting around and just all of a sudden she looked over and said, who are you? And I said, well, I’m Susie, I’m your granddaughter. No, you’re not. Who are you? Why are you here?
And it actually angered her. My being at her family birthday party was angering her. And we did the good acting part and everything. And part of me is going, well, this is my grandmother. mean, you know, here she is. She doesn’t know me. She doesn’t like me. You’re like, that’s worse. I mean, if I was a stranger, but at least she liked me, that would be one thing. And so especially when we have this happen the first time and it can be a real punch in the gut. It can also be very scary. We want to make sure we’re getting support for this. So talk to people, talk to your family members, talk to a support group, talk to a counselor, talk to people about this because this is as real for you as it is for them. And I’ve had a lot of these in my caregiving journeys. It’s very rare that you only have one.
Nancy Treaster
Right, that’s a very good point. And just from the emotional side of it, I told the story about my husband forgetting who I was. Well… every afternoon for quite a while, a couple of weeks at least, when he would get tired brain syndrome, we’d sit down to watch the news and all during the day, he would treat me like a guest in his house and I sort of adjusted myself to where I was his caregiver and helper and I’d drive in places and he was very cordial and everything was great. But when he got tired in the evenings and we’d be sitting and watching the news, he would literally beg me, beg me to help him find her, which her is me. And he would be crying. would say, if you’ll just, and he couldn’t drive. So imagine how scary and frustrating it is not to be able to drive. He didn’t know how to get there, but he was basically begging me, if you’ll just take me there, if you’ll just take me there, they’ll know where she is. They’ll know where she is. And what he really meant was for me to take him to my office.
Now, this was in the middle of COVID, there weren’t anybody working in any offices anyway. But he just literally was crying, begging me and this happened night after night after night, because he couldn’t find me. And the part that hurts me the most and this I struggled to tell this without crying, but the part that hurt me the most is early in his diagnosis, when he did still understand for the first couple of years, he would be frightened about what was going on and I told him time and time again, we’re in this together, I’m not going anywhere, I will always be here. And it was so hurtful to me, and I hurt so much over the fact that he thought I was gone, and he thought I wasn’t there, and didn’t know where I was, and it upset me. My sister, I joked with her and called it a boohoo fest. I’m sitting there,
Nancy Treaster
on the, holding his hand and looking him in the eyes and I’m crying, telling him it’s gonna be okay. He’s crying, begging for me to help him. It was really, really one of the most difficult times in our journey. And part of it was the emotion for me, realizing or feeling like he thinks I’ve deserted him and he doesn’t know where I am.
Sue Ryan
And Nancy, thank you for sharing that because it’s so deeply personal and it’s so emotional. And I appreciate that very much that other people can hear it and learn from it. And I think summarizing this tip with one phrase is give yourself grace upon grace for us going through this. Again, we don’t have a reference reservoir for it. We didn’t go to school for this. It’s not going to manifest itself the same way. It’s our loved one. And
what we want to protect them, we want to help them, and we can’t do what it is we want because we can’t meet them where they’re at. Like physically, we can’t go give them a hug because they don’t know who we are. And so we’re going to meet them where they’re in the best way we can and give yourself a ton of grace on this. Do not judge yourself.
get support, talk to other people, and you’re not alone.
Nancy Treaster
And if you weren’t a good actress this time, you’ll be a better actress the next time. You can do it. Let’s summarize. In this episode, we talked about how to be present. Get in there with them, right? How to literally act when delusions and hallucinations happen. We shared six tips. The first tip was to get yourself in the right frame of mind, calm body language you know put your best actress on second validate and re-reassure validate their feelings and reassure them third don’t be scared to tell them the truth they need to hear think of it that way that’s how you’ll get your your good actor or actress turned on fourth distract distract change the environment get out some ice cream.
Fifth, debrief when it’s over. If it’s not a common occurrence, talk to the doctor. Make sure you’re documenting what works and what doesn’t work. And lastly, when the acting’s over, give yourself a lot, a lot of grace and get support. If you have tips for when delusions and hallucinations happen, we’d love for you to share those on our Facebook page or our Instagram page, you will find both of those links in the show notes. What we talked about today is a very emotional topic and very difficult, but these tips should help you get through it and come out the other side.
Sue Ryan
We’re all on this journey together.
Nancy Treaster
Yes, we are.
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