Transcript
Speaker: Hi guys, thank you for joining us today.
Speaker: I wanted to have this conversation because as I spoke to friends about the podcast, dementia was a topic that came up over and over again, and it is most certainly a type of loss.
Speaker: Joining me today to talk about caring for a loved one with dementia is a true angel on this earth, Lori Halberg.
Speaker: Lori wants it to be clear that she is not a doctor, nurse, or expert in this field.
Speaker: She is a volunteer with tons of experience.
Speaker: She has volunteered with hospice and worked with people with dementia for many, many years.
Speaker: She has often sought out specifically to work with those that others find to be quote unquote challenging because of her infinite patience and wisdom.
Speaker: She has a natural gift for caring for people, and she is going to share with us some of the things she has learned and witnessed over the years.
Speaker: I hope you enjoy your time with Lori and learn as much from her as I did.
Speaker: Thank you.
Speaker: Hi, Lori.
Speaker: Thank you so much for being here today.
Speaker: Hi, Jamie.
Speaker: Thanks for having me.
Speaker: You know, when I first started this podcast and was thinking about all the conversations I would be having, dementia was not on my radar.
Speaker: It wasn't something that I was thinking about until I started talking to friends and family.
Speaker: And it seemed like every conversation that I had
Speaker: dementia came up as a topic and I was really surprised at how prevalent it is in our communities right now and so I thought that it was definitely something that we need to talk about.
Speaker: Yeah it is it's a lot of dementia out there that's for sure a lot of people don't know about it either.
Speaker: I'm excited to talk to you about it because I know you have a lot of experience.
Speaker: I also know that you want it to be very clear that you're not a doctor or you don't consider yourself an expert, even though I think your life experience sort of makes you one.
Speaker: And so just so the audience knows, this is a conversation between friends and just someone who has spent a lot of time in this world dealing and comforting people with dementia and their families.
Speaker: And I think it is going to be a really helpful conversation.
Speaker: And I would love, Lori, if you want to just kind of give a background about the work that you've been doing.
Speaker: in nursing homes with dementia patients, how you got into it and why it is so meaningful to you?
Speaker: Well, I got into it when I was 15 years old.
Speaker: And at 15 years old, I really didn't even know the word dementia.
Speaker: I mostly got into it because of the elderly.
Speaker: I love the elderly people.
Speaker: And I was my grandma.
Speaker: I have a great family.
Speaker: And a lot of them are gone now, but I've always had a great family.
Speaker: And my grandma was very, very, just a great person.
Speaker: And she was a big part of my life.
Speaker: And even at one point I lived with her, even though my parents were a mile down the road, just because I liked taking care of her.
Speaker: And she didn't need taking care of.
Speaker: I just liked being with her.
Speaker: She was a lot of fun.
Speaker: And I started seeing that I was noticing my friends never really visited their grandmas or they're just too busy.
Speaker: And I thought, I wonder why grandmas are a lot of fun.
Speaker: So,
Speaker: That's what made me start going to nursing homes at that point.
Speaker: And I would go to nursing homes just to be their friends, really.
Speaker: I just played bingo, or I sang with them, even though I can't sing, or I took them out on walks, or I played games with them, or just listened to their stories.
Speaker: That's how it all started.
Speaker: And I didn't have any one particular patient.
Speaker: I just saw a lot of elderly people.
Speaker: They were just a
Speaker: And they gave a lot to me.
Speaker: Their stories were really interesting.
Speaker: And I was seeing how people don't visit a lot of people in nursing homes.
Speaker: And I started thinking about it.
Speaker: And I thought, well, I think people...
Speaker: and this is my personal opinion, I just think people are afraid of their own mortality.
Speaker: And they go into a nursing home and they think, wow, this is awful.
Speaker: I don't want to be like this.
Speaker: But you can't help what's going to happen to you.
Speaker: Nobody knows what's going to happen to them.
Speaker: So that's how nursing homes are very important to me because of that reason.
Speaker: And as I got older, I had...
Speaker: kids when I was young.
Speaker: So I started taking my kids when they were a little older, like four and five.
Speaker: Now I'm in my twenties and I'm still going to nursing homes and, you know, I'm raising a family.
Speaker: So I still spent a lot of time there, but my family was the most important person.
Speaker: And then years went by and I'm still going, I'm still going.
Speaker: And then it's been about 20 years that I got into the hospice part of it.
Speaker: And that's when I learned more about dementia.
Speaker: And that's strictly what I do now.
Speaker: So I've been involved with the nursing home here and where I live.
Speaker: And I constantly get patients and they only give me patients that have dementia.
Speaker: And a lot of them are in hospice too, because I also do hospice.
Speaker: But it boils down to the fact that
Speaker: that dementia patients, it doesn't matter what you have or who you are or where you come from, we're all human beings.
Speaker: Every person out there is a human being and every person needs recognition and love and validation.
Speaker: So whether you have dementia or not, people like to feel like they have some kind of purpose.
Speaker: So the dementia patients, I find a lot of people just don't have time for it.
Speaker: They get angry that they forget stuff or they get angry that
Speaker: they can't remember something that they told them.
Speaker: And I'm not like that.
Speaker: I'm like, what does it matter?
Speaker: You know, nobody has to be right.
Speaker: It's all about making that person feel comfortable.
Speaker: And so that's, that's how I got started in it.
Speaker: Well, I love that story.
Speaker: And it's, it just speaks so much to who you are as a person, one, your patience and your heart and, um,
Speaker: I think that you have a real gift and you,
Speaker: I appreciate that you're here to share some of your wisdom because it obviously comes very naturally to you to spend time in this way and to support in this way.
Speaker: And for people that it's not so natural, I think this is going to be so useful just to hear your perspective.
Speaker: And I also just wanted to say, you know, back to your history with visiting nursing homes, that I think that that is also challenging
Speaker: really profound that you connect that with the fear of dying for people themselves, that whenever you go into this place where there's a lot of older people, that you can't help but think about your own mortality and how that makes people want to run away.
Speaker: But we all will be old people someday, God willing, that we live long, full lives.
Speaker: And so it's not something to be afraid of, and it's something to embrace.
Speaker: And I shared with you when we first met as well that whenever I was a kid, my Girl Scout troop went to a nursing home and
Speaker: spent the day volunteering.
Speaker: And there were a couple of people that asked if I would come back.
Speaker: And I said, of course I will.
Speaker: And so I would go back and play bingo and play cards and do things with them.
Speaker: And I just, I loved hearing their stories.
Speaker: And I think it really helped me to feel comfortable with that, with that age and, and just the aging process.
Speaker: And so I don't want to spend too much time there, but I just wanted to touch on the nursing home piece because I think it's something that everyone should consider and should consider going in and volunteering for a day or bringing their children and just kind of coming face to face with that.
Speaker: Thank you for saying that part.
Speaker: That's what I think, just doing just 53 years of this, because I watch people and what they say, and a lot of them, not everybody, but a lot of people are, oh, it's so awful in there.
Speaker: But a nursing home, you have to understand that the people in the nursing home
Speaker: most likely a lot of them, not everybody, realize that's their last place.
Speaker: They're going to probably pass away in the nursing home.
Speaker: And every one of us, like you said, is going to age.
Speaker: And I believe you need to age gracefully.
Speaker: And of course, a lot of us don't want to be in a nursing home, but none of us knows what's going to happen to us at all.
Speaker: I just like to take every day for what I'm given and try to bring joy and
Speaker: into those people's lives in the nursing homes because like I had said before, these people didn't ask to go there and they didn't ask to get dementia for sure.
Speaker: And most likely somebody has already taken them away from their home, taken their car away because they can't drive anymore.
Speaker: You only get to wear a couple outfits a week because that's all the closet holes in a nursing home.
Speaker: They tell you when to eat and what to eat.
Speaker: You've lost your, maybe your spouse already, you might have even lost some children or you never had children.
Speaker: You've lost a pet if you had a pet.
Speaker: So a lot of your independence has been taken away for sure.
Speaker: So if you can, that's why it's so important for me to just validate that they are loved and they are a human.
Speaker: And so I try to find out, even with dementia patients, what they like, what they're about, and that's what I focus on.
Speaker: And it's all about them.
Speaker: And they get excited to have a visitor.
Speaker: And I don't even think that it's great for me because I'm only giving them a little bit of time.
Speaker: These people are there 24-7 with not a lot of visitors and not a lot of input on what they can and can't do kind of thing.
Speaker: So if I can bring the joy for a little while each week or once they're on hospice, sometimes it's more than that, of course.
Speaker: But anyway, that's where I'm coming from on that.
Speaker: Yeah, no, I love that.
Speaker: I think that's a great segue into talking about dementia specifically.
Speaker: You've spent so much time with people with dementia.
Speaker: And while no two individuals are alike, there are some common threads or some ways in which you have found that you should be with all people.
Speaker: really, but especially with people that have dementia, right?
Speaker: Because if you can come in in a certain way, there's a way to kind of make them feel validated.
Speaker: There's a way to make them feel comfortable.
Speaker: And so I would love to talk about some things to keep in mind when visiting a person with dementia,
Speaker: I know this all takes practice, right?
Speaker: If you haven't spent a lot of time with someone with dementia.
Speaker: And I know that if it's someone that you're very close to, it has to be hard to see them in this different state, right?
Speaker: And you're going to feel sad and you're going to feel angry.
Speaker: But
Speaker: remembering that your feelings are toward the sickness and not toward the person, that they didn't choose this.
Speaker: Like you said, I think that's such a powerful way of looking at it.
Speaker: I would love for you to talk about, you know, how people often take the actions of their loved one very personally, or they don't,
Speaker: get upset because they feel like they're doing it on purpose.
Speaker: So maybe we can talk about, you know, remembering it's not a choice and not taking things personally.
Speaker: Well, I'd like to start with saying one thing is that it's definitely a different challenge if you personally have a loved one with dementia versus me who just gets a patient that has dementia.
Speaker: I hardly ever know who they are.
Speaker: But I can understand if it was your own loved one, which I have not had in my own family, it would be a little different challenge.
Speaker: But that's where I mediate a lot because I do get family members that do say, I was just here yesterday or I already told you that or they don't want to go because they don't remember the person anymore.
Speaker: the mother doesn't remember the daughter or the son, whatever.
Speaker: Well, I think that's wrong because then you're taking things too personally.
Speaker: And it's not about taking things personally.
Speaker: It's about this person did not choose to get this.
Speaker: And they probably...
Speaker: maybe not in all cases, but they probably were a good family member at one point, and now they need extra love and extra care.
Speaker: So if they want to, you shouldn't be upset because they're not the way they used to be.
Speaker: I had to go through this testing thing one time.
Speaker: It wasn't really a test.
Speaker: It was this class, so to speak.
Speaker: And they were trying to teach us about how a dementia patient actually feels.
Speaker: And this might help a lot of people because I didn't know this myself, but if you take a pair of
Speaker: gardening gloves that are quite thick, those big old white ones that people have, and you put them on your hands, and then you put dark glasses on, and then you put headphones over your ears with music on that's not even your kind of music, kind of like annoying music, actually.
Speaker: And then you...
Speaker: This is what they did to me.
Speaker: And then I was given the challenge of trying to listen to a lady tell me what to do.
Speaker: And she gave me this list of things to do.
Speaker: One of them was turn o'clock to eight o'clock and set a table and fold some laundry and take something out of the refrigerator.
Speaker: It was a few different chores.
Speaker: Well, first of all, I was trying to even watch her lips and figure out what she was saying because this music was blaring in my ear.
Speaker: And I had these dark glasses on and I'm in a room where they turn the lights out so you can't even see very well.
Speaker: And then they give you 15 minutes to do those chores.
Speaker: And that's what a dementia patient, a lot of them feel like.
Speaker: Their hands feel like they're really thick.
Speaker: You know, they can't see as well that their mind is mumbled up because of the music and the darkness.
Speaker: And it's not their fault.
Speaker: And a lot of them know that something's not correct.
Speaker: A lot of them know that they're not quite right.
Speaker: And a lot of them can...
Speaker: come across like they're fine, but they really aren't because they've learned how to manipulate different things.
Speaker: And it depends on their stages.
Speaker: But those chores for me to do, who's a normal person without dementia, were very difficult.
Speaker: And they only gave me 15 minutes and I spent
Speaker: like 12, trying to get the clock to say 8 o'clock because your hands that are very thick with those gloves can't turn that little dial thing.
Speaker: And then they wanted me to write a grocery list and the pen doesn't write good because it's hard to write in the dark.
Speaker: With hands that don't work.
Speaker: With dried hands, yeah.
Speaker: It's hard to fold laundry.
Speaker: So that's kind of how they feel already.
Speaker: And like I said, there's several diseases of dementia, and they all affect people a little bit differently.
Speaker: But the bottom line is, again, they're humans.
Speaker: They need to be loved.
Speaker: And I get quite upset when people get upset with them.
Speaker: And sometimes they can't be reminded.
Speaker: So when people say, you know, I told you that yesterday, he died a year ago or whatever, all that does is bring up a memory to them that, oh, I didn't know he died.
Speaker: And then they get sad and then they cry because you're making them cry.
Speaker: You're telling them something that they don't know at that moment because they don't remember that.
Speaker: So it's making them very sad because they're thinking, oh, somebody just died and I didn't even know they died.
Speaker: And within a few minutes, they're going to forget that anyway, a lot of them.
Speaker: So it's not important that you correct people.
Speaker: That's what I really like to stress is you don't ever correct a dementia patient ever.
Speaker: It doesn't do any good.
Speaker: It doesn't matter if they're right or wrong.
Speaker: It doesn't really matter to anybody.
Speaker: they think they're saying something that they know is true.
Speaker: Right.
Speaker: Most of the time it's not.
Speaker: Yeah.
Speaker: I mean, and back to the point about the exercise that you went through, I mean, it's a reminder that this is, it's a disease and it's causing brain damage, right?
Speaker: So their brain is different.
Speaker: Their brain is not the same.
Speaker: And when you're trying to correct them,
Speaker: You aren't going to fix them.
Speaker: You're not going to get them back on track, right?
Speaker: No, you're not.
Speaker: They are just going to be stressed out or like you said, like relive
Speaker: a horrible memory that at that moment they didn't know was real.
Speaker: And so I think that it's probably natural if people have not spent time with dementia patients to think they're being helpful if someone is saying something that's just totally wrong.
Speaker: And so I just wanted to really pull out that point that it is not helpful.
Speaker: It is not helpful.
Speaker: Correct.
Speaker: And it's so much, it's so more important to be in the moment.
Speaker: And that's what I do with all dementia patients.
Speaker: I live in that moment.
Speaker: And that moment is usually not correct, but it doesn't matter to me.
Speaker: It matters to them.
Speaker: So when they tell me that there's snakes under the bed and they're sitting on the bed and they're afraid, I'm
Speaker: I don't correct anything.
Speaker: I just get on the floor and I just look under the bed and I say, well, I don't see any snakes now.
Speaker: That must have been a horrible feeling.
Speaker: But you can come off the bed now.
Speaker: And they do and they just want to be.
Speaker: Like I said, it doesn't matter.
Speaker: What does it matter if there's snakes or not under the bed?
Speaker: We all know there's no snakes under the bed, but they don't know that.
Speaker: So if you correct them and say you're not, you're just seeing stuff, then to me, it just gets them upset.
Speaker: And like I said, I have lived in World War II.
Speaker: I've missed weddings that I was supposed to go to from dementia patients that were mad that I didn't go to their wedding, even though I knew that they didn't have a wedding.
Speaker: And I've been somebody's granddaughter before.
Speaker: And I just, I don't, I don't,
Speaker: necessarily make them make the story 100% correct.
Speaker: When the lady, the one lady that said that I was her granddaughter, and she I was lost, and the whole family was looking for me.
Speaker: All I said was, I'm sorry that you were scared that I was lost.
Speaker: But here I am now.
Speaker: Let's, let's just get to know each other kind of thing.
Speaker: And I didn't say I was a granddaughter, but I didn't deny it either.
Speaker: I just let her think that for a second.
Speaker: And, and a whole hour went by.
Speaker: And she asked me who I was.
Speaker: So that's what I'm saying in the scheme of things.
Speaker: Does it really matter, you know, to correct people?
Speaker: To me, it doesn't.
Speaker: To me, it is more important to make that moment I'm visiting them happy.
Speaker: And I can be on a thousand different subjects, but that's okay.
Speaker: Yeah.
Speaker: Yeah.
Speaker: I mean...
Speaker: Every human wants to feel heard and feel validated.
Speaker: And so I can imagine if you're confused and you're feeling overwhelmed or embarrassed because something's not quite right, that
Speaker: All you want is for someone to say, yes, I hear you.
Speaker: Yes, that's right.
Speaker: And to help.
Speaker: So I love that you gave the example of the snakes.
Speaker: And I would love to hear some other stories or just some examples so that people can, you know, if a loved one...
Speaker: starts going into a direction that is not real, like that they can have some preparation for how they're going to handle that.
Speaker: We talked about that some patients can be very angry and maybe they're upset with you about something.
Speaker: I read that they will often lose or misplace items and then they have no idea that they're doing that.
Speaker: So they just think, well, it must be you that took it from me.
Speaker: And so can you talk maybe a little bit about how to diffuse anger or if someone is accusing you of something instead of, you know, taking it personally and getting in a fight with them?
Speaker: What is a way that they could manage that?
Speaker: You have to really understand you cannot take any of this personally.
Speaker: I personally have not been accused of anything bad, but a lot of the nurses have and the staff.
Speaker: So when I have had several in all these years, patients say they're stealing my keys or they don't even have keys usually, but they're stealing my keys or they've
Speaker: They stole my clothes or they ate my lunch or whatever.
Speaker: And all I usually do is validate that feeling really quickly.
Speaker: And I'll say, I'm sorry that your keys are missing.
Speaker: I'm sorry that you didn't get lunch.
Speaker: Would you like me to get you some more food?
Speaker: And I'll know they have eaten lunch and I'll know they have no keys.
Speaker: But
Speaker: it doesn't do any good to argue with them because then they just get angry a lot of times, not everybody, but they do.
Speaker: And the one thing about dementia patients, a lot of them is they, they get on a subject and they stay very focused, very focused on one thing.
Speaker: And it could be as simple as I didn't get breakfast today or, um,
Speaker: nobody's visited me for the longest time.
Speaker: And it's much easier to say, I always say, I'm sorry.
Speaker: I'm sorry you feel like that.
Speaker: I'm sorry that you didn't have a visitor, but I'm here now.
Speaker: Is that going to help?
Speaker: I'm sorry you didn't have lunch.
Speaker: Can I get you something to eat?
Speaker: I'm sorry that they misplaced your dress.
Speaker: What did it look like?
Speaker: And I'll see if I can find it.
Speaker: But a lot of people just go, you don't have a dress like that, or you don't
Speaker: You just ate lunch, but they don't remember that.
Speaker: So to me, it's, it's, again, it's not important to correct them.
Speaker: A lot of times they just want to hug.
Speaker: I try to make them feel like they're special.
Speaker: And I try, it's very difficult to change the subject.
Speaker: If they get focused on one thing, which I've had many times, it can be really hard for me to diffuse it.
Speaker: And I can to a point, and then they'll go right back to that subject.
Speaker: Cause they get set on this one subject and I,
Speaker: I don't know when the, when the, I, you said you wanted a couple stories.
Speaker: I probably have thousands of stories.
Speaker: It's, you know, the one, the one lady that she got so mad at me because I missed her wedding, she said, and there was a picture of her and her husband in a frame and he had been gone a long, long time.
Speaker: And,
Speaker: She, a long time, and yes, she had been married quite a few years.
Speaker: And all I said was, I'm so sorry I missed your wedding.
Speaker: I didn't get the invitation.
Speaker: And she immediately went to blaming her mother.
Speaker: And she said, my mother probably didn't send any out to you because she told me I had to limit the guests.
Speaker: And I said, well, tell me about your wedding.
Speaker: And she told me about her wedding, but it was from like the 19th.
Speaker: the way she was describing stuff.
Speaker: So probably, I don't know for a fact, but it probably was her wedding back then, you know, and I just listen, you have to have, you have to really be able to listen very well.
Speaker: I never interrupt them.
Speaker: I just listened to the stories and, um,
Speaker: And just agree.
Speaker: Like I said, I just validate her, you know, and sometimes you have to watch for changes and that can be a medication problem.
Speaker: And I've had that happen several times where if a person that has dementia is one way one day and the next day completely different, whether they're really hallucinating or
Speaker: And just to say, the lady that saw the snakes under her bed was having hallucinations, and they had changed her medication the day before, and they took her off it because that's what was causing it.
Speaker: But that's what I'm aware of.
Speaker: I always see changes.
Speaker: So I...
Speaker: always ask if there's been medication changes.
Speaker: And I have no authority to change anything, which I don't, but I at least research it a little bit with a nurse or whoever's there and make sure that it's the right medication for them because maybe it just might not be.
Speaker: Maybe that's causing some kind of their fear or their being afraid.
Speaker: And a lot of dementia patients, women especially, like babies.
Speaker: So I bring a lot of baby dolls.
Speaker: And a lot of the kids get mad at that and say, you know, well, that's my mother.
Speaker: She shouldn't be playing with the doll.
Speaker: Well, that might be your mother, but she's also in the state of a young child now.
Speaker: I had a great, great grandmother that I met.
Speaker: She was like 104 when I was a kid.
Speaker: And we went to visit her and she had dementia and she had a
Speaker: baby doll sleeping in a bassinet.
Speaker: And the whole time we were there, she was taking care of the baby and she was asking us to be quiet because the baby was sleeping.
Speaker: And my mom was like, just let her go with it.
Speaker: Just pretend like she's playing pretend like your friends were not going to correct her.
Speaker: And, and she, that was, that was her world.
Speaker: And, you know, as
Speaker: you're telling these stories, it makes me want to cry because I'm just imagining the different scenarios and what a blessing you are to these people because I
Speaker: I can imagine the opposite whenever they're just shut down and told, no, that's wrong.
Speaker: And what are you talking about?
Speaker: And for you to come in and just make them feel normal.
Speaker: I mean, at the end of the day, that's what this kind of feels like to me is that you're just normalizing wherever they are.
Speaker: And letting them know that they're fine and you're right there with them.
Speaker: And whatever feelings they've been of worry or anxiety or embarrassment, that as long as you're in their presence, everything's okay.
Speaker: And that you see it too and you feel it too.
Speaker: And I just think that's so beautiful.
Speaker: Dementia people love animals.
Speaker: They love kids, most of them.
Speaker: They love music.
Speaker: You know, one lady I had, like, I don't even remember the name of the song, and I found it on my phone, and every time I was with her, that's what she wanted me to play.
Speaker: And that's what we did.
Speaker: We just listened to that song over and over and over and 10,000 times because she loved that song.
Speaker: And I try to find a subject that
Speaker: And they've given me a patient now that I have that they said it was difficult.
Speaker: So they said, hopefully you can get them to talk.
Speaker: It only took me one visit before I figured out what his subject was about.
Speaker: And this particular man, his subjects are the Air Force.
Speaker: Mm-hmm.
Speaker: So I went and got some, and he used to fly.
Speaker: So I went and got books on magazines actually, because they don't really like to read.
Speaker: You have to give them magazines and look at pictures.
Speaker: And we went over the pictures and he knew every one of those airplanes and he knew all about the planes.
Speaker: And I finally, well, I didn't finally, it didn't take me long at all.
Speaker: I just found a subject that he liked and that's what we talk about.
Speaker: And it's the same subject all the time.
Speaker: And it's the same conversation.
Speaker: It makes his day.
Speaker: And now it's where he laughs all the time.
Speaker: And when he sees me, he's really excited.
Speaker: And that's what he talks about.
Speaker: I love that.
Speaker: Another lady I had loved folding laundry.
Speaker: So once I figured that out, I just brought her baskets of laundry from the nursing home.
Speaker: And she would fold it all.
Speaker: That was her thing.
Speaker: It was probably soothing.
Speaker: Like if she was a house or, you know, a homemaker.
Speaker: Yeah.
Speaker: And that was her life is like folding laundry and...
Speaker: as the kids were at school or whatever.
Speaker: Exactly.
Speaker: And it brought back these comfortable memories.
Speaker: And one lady used to like to set the table.
Speaker: And I remember once a nurse got mad at her and said, she can't do that.
Speaker: And I intervened and I said, why?
Speaker: Why can't she set this table?
Speaker: And she said, we've already eaten lunch.
Speaker: And I said, I don't care if you've already eaten lunch.
Speaker: I said, I care about this lady that wants to set the table.
Speaker: So she would set the table and then she'd unset it.
Speaker: And she did that for the whole afternoon, pretty much.
Speaker: It didn't cause any trouble.
Speaker: It didn't do anything to anybody.
Speaker: That gave her joy setting that table for a long time.
Speaker: That's okay.
Speaker: I love that.
Speaker: Yeah.
Speaker: I mean, I think that's such a great point.
Speaker: And that
Speaker: Whenever it's someone that's a family member or someone that you're close to, you can dig back and think about like, what are the things that brought this person joy?
Speaker: You know, whether it was 10 years ago, 20 years ago, 40 years ago, what were their hobbies?
Speaker: What were their interests?
Speaker: And to come prepared, like you said, br ing in magazines or photos or books
Speaker: you know, whatever you can to kind of spark these memories of things that they loved.
Speaker: So I think that's a really big one to point out.
Speaker: Like I said in the beginning, it is harder for a family member, and I get that.
Speaker: But if the family members could just try to understand that that person will most likely not ever be the same again.
Speaker: So the bottom line for them is,
Speaker: Yes, it is very stressful.
Speaker: And sometimes dementia patients forget to eat.
Speaker: They forget where the bathroom is and there's little problems in your house and whatever.
Speaker: And it's very, very hard.
Speaker: And you have to always take care of yourself too.
Speaker: And not all dementia patients can stay at home.
Speaker: Some can, especially if you have the means to let them stay at home and you have caregivers.
Speaker: But when you're the only caregiver, it can be very stressful.
Speaker: But if you can just go with the flow with them and not try to remind them of who they were,
Speaker: because that's not who they are now.
Speaker: And sometimes you have to let go of the fact, too, because a lot of people think, well, this is my mother.
Speaker: She should be taking care of me.
Speaker: This is my father.
Speaker: They're supposed to help me through issues.
Speaker: But now it's a point where that's not going to happen anymore, so you need to help them.
Speaker: And it really only gets worse.
Speaker: I mean, isn't that the case?
Speaker: Usually.
Speaker: I mean, it doesn't.
Speaker: I've seen people that can really hide.
Speaker: They can hide it well when social workers come in.
Speaker: They can answer the questions fine, but you know that they have something not quite right, and they answer minimum.
Speaker: A lot of times dementia patients laugh a lot too because they act like they know what you're saying, but they don't.
Speaker: A lot of them don't.
Speaker: And each disease or form of it affects people differently.
Speaker: And I don't know them all.
Speaker: I know that dementia is the problem.
Speaker: blanket over it.
Speaker: And then underneath it is Alzheimer's and there's sundowners and there's all sorts of stuff that fall under it.
Speaker: But if you have sundowners, that's a whole different thing because they're fine during the day, but then during the evening, that's when their disease affects them.
Speaker: And they get totally confused at night and they think the night is the daytime.
Speaker: And the one guy I had that did have that, and he's no longer here, but
Speaker: He would, he was in a nursing home and he would turn the lights on at night because all night long, because he thought it was the daytime.
Speaker: Like I said, it's just every person's different and everyone needs to be handled individually.
Speaker: And with, I think with dignity and respect,
Speaker: and validation of them.
Speaker: And like I said, they all need to feel like a purpose.
Speaker: So a lot of times, almost every time I tell people how important they are to me and how they've made my day, I try to become a true friend to them so they know my face.
Speaker: And they don't always remember me.
Speaker: And I never correct them when they say my name wrong because I don't care.
Speaker: you're not taking it personally.
Speaker: I don't take anything personally because I know that they, they don't mean any of that.
Speaker: They, they're just trying to get through the day the best they can with what they've been dealt with, you know?
Speaker: Yeah.
Speaker: I want to, I want to pause again and just say, it's just about coming in and showing up with love, right?
Speaker: Like,
Speaker: you said a lot of times they want hugs, that you're there to be a real true friend were the words that you use.
Speaker: And I think that that is also key here, right?
Speaker: Like what is your intention when you're going?
Speaker: Is it because you are feeling obligated?
Speaker: If that's the case, then you need to probably revisit your intentions before you go.
Speaker: And if it is to go and love them and to show up for them,
Speaker: then you have to say, I'm coming in with full attention.
Speaker: I'm coming in to listen to them.
Speaker: I'm coming in to validate them.
Speaker: And it's not about my feelings, right?
Speaker: Never, never about my feelings.
Speaker: And that reminds me of one other thing we talked about earlier.
Speaker: when we first met that I think is important to bring up here is that it is very common to ask the same questions over and over.
Speaker: You mentioned earlier that people will get stuck on a subject, but also just, you know, if someone's visiting for an hour, even they can ask the same question again,
Speaker: 20 times.
Speaker: And, and you said that you sometimes try to like, make a game out of it where you answer them in a different way each time.
Speaker: Can you speak to that a little bit?
Speaker: Well, I can get that a lot.
Speaker: And it's very common to ask me the same question over and over and over and over a million times.
Speaker: And I never, ever have once said, you already asked me that.
Speaker: I always just answer again.
Speaker: And sometimes when they say, have I already asked you that?
Speaker: I say, well, no, you haven't.
Speaker: But if you have, then let's see if you give me the same answer.
Speaker: And I'll get them to laugh because...
Speaker: Then they're like, oh, you know, and I don't know.
Speaker: I just, I don't mind answering.
Speaker: That's where, that's where patience comes in and, you know,
Speaker: You really need a lot of patients with some dementia patients.
Speaker: You really do.
Speaker: But I just find them fun.
Speaker: They're great people.
Speaker: And I have had some that have been very angry at the world, but I don't think they're angry at any one thing.
Speaker: I think they're angry at the situation.
Speaker: They're just mad at something.
Speaker: But if you can make it your mission to figure out what the thing is or the things are,
Speaker: that really make your person happy and try to like feed that instead of focusing on the things that make you sad, right?
Speaker: Try to find joy with them.
Speaker: I do.
Speaker: I try to find, I try to make them put them in a different mental state.
Speaker: I try to make them happy.
Speaker: And sometimes it all falls back on me.
Speaker: Sometimes it takes me a long time to
Speaker: I'll go through my phone and I'll find pictures of things and all of a sudden I'll see a connection and then I'll realize they like animals or then I've got a subject or they like little kids.
Speaker: If they show my grandkids or something or another one of my guys like Elvis, I remember that guy too.
Speaker: And I played and I don't even like Elvis, but I had to play Elvis music for him.
Speaker: I've heard that music is really powerful for dementia patients, that they can bring back fond memories.
Speaker: It can kind of like transport them back to another time, right?
Speaker: And it's amazing how much they might not remember a lot of stuff, but you put on some old music, especially back.
Speaker: It depends on what their era is, but I can figure that out all the time.
Speaker: And let's just say a Dean Martin era.
Speaker: And you put that on, they know all the words, the songs that helps them go.
Speaker: And I gave headphones once to one of my patients, and I just said, keep them on them all day.
Speaker: And I went through more batteries with that guy because he loved listening to music, and he loved country music, old country music.
Speaker: And that's what I had for him.
Speaker: And he just played it and played it and played it.
Speaker: And that's just stuff like that.
Speaker: Well, and it's taking that time, right?
Speaker: Right.
Speaker: To really get to know them.
Speaker: And so you said one way you do that is maybe you're looking through pictures and there's something that's triggered.
Speaker: Do you also, like with the gentleman that liked the Air Force, did you just ask a lot of questions about when he, you know, when he was younger and if he was in the military, are you asking guiding questions or do you find that you kind of have to bring
Speaker: up the topics for them to latch on to?
Speaker: A lot of times, because I'm given a patient through the organization I work, well, I volunteer with, they will tell me a little bit if they know anything.
Speaker: And in his particular case, they just told me he was in the military.
Speaker: So then it was up to me to research what he did and where he was.
Speaker: And that's when I found out he was in the Air Force and he liked to fly or he did fly.
Speaker: So it
Speaker: I could start it out easily because my father was in the Air Force.
Speaker: I grew up in the Air Force, and my father was a navigator, and he liked to fly.
Speaker: So once I said those things to him, his eyes just lit up.
Speaker: So that's our subject every single week.
Speaker: It was again today I was there is about airplanes.
Speaker: And sometimes I like to act dumb a lot of times with the patients.
Speaker: Because I like them to feel like they're teaching me something.
Speaker: So in his particular case, even though I knew the kind of planes that I was looking at because my dad flew, I would say, well, what kind of plane is this?
Speaker: And then I make little comments like, well, gee, I've never seen a plane with planes.
Speaker: One engine, they have one engine planes.
Speaker: And he got all excited, like, oh, and then he started explaining to me about one engine, two engine, three engine, four engines.
Speaker: And then he and then and then what I also do with patients, because the phones down days, which are so handy.
Speaker: I make a lot of jokes and I'll say, let me look that up.
Speaker: That's my famous line.
Speaker: Let me look that up.
Speaker: And then I'll Google.
Speaker: And then because he I don't remember the name, but he gave me a name of a we were looking at the magazine pictures and there was a man there and he goes, oh, that's so and so.
Speaker: And I said, oh, you know that man?
Speaker: He goes, no, but he's very famous in the military.
Speaker: I said, let's look him up.
Speaker: So then I go to Google and I look up the man and then I read all about his life.
Speaker: bio and I read it to the guy and he was very interested in it.
Speaker: And that's how I do it.
Speaker: I just keep changing subjects until I see an eye that looks like it's got a little interest all of a sudden.
Speaker: And then I can go from there.
Speaker: Yeah.
Speaker: And there's two things that I want to pull out from that.
Speaker: One is, like you said, you see the twinkle in their eye.
Speaker: So there's something about being fully present, right?
Speaker: And not sitting there Googling on your own and checking your text messages because you're going to miss their interest.
Speaker: You are fully, fully engaged in giving them your attention.
Speaker: And so that's how you're going to see the sparkle in their eye.
Speaker: And then the other piece that I wanted to point out
Speaker: that I think is so important was when you were talking about asking them questions and letting them be the expert.
Speaker: And I can imagine that if you were,
Speaker: in a facility, if you are feeling confused and you're feeling anxiety because you know you're not quite the way you used to be, then it must feel so incredible to feel like you have purpose, that you are providing the expertise here, right?
Speaker: And so I love that.
Speaker: And I love the idea of finding something that you can ask them about and you can let them feel really useful.
Speaker: in the moment because again like validation and all of the things that we crave as humans that's such a beautiful one
Speaker: And that's what I, that's the bottom line is, like I said, I don't make it at all about me, not one inkling.
Speaker: Unless they have an interest, and I'll answer their question, but I make it about them.
Speaker: And because, like I said in the beginning, they're all human beings and they all need to feel validated and they feel like they, they need to feel like they have a purpose.
Speaker: A lot of them have lost, a lot of them were
Speaker: had a job and they raised kids and they had a family and whatever.
Speaker: And now they don't have, everybody needs to feel like they h ave a purpose.
Speaker: So if your purpose is, like I said, folding the laundry or setting the table, what does it matter?
Speaker: You know, let it, let it, not even that big of a deal, you know, but it is to them.
Speaker: Absolutely.
Speaker: Exactly.
Speaker: It's not hurting anyone.
Speaker: No.
Speaker: Yeah.
Speaker: I know we need to wrap up pretty soon.
Speaker: So before we go, is there anything else that you would like to share?
Speaker: And I know we've discussed a lot.
Speaker: The only thing that I say is that they're so lonely, a lot of them.
Speaker: And I don't like anybody to be alone.
Speaker: So if I can brighten up their day by just a smiling face, then that's important to me.
Speaker: Yeah, I mean, it's so obvious.
Speaker: And I just want to say thank you for being such a wonderful person.
Speaker: And you can just feel that you have this calling and that you're doing this work that is such a gift to so many people.
Speaker: And so thank you for that.
Speaker: And thank you for sharing this information with us so that hopefully more people can spread the love and the joy
Speaker: to these people who are not the way that they used to be, but are still people and still need to be loved.
Speaker: Every patient I get, because this is what I've requested for all these years, is I want one that
Speaker: doesn't really have family or is estranged from their family or is a little bit difficult because they're the ones that really need love too.
Speaker: And I like to know that they're going out of the world knowing that somebody cared about them.
Speaker: And I'd like people to...
Speaker: Try to find patience because I get it's hard.
Speaker: I get, like I said, if it's your parent, it's very difficult.
Speaker: But just try to understand that they didn't ask for this.
Speaker: So if you can just cheer somebody up, it's helpful, I think.
Speaker: Yeah, I think that's a perfect note to end on.
Speaker: And that was so beautifully said.
Speaker: So thank you so much, Lori.
Speaker: Well, thank you for taking the time to listen.
Speaker: Yeah.
Speaker: I mean, this is all such much needed information.
Speaker: And a lot of us just don't have experience to understand how to navigate this.
Speaker: And so it's really, really helpful.
Speaker: Thank you.
Speaker: Thank you, Jamie.
Speaker: I am so grateful for my time with Lori.
Speaker: I hope you walk away from this episode inspired to try her approach.
Speaker: The biggest takeaways are intentionally setting aside fear, judgment, anger, and embarrassment, and trying your hardest not to take things personally.
Speaker: This is easily said and much harder to do, especially when you're grieving the loss of someone who was once very different.
Speaker: If you can separate the dementia from the person and walk in knowing in your heart that their behavior has nothing to do with you, you will likely find your visit to be more fulfilling.
Speaker: If you know someone else who could benefit from this information, please share this episode with them.
Speaker: And if you appreciate what we are doing, subscribe to us on iTunes, Spotify, or wherever you listen to your podcasts.
Speaker: Please reach out and let me know how I can support you.
Speaker: I would love to hear from you with episode ideas.
Speaker: Email me at jamie at lightattheendpod.com, J-A-M-I, jamie, lightattheendpod.com, or visit our website, lightattheendpod.com.
Speaker: Take good care.
