28. When Words Fade: Loving Herb Through Alzheimer's and Lewy Body Dementia

Episode Description:

We talk with Linda Wiebe about loving and caring for her husband Herb through Alzheimer's disease and Lewy Body Dementia, and how digital storytelling helps others see the person behind the diagnosis. We also name the hidden load caregivers carry — from isolation and stigma to the practical decisions that protect a family before crisis hits.

• the digital story When Words Fade, and why it helped others understand
• Herb's zest for life and the early changes that signalled something was wrong 
• delays in diagnosis and how uncertainty compounds caregiver stress 
• deciding what to share publicly while protecting dignity and privacy 
• why speaking up can bring relief to those who already notice changes 
• caregiver advocacy through COVID and the realities of 24-7 care 
• financial and legal basics — power of attorney, health care directives, and account safeguards 
• emergency planning and the complexity of family-managed care at home 
• the difficult first year after moving into long-term care 
• helping staff know the person through photos, routines, humour, and respectful communication 
• connecting without words using eye contact, touch, tone, and presence
• how friends can help by showing up with simple gestures and time

Guest Bio:

Linda Wiebe is a devoted wife, mother, grandmother, and lifelong servant-leader whose life has been shaped by a deep commitment to people and community. She has worked and served in several countries, primarily in administrative roles, supporting organizations and ministries.  Alongside her husband, Herb, Linda shared a life rooted in ministry, mentoring, and hospitality. Together, they trained and invested in young people and leaders, creating welcoming spaces where others felt seen, valued, and encouraged.

When Herb was diagnosed with Lewy Body Dementia and Early-Onset Alzheimer’s, the couple made the courageous decision to continue living outwardly, sharing their journey with honesty and compassion. Through storytelling, including the digital story When Words Fade, Linda now supports and encourages others walking similar paths. Her voice carries empathy, wisdom, and hope, reminding others that love, connection, and dignity endure—even when words fade. 

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Intro and outro music with thanks:  Upbeat and Sweet No Strings by Musictown 

Lisa brings over 25 years of experience working in healthcare settings with older adults. The perspectives shared on this podcast are her own and do not represent the views of any past or current employer. Patient/resident stories are shared only with explicit permission or as anonymized composites for educational purposes.

Transcript

Welcome And Why Stories Matter

Lisa 0:04

Welcome to Capturing Essence for Care, where we discuss the importance of incorporating personal life stories into healthcare and share ideas to help you on your journey. I'm your host, Lisa Joworski. Welcome to Capturing Essence for Care, everyone. It's a pleasure to have Linda Wiebe with us today. This is a different type of conversation and one I'm really looking forward to. Linda was introduced to me by Jen Siran, and Jen Siran is a digital storytelling facilitator. And she co-created a digital story with Linda, and Linda will share more about her story soon. But really, this is a conversation that is essential because I've spoken to a lot of people who are either health professionals or storytellers, but I've only had a couple conversations with people with actual lived experience. And that's the reason for their digital stories that they've done. And so, Linda, I'm really pleased to have you join me for this conversation today because we've already chatted before pressing record about your husband, Herb, who had Alzheimer's and Lewy Body Dementia. And you co-created that video with Jen to share a little bit about your love for him and who he is as a person. So I'm just very thankful that you join and have the courage to share your story. And I think that's part of the, I don't know, that's part of the treasure in you is that you are so open with your story. So thank you for joining me and thank you for sharing what you're going to share today to capture the essence of you and Herb.

Linda 1:48

Thank you very much.

Making The Digital Story Fast

Lisa 1:49

So I wonder if you don't mind starting just by sharing a little bit more. I mentioned that you did a digital story with Jen, and I would like to hear what that experience was like. It was called When Words Fade.

Linda 2:02

Yeah.

Lisa 2:02

And I'd like to hear about how you even got introduced to that digital storytelling idea and how did how did that all begin?

Linda 2:10

Well, Jen is a friend of mine, and um, she had been doing this and she had talked to me about it a few times, and my life was just so chaotic with looking after my husband and all that. And I was emotionally sharing stuff, but I was I was not, I don't know why, but I kept putting it off. And then when I was asked to speak at the um Manitoba Alzheimer's Society board meeting, then I talked to Jen about it, and she says, Well, why don't we get a digital digital story put together before you do that? And then you could share it there. And I'm like, Really? Well, she is, I know she's new at it, but she was such a pro. We came over and basically got the biggest part of it done in one evening, and then she the next morning I went there and we worked on pictures and then she edited for a couple days. So I think we started it on Friday, and I had my board meeting talk, I think on Tuesday or Wednesday. She had it ready by then. Wow, it was so awesome because it was we were trying to come up with like the topic for it, and what really struck me was how once her couldn't communicate really anymore, like how to still keep keep communicating to him, and so that's how the story came about about how to communicate without talking anymore and and what you can still do, and that's kind of how it came about, and it it just it flowed easily, and I think it just for me, it was just the opportunity to share it with the staff at Woodhaven, um, and then on social media and with friends and family, because not everybody comes to visit, so then when people can start to see a bit more of the progression, then there's a little bit more understanding, and even if it didn't help them necessarily with being with her, because by the time the story was written, he had passed away. Okay, but it helps for people who now have to go visit someone and they're just like if you what do I say, what do I do? And to just take that fear away that person's still there, you know?

Lisa 4:32

Yeah. I have so many thoughts right now, and I'll try to I'll try to get there. But my first question before I lose it is it sounds like you and Jen did this video with the purpose of being able to present it first of all for the Alzheimer Society. Yes. Okay, okay. Okay, so that's helpful to know. You went in with a with a reason, and she was able to quickly help you put that together. Now I would love, I would love to hear about Herb and about uh, you know, I mentioned the Alzheimer's and Lewy Body, but some people might not know about that. So I don't know if you can share a little bit about your journey and about who Herb was to you.

Herb’s Life Before Dementia

Linda 5:12

Okay, well, he was um my husband for we missed our 48th wedding anniversary by two and a half weeks.

Speaker 1 5:19

Wow.

Speaker 3 5:19

Um, we got married at 18 and 20, had two kids by the time I was 21, and we had a life of adventure. We were missionaries, we lived in other countries, other provinces, other states. He was just the person that he was up for anything, and it was harder for me because he wanted a lot of adventure, and I was trying to just manage life as a as a family with kids. So we moved 24 times, but wow, it was all you know, when you're with your best friend, we just became such a close, tight unity, and we did went to school together, we did ministry together. So even when we did ministry when we were uh out of Texas, we were together 24-7. Um we loved being together. So he was the kind of person that loved people and was very engaging and very like, you know, I often wonder if somewhere in a person's spirit they know that they're gonna die younger, whether they just have this zest for life. Um, but he had a zest for life.

Speaker 1 6:33

Ah.

Linda 6:34

And that I think was something that that defined him. He was like, okay, let's not sit around, let's go do something. Very loyal, very loving, amazing dad, husband, friend. He was just a lot of fun. And he was a pastor and a missionary, and he worked at Inner City Youth Alive in Winnipeg. Um, yeah, you know, he never, other than Bible college, he didn't have like um any big degrees or anything like that, but he had a passion for God's word and the Bible, and he just used that. He had a wisdom about him sometimes that surprised me, um, which it shouldn't have, but sometimes it still did. So he was just yeah, he was um starting

Early Behavioral Signs And Delays

Linda 7:28

to change. Like I guess about 12 years ago, the symptoms started, and um was more behavioral changes in the beginning than memory changes. The memory came so in the beginning, we were looking to rule out like a brain tumor or things like that, because I mean nobody thinks that someone in their 50s is going to be diagnosed with Alzheimer's, but right from the start, the doctor said this looks like it's heading towards like Alzheimer's, but until they could get like all the testing done, but they started to see how things were moving.

Lisa 8:06

And that was in his 50s, you said.

Linda 8:08

Yeah. So he was everything was kind of delayed because COVID happened, and okay, you know, you you wait nine months to see this neurologist, then you have to wait another nine months for a PET scan, then you wait another year for this, and it until you have a diagnosis, you're really kind of lost. So um in 2018, 19, by 19, we had the official formal diagnosis, but the doctor for years already had been telling us that that's that's what it was.

Lisa 8:45

Can I just ask you? You said that you noticed the first signs were more behavior than they were memory. I'm curious on what those behaviors were. Like, what were you noticing the very first signs that made you think something's not right?

Linda 8:59

Changes in his character, I guess, like how he reacted to things. Um, like starting to get like reckless and careless, and uh I mean, memory was in there too. It was it was all about just he was just changing, and I I it didn't make sense to me. That's why at first I thought there must be a brain tumor because there's something odd going on, right? Um, but the behavior stuff was just so out of character, like it just I don't know, like he'd go somewhere. So let's say I sat with a store to get me a dozen eggs, and I'm waiting at home and I'm baking and I'm waiting for these eggs, and he doesn't come, doesn't come. You're waiting and you're trying to figure out well, what is happening? So finally I call the store. We lived in a small town, so I'd call the store and he they go, Oh, he's here having coffee with someone. And I'm like, What? Then he'd come home without eggs, and then he'd be mad at me and say, Well, why didn't you tell me you wanted eggs?

Lisa 10:05

Oh, he didn't even remember that he was getting eggs. It wasn't like, sorry, I was delayed.

Linda 10:10

Yeah, like it was just like all kinds of just odd things. Um, I'd have to go back and look through my journals for some of that, but so you kept journals all the way through as well? No, I didn't. I did I have three years worth of journals that I had the staff write in every day. Wow. Um I mean, that's when he was still home. Um then once Rust Haven started doing their journaling with him, like their notes, then I kind of just kept my Facebook page going and kind of posted on there. But there's a lot of stuff that I didn't post because I was still being very respectful of his privacy and also Herb wanted people to know what was going on, but I still wanted to be very just very respectful. Yeah, that's the word.

Lisa 11:01

Yeah, yeah. Tell me more about that piece. Like you mentioned your your Facebook page and sharing information. I'm curious to know more. I'd like the listeners to know more about like how did you decide? Was it a conversation between you and Herb on how much would be shared with the people around you? Like, how did you know what was okay to share? Um, privacy-wise, you know, thinking about him and thinking about what would be okay as the stages evolve and change and continue. Um, what did that look like? Did you have conversations about that?

Privacy And Going Public Carefully

Speaker 3 11:40

Yeah, well, first of all, the Alzheimer Society, they contacted me for Alzheimer's Awareness Month and said that the local, like the local newspaper, wanted to do an article um on someone. Would we be willing to do it? And then I talked to Herb about it. And he said, Man, if our story can help someone else, let's do it. He was still home then.

Lisa 12:03

How far along in the dementia progression would that have been?

Speaker 3 12:07

Um I think he would have already been diagnosed. Okay.

Lisa 12:11

So it was around that diagnosis time.

unknown 12:13

Yeah.

Speaker 3 12:13

Yeah, because that's when I started resourcing what was available to us. So that was that was huge. And then I had a few friends that I I said I want someone that like reads my posts on Facebook and whatever and lets me know if I'm going saying too much or whatever. So I had people that I could count on to um I taught we talked to our sons and asked them if that was okay if we started doing that, and they they said that was fine.

Speaker 2 12:47

Okay.

Speaker 3 12:48

As long as Herb was and um then they did a follow-up one when he got a hole in one with his caregivers. So then the second article, and then the the Christian radio station, CHVN, um did um, I guess podcasts twice, once while he was still alive, and I think I did one after he passed away. I can't remember, or I would have done it before, yeah. Some stuff, I still have a lot of brain fog. So for me, I think I became very, very passionate about caregivers and tried to advocate for caregivers. And so I felt like if there was a uh a way that I could take away some of the stigma of the disease and just say, you know what, talk about it, make it like it's affecting more families than we realize. And yeah, we want to be seen and heard and understood, and but not everybody's as open or vocal as I am. And so if I can do it for help someone else, that's great. Because I think a lot of times from what I've seen through my different support groups, is that family members don't realize the toll it takes on the caregiver in the family. And uh, if I can like put a plug in here or there, that's great.

Lisa 14:13

Yeah. I like that. I like that you said that you first you discussed it with Herb and that he thought, you know, if it made if it was gonna help to change somebody else's life and help them in some way that he was he was open to that. I also like the fact that you had like a support system to kind of check in. So when you're being public about sharing information, they could kind of you know be the back, the background double checkers in case you're in that emotional state or extra sensitive and say something maybe that's maybe a little bit too vulnerable to kind of rein you in if needed. Yeah. Um, right? Like just when you're in those states.

Speaker 3 14:57

There has to be like accountability. You don't ever want your kids to look at something and be uncomfortable with what's posted, right? Like you want to be kind.

Lisa 15:08

Yes, yeah. So the communication piece, it sounds like you've been advocating for quite some time, like through the podcasts, through the radio stations, through the Alzheimer Society, and them reaching out to you, knowing that you could be a voice for other people. And I think that that's a piece, I guess, that I I wanted to focus on in this conversation was the fact that there's a lot of people who, like you said, feel like you can't talk about these things. And it's a private situation, people won't understand. Um, and from what I know, in my experience, the journey with dementia can be very isolating and very isolating, especially for the person who lives with the individual who living with dementia. So there's all types of people who care and do care giving and are care partners. Um but it's a it's a different level altogether, and I'm from what I've from what I understand, when you're there 24 hours a day and going through and experiencing some of the things that you experience.

COVID Isolation And Naming The Truth

Speaker 3 16:19

Yeah, like what I think part of the thing that was really hard was um the the biggest changes happened to him during COVID.

Speaker 2 16:31

Yeah.

Speaker 3 16:31

While I still had him at home and I did self-and-family managed care where I hired staff, so uh because I still needed to work because we needed my benefit plan and we needed all that. During COVID, a lot of the changes happened to Herb, but people weren't around to see it, right? Because we were um the restrictions, even church, you know, we could only go in one door and then you sit in the area that's locked off for you. So when people did start it noticing more and more, what encouraged me to not isolate myself or be in denial about it was to actually bring it up with family and friends. And what I didn't realize was the relief that they felt because they saw stuff happening and they were like going, what is going on? And some of it was like, I didn't even realize, but so if we were at a gathering and it was time to go and fill your plate with food, I would grab Herb's plate, I would go fill it with food, and I would bring it to him, and his friends would tease him and say, Oh, you know, but what they didn't realize is that he didn't know how to do that anymore.

Speaker 1 17:53

Okay.

Speaker 3 17:54

So I covered up a lot, I did a lot of that kind of thing. So when I finally started telling everybody what was going on, again, it was a relief. And then people said, Well, how can I help or what can I do? But as long as I didn't bring it up, I think I did a disservice to both of us because um it's like when you have a young kid, they catch on to way more than what you think.

Lisa 18:25

Yeah.

Speaker 3 18:26

They're picking up on. Well, your friends, if they're around someone and they see behavior that's unlikely to a grown-up, they're gonna start to go, what is going on?

Lisa 18:35

Yeah.

Money Paperwork And Legal Protection

Speaker 3 18:36

And then also the the huge thing was so I worked at a credit union, the Steinbeck Credit Union. And as soon as I mentioned anything about her being cognitively impaired, my lender said, Come in my office. Went into her office, she says, Linda, you've got to get your will updated, you've got to get power of attorney, you have to get your health care directive, you have to do something with your credit cards, maybe even get rid of his. You have to lower the limit on his debit card. You need to put uh flags on all your accounts and everything and get on his accounts. You need to get your vehicles put in your name. This is how you protect your assets, this is how you do this. And I basically followed all that. And when I got a power of attorney, I made sure I got one that had homestead rights because once Herb got moved into the care home, I couldn't afford to pay for the care home and maintain our house. Because with us being missionaries, we still didn't, we still had a mortgage. We all those years that we were doing ministry, we weren't really earning much money. We we were surviving, but there was like no savings account, no, you know. So um getting that kind of advice while her was still cognitively could sit with a lawyer, make the decisions, sign the papers. In my support group, there's a lot of women who don't even have their own credit card. Their credit cards were in their husband's name. Well, if you don't have a credit card in your own name and you don't have your own credit bureau, and your husband passes away, you don't have a credit bureau. You can't even buy a phone. So I got really like telling all my friends who were like in my age group and older, like, make sure you have a credit card in your own name, this, because most people don't even know that. So their spouse dies and their credit card now is gone, and they're like, now what do I do? Or bank accounts are frozen, or different things happen. So I I got like I've just been really an advocate for saying to people, like, get your financial ducks in a row, yeah. And then once you have your healthcare directive, then make sure you you document all the conversations that you have with your husband about or your kids about what the future is going to look like. Because when the time comes um to make some of these really tough decisions, you you have to kind of have an idea, okay, what do we want? The one thing about the slow goodbye with this disease is that you have time to process things. Now I'm in grief share and I'm with people who've lost their spouses like through tragedy, and they don't have this kind of prep. So when when someone has this time to prepare, it will really help you down the road, and it just takes a lot of that pressure off. If I wouldn't have had my names on the vehicles, I wouldn't have been able to sell them because his his he couldn't even sign his name after probably 2001, 2002. His signature never looked the same, so it looked like fraud. Like I was like, you know. So by getting On all his accounts, I could and letting the bank know that he was diagnosed with this. Like I used my power of attorney 35 times in six years. That's how critical it is to have that. So if there's not open communication and vulnerability and the ability to go to the Alzheimer Society and go to these different mental health and home care and get all these resources, you are kind of lost because you really don't even know where to begin. And I'm fortunate that you know that I was young enough that I was still working, that I had access maybe to more than someone who's older, then it's like their kids have to step in and look after this stuff.

Lisa 22:53

Right.

Speaker 3 22:54

But they don't always know. So I know that there's packages for someone gets cancer or they get a disease, and there's like all these handouts to give. But when you're a caregiver, you're kind of winging it. And I know that there's a group in place that's trying to rectify that so that there's because like there's so many aspects to this disease that it's pretty hard to say, oh, this works or that works, but a caregiver, whether you're looking after a spouse with it doesn't matter really what it is. Once you're a caregiver, a lot of the stuff is the same. And that's where I my passion is like we need to support the caregiver.

Lisa 23:42

Yeah. And make navigating all of these things, you know, easier.

Speaker 3 23:47

Yeah, my kids live in other countries. They they aren't even around here. So wow, you have to figure it out. And then you have to have an emergency plan in place.

Emergency Planning For The Hard Days

Speaker 3 23:57

Like the waiting list for Herb to get into the care home was 18 months, but in a lot of provinces, it's like way more than that. And also depending on which care home you want to get into. And the last six months Herb was home. Like if I wouldn't have had an emergency plan in place, basically mental health and home care saw what was happening and they said, Do you have an emergency plan in place? And I said, I don't I don't even know where to begin. So they were like, Okay, well, like put yourself together a plan so that if something happens, you have it have a situation like you have something prepared. I had a bad scare. So I had taken a leave of absence for three months to set up self-family managed care for Herb. Okay. Because everybody that I had to deal with, I had to call during the day.

Lisa 24:53

And what's self and family managed care for those who

Self Managed Home Care Explained

Lisa 24:56

don't know?

Speaker 3 24:56

Yeah, it's for the government allows you to kind of start a business where you hire your own staff and look after your spouse, and the government gives you supplements that, but you have to do payroll and like you have to learn all that stuff. So it's it's very extensive.

Lisa 25:19

Wow. That's a lot on top of your caregiving role.

Speaker 3 25:23

Jeez. Yes, it it really is.

Lisa 25:28

Do you have a call coming in, Linda? You can take a break. Okay. Okay.

Speaker 3 25:37

So with self and family managed care, it allows your spouse to stay home and like they can cook and they can take him everywhere. If you hire, if you have home care, they basically come to the home and look after you in the home. Well, Herb was way too active to be able to sit at home all day. So I needed someone that was going to get them out every day, get exercise every day. So that was huge to be able to do that. But it's very, very time consuming. I bet. I bet. But they wrote in the journal every day about what was happening. So, and they would um my full-time staff person got to go golfing, fishing, bowling, out for drives. They kept him very active, very, very busy. And that was the best thing ever because he just was not a sit still person.

Lisa 26:30

Yeah. And I think you mentioned to me, Linda, that he he's he was a big guy, liked to stay active.

Speaker 3 26:36

He was an athlete. Okay, he was an athlete too. Yeah, he was an athlete his whole life. So he um was very, very physically fit. In fact, he never lost his strength at all. He was still very, very strong.

Lisa 26:50

Wow. Which from a from a healthcare side of things, I I hear about how, you know, the population is changing. And I'm not sure that's necessarily the case. I don't know if it was ever the way that people think it is, like where they say, you know, it's just older, frail ladies who are in places like long-term care or care homes or whatever term you want to use. It's all kinds of people, right? It's understandably, but there's a I think there's also a stigma that comes with males, especially when they're large, and there's this fear, under also understandably, that you know, this worry about you could get harmed.

Speaker 3 27:33

He had a sign on his door, okay, so that they were cautious going in.

Speaker 1 27:40

Okay.

Speaker 3 27:40

Um, Herb was very, very sensitive to tone, how people talk to him. So if a healthcare worker had been working in another room, was very frustrated and angry, and she would walk into his room and talk with a tone that would put him defensive, it would be I would say to them, leave and come back again. Like, because he would just get himself all worked up because he thought he had done something wrong. Or so tone was was really big. And so if you came in and you were happy and he you would get him smiling, he would be very compliant.

Care Home Transition And The First Year

Lisa 28:23

So what do you think helped when like knowing that he was going to be moving to it's called Resthaven? Yeah. Okay, when he was moving into Resthaven, and it sounds like that was a place that he chose, which I'm glad that worked out the way it did. What helped to make that transition go smoothly?

Speaker 3 28:44

Well, he thought that he was there to do some kind of service. Okay. Be like a chaplain or whatever. So he was very, very helpful. But as soon as he realized he couldn't go home with me, the first year was awful. Like the doctor warned us it would be like that. She said it usually takes people nine months to 12 months to adjust. And I would say it took both of us that long. So it wasn't, it was not pleasant. The first the first year there were uh very, very difficult experiences. But the difference was that when that was happening at home, I had to stay and deal with it. At the home, I could I had help. Yeah, I could I could go to people for help, staff, and also they had medication, like we had some medication that um you know they could give them every 10 minutes to calm them down. Oh wow. And so that was um a reality. Every time I see a new person getting moved in with their family, like we started a support group for wives at Resthaven because of that, because it's so that first year is so traumatic, and we just want to give as much like support to as many people as we can. Because what happened was all of us women were kind of connecting with each other and having little huddles everywhere. And then one of the other ladies said to me, Why don't we start a support group and just meet up regularly? Well, that has been huge. Wow, it has been amazing, and people come and go because as spouses pass away, some people leave the group, most people leave the group. I'm probably one of the only ones still going back, but I do it because of the relationships I've built there. Yeah, did I answer your question? I'm so brainfogged today. n I'm sorry.

Lisa 30:39

No, you're doing great. We you you mentioned about how the first year at rest it was difficult, like transitioning in and I'm glad you said that because it it can be a reality, and sometimes people think it's just a few weeks, but no, no.

Speaker 3 30:55

He backed up to go home for probably the first four months. Um, he escaped a number of times.

Helping Staff Know The Real Herb

Lisa 31:03

Was there anything you did, Linda? Like, how did the staff get to know him as a person and what was important to him? And even the things you're saying on like how to approach him or making sure that you use humor because it sounds like a sense of humor was I you know what?

Speaker 3 31:19

I I invested a lot of time in getting to know the staff. Okay. A lot of them I still get together with as friends. Um, I put a lot of pictures all over his room of different aspects of his life. Like he had his pilot's license, and he loved doing this and he loved doing that. So I had pictures all over his room and a big fishing picture, and um I had uh a thing that talked about like what TV shows he could watch. Okay, all that kind of stuff. I tried to make it so that when people came into his room, they could go, oh hey Herb, what's this about? I mean, the last the last year he didn't even know who he was himself, like the last year and a half, we had to cover his mirror and make sure all his blinds were closed because he didn't recognize himself. If he saw himself in the mirror, then there was somebody else in his bathroom. If he saw his reflection in a window, then there were people in his room.

Lisa 32:24

Right.

Speaker 3 32:25

So we had to like readjust as he adjusted. So that was there were things. Um I had to start taking things out of his room. So when he started tearing up books, then all the books had to go out when in the magazines. He loved golf magazines and stuff, so I tried to keep him current with stuff, but once he started just tearing stuff apart, yeah, he would empty a box of Kleenex and tear all the Kleenexes and then fold them in little pieces. He had all these little unique little things that he did, and uh he started, they all go through stages where they go into each other's rooms and help themselves to things. So I would find like all the TV remotes from his whole household were in his room. All the brooms and mops and pans, they were all in his bathroom. Oh wow. Like it was kind of cute. The staff were just like, okay, we gotta go look, see what Herb's got now. You know, like there was humor in in a lot of it, right? Like he would play um, is it Crokinole? Yep, Crokinole. Yeah, so he had a lady that he could play hours with. Well, then one day someone walked by and he went boom and he flicked it and it hit a lady. And then he started like totally not playing the game, but he was still like having fun. Right. So it was all that stuff that you would go, oh shoot, he's he shouldn't be doing that. But you know, it was what it was, and you you have to kind of I think the biggest thing for me was seeing a therapist and finding out like Linda, some of this stuff you just gotta let it go. Like just you know that this week he's okay doing this, next week he won't be able to. Yeah, you've gotta kind of come to a place of surrender, and also like for me to give up his care to other people was really hard.

Lisa 34:30

I bet.

Speaker 3 34:31

And being that he was a pastor and a missionary, there was no way he was gonna get some other woman to take off his clothes and help him take a bath. So for the first till he couldn't walk any, well, no, I'd say the first two years, I did all his showering and helped with all his care because he wouldn't let anybody else. But once he didn't even know who I was anymore, then like not even I could help him. So we had to come up with creative ways to dress him or bathe him or anything, but it was just so instilled in him that you know, modesty. So that's where I had to advocate for him. I think the huge thing being there every day, minimum three hours with the staff was advocating for him. And not every caregiver can do that. Some people, their spouse is like an hour and a half away, and Manitoba winters, if the highways are closed and stuff, I was fortunate enough that I moved into the 55 plus next to his building and could walk down the hallways back and forth.

Lisa 35:39

Okay.

Speaker 3 35:40

Um, but if I would have had to drive every day, there's no way I could have done all the care that I did for him. There's just no way.

Speaker 1 35:47

Yeah.

Speaker 3 35:48

So a lot, there's so many things that play a part in how much you can help or do.

Lisa 35:54

Yeah. So what I love about you and you sharing your story, and I know the listeners weren't with us when we we had a previous conversation earlier this week. And what I love about the way you share your story and listen is that I don't get the sense that there's any judgment. So every person who's caring for someone, their situations are different. So you're saying that you were there, you you know, you were there as much as you could be every day for hours, but then there's also people who can't be there every day, or certain emotional or physical reasons that they can't be there. Yeah. And what I'm what I'm gathering from you is that we could sometimes there could be excuses or reasons or you know, yeah buts, but I think it's it's just caring for people and being compassionate to support people in whatever the situation is. Exactly, and and you're great for just my experience where it was like, you know, what I find helpful is just, you know, offering to to pick up a coffee and go visit when you, you know, like it just doing what you can, but there's so much guilt and shame already in this journey that is huge. I like what you're doing to try to maybe eliminate that. Thanks.

Speaker 3 37:15

I volunteer there now. Okay. Wow. I volunteer and I have someone that I feed, and then I have I do the bookmobile for the library, and I port people around in wheelchairs and puzzle and visit with people, and part of that is because I fell so in love with the staff, and it's a way to help with the staff.

Lisa 37:35

That's so nice to hear because sometimes there can be challenges, but you see that the staff are doing their best, and that yes, there's a lot probably to do.

Speaker 3 37:44

And I think what is huge is if you have a family member in a care home, I think the best thing you can do is communicate with the staff and don't be judgmental because you don't know what the other like in Herb's household, there's 12 people and two caregivers. So sometimes a situation I had with Herb took up 20 minutes with two caregivers and myself. So now there's nobody out there. So a family member comes to visit and says, There's no staff around and there's no this or that. And I'm just like, yeah, they are.

Lisa 38:21

Yeah.

Speaker 3 38:22

And there is an emergency button you call, but sometimes the emergency is happening in a room. Yes. And I think that's where the communication, not just with your family or friends, but even with the staff, like, say, hey, like, I noticed this, like what's going on? Right.

unknown 38:42

Yeah.

Speaker 3 38:42

And they'll say, Oh, you wouldn't believe what happened this morning. We had this and this happened. And I'm like, Oh wow. So sometimes you can do something so simple. Like sometimes I was because in the home herb is in, it's like um there's uh four households per floor. Okay, and every household has kitchen, dining room, living room, laundry room, and then the bedrooms are on the outside. And so everybody eats together. So, you know, even going and setting the table, setting the table while the caregivers are dealing with something else, just helping poor coffee or whatever, like any little thing that you do to just kind of give them just a little bit of where they can catch their breath is a positive thing.

Lisa 39:26

It helps, yeah. Everything helps. The extra hands, yeah, absolutely.

Communication Tips Beyond Words

Lisa 39:31

Can you speak a little bit more to I love that you mentioned about the environment that you helped that, like knowing that the podcast is called Capturing Essence for Care? It sounds like you really used the environment, pictures, having things that people knew to talk about or knew about him that were important. Um, you've also mentioned sense of humor, and then you also mentioned some other things like touch. Can you share a few more other examples that might help people who might be in this situation someday?

Speaker 3 40:01

Sure. I think when you go into the person's room, it's really important to engage and eye contact. Standing in a part of a room and saying, hey, her, whatever. If he's not looking at you, he doesn't know you're there. So going right up to the person, making eye contact. Sometimes it's a matter of putting your hand on their knee or touching their arm. Um, older people often don't get very many people touching them unless it's the healthcare aid who's washing their face or something. So it's very important to engage with eye contact and then contact like touch.

Speaker 2 40:46

Yeah.

Speaker 3 40:47

And then tone. Tone is so important to be happy to see them and have your face light up. And um when I worked at my job where I had to answer phones, they always said have a smile on your face when you answer the phone because you're you can hear it. Even your voice sounds different, right? So during COVID, everybody's wearing a mask. You all you see is eyeballs, you don't even know if a person's smiling or not. But then if they're smiling and they talk, then you catch on that they're they're smiling. So that is huge. Um, I got Herb a stuffed animal that he had got me, and he loved having something to hold. Okay. I know a friend of mine the other day, she got her mother-in-law a doll. So, even doing something like that where they can hold something, yeah. Another thing that was huge is give people a purpose, even if it's folding towels, even if it's like you say to them, How about we take the dishes to the sink?

Lisa 41:49

Right.

Speaker 3 41:49

And anytime you can give them where they feel like they have some dignity, give them a little bit of purpose.

Lisa 41:55

Yes. I find even saying, like, even if it's uh after the fact, saying, you know what, thank you so much for just even spending time with me, or you saved me time by like whatever they do, yeah, we can make it feel like it they had a purpose, you know, like they have value. I think we need value all the way through life, no matter what our abilities are, right?

Speaker 3 42:19

And even just saying, Man, I'm so happy to see you. Boy, did I ever miss you? Anything that just has them light up, uh, even now as a volunteer going in there and making eye contact, saying hi, how would you like to do this? How would you like to do this? Would you like to puzzle with me? Should we can I take you for a walk around the building? We have a big atrium that they like. Anything that uh gives them like, oh, someone sees me. Yeah, they're still in there somewhere.

Lisa 42:50

I don't know. Does that help? Absolutely, absolutely. That's that's really my point is that we all need to be seen and heard. Um, and that is capturing essence, and I think you did that beautifully. Thank you. Is there anything else before we come to a close that you think is important to mention today?

Love Respect And Small Kindnesses

Speaker 3 43:11

I just think love has its own language, and it's it's people can feel it, and if you can just make someone feel heard, so whether it's the caregiver, the person who's not doing well, whether it's the staff, kindness, respect, compassion, and showing love. Like for Valentine's, the last Valentine's Herb was alive. The staff had bought a card and signed it from Herb and given me a pat plastic rose that I still have. Little details like that that you can do for someone. Yeah, but um the last week of Herb's life, people were bringing babies. Because I knew I was there 24-7. So people were popping in and dropping something off. I learned so much in that last week. I was like, I would have never thought of half that stuff. Yeah. Yeah. So yeah.

Lisa 44:16

Always learning. We're always learning. And I anybody, I have a hard time with hearing terms like expert or you know, like I think we're never gonna know it all. And we everybody's journey, I'm sure people have heard this many times before, but if you've met one person with dementia, you've met one person with dementia because everybody is so different. Our lives are different. Each individual is a unique being. So the way that it affects someone as in the progression is is very different, right?

Speaker 3 44:50

In Herb's home, I think they have 144 residents, and I think there was maybe one other person that had Louis body in the whole building. So often they would ask me questions. I actually um was able to have someone come from another personal care home to talk to me, and I just said, this is what works for my husband. If it's helpful for somebody else, great. I'm no expert, but this is my life experience. So that's all I've got is life experience. I I have read a lot, I've studied a lot on it, I have learned from the people in my support group, but that's all I know. Yeah. And what I know, I'll pass on. Yeah. And so I'll keep learning, yeah, and then keep passing on.

Lisa 45:37

Yes. And sharing your story, like you said, I think it takes a lot of courage, and I'm thankful that you and Herb were open to that, like sharing what this is all about so that it helps to teach others, like just from your own lived experience.

Speaker 3 45:51

It takes the stigma away.

Lisa 45:53

Yeah, yeah. The more we can talk about it, the more we form more of a community in our surroundings, right?

Speaker 3 46:00

Yeah, my sister passed away from cancer a year before Herb passed away. And I spent a lot of time with her and talked with her about things. And, you know, she said to me, you know, when a person gets a cancer diagnosis, they're they're told, oh, 50% chance, 30, 80% chance you're gonna get better. And she said, My heart broke when I heard what Herb had because it's it's fatal and there's no cure. And I think that's maybe part of what keeps people away, is that they it's hard to watch summer deteriorate. Yeah, and I get that, but I needed those people to come visit so that they would spend time with me. Yeah, like I needed people to sit with me, yeah. So that's what I try to communicate. Is that right?

Lisa 46:56

Yeah, and some people don't express that and it's hard. Yeah. Sorry. Some people are so private that they don't ask and they don't share.

Speaker 3 47:09

Yeah, and my heart breaks for them because this is a journey you can't do by yourself.

How Friends Can Show Up

Speaker 3 47:17

You really can't if you don't have people in your corner. Like I just think it's too hard. Like when when I finally got the courage to go on a trip and see my kids, my friends were lined up. Everybody was like, I'll feed them this day, I'll feed them that day, I'll visit them this day. And to have people like that step up to do that for you so that you can have that peace of mind is priceless. And so when people say, How can I help? It's just like, you know what? Sometimes just sit with him. He might not remember that you're there, but turn the TV on. If you're gonna watch hockey at home, why not come and sit and watch hockey with him? Right?

Lisa 47:58

Exactly. It yeah, it doesn't have to be hard, it's more the togetherness.

Speaker 3 48:02

You have to keep him engaged because you can't. Yeah.

Lisa 48:05

Yeah, especially in the later stages. You're right. It's just the being there, right? The physically just being there. You don't have to have any special words or any special talents. Yeah, it's just the being together.

Speaker 3 48:17

And every now and then he'd say something like he was with friends and they were all sitting around the table and he was not really paying attention to anybody. And then one of his friends came up to him and went like this, like right in his face and said, Hey, Herb. And he looked at him and goes, Oh, you're the pretty one. Well, he'll remember that for the rest of his life.

Speaker 2 48:41

Because he was called the pretty one. You know, so every now and those sweet little memories pop up.

Lisa 48:50

That's right. Yeah, or you can see the lights come on, you know, and all of a sudden they're really bright. You just wait for every single moment. What's gonna happen, what they're gonna say. Yeah, yeah. Oh, thank you so much for your time, Linda. Thank you. This has meant a lot, and thank you to, like I said before, thank you to both of you, you and Herb and your family for being so open and supportive to sharing your story because I think it can only help other people.

Speaker 3 49:16

Oh, thank you so much.

Host Reflection And A Better Ask

Lisa 49:19

Well, that was a deep and meaningful conversation with Linda, and I hope you found it informative and touching just like I did. It made me think again about how much we really need each other for so many reasons in good times, hard times, and changing times. Near the end of this conversation, Linda mentioned that she had friends lined up offering to feed Herb. I am so glad that she was surrounded by friends who could help in this way and think that that's actually quite rare. Often, this journey with dementia can be quite isolating and lonely, at least from what I know about that journey. If you know of someone going through this journey, please let this be a reminder that it's hard for everyone and connecting doesn't have to be complicated. Sometimes just taking the time to be with each other with no expectations is all we can do. Those feelings of guilt and shame that we have around not knowing what to do, not knowing what to say, and feeling like we're not doing enough, that's all very normal. But it doesn't mean there's nothing we can do to support the people in our lives who are going through this experience. Even if it's uncomfortable, small things like, well, it might not sound small, but arriving with a coffee, tea, or refreshment, that actually might be huge. Maybe it takes up time, maybe it's uncomfortable or painful to see a person living with dementia go through different changes and decline, but they're still there. And that loved one, that care partner, they also need to know that they're not forgotten and that they're not alone. And when I'm talking about all this, I'm also talking to myself and giving myself little reminders too. So even if people don't ask, don't wait for them to ask. Sometimes it's the gestures and doing things. So instead of saying, What can I do to help? Just going ahead and showing a gesture in whatever way maybe that's personal for you. Maybe you love to bake, maybe it's baking something, maybe you love music or you play an instrument. Maybe sharing that with the person during a visit would be helpful. Maybe just simply being, holding hands, um, rubbing their back. It doesn't have to be something huge and complicated. And if you are caring for someone living with dementia and wish you had more people to support you and your loved one, I hope that this is just a reminder to keep continuing to ask for help, whether it's from family, friends, neighbors, or maybe on a larger level, like support groups, healthcare professionals, doctors, community support services, churches, and so on. I'm so thankful that you stayed and listened to this conversation. I appreciate your time so much. I would love to hear from you. What did you gain from this conversation? What do you want to know more about? I'm always open to hearing from you, so please you can text the show, find the link in the podcast description, and follow the show. And I look forward to the next time. Take care.