Steve and Virginia are joined by Elizabeth Lonseth, an author and caregiver, who discusses the dangers of denial in Alzheimer’s caregiving. She touches on the many ways that both patients and caregivers can suffer when caregivers do not come to terms with the realities of the disease. Elizabeth also gives listeners a few tips to help improve the caregiver journey.
To learn more about Elizabeth visit https://elizabethlonsethnovels.com/
Steve and Virginia are joined by Elizabeth Lonseth, an author and caregiver, who discusses the dangers of denial in Alzheimer’s caregiving. She touches on the many ways that both patients and caregivers can suffer when caregivers do not come to terms with the realities of the disease. Elizabeth also gives listeners a few tips to help improve the caregiver journey.
To learn more about Elizabeth visit https://elizabethlonsethnovels.com/
episode-35-elizabeth-lonseth
Intro 00:06
From the University of California, Irvine, this is UCI minds, spotlight on care, the podcast where we share stories, experiences, tips and advice on caring for loved ones affected by Alzheimer's and other dementias.
Steve
Welcome to another episode of spotlight on care. We're very excited today to have a young lady with us, Elizabeth lonseth, she is kind of a sage person in this area. And we'll get into why in a little bit. Our topic today is going to be the dangers of denial. And I think both Virginia and I have had some experience with that. I'll let you start off.
Virginia 00:52
Welcome, Elizabeth. I, you know, I look back and I think, how much did I deny? And when I must say in the beginning, I did some denial. But I looked at that now. And I think for me, it was more ignorance. I did not know what was happening to my mother. She would do things say things, repeat things. And I don't know if it was so much denial, as it was what the heck is going on. So this will be interesting for me. And I appreciate your being here.
Steve 01:27
Well, that's a good comment. Thanks, Virginia. So for me it. I think that I was in denial way before I should have been. My wife, Patti was showing signs at work. We were working together, she was making comments and I didn't put you know two things together and figure it out. Only when it became apparent there were a variety of mistakes being made in our company that I realized that she had a serious issue when others brought it to my attention. Fortunately, at that point, we we jumped right away into diagnosis and gathering information. And so I think from there on in, we were okay, but it's just some of the early signs we're just not aware of is as you said, Virginia. Let's welcome Elizabeth. Elizabeth is a caregiver has been a caregiver a few times, which she'll talk about. She's also an author. She's written a couple of compelling books on the issue of Alzheimer's one called a gradual disappearance, which I've gotten about halfway through. Not that it's hard to read is it's a very short and and insightful book. But I had read her other book, which is the dangers of denial, which is what we're going to be talking about today. She's also written several Christian fiction books. And so not only is she very knowledgeable about the issue of Alzheimer's, she's a great writer. So welcome, Elizabeth, we're thrilled to have you here.
Elizabeth 03:03
Thank you, and thank you for this opportunity, Virginia. And, Steve, I really appreciate it.
Steve 03:09
Could you take us through kind of like a brief summary of your journey as a caregiver?
Elizabeth 03:14
Okay, so how to summarize 20 years of my life. I was 36 years old when my father was diagnosed with vascular dementia. And for two years, I was in denial. I avoided seeing him because it was so painful. He was this brilliant force geneticists. And here he was basically talking on the level of a four year old and it was very painful to be with him because I we used to have wonderful long discussions. He was still in the early stages when he died of another heart attack. And then it was about seven years later that my father after my father died that we started checking on my in laws. My mother in law had vascular dementia, and my father in law had Alzheimer's. Interesting, they declined at about the same rate. And we started out just checking on them once a day quickly became two or three times a day and then it eventually progressed into full time care. And we took care of them for eight years feeding bathing toileting them. And our daughters helped out at various times, and we also occasionally hired in home care. The hardest part about my inlaws was they refused to accept the fact that they were aging. So there was no discussion family discussion about how they wanted to be cared for, and there wasn't much of a care plan in place. They passed away in 2005, about four months apart. My mother was our fourth case, and she had watched us care for my husband's parents. And fortunately, she had learned from that she had her advanced plan in place. She put my brother and I on her bank accounts, she gave us copies of her trust. And she was very explicit about how she wanted to be cared for. And she started showing signs of Alzheimer's. Shortly after my in laws passed. We hired in home care for her in her house for a while. And my two daughters helped out on the weekends and evenings lived with her. And then in 2010, we moved her down here to California, a mile from our home. And I have to say, moving her here was just like, going on vacation because I had time to spend with her instead of worrying, and being concerned about her care.
Steve 05:38
Thank you. I don't know too many people who have gone through that length of journey, or multiple journeys the way you have. Why did you decide to write about Alzheimer's? What what caused you to sit and talk about this topic of denial and dementia?
Elizabeth 05:55
Well, it wasn't something I planned from childhood to become or to do. But it kind of evolved. And while I was taking care of my in laws, people would say to me, you need to write a book. And I would say, No, no, it's too painful. I don't want to do that right now. But in 2011, after they had passed away, and my mother was in the middle of her journey, we got a six week old puppy, and I ended up sleeping on the kitchen sofa most nights and taking her out. And one of those nights when I couldn't sleep anymore. I laid there and on the sofa, and I was praying about how I could be helpful to other people going on this journey, how my experience I mean, here I am on my fourth journey, there's a reason for this, how could I help. And the thought just came really clear and direct. You need to write a book and feeling the Lord's leading I got out my iPad. And by eight o'clock that morning, I presented a book proposal, a full outline title idea cover idea to the executive director of my mother's senior living community. And I don't know who was more surprised him or me, but he encouraged me to go ahead and write the book.
Steve 07:14
That's great. Thank you. Thanks to him. And thanks to you. Okay, let's talk about this word denial. And what that means, and what are we referring to when in terms of denying what what are we denying?
Elizabeth 07:29
Well, denial is a tool that we're given, I think, to help us adjust to new situations that are very shocking, or very traumatic, but we can't stay there. And it can be happening in any part of life, when something shocking happens. But here we're talking about memory disease. And when you get that diagnosis, or you get told that you like you said, Steve, you realized your wife something was going on. You know, it's kind of shocking.
Steve 08:00
Do people deny this, even as they know there's something wrong, is that something that continues for people in terms of denying the fact that the memory problems exist,
Elizabeth 08:13
it can and that's when it has to be dealt with. And it can evolve into dangers. And so that's part of what we're going to be talking about today.
Steve 08:24
Let's, let's start then by talking about the dangers for the patient, and what those dangers are. And you know, we'll spend a minute or two on each of these and kind of make sure we get through them. So one of the things you talk in your book about is getting lost. In fact, you mentioned silver alerts, which I hadn't heard before. But getting lost talk a little bit about that.
Elizabeth 08:46
It's because of the confusion, they are no longer aware of where they're at, or they might be trying to escape their existence in this confusing world. And they can become a runner, so to speak, and they're always trying to escape wherever they're at. Or they can also just be driving and can't remember where they're going and what they're doing and get lost. And so like we see AMBER alerts on the freeway, we see silver alerts now and they're actually looking for someone.
Steve 09:18
Um, this is a kind of a tough topic but hurting themselves or hurting others. How is that work?
Elizabeth 09:25
behavior like hitting, biting, scratching, and of course, yelling, being angry, you know, they're trying to deal with their existence in this confusing world. And caregivers need to learn how to approach them. They need to know how to make an upbeat encouraging environment. Because if you and I, and I haven't I've just been tested a few months back, I don't have Alzheimer's and I'm all cleared to go. But if I heard the word no all day Long. And you can't do this, don't do that. I think by three or four o'clock, five o'clock when sundowners usually happens, I'd be tempted to hit somebody too and I don't have Alzheimer's. So avoiding the negative, and in my book of the dangers of denial, Paula Spencer Scott, I quote her, she has 10 alternatives to know. And is basically learning how to redirect their attention into other things. You also need to learn how to keep their day full of happy things,
Steve 10:35
how about accidents and in the home.
Elizabeth 10:37
Yes, these do happen. Basically, the house needs to be child proofed. The kitchen has knives, scissors, they can cut themselves and of course fire danger with stoves or leaving the burner on, or lighting candles. You they could incorrectly use a space heater. And then there's the bathroom. We've got medicines we got cutting yourselves with razors or scissors or slipping on the wet floor hitting their head. I mean, there's a lot of things that they might have been able to prevent if they didn't have a memory disease.
Steve 11:09
And if the caregiver and the patient aren't in denial about it, then it's a lot easier to safeguard the home and do these things correct?
Elizabeth 11:18
Well, when the disease is denied, like you just brought up Steve, then the there isn't the caregiver advocate in place, and there isn't anybody watching out and they start eating incorrectly, which is a big deal for seniors period. As we age, our bodies don't metabolize food as well. And so good nutrition is very important. But they tend to want to eat one thing. My father in law, it was butter, he would have eaten a pound of butter if we hadn't put a lock on the refrigerator. And I always used to think, Oh, if somebody walks into this home, they think we're got him in jail because the frigerators locked in the medicines locked, but it was for his own good. And then my mother, I was walking down to the laundry, and I heard her talking on the phone to her sister. And she said, Oh, yes, I agree. It's so much fun to eat dessert for breakfast, lunch and dinner. So I dropped the laundry basket, I went back to the kitchen. Yes, the refrigerator freezer and pantry were full of nothing but desserts. So we had to take I had to get somebody doing her meals, because she wasn't eating properly.
Steve 12:28
You know, I forgot to ask you this when we were talking. So it's a little off topic for a second. What about alcohol? Is that a potential issue in a home as it relates to being in denial?
Elizabeth 12:40
I assume it could be. It could be if that's
Steve 12:43
not something you experienced necessary?
Elizabeth 12:45
No, it's nothing. Yeah, my parents weren't drinkers and my husband's parents very seldom. And there was none in the home when we took over. So we didn't have to deal with that. But I'm sure it could be.
Steve 12:55
In my experience, it is. Patti bought little bottles of wine and stored them all over the house. We found them several you kept finding them for several years after she passed.
Virginia 13:09
You know, we had several guests with the same kind of problem, didn't we, Steve? You know, you turn your back and they drink as much as they can. It makes them feel better. And they don't have any judgment about when to stop.
Steve 13:24
Okay, let's get back to our list. What about driving?
Elizabeth 13:27
Well, actually a very small percentage of memory patients actually get into accidents while driving and hit somebody. But you don't want to be that family where it happens because if they kill somebody or maim somebody, you've got to deal with that the rest of your life and but you also when you go to take away the driving privileges, you don't want to be the one that does it. You don't because you're with them, and they're gonna be mad at you and acting out. You want to have a doctor or the DMV or somebody that they don't see as often that they can complain about for about six months and you have to listen to it and you want to keep changing the subject when they do that. But it's there's less problems that way.
Steve 14:14
Having gone through that myself, Okay, what about medical dispensing and possible overdosing? How is that a denial issue for the patient?
Elizabeth 14:25
Well, again, it goes back to not having someone being the advocate overseeing their medicines. Often this skill is lost in the beginning stages. So it can actually happen more often because people aren't on board usually in the beginning stages, but the weeklies pill dispenser with the lovely days of the week and all the pills underneath. That is a really bad idea because they get confused, and you'll come in like we did and the whole thing's empty and you just filled it that morning. Where did they go? Fortunately, it was the garbage not the stomach. So medication It's not only need to be locked and put in a safe place. But they also if there's more than one caregiver, there needs to be some kind of check system either on your phone, you have a chart or you have a physical chart where you can mark off that they were given so that people know what's been done. Or I assume texts would be a great way to keep in touch. But you have to keep that. It's a it's a big deal.
Steve 15:24
That's interesting about the pill containers. What about elder abuse and neglect, that can occur for the patient,
Elizabeth 15:33
when the family members are in denial? It really is, opening the door for all sorts of things, scammers. I mean, you'd be surprised people that want to come in and be very helpful to your loved one, because they see they're all by themselves. And there's nobody taking care of them or overseeing them. And then they can slip in and just start helping with finances. And then pretty soon we have problems. If someone is in denial, and doesn't take that advocate role, abuse and neglect can happen. So you need to be there for a good period of time.
Steve 16:10
It's interesting how you how these things merge together, what's good for the patient, and good for the caregiver about not being in denial. They're really interchangeable. In some respects. Let's talk about though, some of the things that family members or caregivers may miss as a result of being in denial. You talked about special memories.
Elizabeth 16:33
Yeah, you wouldn't think that was one. But it actually is because I experienced it. It's more of a complication. Because when you take don't take the time, if you're in denial, like I was with my dad, I didn't take the time with him. I wasn't there. I didn't create special memories with him like I have with my mom. She was a Bible Study Fellowship leader. So we would read the Bible together, she loved music, she gave me eight years of piano lessons that were for naught. But she to the day she died love to hear me play and struggle, and tell me how great I was doing. And she loved flowers. I mean, we built a and we go to parks, we built a lot of memories. And so when you don't do that, you end up with guilt and remorse. And it makes grieving a lot harder when they pass away.
Steve 17:23
I think that that's so true. But also, it makes your own journey as a caregiver more special. If you're participating in it. Like you just said, the difference between those things is in your mind now. And I think that when I thought back about the process, which was trying, I remember the special memories vividly now. It's what keeps me going about my love for my wife. You talk about for fitting your best advocate position as a caregiver, what's that about?
Elizabeth 17:54
Well, we kind of touched on it when we were talking about the patient. That again, you know, as a caregiver, you want to make your journey easy, not complicated. And if you're in denial, you're not there to make sure they're getting the best care. And then you step in and things have gotten muddled. Somebody else is trying to help out or things like the checkbook with my mother got so far out of control, I didn't even know where it was. So things you can make complicated by not stepping in and being an advocate at the right time.
Steve 18:28
Does this work both in terms of in home care where you're taking care of your loved one at home, and also in the community? I could think in the community it's even more relevant about being the best advocate, but you seem to think that it operates on both issues.
Elizabeth 18:43
It can and you can I've seen families where they hire in home care and think okay, now I can ignore them. I can go to work for a month and not have to drop in. And now you could be opening it up for back to the elder abuse. You've got to be there. You got to know what's going on. You're the one that knows your loved one the best you need to communicate their needs to the caregiver. So it can happen both in the home. And if you don't have anybody there then who knows what's going on. It gets really scary.
Steve 19:11
Very good. um not getting legal papers together.
Elizabeth 19:18
i Yes, this almost happened to us with my in laws because they didn't want us knowing anything about their business. And we barely got the powers of attorney. I'll talk about that in a second done in time when they were still cognitive enough to be able to sign them. But you need those complete legal papers. If you're going to take care of them especially you want the advanced health directive so you can deal with the medical you need a power of attorney for medical and the power of attorney for financial or you're not going to be able to do a lot of things. Like the banks the IRS is Social Security, hospitals, doctors, wealth management companies. And I found even the utility company wouldn't let me end my mother's accounts without giving them a POA. So you need those things for many, many things as you're caring for them, once they pass away that POAs are not null and void. That's where your trusts and your the other things come into play.
Steve 20:23
This sounds like it might be and I didn't even think about all I mean, we had that those documents. But as the spouse, I felt like it was a different situation. But as a family member, who's the caregiver, probably even much more important that all these papers are together. let's, let's talk about family conflict.
Elizabeth 20:45
That's a big one. Because family members, especially when we're talking about children, need to work together as a team. And I run into teams where they are actually doing that, and it's so fabulous. But when you have one or two that are in denial, it can really cause problems, especially if they're the ones with the medical power of attorney or the medic financial power of attorney, and they need finances or they need medical help them they're saying no, they don't. It can really cause trouble Plus, you've got probably previous family conflict from before that might rear its ugly head. And that can make things very complicated.
Steve 21:25
Excellent, excellent. Loss of financial resources. How can this happen?
Elizabeth 21:31
In all sorts of ways. It again, we're going back to the denial by the family member, and if they're in denial, they can find out that their loved one actually sold assets at a very low price, closed accounts, hidden money, didn't pay bills, such as the mortgage or property taxes, or my father in law's case for Macy's Bill had paid it every time he got a statement about his credit, he kept paying it as a bill. Fortunately, they refunded us the large amount that he thought he owed.
Steve 22:05
So it can happen for all sorts of reasons. Yeah, yes, yes. Okay. caregiver stress leading to illness and even death.
Elizabeth 22:15
This is the biggest danger for caregivers. 63% of family caregivers over the age of 65 die before they're one they're carrying for does, it's huge. That was on the Family Caregiver Alliance website at the time when I wrote the dangers of denial. Also, the Journal of American Medical Association says 66-96 for age as a caregiver, and but they give the same 63% have a higher risk of death than non caregivers that same age. And the Stanford Medical study has 40% Because they were doing all ages, not just over 65 or 66 as a caregiver, but all ages 40% of Alzheimer's caregivers die before the patient. And it I liked what they said it isn't disease or accident that takes these caregivers, but rather the sheer physical, spiritual and emotional toll of caring for someone struggling with Alzheimer's.
Steve 23:23
Yeah, we had one of the members of our men's group where you could just watch his deterioration occurring. And it was a sad, sad situation. He eventually passed away before his wife did as well. Okay, well, now we've talked about all these issues. Let's talk a little bit about how you overcome some of this, which may be easier said than done. But at least let's talk about what your experience been. Let's start with figuring out what's triggering the denial.
Elizabeth 23:57
Yes, that's important to get to the root of it. And it can be kind of hard, but it can be a lot because it can be a lot of things like fear, or anger, or pain or helplessness when you get those words, Alzheimer's or dementia. And you're thinking, Oh, no, what does this mean to my life? Am I going to have to quit work? What is going to happen to, you know, my marriage? I mean, there's all sorts of ways it can impact your life. And so denial is a way again, like we talked about to figure out how to accept it. But when you stay in denial, you just make more problems.
Steve 24:33
This is a definite benefit or way I overcame it, talking with friends and loved ones. Why don't you talk about that?
Elizabeth 24:41
Yeah, it really is one of the best ways because those people know you like in your case, they know you and they can know why you're in denial and help you get to the root of that.
Steve 24:51
Yeah, my simple story was my best friend Michael Todd. He was very good. As a support group person, and he, whenever I was at the windowsill ready to jump figuratively, I would call him and he would talk me off the ledge, you know, he would say, Well, now let's Well, wait a minute. What about all the things that you have done? What about how she's doing now? Let's take a stock in where you're at, because I think you can spin yourself into a bad situation pretty easily as a caregiver. Okay, how about professional help?
Elizabeth 25:33
Counselors are a great way pastor, or I also find journaling is great. That's something you can do on your own, but journaling down how you're feeling and just has a therapeutic aspect to it.
Steve 25:47
What about support groups?
Elizabeth 25:49
Those are fabulous. It really helps to talk to other people that are going through the same thing you're going through.
Steve 25:55
Couldn't agree, I agree with you more. Okay, what about diagnosis,
Elizabeth 26:00
that actually is a tool for learning how to accept it, because when the doctor is sitting there and giving you the information about your loved one, it really makes you face the facts. Also, he might be giving you information that helps dispel some of the fears that you had, and helping you realize how you're going to go forward from there.
Steve 26:22
You just mentioned the word information. And what do you think one of the best sources for information might be?
Elizabeth 26:29
The Alzheimer's Association alz.org is one of my favorite places to send people. And here in Orange County, California, we're fortunate to have Alzheimer's, Orange County. And both of those, and other Alzheimer's associations throughout the country have free classes, things like how to communicate with your loved one is a big one, because you're going to have to learn, as we talked about coming alongside them in a positive way. But also other problems. They'll help you with all sorts of other problems. Alzheimer's Association has a 24 hour helpline. So there's there is help out there there is people that can help you. And as you learn that you're going to learn to face the situation and not be in denial.
Steve 27:17
You are such a wealth of knowledge, my dear. It's just amazing. I'm remember meeting you and hearing you give this talk on this topic and walking away boy thinking I wish I had known all of this way back when. But one last question. If you had to talk to all the caregivers that are out there, we don't reach all of them. But what would you say is probably the most important thing that you think a caregiver needs to know or do.
Elizabeth 27:49
I think something that's very hard to do in our society, and that is to slow down and enjoy the moments there are going to be good moments on this journey. You can create them, right things, activities you do and time you spend, but slow down, they're on a slower path, you need to go on a slower path.
Steve 28:10
So prophetic. Well, thank you, Elizabeth. Like I said, just a sage. In closing, I think we want to make sure to mention that if you're thinking about trying to get some good reading material, and you're in the middle of your journey. Or in your early part of your journey. These two books we mentioned, a gradual disappearance and dangers of denial are great, great books. They aren't tunes. They're good reads. They're maybe 50-60 pages in length. And they're available easily. You can get them on Amazon, you could also use a Kindle service if you happen to be that. But Elizabeth also has a website, which is long, but we'll go ahead and tell you what it is. It's Elizabeth E l i ZABETH. Lon Seth LONSET H novels and o v e l s.com. And they will ship you a book at a very affordable price, I think.
Virginia 29:16
Thank you so much for being here. We'll put the links to those sources in the show notes for our podcast, so people can easily just click on them and go right there.
Steve 29:26
Again, thank you, Elizabeth, thank you so much for coming. Thank you for having me.
Outro
Spotlight on cares produced by the University of California Irvine Institute on memory impairments and neurological disorders. UCI mind interviews focus on personal caregiving journeys, and may not represent the views of UCI mind. individuals concerned about cognitive disorders, prevention or treatment should seek expert diagnosis and care. Please subscribe to the spotlight on care podcast wherever you listen. For more information Visit mind.uci.edu