In this episode, co-hosts Steve O'Leary and Virginia Naeve address the topic of anger, a common emotion experienced by many Alzheimer's disease caregivers. Their guest, Roger Lisabeth shares some tips for developing patience from his own experience in caring for his wife, Lucy. What would like to hear about next? Email us at [email protected]
Steve O'Leary 0:06
From the University of California, Irvine, this is UCI MIND’s, 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.
Welcome to Spotlight on Care. We're excited to be bringing you a message today talking about caregiver stress and anger and how you deal with it. And before we introduce our, our interviewee, Virginia, how about you tell us a little story about your experiences?
Virginia Naeve 0:43
I'd love to Steve, Thank you very much. You know, I, I honestly can't remember too many times that I had true anger with my mom. She was pretty darn easy going person, especially before Alzheimer’s, when she had Alzheimer's. She had her moments. But, you know, there is a story that I do remember when my emotions got the best of me and I'll tell you about that. My brother Jim was going to have a nice visit with her and got to her room and found her doubled over in pain. She couldn't, of course, explain what was wrong with her Alzheimer's. They can't, they can't explain what's wrong or how they feel really. So he can, he correctly concluded that she needed to go to the hospital. So off they went. And eventually mom was checked into a room. And I came over and I relieved my brother, said thank you and I sat with mom. And she was connected to a picc line with needles and tubes. And she had a huge heart monitor taped to her chest. And she wasn't horribly happy and I wouldn't have been either.
But anyway, all of a sudden, she got very upset. And she started ripping out the needles and the tubes. And then she went for the heart monitor. And she pulled the tapes off of her chest. And I thought, Oh my gosh, I went over to her and I said, “Mom, stop, stop. Don't do that!”. So I ran out, got the nurse, nurse came back. She reinserted the needles, reconnected the tubes and retaped the heart monitor onto her chest and left. So I'm sitting there with mom and she starts to pull out the needles again. I couldn't believe it. It was happening again. I ran to get the nurse and she came in and re-hooked up everything. So I thought this is not going well. So then a doctor came into the room. And he did a couple of things. And then he looked at me and he said, “Is that your purse on the floor?”, and I said, “Yeah”. And he goes, “Get it off the floor. Haven't you heard of C. diff?". I said, “No, I haven't heard of C. diff”.
I since have learned what C. diff is and it is the germ that gets all over everything. So I picked up my purse. The doctor finished. He left the room and mom started pull the things out again. Out went the needle. The tubes were everywhere. She was ripping out the heart monitor and I went over to her bed. And I grabbed her arms and I pinned them to her pillow with my hands. I, I honestly didn't know what else to do. I, I was upside down. And the worst part of this whole episode was when it was over, I released my hands and she looked up at me. I can hardly say this without crying. She looked up at me and she said, “I'm sorry”. I felt an inch high. I called my husband Bob and I said, “I can't do this anymore. I can't. Come over. Please come over to the hospital and take over. She can't be left alone. They think she can be but she can't. And I can't do this anymore”. So he came. I left and took a walk. And you know looking back if I had put earbuds in her ear and played Frank Sinatra, we might have had a different afternoon. But that was one of the things, one of the stories that sticks out in my head about when I got angry and I lost it
Steve O'Leary 4:57
That's a good story. Mine were, my story relates to repetitive questions. And all of us who are dealing with this disease have experienced this phase of the disease. But I did not handle it well at all. Patti would ask questions and ask them again, 10 minutes later, five minutes later. And you know, my reaction was that somehow I thought she wasn't listening to my response. I was reacting as if I was talking to a normal person, and expecting the fact that she would hear and understand what it was I was saying. And it took me several times of this to realize that the frustration and the anger that I was feeling was totally misguided. She did not remember that she had asked, it's that simple. And I think that that's a kind of a interesting story. I know our guest, Roger will talk a little bit about that, and in general about the whole issue. So let me go ahead and introduce Roger Lisabeth. He's a good friend, and also a big advocate for UCI MIND, and all sorts of Alzheimer’s care. So, Roger, welcome.
Roger Lisabeth 6:20
Thank you very much, Steve, glad to have the opportunity to share some of the background that I've experienced with my wife with Alzheimer's. My wife was diagnosed with Alzheimer's in November of 2010. And she was diagnosed as what is termed early onset Alzheimer's at the age of 62. And here we are today, 10 plus years later, and she's fortunately still with us. I know about two years ago, now I placed her in a board and care home because a little bit of what you heard from Virginia, it got to be too much to take care of her here at home. And I kind of realized that, you know, when we got married, she never expected me to be changing her diapers into be feeding her and those kinds of things that became an everyday occurrence, because of the condition that she had deteriorated to. So, you know, my topic for today is talk a little bit about stress and anger. And I can relate very closely with what Steve mentioned about, you know, wondering why his wife wasn't listening. You already answered that question. When you don't realize that the individual has Alzheimer's, that's a real easy trap to fall into. And yes, you sit back and you say, “Come on, you know, we had this conversation, I already told you that we already did that”, you know, and you almost if it was a child, you'd want to reach out and slap them. But then you got to sit back and say, wait a minute, this is not the wife, or the person, or the spouse, or the relative, or the child, or whomever that you may have been talking to two years ago. And I equate it a little bit to like, one day, I went to the optometrist and found out that I needed to wear glasses. And I walked outside with a new prescription. I looked at the trees, and I was stunned at how bright and colorful everything was. So my sight had deteriorated a little bit at a time to the point where I didn't realize it. And what also I've recognized is that my wife's ability to communicate and to be herself had appeared deteriorated a little bit at a time until one day we woke up and said, something's not right.
Steve O'Leary 8:43
That's good. Roger. Why don't you talk a little bit about how you gained patience through this process?
Roger Lisabeth 8:50
Well, I joke with our children, in that when they were growing up, I didn't have patience with them. And I joke with them saying I didn't realize that at the time that they now know that I had to save it for your mother. And it's, you kind of, there's been times certainly where I've said, “man, oh man, patience, where is it?”. You know, I need to have it and I used to an excuse this expression, but my wife actually was pretty good at embroidering and doing things creatively. And one time she put together a little plaque that was done in calligraphy and I used it in my office and it simply said, “Patience my ass, or my behind”, I guess I should say for the audience. But bottom line is, I've used that to reflect back. I can't tell you how many times that said, Yep. You know, she was kind of telling me something when she put that together for me and I didn't know it. I'm sure she didn't know it at the time either. But the reality was or is that that patience that I didn't realize I had, you wake up one morning you say you know what, I have to have patience. And by the way, it's not just the caregiver. It's the individuals who are surrounding this person with Alzheimer's, it's the children, it's the grandchildren, it's the brother, the sister, it's family members, it's relatives, excuse me, it's neighbors. It's everybody in anybody that's ever become close to the person who has Alzheimer's. They all need to understand this person has changed, and they're living in a new world.
Steve O'Leary 10:29
You talked about speaking about world, you talked about this whole concept of living in their world. Would you, would you mind sharing that with the audience?
Roger Lisabeth 10:39
Sure, you know, an Alzheimer's person has lost the ability to recognize and work with and understand logic. So you can't use logic to try and help them to get through their current situation, whatever it might be; a frustration with not being able to do something or frustration without being able to find something. Logic just doesn't work. And what you have to do is you have to enter their world, try to put yourself in their body and say, Okay, what is it that I can do to help them right now, it's certainly not to be confrontive, to be combative. It's try and understand the world that they're in, in the frustration that they're experiencing, and kind of roll with their punches, and sympathize with them, and work with them. And you know, sometimes it's as simple as reaching out and give them a hug.
Steve O'Leary 11:38
You know, you've talked to before about, I know you pretty well, and I would never associate the word calm with you. But I know that's a word that you've used when you talk about how you and Lucy get on together. So talk a little bit about how you've become calm.
Roger Lisabeth 11:55
Yeah, I have, I mean, I've never been patient, I've never been tolerant. But what happens is that, you know, life has changed forever, and nothing is going to be the same again. And you need to understand that. And once you understand that, you can have a calmness that goes along with it. And one of the things that, I, you know, fantasize, if you will, is that there was a camera on in every room that I was in, and that everything that I said and did with Lucy was being recorded, and did I want my children to see how I was handling their mother? And that helped to make me patient, stay calm, stay in the moment, recognize that the world for both of us had changed, and gives you a better perspective and allows you to get to the next minute. You know, a lot of people think about I got to get it to the next week, I got to get to the next year, maybe even or, you know, in when you're working with an Alzheimer's person, sometimes you got to think about how can I get to the next minute?
Steve O'Leary 13:03
Yeah, that's a great statement there, Roger. And that's an interesting visual idea of having cameras watching you. We all need to remember that somebody is watching, whether it's the Lord or whether it's a friend, or whatever it might be. I've heard you speak about, you know, this whole idea of your life and her life, and what was her life and your life together? Have you made the adjustment on, on your lives?
Roger Lisabeth 13:33
Well, I remember when we were diagnosed, or I always say we, because it is a diagnosis of a family. It's not a diagnosis of an individual. And what I've tried to do is to live in the future, but remember the past. Remember the good times, and even bring those good times up. Because I sometimes feel strongly that you know, when I talk about a good time from the past, I see this glimmer of a smile on Lucy. And I recognize this little bit of Um, I know it's in there because she's trying to tell me something. And sometimes I'm actually able to say, “oh, Lucy, I think this is what you probably met, right?” And I'll get a nod. So it’s um, I keep going back to you have to live in the present, and, and use the past as your motivation for remembering the good.
Steve O'Leary 14:39
You've talked about um caregiver burnout. And you know, you've lived with Lucy now for 10 years long time, and how do you deal with burnout.
Roger Lisabeth 14:51
The good news in respect to burnout is that there are lots of caregiver groups that you might be able to join There are groups that might be in your church, there are groups that might be in your community, there are groups through the Alzheimer's organization, there are groups through UCI. And it's important that you find one or more of these groups to be able to vent with to be able to tell you a story that you know somebody else has heard or dealt with. And I like to tell the story about one of the first, in the early stages, one of the first caregiver groups that I went to, and I was having issues with, when I would be away from the home, but Lucy was still capable of using the phone at all. She was having a difficult time to answer the phone. And one of these people in the caregiver group said, Well, I found an answer to that, that she recognized green and red. And I said, Well, yeah, I think she does. He said, Well, and there's a hand, we're talking about, you know, that cell phones here. What I would do, though, he suggested he said, put a green button where you want her to answer it and put a red button where you want her to hang it up. And so we did that. And that worked for six or eight months that allowed her to be able to continue to use the phone to communicate with myself or if somebody else called mostly often myself, but that I wanted to share that story. Because the importance of caregiver groups where you can find information to help you get through the next day, or whatever the issue is that you're facing today. Whether it be anger on her part, or frustration or yelling or screaming, there's all these things, you're not alone in caregiver groups are a great source to get help and get information.
Steve O'Leary 16:47
What about the stress you felt yourself? And yes, the groups help but how do you deal with it in a moment?
Roger Lisabeth 16:55
In my own personal case, I just look back to the good times, I reach out and just you know, a big hug.
Steve O'Leary 17:04
Okay. I wanted to ask you, you've spoken a little bit about this idea of the moment, and maybe that you might share a little bit about your sense of being in the moment.
Roger Lisabeth 17:18
You know, the moment changes, you know, it's a moment because that all that's all it is, it's a moment and the next moment is going to be something different. And being in the moment to me is trying to be in Lucy's moment, trying to be where she is right now. Whether it be you know, she's trying to communicate something and it's a little bit like playing the game of you know, Who Said What, and trying to help her get through that being in that moment with her not looking too far ahead. Just being there for her in that moment is what's really important than I've been told. And I believe that although they're not able to communicate it, and I, I strongly believe this with my voice, where she's in a home right now with caregivers, and they may be having some issues and they'll call me or now that COVID is over, I can go visit there, visit them. And they'll say she just quiets down when she hears my voice. And so that's kind of being in a moment whether as recently as this morning I had an occasion where she was just not ready to have breakfast and she was fighting and spitting out and the rest of that and caregiver gave me a call and I said, “Hey Lucy, it's breakfast time I’m eating my breakfast, you want to eat breakfast together, let's have a little conversation while we have breakfast”. And you know, the next thing I know, cereal’s going down and she's not spitting it out and I wasn't even there.
Steve O'Leary 18:54
Roger, you you've done an obviously an amazing job. And are there any final thoughts you'd like to have in terms of you know, what, what you would advise somebody who's dealing with this disease and you know, how they can control themselves? You've been controlling yourself for several years now. And you've been dealing with your own emotions, but what would you summarize it into?
Roger Lisabeth 19:20
I would say one of the things that has been of particular help to me that I have not yet mentioned that have that what I call that, go-to person you know who's that person it'll take your call at three o'clock in the morning. You know, I have what I call Level 3, Level 2 and Level 1 friends. You know, Level 3 friends I say hello to and we're casual and Level 2 friends you know, I learned a little bit about their family and stuff like that and they know a little bit about mine and then there's that Level 1 friend, who at three o'clock in the morning to look at and say, “Oh my goodness Roger’s calling, I better pick this up”, and having that one person or maybe more if you're fortunate that you can call and talk to. And I'm very fortunate in that I've got two or three people that when I'm really frustrated, and I just don't know what to do, and literally, I want to take and break something, or someone what I do, get on the phone. “Hey, so what do you think? You know, let's talk about something. I'm really having a hard time now. Well, what do you want to talk about? Roger, I don't care. Just talk to me. Calm me down.” And if you can find that person, you're so fortunate, because it's so important that that person, understand what you're going through. And through UCI MIND, I found a few of those people.
Steve O'Leary 20:43
Yeah, I was lucky enough to have a great friend, he's since passed away. But I, I referred to when I was ready to jump out the window, as that, as that moment that I would call Michael, my friend, and he would talk me off the window sill.
Roger Lisabeth 20:58
And I, you know, it could be anybody, but I would probably encourage it not to be a family member. Bringing the family members that much more deep into what you're going through, it makes it more troublesome on them. You know, one of the things that we haven't really spent any time on here is the anger and the frustration that family members experience the sons and the daughters and brothers and the sisters. And you know, some of them may not even be in town where they'd love to be able to help and do something that you know, could make a difference in my life and Lucy's life and maybe even their own. So I'm suggesting that it'd be somebody that you know, can be objective, and not be too close to it themselves.
Steve O'Leary 21:42
Yeah, I think that's, that's good advice.
Virginia Naeve 21:45
Yeah, I was just going to say that, that's really good advice. I was very lucky to have super supportive family members. But that's not always the case. I know plenty of friends dealing with these issues and their, their families are, I don't know what it is they want to avoid the problem. They just don't want to learn all the horrible things that are happening. And it's nice when you have a friend or somebody you can call and say, “hello, I really need you to listen to me or just talk to me”, like you said, Roger. Thank you so much for joining us here today. You know, Roger, and I've known each other for quite some time now. And I also have known Lucy, over the years and very much like my mother, Lucy loves to laugh. I've loved her laugh. And because of the pandemic, I have not, of course, been able to even pay a visit. But we wish you and Lucy the very, very best.
Roger Lisabeth 22:39
Steve O'Leary 22:41
Well, that wraps up this session of a Spotlight on Care. Thank you, Roger so much, you were great. Please tune into future podcasts, we'll be covering such topics as the value of support groups, which Roger touched on the benefits of music and how music can be in a wonderful way to help your loved-one deal with their disease. We'll also be talking about the whole issue of children, Roger mentioned that as well. And how can you help your kids who were somewhat distant or removed from their parent or their or loved one, and how they can handle dealing with their mother or their father and the illness, we're also going to be talking about, you know, finding the right home care kind of capability so you could continue care inside your house. So we're going to have a myriad of different topics. We look forward to you joining us again, so please check back. There will be many more of these podcasts. Thank you for your time and your interest.
Spotlight on care is produced by the University of California Irvine, Institute for 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