Spotlight on Care

Person-Centered Care and Empathy with Lynda Everman and Don Wendorf

May 20, 2021 UCI MIND Season 1 Episode 8
Spotlight on Care
Person-Centered Care and Empathy with Lynda Everman and Don Wendorf
Show Notes Transcript

In this episode, Virginia and Steve are joined  by husband and wife team, Don Wendorf and Lynda Everman who discuss their journeys as caregivers for their loved-ones with dementia.  They introduce the concept of Person-Centered Care  and help us understand how empathy is critical to dementia care.  What would like to hear about next? Email us at [email protected]

Steve  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.

Virginia  0:24  

Hello, and welcome to Spotlight on Care. I'm Virginia Naeve, and I'm here with my co-host Steve O'Leary. Today's topic on caregiving is the importance of having empathy when caring for someone with dementia.We're lucky to have a very special husband and wife team talking with us today. All the way from Alabama I might add.  Lynda Everman is a special lady to UCI MIND as she was not only a UCI alum, and employee for 27 years on campus. She was also a very active volunteer at MIND before moving to Alabama a few years ago.

Quite some time ago while working on campus, she and Richard met and married in 1991. They both retired in 1999. as Richard was diagnosed with mild cognitive impairment at the age of 57. It converted to Alzheimer's disease in 2007.

Lynda was his caregiver for 15 years until he passed away in 2012. Before all of that, Lynda was a caregiver to her mother who was paralyzed by a stroke. Then her father was diagnosed with vascular dementia. Her road has been anything but easy.

She's the very definition of an advocate and works tirelessly for the cause. She is a founding member of three national networks under the umbrella of Us Against Alzheimer's, has edited and contributed to many caregiver books, and partnered with another advocate to get what they call a semi postal stamp approved by the United States Postal Service to raise money for research. Her efforts have currently raised more than $1.1 million dollars for NIH funded research for Alzheimer's disease.

Our second guest is Lynda's current and wonderful husband, Don Wendorf. He was a practicing psychologist who retired in 2013, to be a full-time caregiver for his wife who suffered for 15 years after a debilitating stroke.His wife passed away in 2014. He was also a caregiver for his mother-in law when she had cancer, his father who he had Parkinson’s and his mother who had Alzheimer’s disease. Not only is Don a psychologist he also happens to be a wonderful jazz musician.   He’s a very talented guy.  Lynda and Don met each other while contributing to a book called Seasons of Caring, Meditations for Alzheimer’s and Dementia Caregivers.  It seems to me was a match made in heaven. Welcome, Lynda and Don. 

 

Lynda 3:27

Thank you for such a gracious introduction.


Virginia 3:30
 Let's begin. What is empathy? And is it the same as sympathy or compassion? 

Don  3:38  
Good question. Um, I usually start off when I talk about empathy and give a little story from To Kill a Mockingbird. Okay, Atticus Finch is telling his daughter Scout about empathy, essentially, using the advice of an old Native American proverb. First of all, he said, if you can learn a simple trick Scout, you'll get along a lot better with all kinds of hopes. You never really understand a person until you consider things from his point of view, until you climb into his skin and walk around in it. That's what empathy is, is the ability to identify, oh, that person is feeling anxiety and understand somebody else's feelings. Not necessarily experiencing them yourself. But you're getting their thoughts, their reactions, their intentions, their motives, their problems, their strokes, whatever it is that's going on. You're getting it from their perspective, you're getting inside them, you're walking a couple of miles in their moccasins, so to speak. So you may not necessarily even agree with their perception about what's going on, or their analysis of the situation that's leading to their reaction to it, in the first place. You may not necessarily agree. But you're able to say, I get what this person is feeling. I felt that I know what anxiety feels like. That's what they're experiencing. It’s seeing it from their point of view, compassion and sympathy are kind of similar. But it's really more from my point of view, it's my reaction, I see that you're in distress. I see you're having a hard time. And I feel compassion for you. I feel sympathy, I feel sorrow, I feel some concern about you. But again, that's more from my perspective, rather then, I'm getting it. I'm seeing what you're feeling.

Virginia  5:42  
So Lynda and Don, what does that term dementia mean to you in the context of empathy?

Lynda  5:52  
Well, I think one of the things that you have to think about in terms of dementia in the context of empathy, is we have to have a full understanding of dementia. And, you know, until you have been a care partner, you might believe that dementia or Alzheimer’s is only a memory loss. But memory loss is it's very evident. Of course, being deeply forgetful is one of the first signs, but it's really only the tip of the iceberg with dementia, and memory loss and other manifestations vary with the type of dementia and also at the stage of dementia. So less obvious are things like changes in thinking, changes in language, changes in judgment, problem solving, perception, sensation, smell, gait, balance, coordination, inhibitions, impulse control, a sense of time, a sense of humor, having filters having bodily controls, it's very pervasive. And, um, you know, so you have to get past thinking of Alzheimer’s or dementia as just being forgetful. And this creates a challenge for care partners because we might not recognize it. And of course, we don't want to recognize it. So. So we might write it off, we might write off the not balancing the checkbook as being under stress, or not remembering the doctor's appointment. As you know, we're retired, we can't keep track of what our days are. And an example that comes to mind for me is with my late husband, is I had social worker to come to the house to help me evaluate Richard’s level of dementia. And I went off to another room while she was in the house. And she had been finished her visit. And as I was walking to her to the door about an hour later, she said to me, um, well, Linda, for the first 20 to 30 minutes I was there. I thought you were making this up. You know, she was like, I couldn't see anything going on with Richard. But she said after 20 to 30 minutes, he began to repeat himself, and he became very anxious that you weren't in the room, you know, and so she'd be she listed a number of behaviors that manifest but it took a while for them to manifest.

Don  8:56  
Let me qualify some of these things that that Lynda has been saying to this all varies you know, the term dementia is kind of a catch all umbrella term. There are dozens of different kinds of dementia. Most people have heard about Alzheimer's, which is most common, but there are dozens of different types of dementia. My dad had a little bit of dementia with his Parkinson's, my late wife Susan had a fair amount of dementia with her vascular dementia. She had stroke after stroke after stroke. But she had all sorts of physical kinds of stuff too, so did pop with Parkinson's. But even there, even if you know, a person with a particular type of dementia, you know one person with a particular type of dementia, the course how what happens, how things progress, how they show themselves vary enormously from individual to individual. And then just when you sort of get used to it, things change because we're talking about a progressive degeneration. And dementia is just some kind of loss of functioning that happens in the brain. Well, the brain only controls everything. So you can see all kinds of different problems and symptoms that people going on.

Lynda  10:08  
And then put that in the context of normal age related changes in vision in hearing in balance in memory and taste. And those normal age-related changes, may or may not be something that a person experiencing cognitive impairment can communicate with you. Oh, and let me throw in pain. What if your loved one is in pain? But they can't express that to you?

Virginia  10:40  
That happens so often, especially I know, with women with UTIs. Oh, they act out they they hit things. And what's really going on is they're uncomfortable and they're in pain, and they can't express it.

Don  10:56  
Exactly, yeah, my dad had a lot of problems with UTIs. And I could tell one day from the next, I knew when he had a UTI, because his level of cognitive functioning would be very different, within the space of a couple of days, get him on an antibiotic a couple of days, he's back to where he was beforehand. So people learn to look for that kind of stuff.

Lynda  11:17  
And let's make it even a little more complex by adding in that some people are very aware of their changes and their losses, and others are not 

 

Don 11:29

Especially early on. 

Lynda 11:30

And so for instance, Richard was very aware in the early stages of his difficulties that he was having. And then add into that, how, how does how do you react to grief and to loss? Are you a person who is able to express it to your loved ones? Or are you someone who puts it inside? Or are you someone who, instead of expressing sadness, I'm going to express anger.

Don  12:05  
Right. Because we're still individuals, even if you've got dementia, you're still an individual, still a person with your own history, your own experiences, your own personality, your own different ways of expressing things? My mother never did realize that she had Alzheimer's.

Virginia  12:19  
My mom didn’t either. She knew there was something wrong. I always say that to people. She knew there was something wrong, but she could never say what it was. 

Don  12:28  
Yeah. And yet my mom was very aware that she needed my help on all kinds of stuff. She didn't have labels to say, Oh, yes, I have dementia, I cannot do this anymore. She knew she had to ask me for help.

Virginia  12:42  
Now, Steve's wife, that was different, wasn't it? Steve?

Steve  12:45  
Yeah, I was just gonna ask you, Don, you know, I run a men's group with probably about now about 20 different guys who have gone through that group over the last seven years. And one of the things we've picked up on is the awareness of the disease is an asset, if they're recognizing it, because it makes it seems to make it easier for both the patient to accept or understand a little bit, at least in the beginning, what's going on. And, and then also, certainly for the caregiver, that the person is accepting the fact that they have the disease. That was Patty's case, that was the value of testing.

Don  13:24  
I very much agree with that. Although, I mean, it's kind of a double edged sword, because then also that person is very aware of what they can't do of what's going on what's going to progress from their what they're losing what so there's, there's a real grieving process that goes on, like Lynda was talking a minute ago may not show up is as grieving they may not be able to express, you know, I'm sad because I can't do this anymore, and may look like anger, especially in men, men, men love to cover up all sorts of emotions with anger. So yeah, there's pluses and minuses about it, I guess.

Virginia  14:01  
So you're going to go on to talk about Person Centered Care. What is Person Centered Care.

Don  14:11  
What we're talking about here is the belief or understanding that in spite of dementia, in spite of loss of different kinds of abilities, there is something essential to that person as a person, their personhood, their core, their essence, their soul. Different people use different kinds of concepts to describe all that. But it's basically saying, that person is still in there somehow, somewhere, maybe very difficult to access you. And you probably going to have to make some changes, you're going to have to learn how to make contact and access but that even in very late stages, there is something essential to that person is a person, that if you know how to go about doing that you To be able to make some kind of contact, it's not going to be contact and a conversation like we're having now, it may only be a smile of recognition or hand squeeze of I love you. Not only are they there, but their needs as a human being are there.

Lynda 15:16  
And I would say, what Don is saying is especially true in the later stages. Richard was diagnosed with mild cognitive impairment in 1997. And it generally, mild cognitive impairment will convert if it's going to, to Alzheimers within three to six years. In our case, it was 12 years before it converted to Alzheimers disease. So, so and, and, and there's a plug for early diagnosis and intervention, you know, and lifestyle intervention that improves the quality of your life and hopefully, slows the progression of the disease. 

 

Don 16:01

Remember, when somebody gets diagnosed, and they're symptomatic, and they're showing different kinds of problems and stuff, that disease process, depending on what kind of dementia is, has probably already been going on for decades. But what we call early stages, is really pretty far in. 

 

Lynda 16:20

But what Don was referring to earlier, and really needing to address, you know, that the person is still there? Well, part of that is also addressing the stigma that we attach to Alzheimer’s or any mental illness, that, you know, you get a diagnosis, for instance of diabetes, or cancer, your friends don't drop away, or stop talking to you or refer to you as the person living with diabetes or the person with cancer, you know, or, and this is a good one, or talk to your partner or your spouse instead of to you because they don't think you can understand. But um,

 

Virginia 17:15

You know, Lynda, what I remember is a lot of people would speak louder, as if my mother couldn't hear. She never lost her hearing. But they would speak like this. And I think, “Oh”. 

 

17:20

So part of Person Centered Care is what Don said, is that, um, well, let's talk about the person and what this whole person needs. So let's not label the person a patient, unless, of course, they are seeing a doctor, you know, they may get somebody.

Yeah, but let's look at even though there are difficulties in the early stages and mid stages, let's look at what the person can still do what gives you meaning and joy and purpose and fulfillment. So and then, of course, as the disease progresses, and it becomes harder to communicate in ways that we are used to. Don't forget that the core of the person, the essence of who they are, is still there, and many of the things that they love and enjoy, can be enjoyed, you know, up till the very end.

Don  18:24  
Yeah, maybe in very in very different ways. For example, my late wife, Susan, was always a very giving person she loved to do things help support to give to other people. That was the hardest thing for her about her vascular dementia and all the limitations particularly physically because she got to where she couldn't really do anything for herself, I pretty much had to do at all was that she couldn't give. That desire was still there and I had to help her see that she was still giving to people. But it was in a different way. It was through her words and her caring and that kind of stuff. But again, the idea here is on the Person Centered Care is that the day you get the diagnosis, you don't die. I mean, some people think, Okay, that's it. They got they got Alzheimer's, that's it, forget it, move on to the next person. You're living with that, sometimes for many, many years. I mean, we have very good friends who have had Alzheimer’s for 15 or 20 years, who are still doing podcasts, going around giving talks, writing chapters for books, performing in bands or singing, doing part time pastoring, kayaking, doing all kinds of amazing things. You're still a person. Yes, it's in the context of dementia, which is very real and has to be dealt with.

Lynda  19:50  
And it takes a lot more effort. You know, I think about the early years with Richard and I think about when I first began to observe, while he was still working. He always had incredible ideas that he was able to have a vision and then implement. Well, in the last couple of years, it was kind of the broken record. It was the here's the idea. Here's the idea. Here's the idea, but it wasn't going anywhere. You know, and so kind of stymied in that direction. And, and also, more clouded judgment, although, as I said earlier, that wasn't something that I even recognized, because I wasn't looking for that. And because until that moment, until that time, he had always had wonderful judgment. So I continued to respond to him, as if he still had that judgment, and didn't see the subtle changes, aware, people on the outside looking inside that but I didn't see that. 

 

Yeah, you didn't want to see well, and, and, you know, you don't want to see it, because what does that mean? We know what it means. Yeah, you know, so, um, so we did a lot of compensating with things, you know, he always had a notebook where he made a list, and reminders, you know, I noticed that when he read books, initially, he would either underline or highlight, at the end, every book had every page underlined in red and blue highlighted in yellow, you know, paper marked. And that part is very sad. One of the things that Don said a minute ago, that really struck me, we do quite a bit of volunteering with respite programs. And one of the beauties of respite programs is that those who are running it, understand that a need for all of us is to help purpose and meaning and be able to give back. So they, they don't just play bingo, by any means, you know, they will do food drives, they will, you know, they will make if there is a conference or a dinner at the churches, they'll gather the flowers from the garden that they have planted and make flower arrangements for the tables, they will create gifts to have in their gift stores to sell to raise funds for their program. So all of us want to have purpose and meaning and companionship, connection. And dementia doesn't take that away.

Don  23:03  
It may make it harder for us to do that on our end. But people still want to be productive. They want to be competent, and they want to be seen as competent, they want to be able to do something properly. Well, they want to be useful. They want to give to other people they don't want to just receive they're receiving all kinds of stuff. Spiritual needs are still there.

Virginia  23:27  
Absolutely. My mom could sing hymns to the very end, she didn't know my name. But she could sing every word of a hymn that she know.

Steve  23:36  
Yeah, I had kind of a follow up question. So you know you this is an interesting concept, this Personal Centered care Person Centered Care what do you what do you think? are maybe the three or four or five tenants of this if one of our listeners was saying oh, I get this which is care more adapted, not general care, but care adapted to the person that I love or have lived with and have lived with for a long period of time? What are the what are the four or five things that they ought to be conscious of that they can we can kind of stick in their brain?

Lynda  24:11  
Well, I think first of all, you kind of flip the lens and look to the person, look at the person that you love. And think about what are the things that drew you to this person? What is unique about them and what is still there with them? And, you know, I think that's very important.  For Richard, Richard was always a contributor and very generous and he had a lot of interests. When I finally had to move him to assisted living you know, you have to fill out the form that says, “Do they like broccoli?” well you know, who cares? I'm mean you should care but I wrote a two page biography of who he was, what his interests were, what his accomplishments were, what his contributions are, were, because, and I wanted that to go in his care notebook, hopefully, so that the care partners there would talk to him about flying, golfing, computing, architecture, books, politics, music, you know, versus thinking, versus seeing the mask of dementia and thinking, this is a person worth investing time. And so I think, who is this person, and just because they have dementia, that has not gone away, that can give them joy, it can give you joy, it can lead to moments of a connection, Virginia said that her mother didn't know her name. Richard didn't always know my name. He didn't always know that I was his wife. One time on a visit, he thought I was his sister. But one of the phrases that I use is, the mind may forget, but the heart remembers. 

Virginia  26:24  
I love that you wrote that down in in this sheet that you sent me. And that meant a lot to me. Because up until the very end, I would walk in and my mother could not remember my name. She did not know she gave birth to me. But she knew I was good.

Don  26:44  
Right, and that you cared about her. And that, that you were somebody that she could trust and care for. 

 

Virginia 26:50

100%, Yeah.

Lynda  26:53  
And so I think so. Person Centered Care allows us to put our own egos aside and recognize that in two words, love indoors. Yeah. You know, and it isn't important. If I'm Mrs. was Mrs. Everman. If I was Richard's sister, his mother, his wife, his friend, I was someone that he trusted and he intuitively knew that I had his best interest at heart.

Don  27:28  
Yeah, now you may have to get into their reality. So you don't argue No, I'm not your sister. I'm indeed you don't get into all of that you've got to kind of join where they are in their reality of things. But you know, going back to Steve's question, 

 

Lynda 27:44

And that's one of the tenants, go in! 

 

Don  27:46  

Go in! Meet them in the moment where they are but it's we keep using this word person is continuing to say this person well what do we think about any person what do we know about what makes a person a person valuable and some of those things may change or other things may get in the way of tapping into that. But look for those qualities. One of the things that I did I with my late wife is with her strokes, there was a lot of not so much memory impairments there was early on and that kind of came back that got pretty good. But a lot of physical kind of stuff and some personality changes and how she expressed emotions and some changes in judgment that I wasn't really very aware of until I would tell some stories about that. But I perceived the I had to do all this muscling her I had to lift her up, I had to bathe her I had to dress her I had, it was a lot of muscle stuff. It was very hard on my back and my shoulders. And you know, I was kind of sore all the time. And I saw her as being resistant as not trying hard enough. You know, as good just giving me a hard time about everything I’d say, “Okay, we got to stand up”. “Now”. “No, three hours ago, no last Thursday. What do you mean now? Of course, I'm standing here, you know?” And this always makes me cry. So you may have to finish the story.  No, you go ahead. And finally, I was able one time to ask her in a moment that wasn't under stress. “You know, what's going on with this?” And what she said was, “I'm afraid all day, everything I do. I'm afraid. Everything I do, I'm afraid I'm gonna fall. I'm afraid I'm gonna knock you over. I'm afraid I'm going to hurt you. I'm afraid I'll make you mad at me, I'm afraid I'm going to displease you.”

Virginia  30:03  
Do you think of that as what they call, a moment of clarity? I mean, that sounds like a real rational thing to say.

Don  30:11  
I think the reason she was capable of saying that was because it wasn't in one of those moments where I'm wrestling, and I'm scared, and I'm afraid I'm going to drop her, I'm afraid she is gonna hurt me. You know, and she's already displeasing me, because I'm thinking, she's being resistant. And yet it's what it's the empathy thing, because it put me inside her perspective. And I could see it from her perspective, what I should have realized, and this is where it took me to is, wait a second, who is this person? This is the person you fell in love with that resistant oppositional person. No, you know, that not who she ever was,

Lynda  30:54  
We try to, I think, I think that experience, you know, rather than describing tells you how you get to empathy. We, who fortunately, at this point, do not have cognitive impairment, try so hard to reorient our loved ones, because if we could only get them to see to understand, then we wouldn't have to do this, we wouldn't have to do this, it would be more like always been you now, we, there are so many losses, and there is so much grief, and we struggle for control. And it's not that we say okay, we're going to be in denial. It's like, you know, we can overcome this. Oh, if only I could make you understand 

 

Don 31:54

So desperately holding on to hope.

 

Lynda 31:58

And when you realize that you really don't have control. And that you need to let go of your vision of how things are or you want them to be and try to imagine how the other person feels, then it is really an “aha” moment for you.

Virginia  32:22  
I wish I had learned that so much earlier than I did. Because she was my mom, my mom, who was always someone I would go to for advice. And she was my best friend.

Don  32:34  
Ya and it’s hard to think that's still mom. But that's the person-centered thing is the idea that yes, there's, she's in there someplace, there's a bunch of stuff getting in the way and a bunch of limitations on how she Yeah, and how she can express it and stuff. But there's some core essence of mom, that's that's there.

Lynda  32:53  
And her loss is also your loss, as she became less mom to you, you became less daughter.

Virginia  33:03  
Which for a long time I just presented it, I didn't understand it. I couldn't grasp the fact that I was having to become almost like a parent

Lynda  33:12  
Exactly! And you do that with your parents, you do that with your spouse, your partner, and what a loss, what a loss to lose your spouse who is your lover, your partner, your person who shares decision making, the person who hold who holds your history, you know, and so you're grieving what they are losing, but you're also grieving what you're losing.

Don  33:47  
And what you're losing together. And remember, they're if they're very aware of what's going on, they're grieving also.

Lynda  33:54  
And, and it took me a long, long time to figure that out, too. Because you know, stiff upper lip,

Virginia  34:02  
I'm kind of glad to hear you say that, Lynda.

Don  34:05  
Everybody's telling you, oh, you're so strong, and you're inspirational. And you're, you're my hero and you're a saint. Boy, don't let anybody tell you stuff like that. They don't see you in some of those difficult moments. Like I threw an absolute two-year-old temper tantrum one time. 

 

Lynda  34:24  

The psychologist! 

 

Don  34:25  

Yeah. And I was literally throwing things all around the living room. I was so frustrated and angry and upset and anxious and scared and grieving is what I found out later. You know, that was all part of what I was dealing with. But I wasn't aware of it yet. But you know, even in the middle of all of that I threw pillows because there were all sorts of I had like a couple of guitars and a mandolin and a banjo in the room and I don't want to hurt those. But yeah, I mean, I threw it an absolute temper tantrum. And, Susan just sat there and watched it when he finished, he said, “y'all through now?” “Yeah.” “Can we have supper?” But that's the reality, this is tough.

Lynda  35:13  
I can remember a couple of occasions that that my views change dramatically. And one was, um, and this was, say, 12 years into the disease, we were in East Tennessee. And we were standing in our kitchen, Richard was at the kitchen sink, looking out the window out the Smoky Mountains. And he had his back to me. And as he looked out the mountains, he said to me, “You know, I hiked that mountain range this morning. And it was really tough. And it took me all day to do it. But I did it.” And I'm hearing the pride in his voice, and with every word, he's saying, I'm feeling more and more anxious. I mean, I can just feel myself, I can feel my bodily response. And without thinking, thinking this was a kind thing to say. I say to him. “Oh, no, honey, you didn't do that. You were here with me all morning.” You know, you know, if I can only make him see how things are, we wouldn't have to be here, right? Well, he turns around and looks at me, and not with anger, but looks me in the eye and says, “Why do you always have to be right?” And you could have just, um, I mean, that just knocked me over my immediate response at a very visceral level was, I don't have to be right. I don't, I don't have to be right in the moment, for sure. You know, and, um, and then that that's where I learned. That's where I learned that it's better to be kind than to be right. And that if you can, try to understand how your loved one is feeling.  How would I feel if I were in that situation? And I said to you something that I felt proud and competent about when I had so many few things to report. And you just dashed it, you know. 

 

And another time that I had an “Aha” moment was about the same time. Alzheimer’s East Tennessee brought the Virtual Dementia Tour to East Tennessee. And of course, now we have virtual tours, like through Embodied Labs and other ways where we don't even have to leave our house to take a virtual dementia tour. But at that point, and it's still going on, it's about 30 years old. Second Wind Dreams virtual dementia tour came to Knoxville. And so on the virtual dementia tour for those who have not done it, our room is set up. But the people who go through the tour and the tour is only about five minutes, maybe you're given goggles, so you can't quite see you put on a headphones that have noises going on in your ear. You wear gloves that may or may not have BBs in them to give you a sense of what neuropathy might be like. There's something that goes in your shoes. So basically, your physical senses are both obscured and bombarded at the same time. And then you are allowed into a room where the lights are dim because you know, if you had cataracts or macular degeneration you might not be able to see as well. And through the mic through the earphones, through the noise but you can hear somebody is talking in a very insistent voice and telling you what things that need to be done. You know, pick up that laundry and fold it now move over their chair class in the sink, but you're given instructions, and I thought I knew everything about dementia, what my loved one was experiencing. And this is happening to me and within just a couple of minutes once again. I'm so anxious I'm perspiring. I can feel my heart beating and I'm about to burst into tears. And about that time, one of the volunteers comes up and puts both hands on one of my arms on my arm and my shoulder, and says in a very comforting voice, “Don't worry, I'm here to help you.” And all of that tension just went out of my body. And so I realized, with that, I mean, it was such an experience, I realized, so many of the difficulties that someone with dementia can be experienced, not just memory loss, folks. Also, how powerful is the Ministry of Presence? How powerful is human touch in a soothing voice and reassurance? You know, you don't have to do heroic things to help your loved one.


Virginia  41:00 
You almost wish all caregivers would experience what you did? Well, we can't thank you enough for being here. I want to, it's probably time to wrap this one up. But I want to go to the poem that you and Don sent me called, “If I get dementia”. And Lynda will start that. And just it just kind of helps you understand what it might be like. If you didn't get… 

Lynda  41:48  
Yes, this is a beautiful poem that was written by Rachel Wonderland. And it's called, “If I get dementia”. If I get dementia, I want my friends and family to embrace my reality.

Don  41:57  
If I get dementia, I don't want to be treated like a child. Talk to me like the adult that I am.

Lynda  42:03  
If I get dementia, I still want to enjoy the things that I've always enjoyed. Help me find a way to exercise read and visit with friends.

Don  42:15  
If I get dementia, ask me to tell you a story from my past. If I get dementia and I become agitated, take the time to figure out what is bothering me.

Lynda  42:25  
If I get dementia, treat me the way that you would want to be treated.

Don  42:30  
If I get dementia, make sure there are plenty of snacks for me in the house. Even now if I don't eat, I get angry. And if I get dementia, I may have trouble explaining what I need.

Lynda  42:41 
If I get dementia, don't talk about me as if I'm not in the room.

Don  42:45 
If I get dementia, don't feel guilty. If you cannot care for me 24-hours a day, seven days a week. It's not your fault and you've done your best. Find someone who can help you or choose a great new place for me to live.

Lynda  42:59
If I get dementia, and I live in a dementia care community, please visit me often.

Don  43:06  
If I get dementia, don't act frustrated if I mix up names, events or places, take a deep breath. It's not my fault.

Lynda  43:16  
If I get dementia, make sure I always have my favorite music playing within earshot.

Don  43:22  
If I could dimension I like to pick up items and carry them around helped me return those items to their original places.

Lynda  43:30  
If I get dementia, don't exclude me from parties and family gatherings.

Don  43:36  
If I get to mention know that I still like receiving hugs or handshakes.

Lynda  43:40  
If I get dementia. Remember that I am still the person you know and love.

Virginia  43:48  
Well, Steve and I cannot thank you both enough for being here with us today. sharing stories and advice and I feel certain that you'll join us again at least I hope so. 

 Don 44:03
Absolutely.

Steve 44:05 
Yeah, I would just like to add my thanks as well you guys are special and your understanding is special and it's a great opportunity for us to have you on

Virginia  44:17  
And for our listeners. Please join us again soon. On Spotlight on Care.

Steve  44:24  
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