Dr. Gary Chapman and Lisa Anderson discuss the challenges families face when a loved one is diagnosed with Alzheimer's disease or dementia. Our guests offer encouragement to caregivers and practical suggestions for showing love and support to someone with diminishing mental capabilities. (Part 1 of 2)
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1st Woman: Early on, I used to argue with Dan. And I found out that’s not such a good idea. You have to pick your battles. Now, if he says, “It’s blue” and it’s really green, I say, “Yes. It... it’s blue.”
Man: Yeah, I have some days of sadness. But I know I can’t stay there. I grieve each new loss and then I move on to do and be what my wife needs.
2nd Woman: He’s a different person, now. He’s like a 60-year-old toddler. He... he’s just not my dad anymore.
End of Teaser
John Fuller: Well, those comments reflect some of the pain and the difficulties in caring for a person with mental decline or dementia. And it might be that you’ve experienced that with a grandparent or a spouse or another family member. We’re going to talk about that today on Focus on the Family. And your host is Focus president and author, Jim Daly. I’m John Fuller.
Jim Daly: John, this can be one of the most unsettling situations in our families and in our culture today, and that’s Alzheimer’s disease or dementia. It’s something that occurs more regularly. We’re going to get into the facts about it. But more and more people are being diagnosed in that way - typically elderly people but not always. We’re going to unpack that, talk about it - the pressure it puts on everyone - and what does the Lord expect of us in that moment?
Many of our listeners may be in that situation right now, or you have a friend or extended family member. I would encourage you to get a copy of the CD or the download or the smartphone app - whatever it takes - and point friends to it as well. It’s a great way for you to do ministry. If it’s not directly impacting you, you can help a friend in this way.
John: Yeah, and if you’re in the middle of a struggle, we also have counselors here. And our number is 800-A-FAMILY. Resources and helps, as Jim mentioned, at focusonthefamily.com/radio.
Jim: Our first guest is Dr. Gary Chapman. He’s been here at the Focus studios many times and he’s an author, pastor, counselor, radio host. He’s written numerous books - probably best known for his series on The 5 Love Languages. Gary, it’s great to have you back.
Dr. Gary Chapman: Well thank you, Jim. It’s good to be here.
Jim: And I’m excited for this book that you’ve written - Keeping Love Alive as Memories Fade .
We’ve also added one of our own, Lisa Anderson, who heads up our Boundless outreach, here at Focus on the Family. That’s for 20, 30-something singles. And it’s a robust environment for dialog. True dialog. And it gets...
Miss Lisa Anderson: Yes.
Jim: ...a little messy sometimes.
John: A lot of authenticity there.
Lisa: It is. (Laughter) We specialize in authenticity (laughter).
Jim: You do a great job, Lisa.
Lisa: Ah, it’s a lot of fun.
Jim: It’s so good to have you here. And I know you’re living in this space right now with your mom. So, thanks for coming and being vulnerable and addressing these issues.
Lisa: Very happy to be here.
Jim: Gary, let’s start with you on those general facts that I mentioned a minute ago. Give us the breakdown of how often dementia is occurring, the difference between Alzheimer’s and dementia regularly. What’s impacting people over 65 generally? What does it look like?
Gary: Well, 5.4 million people in this country have the disease of Alzheimer’s. That’s not the only form of dementia, as you well know and as you stated. You know, there’s vascular dementia, there’s Lewy body dementia, there’s frontotemporal dementia, but by far Alzheimer’s is the largest group.
Jim: What would be that definition of dementia, just the layman’s term? What does it mean when the doctor says you have a form of dementia?
Gary: Well, dementia is an umbrella term, obviously, that encompasses any of these that we’ve just mentioned. But it does mean that the mental abilities are on a downward trend and it will get worse as time goes on. With any dementia, today is the best day.
Jim: And it’s a kind of across the board diminishing of capability, right?
Gary: Absolutely, yeah.
Jim: Any kind of difficult - adding, subtracting, doing daily chores, just going to the grocery store.
Gary: Yeah, and it depends on the stage, of course. There’s different stages of dementia. And it gets worse as time goes on and they’re less and less able to do things.
Jim: Yeah, and we’re going to - we’ll talk about the stages in a little while. Let me ask both of you how dementia can strain and maybe even destroy family connection, family relationships. Lisa, what’s been happening for you?
Lisa: I think for me, I’m the youngest of six kids. And so, I had long wanted to bring mom into my home and care for her. But I work full time and I’m single, so I didn’t think that would be possible. And so I think my assumption was, when I finally found out that it would be possible, oh, OK. Well, I’m going to be the hero here. I’m going to come in and just take mom in and all my siblings are going to be like, you’re amazing. Thanks for doing this. What can we do to help you?
And I quickly discovered that having not had conversations around this topic at all prior to mom needing the care, we weren’t on the same page at all. And there were lots of differing opinions about what should be done, what level of care she needed, who should be doing that, who was going to pay for it because, you know, mom and dad were career missionaries and a pastor, they’re not millionaires. She can’t afford long-term care, didn’t have insurance, along those lines. And so, it’s been a struggle.
Jim: Let me ask you this - that’s very vulnerable of you, in terms of your motivation.
Jim: I mean, it’s, like, a hero thing.
Jim: You wanted to be - you said that - you wanted to be a hero. What was motivating that?
Lisa: I think, genuinely, I knew that I wanted to care for mom. I knew that I wanted her to feel part of a family. I knew I wanted her to finish well in this season of life. So, I think that was all genuine and very, you know, motivation was good there. But I think I maybe overestimated the, “I can do this!” You know, I’m just going to...
Jim: ...Kind of glamorized it, as to what it would be like?
Lisa: Yeah, I probably didn’t understand the amount of decline, you know. I hadn’t lived in proximity to her for the past, you know, 10ish years or so. So, I think I overestimated my abilities, underestimated her amount of care that she needed. So, I went in and I was like, we’re going to just - I’m going to get her some bracing exercise, I’m going to feed her good food, we’re going to do fun activities. (Laughter) I just thought I was going to like, start this awesome...
Jim: ...Let’s just play...
Lisa: ...Program for mom and it was going to be super. And it’s been just a lot harder than that.
Jim: Gary, sometimes, oftentimes, there’s a stigma attached to this diagnosis of dementia. It does portend a decline. There’s no way out. There’s no cure. It’s going to happen, typically, unless the Lord intervenes in some miraculous way.
Gary: Yeah, and it’s not uncommon that family members will have different opinions about what should be done. You know, I’ve worked with that through the years in my own counseling. And one says, well, we should put them in a home, that’s what it is for. And the other says, no, no, no, that’s mama, you know? (Laughter).
Gary: And so, not - and it’s a real struggle to know what is the best thing to do in a given situation. You know, with my mom, she lived to be 99. And I had sitters around the clock for eight years with her. I lived an hour away, and I would go down every week to see her. But I was able to do that, you know? And so she fell and had to go in a home the last year because she broke her back, and sitters couldn’t take care of her at home.
But there’s no one answer as to what is best. But each family grapples with, and - but we do have the responsibility, as a family, to take care of our aging parents.
Jim: And we’re going to get into that in great detail this time and next time, and I want to do that. But let’s get back to some of the definition. Alzheimer’s - we tend to blend all these things. Gary, describe in more detail Alzheimer’s and the stages of Alzheimer’s because that, if I know correctly, that is the more typical diagnosis; 60 percent or so of dementia is in that category. So, give us those stages.
Gary: Yeah. Well, you know, it can be divided in many stages. Some of them have - some books have nine stages. In our book, we simply talk about three basic stages - the early stage, the middle stage and the latter stage. In the early stage, which can last from two to four years, there’s short-term memory loss. That’s the first thing that happens, short-term memory loss...
Jim: ...Now everybody’s going, uh-oh, I’m in trouble because I didn’t know where my keys were today. (Laughter) Is that, I mean, is that really it? Or is that kind of normal and this is different?
Gary: Yeah, that’s kind of normal. You know, I said to doctor...
Jim: OK. I feel better.
Gary: I wrote this book with Dr. Shaw, a medical doctor whose wife had the disease. And I said to him, you know, I’m having trouble myself recalling names of people that I’ve known for 30 years. I said, I can tell you all about where they work and I can’t remember their name. I said, have I got problems? He said no, that is just old age.
Jim: You’re OK. (Laughter) I mean, that does - but people do worry about that.
Jim: In describing the stages, and sorry to interrupt this, but when should a person say, maybe I do have an issue? Who do I go see? What type of doctor do I go see? What do you do?
Gary: Well, one, in the early stage, also, they might lose interest in things that they were interested in through the years. They may also have personality changes, real personality changes.
Jim: So those would be signs.
Gary: Those would be signs, yeah. Impaired judgment - they’re making very, very poor decisions that you know they would never have made them before. And then they get to the place where they can’t do multitasking. For example, they can’t cook, they can’t go out and buy the food. And now you know there’s something wrong.
Jim: Yeah, reasonably easy tasks, but a series of tasks where they can’t link them together.
Gary: Yeah, so those are the - those are the early stages. That’s when you know you need to go and be diagnosed and find out what’s going on because something’s going on here.
Middle stage can last anywhere from two to 10 years. And there’re behavioral problems. Language difficulties - get to where they can’t remember words and can’t put words together. Memory loss, of course, continues. That’s a continual decline, memory loss. And then, also, delusions. For example, very common - someone’s been in my house, someone came in my house last night. Or someone that I saw on TV, they came to see me yesterday. So it’s clear delusions. And then sometimes there’s paranoid delusions where they feel like, somebody’s stealing my money.
I remember when I was visiting my mom and she said - I was getting ready to give her some money - and she said, somebody’s stealing my money. And I said, really? And she said yes, and I hid it. And I said, well, where did you hide it, mom? And she said, I can’t remember (laughter).
Jim: Whoa, that’s tough.
Gary: But, you know, the feeling that somebody’s, you know, stealing their
clothes, or in a spousal situation, they sometimes will accuse their spouse of having an affair - you’re seeing someone else; I know you are.
Jim: And they could be in their 70s, right?
Gary: Yeah, and they could be in their 70s, absolutely. So, you know, those kind of things are in the middle stage.
And then, the latter stage, which can last from one to three years, they’re at the place where they’ve lost their ability, now, to respond, can’t carry on conversations, can’t respond. Often, they can’t talk at all.
Swallowing becomes a difficulty, which, of course, is going to lead to - ultimately, to death - unable to smile or tend to their bodily functions. At this juncture, they’re really totally dependent on someone to take care of everything.
Jim: Yeah, and that - again, if you’re aware of those symptoms, we’re encouraging to pursue a physician and to talk with your physician about those things.
Lisa, you, again, have seen it firsthand with your own situation with your mom. Was that consistent with your experience thus far and where is your mom at in that process?
Lisa: Yeah, pretty much. Mom is diagnosed with vascular dementia. I would say she’s somewhere in the middle stage, though cognitively, she tests that pretty severe dementia.
And it started with word-finding problems and then moved to - really, the big thing for me was I was out visiting, she was doing her pills for the week - putting them in the little boxes. And she said, oh, I’m just so confused. I got messed up. I can’t do it. And I said, Mom, well, you do it. And I’ll check your work.
Lisa: And I did. And they were all off.
Lisa: And so, I was like, well, this is dangerous. You know...
Lisa: ...If she does that. And so, that was kind of the start of realizing - she also had similar - she thought what was going on in the Middle East was happening in her small, Minnesota town. And it was, you know, panic. What’s going on? What are we doing? What are we going to do about it? In fact, I’ll say something like, oh, you know, I can’t believe - I think - I think I hurt my shoulder, you know, or something. And she’ll say, oh, yeah, my shoulder is really bad (laughing) and immediately is turned around, back to her...
Lisa: ...And so very childlike, in that sense.
Jim: Gary, you mention in your book Keeping Love Alive as Memories Fade - you talk about relational distance. Describe what you meant by that and how that may apply in this particular situation.
Gary: Well, what is happening when one has dementia of any kind is there’s getting more and more and more emotional distance between the patient and the caregiver. The caregiver’s often the spouse or an adult child. But the distance is there because they’re not able to connect with you. And they get to the place where they can’t respond. And so your loving them, your caring, then becomes a one-way street. You’re loving them by what you’re doing. But they cannot reciprocate that love.
Jim: And it’s important - and I’m hearing this clearly, it’s almost like parenting, when you get frustrated at a child who doesn’t know any better. You have to have that patience as the adult parent...
Jim: ...To be able to walk that child through thought process, through participation, through engagement. That’s what you do when you parent, as well. It’s an interesting reversal - especially for you, Lisa - when you - all of a sudden, you were the child and now you’re the parent, doing that engagement - relational engagement - to make sure mom is taken care of and is mom participating. Have you found what Gary just mentioned to be true for you?
Lisa: Yeah, absolutely. In fact, I probably had a year’s long process of role reversal and grieving the loss of my mom as I knew her. So, for example, you know, me being the youngest, the baby in the family, being single, being, you know, my mom was it, especially after my dad passed away. And she and I were kind of buddies. And she was my confidant. She was my prayer partner. She was the one I called and was like, Mom, here’s what’s going on in my life. And she was interested. She prayed for me.
And now, she no longer has that interest or that connection or that ability to say - you know, she wants to but, you know, she’ll forget within the next two minutes. And so I’ve had to realize that that has been a loss in my life, to not have her in that role anymore and to realize that yes, it is absolutely, not only turned around, but become that one-way street, where it is - you know, it is her needs that she is preoccupied with and her feelings and where she is in life. And so that’s where I’ve had to be very intentional about going out and getting support and care and prayer elsewhere at this point.
John: Our guests are Lisa Anderson and Dr. Gary Chapman. This is Focus on the Family. And your host is Jim Daly. You can find resources and help if this is your battle or if you have a friend or family member who is struggling through these issues.
Dr. Chapman’s excellent book is Keeping Love Alive as Memories Fade. And then, as Jim mentioned earlier, we have a CD or download of this conversation. It’s the kind of thing you can share with someone. And you can find these resources and more at focusonthefamily.com/radio or when you call 800-A-FAMILY.
Jim: Lisa, in fact, you wrote a blog, which I read a couple of days ago, which was really moving. And you titled it “My Mom is Killing Me.”
Lisa: I did.
Jim: It was a very heartfelt blog. And we’ll post that at the addresses you just gave, John.
John: Yeah, great idea.
Jim: Describe that. And I love, again, your vulnerability, Lisa. That’s one of your great attributes - is you’re so willing to be open. And people connect in that way.
Jim: What were you getting at? Your mom was killing you?
Lisa: Yeah, well, and it really is a play on words because, one, it’s very - you know, I felt at the time, when I wrote it, it was very literal. And I feel this many days. I mean, it is - like I alluded to - going from being single and doing what I wanted, when I wanted, how I wanted - spending my money, going out to dinner with friends, going for a weekend away. And now it’s like, oh, yeah, that’s right. Mom’s here. Oh, wait, she’s still here. Oh, there she is. She’s right in front - you know, it’s... it’s rocked my world basically and...
Lisa: Overwhelming, yeah. And not even because - I mean sometimes it’s just outright hard. And there are hard things about it. Sometimes it’s just monotonous, you know? In an era where - you know, and I work with young adults, where we’re trying to find ourselves. And we’re trying to get the next greatest experience and that kind of thing. It has been a very active lesson to me in denial of self.
And I remind my audience, which is single, young adults in this blog post, that denying yourself, picking up your cross, caring for others, being sacrificial is not for married people. It’s not for parents. It’s not for people who are just, you know, super saints. It is for every single one of us who follow Jesus Christ. We are all called to give of ourselves in a way that ultimately will be giving more than we probably think we can. It’s a self-sacrificial love.
And so it is killing me in the sense that I am being called every day to die to myself. And that lesson is a great lesson learned.
Jim: You know, and Lisa - so well-stated and it has such broad application. We were talking about foster care, and how that is a killing of yourself.
Jim: So, we have to give, give, give. This is very similar in that way. Gary, you had a beautiful story about the power of love and the importance of people that are elderly that have dementia that they still feel that. I think the story was you going to visit your mom in a nursing home and how many people were reaching out to you.
Jim: Describe that setting for us.
Gary: Yeah, I was making the point - physical touch, as you know, is one of the love languages. And if you walk into a nursing home, which I did when my mom was there that last year, people are lined up in the hallway in their chairs. And when I walked by, they would reach their hand out and say, ooh, ooh, ooh. And when I would reach over and just hug them, they would just melt.
Gary: They were hungry for love. And, of course, in the book we use that Hebrew word Hassid, which is what Lisa was talking about - is that unconditional commitment to the person. And, yes, it’s hard. And, yes, it’s sacrificial. But it’s so rewarding because you know you’re doing what God has called you to do.
Jim: We mention love and you have tied The 5 Love Languages into your book, Keeping Love Alive as Memories Fade. Describe that connection with The 5 Love Languages. You mentioned touch. Go over the other four and how they apply in this environment.
Gary: Well, the person doesn’t keep the same primary love language through the whole journey as we do when we’re healthy. But we do - “The 5 Love Languages” gives you five ways to reach in and touch that person. Physical touch is one, as we mentioned. Words of affirmation is another. Acts of service is another. Quality time - giving them undivided attention. And gifts is the other. So out of those five, there are still ways to reach in and touch them emotionally.
Jim: What do you see is the most dominant when your elderly parent or family member is going through this diagnosis? What do you see them gravitate toward? I would think time.
Gary: It depends on the - it depends...
Jim: Oh, it really does?
Gary: You know, Jim, I wrote this book with a medical doctor, Dr. Ed Shaw, whose wife came down with Alzheimer’s disease at the age of 53. He was the head of the radiology oncology department at our local hospital. He became so interested in her and the disease he resigned his position, went back to the university and did a master’s in counseling, came back to the hospital and set up the memory counseling clinic.
And he was - he was using “The 5 Love Languages.” If he found the couple right after they’d been diagnosed, he would teach them the concept of the five love languages and learning each other’s love language so that they get connected emotionally as they headed into this long journey. And often they became closer emotionally than maybe they had been for several years. So now they’re connected as they enter the journey. And so as time goes on, of course, the primary love language is not the primary love language necessarily. But “The 5 Love Languages” give you ways to dip into that person emotionally.
Jim: And, Gary, I so appreciate that because we’ve had you on talking about that in a parenting context, in a marital context - and of course Focus on the Family is all that. And then to apply it in this setting is really amazing.
It shows you the craving of the heart that God has given us emotionally and what our needs are. You know, it does sound very close to a parenting situation where you have to bite your tongue, you have to kind of be the adult in the room and you - it’s so normal for us to get frustrated, both as a parent and then as a child of an elderly parent, who’s going through this, that those emotions rise up.
Speak to the person who maybe hasn’t done it well. They’ve been frustrated with mom or dad. And it’s causing them a lot of pain, as Lisa has described. How can they reorient themselves around a different attitude? Don’t let it irritate you so much. This is going to happen. This is the place that they’re at. Now is a time for compassion, even when they irritate you.
Gary: You know, and here’s the important thing, Jim, I think for the caregiver to realize is that the individual who has the disease, even in the middle and latter stages, can still feel loved. They can also still feel hurt. So, if you get aggravated with them - don’t ask me that question again. You’ve asked me 20 times already - they feel the hurt and the pain and the rejection.
You see, we’ve assumed that as the cognitive abilities diminish, so the emotional diminish. And that’s not true. The emotional part of the brain is still alive and they can feel both negative feelings, negative emotions and they can feel positive emotions. And that’s the heart of what we’re trying to say in this book, is that you can still stay connected with them.
Jim: And I think that is the takeaway. We’re going to come back next time and talk about that. But Lisa, you’re living at - your hand’s waving - I mean, you’re in that spot right now where you have to make those choices every day. Do I hurt her feelings or do I show compassion and love toward her?
Lisa: Yeah. And I never knew my mom’s love language before dementia. I never did. I mean, I could barely get her to do the Myers-Briggs personality test. She’s like this is ridiculous. So I never...
Jim: That is kind of a tough one. (Laughter)
Lisa: ...I never discovered that. But I found that, where she is right now, I try all the love languages on her. And I’ve found that in different circumstances, different situations, they work.
So, for example, my mom did not grow up giving or receiving a lot of physical affection when she was younger. We didn’t really receive that in our home, too, because we were Scandinavians. We didn’t do that.
But now giving her a hug and giving - it’s exactly one of those things. All of a sudden, it’s received. And it’s just been a neat thing to see that. The repentance every day - I will do - I will tell Mom, “Mom, I’m telling you exactly what to do. Just do it. This will be very easy. Just do it.” And I could see her getting agitated. And I have to turn around and say, “Mom, I am so sorry. I apologize. Will you forgive me for getting short with you?” So, I get the opportunity to do that and to affirm her with words when she does something well or when she’s trying, or when she’s moving in a - in a good direction.
Also, with gifts, too. It’s very easy for me to say, just as you were saying, Gary, well, mom’s not going to remember it’s her birthday or mom won’t remember it’s Mother’s Day. So really, what’s the big deal? But to write out a card and to get her a gift and make a big deal - she loves flowers, so I always get her a potted plant along with a gift. Or she and I planted flowers this year. And I made her part of that - just those little things. I pepper all of our interactions with whatever I can, knowing that something’s going to stick. And - but I don’t do it perfectly. And so there’s a lot of - it’s - again, it’s repentance every day.
Jim: Well, and I love that intentionality. That’s exactly what you’re saying, Gary.
Jim: And using The 5 Love Languages as the basis to interact with your aging parent and the parent or the family member with dementia. This is a great start to the discussion. I so appreciate your vulnerability, again, your honesty and what you have done, Gary, compiling this book with your colleagues, Keeping Love Alive as Memories Fade .
For our listeners, this may have just ripped open your heart because you haven’t dealt with this in a way that’s constructive. Or, if I can be bold enough, with Christ’s love toward that elderly person or that person with dementia. Even at 53, that breaks my heart, Gary, for somebody going through that at such a young age, really.
If you’re in that spot, call us. We have counselors here at Focus on the Family. We can provide additional help and ideas. Certainly, we can provide a copy of Gary’s book, Keeping Love Alive as Memories Fade, which is jam-packed with ideas to do this well, do this in a Christ-honoring way by giving your family member the respect, the love that they deserve, even as they fade. And if you’re in that spot, get a hold of us and we will provide this resource for you.
John: And we’re here to help your family in any way we can. Our number is 800, the letter A, and the word FAMILY. Or visit focusonthefamily.com/radio for more.
And if you’re able to make a generous donation to Focus on the Family today, we’ll gladly send you a complimentary copy of Dr. Chapman’s book. That’s our way of saying thank-you for your ongoing support of this ministry and putting this great resource in your hands.
Jim: Gary and Lisa, again, thanks for being with us today. Let’s come back next time and continue the discussion.
Lisa: Thanks, Jim.
John: And we do hope you’ll make plans to be with us then. Meanwhile, if you happen to know some young single adults who need encouragement in their faith, direct them to our Boundless ministry which Lisa heads up. And it’s a vibrant, interactive community that addresses singleness and marriage, and growing closer to Christ. You can learn more about Boundless - we’ll link over to it - at focusonthefamily.com/radio.
Coming up next time we’ll share more practical advice about caring for someone with dementia.
Lisa Anderson: One thing that’s been helpful for me is constantly reminding myself that this is a disease. So to not make my mom responsible for reactions, for bad attitude, for, you know, I’m going to sit there and I’m going to think I can reason with her. I cannot reason with her. And so constantly saying, “Lisa, remember, this is the dementia, this is the dementia.”
End of Excerpt
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Gary ChapmanView Bio
Dr. Gary Chapman is the senior associate pastor at Calvary Baptist Church in Winston-Salem, N.C. He's also an international public speaker and the best-selling author of numerous books including The Five Love Languages which has sold more than five million copies and has been translated into nearly 40 languages. Dr. Chapman holds several academic degrees including a Ph.D. in adult education from Southwestern Baptist Theological Seminary.
Lisa AndersonView Bio
Lisa Anderson is Focus on the Family's Director of Young Adults, and the manager of Boundless, Focus' ministry for helping 20- and 30-somethings grow up, own their faith, date with purpose and prepare for marriage and family. She hosts The Boundless Show, a national radio program and weekly podcast, where she leads discussions on timely issues and interviews authors, artists and other newsmakers. Lisa is the author of The Dating Manifesto: A Drama-Free Plan for Pursuing Marriage With Purpose. She grew up in San Jose, California, is a graduate of Trinity International University in Chicago, and worked in media relations for much of her career before joining Boundless.