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 2 of 2)
Miss Lisa Anderson: 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 - you know, it’s - it’s been - it’s rocked my world basically and...
Jim Daly: Overwhelming?
Lisa: Overwhelming, yeah. And not even because - I mean sometimes it’s just outright hard. And there are hard things about it.
End of Teaser
John Fuller: Honest reflections about what it means to care for someone with dementia 24/7. That’s a challenging world for anybody to face, and if you’re in that situation you need a lot of support. You’ll hear more about that today on Focus on the Family. Your host is Focus president and author, Jim Daly. I’m John Fuller.
Jim: John, we had a really fascinating conversation last time about the huge impact that dementia, in all of its forms, is having on the culture today, on all of us - family members, maybe you, have recently been diagnosed in that way. If you missed the program last time, get a copy of it. We started to discuss the stages of dementia, particularly Alzheimer’s and that impact. And I thought it was very helpful for people to hear because so many of us, especially in their 50s and 60s, begin to think, OK, my memory’s not as strong as it used to be, am I there? And it’s a good way to get an idea of the symptoms and what you’re - and what you may be dealing with.
The most important thing that we’re talking about - last time we’re going to continue this time - is the caregiver and how you approach this time in your life. You might be the adult child of a parent who’s going through this, or some other family member. What are you going to be facing as you move into this? And you, as the one perhaps that’s diagnosed, what will you be facing? And we have two great guests today to talk about it.
John: And they include Dr. Gary Chapman. He is an author, a radio host, a pastor and a counselor. He’s been one of our most popular guests here at Focus on the Family.
And he’s written a book called Keeping Love Alive As Memories Fade: The Five Love Languages And The Alzheimer’s Journey. And also joining us is our coworker Lisa Anderson. She heads up our Boundless ministry - a podcast, a website, a radio program designed to encourage biblical thinking amongst singles. Lisa is well-known for her vulnerability. And we’ve posted a blog entry that she did about her particular struggles as she takes care of a mom with dementia. We’ve got that at the website. That’s focusonthefamily.com/radio.
Jim: Gary and Lisa, welcome back to Focus on the Family.
Gary Chapman: Thank you.
Lisa: Thanks, Jim.
Jim: It’s so good to have you - and in part, because you’re giving solid solutions to people who may be struggling. We left off last time, Gary, you were talking about The Five Love Languages. I mean, what a brilliant stroke that the Lord gave you. And I think you’d say it that way - that that illumination for you, to hit the five love languages, was something directly from the Lord.
Gary: You know, Jim, it’s been very, very encouraging to see how God has used that book through the years. That original book has been out 25 years, this year. And every year, it sells more than the year before...
Gary: ...Which says it’s touching a real need. And that is teaching people how to connect emotionally - how to communicate love emotionally.
Jim: And, again, the resourcefulness of that thinking that you’ve put into the original five love languages, you’ve applied it now with parenting - certainly in marriage, that was the first application - but now even in the situation of aging parents and how that caregiver can apply those love languages. For those that missed the discussion last time, just quickly connect those dots for us - how the five love languages, when you are that caregiver, can apply to a older parent.
Gary: Well, you know, the biggest point we made was that, even in the latter or middle stages of dementia, the patient can still feel loved, or they can feel rejected. The emotional center of the brain is still there. And therefore, the love languages gives you five ways to try to reach in and touch them emotionally. It’s not the idea that the love language - the same love language stays with them through the whole journey. It may change - it may change even daily. But when you touch them, you will typically get a response. Even near the end of the journey, you can get a response.
Jim: Last time, you talked about the stages of dementia. And again, if you missed that, get in contact with us. John will give those details. There’s also stages, I would think, of caregiving. In fact, you call it care partnering in your book. Talk about those stages. When you’re at the early stage, it’s probably not too demanding, and then you move through more and more demanding situations like Lisa’s describing. What is that journey like, as the care partner?
Gary: Yeah, that’s why we used the word care partner in the early stages because one of the patients said - when their spouse was saying, I’m her caregiver, and she said, I don’t need a caregiver. So we say care partner or care - later on, you definitely become a caregiver. OK?
But I think, Jim, one of the things is, particularly in the early stages, sometimes when it hasn’t been diagnosed and the person’s behavior is changing, we don’t see it as a disease because we don’t know they have a disease. In fact, in the book we give the story of a man whose wife’s personality just radically changed. And she started blaming him and lashing out at him, and he actually left her. Later, she was diagnosed - about six months later she was diagnosed. And when he found out that she had Alzheimer’s disease, he came back and said, honey, I’m sorry. I thought it was you. I didn’t know it was the disease. And he came back and cared with her, and cared for her for the - years. So if your spouse’s personality radically changes, I would urge you to go have a diagnosis. Go find out if this is a disease. It may well be a disease and not the person that’s responding to you in that manner.
Jim: That’s so true.
Lisa: I would think, too, just in light of that - 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. And to ask myself every single time, Lisa, if you were 88 years old with dementia, how would you want to be treated in this situation? And that’s biblical. How would we want to be treated? And how would Christ treat us? And how would Christ treat her in that situation?
And it allows me to love her lavishly without keeping a tally sheet, without thinking like, well, I better not do that because that’s going to make her think that. No. There’s never too much love that you can give in this situation.
Jim: And Gary, you have been so good at repeating the fact that they can feel this, they can feel love, they can feel rejection. You’ve said that last time, you said that earlier. How does the caregiver - I would think your tank gets empty.
Jim: So that frustration may be inevitable, unless you’re truly angelic, you know, and you’ve got a great grip on your emotions. But for most normal people, you’re going to reach a breaking point. How does a person in the caregiving role fill their tank and stay ready to give?
Gary: You know, Jim, I think that’s one of the key issues for caregivers. And we had focus groups when we were writing this book in which we would sit around the table with eight or 10 people who are caregivers, and their spouse was in the latter stages and thus incapable of reciprocating love. It was totally a one-way street at this point. And one of the points they made was - I could not make this without people helping me. People at my church, family members coming in and giving me some relief, and God. I remember the lady who said, I would not have made this without God. You know?
Jim: For the person that may not have experienced that, what did she mean by that and what did the others mean by the help? Let’s get practical, and Lisa, jump in.
Gary: And I think this is where, again, the love language concept helps.
Gary: We all know that our deepest emotional need on the human level is the need to feel loved by the significant people in our lives. And if we feel loved, life is beautiful. And even with dementia, if I feel loved in that moment, it’s a beautiful moment. The caregiver, however, is not receiving love from their spouse - if it is a spouse, you know...
Jim: ...Or parent.
Gary: ...If it’s a daughter or son, they’re not receiving reciprocation in the latter stages.
Jim: Right, it’s a one-way street.
Gary: That’s right. That’s why it’s important for the caregiver to let their circle of friends and let their family members and let their church people know this is my love language. This is what makes me feel loved. And if you want to help me, here’s a way you can help me. Now, it’s not only one love language to be sure. You know, acts of service would be awful helpful to one even if that’s not their primary language, giving them a break, coming in and sitting with my mom or my dad or my spouse for two hours while I go do something else. You know, just those kind of things. But the caregiver has to take the responsibility to share that need with others.
Gary: They - many times, they want to help. They don’t know how to help. And we have to give them that information.
Jim: And you can be really at your wit’s end in this regard. I think we refer to it as the sandwich generation, you know, those 40, 50-somethings where they’re still finishing off probably their parenting. They may have 13 to 18-year-old children still in the home. And then your parent is diagnosed with dementia. And you have to figure out how to manage all that, especially if you’re living close together. And you feel that responsibility to be the care partner or the caregiver. And yet, you’ve got a lot of demands at home.
Speak to that individual and how they can possibly do it all because they’re feeling overwhelmed, Gary, you know it.
Gary: Yeah, yeah.
Jim: You’ve counseled many, many couples in that sandwich position where they just - they’re saying every night - they’re praying and pleading with God, give me more capacity because I can’t get it done. And they’re heaping on guilt to themselves because daughter’s not able to take care of mom, but she’s also not able to take care of the household and the teens the way she wants to. What does she do?
Gary: Well, the reality is we can’t do it all. No one person can do all that’s needed for a patient in the latter stages of dementia of any kind. And I think that’s why I would say to family members who are listening to us today, please don’t let your mom or your dad carry the whole load, or please don’t let your brother or sister carry the whole load. Do what you can.
Maybe you’re a thousand miles away and all you can do perhaps is to say, I’m going to send a hundred dollars a month to pay for somebody to come in and sit with my mom while you take a break. You know, maybe you can’t be there physically, but there are always things that you can do. And this is a family thing.
Now, if you’re an only child, this is where the church comes in. I mean, the church is your family. And reach out and let them know your needs. Most churches or people in churches really want to help. They’re willing to help. They’re just not aware of that. But you can’t carry the whole load by yourself. It takes a family working together.
John: Well, Gary Chapman and Lisa Anderson are our guests today on Focus on the Family with Jim Daly. I’m John Fuller. And as we talk about this, we have some great resources for you. Let me encourage you to stop by focusonthefamily.com/radio or call us - 1-800, the letter A, and the word FAMILY.
I’d point you to Lisa’s blog post. We mentioned that yesterday and again today. Also, Dr. Chapman’s book, Keeping Love Alive As Memories Fade. We have additional helps and a counseling staff that will be happy to talk with you if you’re at a point of not knowing just where to turn beyond these resources I’ve mentioned.
And, Lisa, I’m thinking of you as Dr. Chapman is explaining some of these concepts. I’m wondering, one, if there was a particular love language that you enjoyed getting from your mom that she just couldn’t give anymore, what that was? And then two, how have you been able to find the capacity to fill your tank?
John: Because you’re doing this not so solo but almost.
Lisa: Yeah, almost. I - as I’ve thought about it, I’m wondering if my mom’s love language was and is quality time because I remember growing up what she was great at doing was crafting great experiences. She was the one that was always planning the fun vacation, making sure that on weekends we did something. She was always at my school event. She was the one who sat down with me and we both loved to read. And we both loved some of the same hobbies. And so I remember that being the case.
And so I’m trying to pull her back into some of those things. You know, we’ll read a mystery together. Or we’ll, you know, she likes to still read aloud even though comprehension maybe isn’t the greatest. But that’s been fun to be able to do that with her.
But I have to realize, again, that I can’t - I don’t even have capacity to do that if I’m not taking care of myself. And one of the things - I mean, I don’t want to sound like weirdly, you know, uber spiritual here or whatever, but I have got to be in the Word of God. Like, I have just realized that. I mean, I - in fact, in my blog post, I talk about how when I pray about the situation, it is like sometimes I am just pleading the blood of Jesus. Sometimes, I mean, I’m - I’ve become somewhat Pentecostal in my prayer life, which is probably a good thing. I am...
John: As a Scandinavian, that’s quite an achievement.
Lisa: I know. So my social life - OK, I’m officially now the most boring person in the world because I get mom in bed at night. I work all day, so I’m on in the evenings. And I’m on every weekend. And I get mom in bed. And then I go to bed because I get up in the morning before she’s up to do my time in the Word and to just go to the Lord because I know the day ahead. And it’s not just mom. It’s my work day. It’s all the other responsibilities I have. I know that I need to do that.
I also make time at work, at lunch, to get in exercise. And so I go to the gym, or I go for a run here around the work property or do whatever because I know I won’t necessarily have that at home. Sometimes my friend and I - John, you alluded to this - I have a friend who helps me with caregiving during the day. She’s mom’s caregiver. And she’s now my roommate. We’re kind of in this weird experiment of caregiving together. But she and I will bring mom along and we’ll go play tennis. Or we’ll make some kind of activity out of it so we can get that in as well. And that’s worked out.
But I would say just to answer the question about - yeah, the people that have the heart there but they don’t exactly know what to do. I think the biggest thing for me is - for people to say - offer some kind of proactive intention or proactive help. It’s very easy. And I get in this trap too to say, hey, well, let me know if you ever need anything. And that’s so vague and so - and I’m like, do they really mean it? Because I have about 10 things I just thought of, but I don’t want to ask.
But for someone - when I’ve had someone from church come up to me and say, I can give you four hours in an afternoon one time a month. You pick the day. Let me know. We’ll work it out with our schedule. I know I can count on that person for that. They’ve given me something specific. I don’t feel like I’m coming back and begging for something. That is amazing.
Also, caregiving is a huge expense. I mean, it is, you know, mom has social security and that’s kind of it. And the time involved, I mean, for someone to give a restaurant gift card or to say, can I help you out with that? Can I make a meal for you tonight? You know, because you’re coming home from work and doing this.
Practical helps are super great as well because when I sit down on the weekend and I’m like OK, now I’ve got to pay bills. I’ve got to pick up mom’s prescriptions. I’ve got to - I mean, it can be crazy, crazy expensive. And so I think that, you know, respite and then just help with practical needs is so huge because it is a 24/7 job. It is, like I said, I’m working full-time. And then I come home and I have mom. And I - my poor friend during the day, she’s got mom all day. And that’s a one way, you know, no conversation for her or nothing. So to have friends come over and join us for a meal or to say, you know, let me give you a Saturday, we’ll take your mom. You know, let’s go. We’ll find something to do with her. It is so, so huge.
Jim: Just to have that break. Gary, I wanted for the audience sake to recap some of the scope of dementia. I think I read in your book 1 in 3 over 85 are diagnosed with dementia of some sort. Is that accurate?
Gary: That is true, 1 out of 3 adults over 85. Over 65, it’s 1 out of 9.
Jim: One of nine over 65? That’s shocking.
Gary: And every 66 seconds, another person is being diagnosed with Alzheimer’s disease.
Jim: So this is really touching practically every family when you look at the intersection of this disease particularly.
Gary: Jim, when I ask a group, you know, how many of you know someone who has the disease? Virtually every hand in the audience goes up. This is huge in our culture. And it’s going to get worse in the next few years.
Jim: And it’s going to get worse.
Jim: You’ve mentioned this already - we’ve got just a few minutes remaining - the concentration on today. I think it’s a good place to elaborate, talk about stories where that has been successful. I think it’s important for people to be encouraged, not discouraged.
This is part of life. And we’re all going to go through something. Something’s going to get each one of us. That’s a reality. And for these 1 in 9 over 65, it’s dementia. And there’s no cure at this point. It’s a descending event, meaning you’re not bouncing back from it. And yet, at the same time, as you’ve said over and over again, they have a heart. They understand generally what’s going on. They feel love. They feel scorn. Let’s concentrate on celebrating the day.
Gary: This is one of the things we’re really trying to do in this book, Jim, is to communicate to the caregiver that you do play a significant role - not just in caring for the physical, but caring for the emotional.
I’ll just give you a couple of examples. In the latter stages of Dr. Shaw’s wife’s - as matter of fact, she died one month before this book was published. It was a nine-year journey for her starting at the age of 53. And he said, you know, gifts - when she was healthy - gifts was her number five. But near the end, when I would give her an ice cream cone, she couldn’t talk at all. But she would say (groaning). He said, I could live on that for three weeks.
Gary: ...Knowing I had touched her deeply. My wife’s brother was a university professor - came down with the disease. He was in the latter stages. He was at the point where he would simply sit and look straight ahead. If you sat to his right, he wouldn’t look at you. He only looked straight ahead. He couldn’t talk. He had no response.
My wife was up to visit him three weeks before he died. And she sat in front of him, and she said I’m going to try singing some songs that he might have known. So she’s sang “You Are My Sunshine.” No response. She sang another song. No response. Then she’s sang “Jesus Loves Me, This I Know. For The Bible Tells Me So.” He reached his hand out, and put his hand on her hand and tears came to his eyes. And she knew she had touched him.
Gary: And that was our last memory. A wonderful memory.
Jim: You know, Gary, in some ways as you describe that, it’s almost like a person who’s slipping into a coma. And, you know, in that coma state they - people have been recorded. They can hear. They just can’t respond. They’re trapped inside their thoughts. I wonder if, to a degree, it’s somewhat like that. There’s something connecting there, but they just can’t respond.
Lisa, you mentioned the word earlier. And particularly, I Timothy 5 has challenged you. Tell us what I Timothy 5 verse you’re talking about, and how has it challenged you?
Lisa: Yeah, it’s really several verses peppered throughout the entire chapter, beginning in verse three, where it says, honor widows who are truly widows. But if a widow has children or grandchildren let them first learn to show godliness to their own household, and to make some return to their parents. For this is pleasing in the sight of God.
And then it later on says, if anyone does not provide for his relatives - and especially for members of his household - he has denied the faith, and is worse than an unbeliever. And just - that was so convicting to me to realize that, you know, OK. I could easily cop out. I could take the easy road. I could figure out, you know - but I was like, no. I don’t want to do that. I don’t know exactly what this looks like and the practical implications, but as long as I am able - and I realize that at some point, I may not be able to physically have mom in my home. But while I am able to, she is healthy, she is mobile. You know, again, she needs constant supervision and care. But while I’m able, I want to have a part in doing that.
And for her, you know, I mean, finances were an issue. She had sold her home, and cannibalized all that money on assisted living. Money was running out. And I was, like, what are we going to do about this. And so, I wanted to take her in. And it’s been huge for me to realize that, yeah. You know, this is biblical. And this is OK. And God is going to care for me in the midst of this.
And I get really choked up when I think of this because you, know, it’s very easy for me to think of myself as, like - knowing I’m single and saying, OK. I’m doing this for mom. Who’s going to do this for me some day? And the feeling of loneliness and the feeling of abandonment and being like, oh my goodness - Is this going to be my future? Or where - who’s going to be there for me?
And there’s a elderly woman. She’s in her 90’s now in my mom’s church back in Minnesota in the same situation - single all her life. In fact, she lived in the same farm house her entire life. And as her parents aged, got sick and died - and as several siblings aged, got sick and died, they came back to the farmhouse. And she cared for all of them through medical issues, through dementia, Alzheimer’s, whatever their issues were - cared for them until death and now she is in that position. She is frail. And this young couple in her church has built on an addition in their home and taken her in, and felt the calling to care for her.
And I just feel like that’s such a - so much God saying, I’ve got this. And I’m taking care of you. And I’m honoring what you did for years and years for your family in not knowing what your future would hold. And that’s just been such an encouragement to me to know that, ultimately, God is my keeper. And he’s my caregiver. And he will - we don’t know what our futures hold. And everyone, at some point, is going to lose a spouse. And they’re going to be in that situation. And so, you know, God has to be our portion, and he has to be our deliverer. And so, that’s been really huge for me to just keep in mind, and be encouraged by.
Jim: Wow. That is so powerful, Lisa, in what you said. It’s the love of Christ. And when we show it, it works. And when we don’t, we fail. We struggle as human beings.
Gary and Lisa, this has been such a good discussion. Somehow, we got to get through the end of it here but...(LAUGHTER) this shows the power of it. The power of that moment.
And, Gary, we are so grateful to you and those that worked on the book with you - Keeping Love Alive As Memories Fade. It’s touching so many of us. Thank you for this great, great resource so that people can do this as best they can in Christ - and to love their moms and dads, and their siblings and the others. Lisa, you are doing a fabulous job. And I know your mom. She’s a sweetheart. She comes to our chapel.
Lisa: You’re her favorite. She loves Jim.
Jim: I always try to give her a hug. I mean, man, what a wonderful lady.
Lisa: I think she wants to come live with you, Jim. So...(LAUGHTER)
Jim: Well, maybe we need to arrange that.
Lisa: Just six months out of the year. (LAUGHTER)
Jim: She can come live with foster kids and everybody else in the house.
Lisa: We’ll make it up.
Jim: That is wonderful. But thank you so much. Gary, I do have one question I want to ask you when John is done.
We are here for you. I think that’s the best thing for us to say. If you are struggling, man, we have people who can help you with - the counseling team. We have a bunch of resources to point in your direction. Most of all, Gary’s new book, , Keeping Love Alive As Memories Fade - what a wonderful resource this will be for, I hope, hundreds of thousands of people.
And you can get a copy of that here at Focus on the Family. And we will put that in your hands for a gift of any amount just - if you can help us, we want to help you.
John: Donate generously and get a copy of Keeping Love Alive As Memories Fade when you call 800-A-FAMILY or stop by focusonthefamily.com/radio. 1-800-232-6459.
Jim: Gary, that last question is for the folks, for themselves or their family members. What are some of the first things they need to think about when they hear the words?
Gary: Well, I think the first thing, Jim, is to realize that this will be a long journey. And it will not get better day by day. But with God’s help, you have the ability whether you’re the patient or whether you’re the caregiver. You will have the ability to walk this journey because it’s the journey God has laid out for you. And God will be there at every moment. When you need him, he will be there.
Jim: And we see you’ve illustrated that. Lean into him. And Gary, you have too. Thanks for being with us.
Lisa: Thank you so much.
John: And what a conversation we’ve enjoyed with Lisa and Dr. Chapman. So many great insights and stories. And I hope you’ve been encouraged by what they’ve shared.
Now coming up next time, a powerful testimony from Pastor Dimas Salaberrios about how he became a drug dealer at age 11.
Pastor Dimas Salaberrios: This guy’s from my neighborhood, he had this beautiful Cadillac and he was only like 18. And I remember my friends said, “Yeah, man, he’s a crack dealer.” And then it went into my head, - Crack! That’s the way I could get a car! (Laughter)
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.