More married couples looking for help have sought it out from Gary Chapman’s colossal bestseller [tempo-ecommerce src=”https://www.amazon.com/dp/080241270X/?tag=timecom-20″ title=”The 5 Love Languages” context=”body”] than any other modern book. More recently, the quietly spoken pastor and counselor from Winston Salem, North Carolina, turned his attention to Alzheimer’s. Currently, there are 6 million Americans with the disease, and according to a Dec. 7 study, that number is predicted to more than double to 15 million by 2060. Many of those are and will be cared for, at least part of that time, by their spouse.
TIME interviewed Chapman about the challenges and joys of loving a partner with Alzheimer’s and the book he co-authored with Debbie Barr and Dr. Edward Shaw, [tempo-ecommerce src=”https://www.amazon.com/dp/0802414508/?tag=timecom-20″ title=”Keeping Love Alive as Memories Fade” context=”body”].
TIME: What are the biggest issues facing those whose partners get Alzheimer’s or some kind of dementia?
Gary Chapman: I think the biggest thing is the grief that comes from watching your spouse decline in terms of mental abilities and facing the reality that the chances of it turning around aren’t there. It’s going downhill. One of my co-authors, Dr. Shaw, works with couples in early stages and helps them discover their love language. As the disease progresses, and the partner can’t respond at all, he has focus groups for the caregivers, which I sat in on. I was deeply impressed with their commitment to their spouse, in spite of the fact that the person is not able to love them back. This is just fascinating to me. But also to hear the sadness of stories in which the behavior of their spouse is totally out of character. That’s the most disturbing part of it.
How many people make it all the way to the end with their spouse?
I don’t know if there are figures. But in one of the focus groups there was a younger guy who didn’t know his wife was sick. Her behavior was so annoying that he actually left her, and then when she was diagnosed he came back, because he realized it wasn’t her, it was the disease. And so he came back and committed to walking with her through the journey.
What do you say to people who just aren’t up for that, who don’t think they could take that much on and feel they need to put their spouse in a facility?
I’m empathetic. You do feel trapped. It’s a huge decision, and it needs to be discussed with family members. I do think there comes a time when putting a person in facility is the best for them and you. But that doesn’t mean you have to walk away. When we made the commitment “for better or worse,” none of us anticipated this. It’s really a matter of character: Are you going to follow through with the commitment you made?
There’s a story in your book about a woman who asks her husband to drive her to a friend’s house and when she gets there she asks her friend to tell her who the man in the car is. A spouse might say: If they don’t even know who I am, why am I here?
Many times, especially after they put them in facility, people will say, Why should I go visit? They don’t even know who I am. But there are two reasons: First, they still have the ability to feel love emotionally. That’s the thesis of my whole book. And they need love, it’s the deepest emotional need humans have: to feel loved. So you are doing them a great service when you spend time with them and seek to communicate to them and try to touch them in an emotional way. But it’s good for you too, because you know you are doing the right thing. And so at the end of all of it, you’re going to feel you did everything you could do. There’s something about that that gives you a deep sense of satisfaction I think.
What are the first steps a couple should take after getting a diagnosis?
Reach out to a counselor in the early stages when [your partner] still has a good bit of cognitive ability, and let someone outside of you two help assess the situation. Look at where you are, talk about what you can do now that might help you deal with what’s coming down the road. What’s important is to keep this emotional tie between the two of you. Sometimes in those early stages, the couple can have a closer emotional connection than they had even before the disease was diagnosed. But obviously as things go on, one person is not going to be able to reciprocate the love. Have someone outside the two of you, a person who becomes a friend and then, when the patient gets to a place where they can no longer profit from that sort of dialogue, can walk with you through the rest of the journey. To me, that’s the ideal situation.
Learn everything you can about the disease and the common path it will follow, so that when something happens you recognize it. Mistaken identity, for example: If they mistake you as a spouse for their brother, you already know that’s one of the things that happens. Or if they start repeating themselves six times in 30 minutes, you recognize it. When you know it’s the disease, you’re far more likely to be sympathetic.
There have been some high-profile cases, like Sandra Day O’Connor’s, when the afflicted spouse has fallen in love with someone else and forgotten they were married. What do you advise?
That usually happens in a facility and in the early stages, before people lose the ability to communicate. The facility managers play along with it. They hold hands and go to dinner together. For the spouse, I advise that you regularly — as often as possible — spend time with them and divert their attention. If they say they’re going to dinner with their boyfriend, just say: “I think I’ll just go with you tonight.”
How do you deal with conflict with a spouse who really isn’t rational?
What it does require if it’s going to be positive, is that you listen to what they say. It may be irrational, but acknowledge it. “I hear you saying you think I’m seeing someone else.” Acknowledge the complaint, then affirm the truth. “Honey look at this ring, I’ve had this ring for 50 years. You gave it to me. There’s no way I’m leaving you after 50 years.” Then redirect the person’s attention. Move to something else. “Let’s go sit on the couch and watch a movie together.”
What about situations where unwell spouses get fearful and angry and lash out?
If they get angry and start throwing things or pushing and hitting you, obviously you have to take some action. Sometimes depending on the stage, and whatever is stirring their emotions at the time, you redirect it: “Honey, let me go get you an ice cream cone.” If not, you need to consult with a doctor and find out if medication might help.
What else should we know?
The caregiver has a need for love too. When the spouse reaches a stage when they can receive love but cannot give love, the caregiver needs help. The caregiver needs people who will speak their love language so they have a deep inner sense of, I’m not in this by myself. People really do care about me. I don’t think anybody can carry this load by themselves through the whole thing.
What can healthy married people learn from the marriages of people in which one partner has Alzheimer’s?
One thing that deeply impressed me was just observing the commitment people have for each other. If they can be committed in that situation, surely we can be committed in our lives when things are going much easier. And it’s a reminder to all of us that life is fragile and we never know what a day is going to bring. If we’re having conflicts, let’s get help and learn how to manage those conflicts, and if we have a positive relationship then let’s enjoy it. I’m reminded of when Charlie Brown says: “One of these days we’re all going to die.” And Snoopy says: “True. But on all the other days we don’t.”
This interview has been condensed and edited.
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