How To Talk To Parents About Assisted Living

NEAL CONAN, host:

This is TALK OF THE NATION. Im Neal Conan in Washington.

More and more people across the country face one of the most difficult conversations of their lives: the talk with an aging parent about elder care, assisted living, maybe, or a nursing home.

Parents may disagree that now's the time, or just may not want to go. Some may no longer understand the issue. Other family members can have different opinions, too, and obviously, the emotional stakes are high all around.

If this is your story, if you have a parent who's increasingly fragile or in deteriorating health, if you've had this talk, if you're thinking about it, call us: 800-989-8255. Email us: talk@npr.org. You can also join the conversation at our Web site. Thats at npr.org. Click on TALK OF THE NATION.

Later in the program, training and working with a search-and-rescue dog. But first, the talk. Amy Dickinson joins us here in Studio 3A today. She writes the syndicated "Ask Amy" column for the Chicago Tribune. Amy, it's great to see you.

Ms. AMY DICKINSON (Syndicated Columnist, Chicago Tribune; Author, "The Mighty Queens Of Freeville"): Hi, Neal.

CONAN: And I know your family recently had this conversation.

Ms. DICKINSON: We - I am having this conversation. I have been having this conversation for over two years, and my mother recently moved out of her home that she never was going to leave, and what a process for all of us.

My sisters and I have really been through, I think, probably a very typical process. You know, we had a plan. Here was our plan: No one in our family was ever going to get old. No one was going to get frail.

CONAN: That's funny. That's my plan, too.

Ms. DICKINSON: Yeah, that was our plan. That was the extent of our plan. And we never discussed this, ever. As a family, we just didn't go there. And you know, my mom put it really well. She says: You get older, and she - her health has been very poor for many years, but she said: You know what? You break a hip, it's curtains.

(Soundbite of laughter)

Ms. DICKINSON: She says, we all know that. All the old people, we know this. So, you know, she was very - she was very careful. She did something a lot of older people do. She masked - she got it together. You know, if she knew someone was coming over, she could get it together. And so one of the things that happened in my life is, I decided to move back to my hometown in order to be with her more frequently and more consistently.

And I started spending time with her every day. And that's when I saw -you know, you look in the fridge, and you see what your parent is eating or not eating. You see that your parent is dropping things on the floor. They're not able to keep things clean.

So over the last couple of years, we started getting more and more and more in-home help. And one of the things we realized was, it really does take a village.

CONAN: And your sisters, also - you have a lot of family in that area.

Ms. DICKINSON: A lot of family and neighbors and professional caregivers. And what we - we finally got so that there was so much care required, that it really takes six to eight people to keep someone in their home with 24-hour care.

CONAN: And a lot of people just don't have that luxury. Nevertheless, how do you start this conversation? Do you start it with her? Do you start it with your sisters?

Ms. DICKINSON: Here's what happened. With us - I think this is very typical - you start crying in the snow, in the parking lot of the hospital because your frail, elderly family member is falling or, you know, ill or - so these conversations usually start among, you know, younger family members when everyone is under duress, and it's an emergency and everybody flies into action. And then nothing really happens because no one can broach it with the older - your parent recovers enough to get back home. They're like: That'll never happen again. I'm good.

My mom was so great. She was like: I'm good. But we saw that that was not the case, and so my sisters and I - you know, one aspect of this is, I know it tears some families apart. It actually brought us very close.

We started to talk about things we had never talked about, and we became intimate in a way that we never had been. And we - part of the intimacy was the realization that we had to face this as adults and as daughters, and that we had to do the really hard stuff.

And we started talking to my mother about this about 18 months ago, and - remember when your kids were young, and I remember thinking, oh, the sex talk. It's just the one talk. Well, it's not. It's - this took a really long time. Our mother was very resistant, and we had to keep talking to her about it, opening up as a conversation, not pressuring her - because that's another thing. It's like you can't force - it is very, very challenging to force someone to do this. And you don't want to force someone.

CONAN: Well, legally, you can't.

Ms. DICKINSON: Legally, you can't, and practically, you can't. And so what you need to do is enlist this person as a team member, so to speak. And we did something that, like, we had never done in our lives. We actually had a family meeting.

CONAN: Ooh.

Ms. DICKINSON: I know. It was just like those TV families.

CONAN: And it's easy to see, you know, see how that could - well, how could you be so pushy? You were always the pushy one.

Ms. DICKINSON: Right. But here's what we did that was probably a little smarter. And I'm an advice columnist, you know, so I've done all the research. So I knew it in my head. I just didn't know it in my life.

My sisters and I, we rehearsed it. We rehearsed. We talked about it. Oh, she's going to say this. We're going to say that. And it's - sort of because we all know our roles, you know, it sort of went pretty much as planned. And I have to say, the thing I did that I think was the best was I actually said: I know you're sad. Like, this is so sad.

And just to acknowledge that, instead of being all strong and in charge, I was like, I'm with you. It's so hard, and it's so sad. And I think that just gave us all the freedom to just say, let's just do this together, see if we can do it together.

CONAN: There is the specter of mortality there...

Ms. DICKINSON: It's terrible.

CONAN: ...the idea that - it's got to be, in your minds, an anticipation -maybe in her mind, too. I'm being sent away to die.

Ms. DICKINSON: And there's this tremendous sense of loss because, you know, you're losing your - you know, I come from a very small town, and no one moves. And I said this to my mom. You know what I figured out? She had never been away to college. She'd never lived in a dorm.

I've lived in dorms. I've lived in group houses. Like, she had never lived in that kind of group community, and once I figured that out, I realized that that was a huge thing for her to even contemplate. So we sort of - I acknowledged that, and we sort of talked about that. Like, what would that be like?

I also - you know, she very reluctantly came to a few places, looked around. We really did our best to enlist her in the process. And then there came a point when it was obvious she did not want to be in the process, and that's when I said: OK, I'll do it. I'll do it myself.

You know, like, I then had to really take responsibility because she needed me to do that. And I did.

CONAN: Joining us now is Carol Bradley Bursack, editor-in-chief of eldercarelink.com, author of "Minding Our Elders: Caregivers Share Their Personal Stories." She's with us from a studio in Fargo, North Dakota. And thank you very much for being with us today on this program.

Ms. CAROL BRADLEY BURSACK (Editor-in-chief, eldercarelink.com; Author, "Minding Our Elders: Caregivers Share Their Personal Stories"): Thanks for having me, Neal.

CONAN: And I'm sure as you've been listening to what Amy Dickinson has been having to say, this is not just her story, of course. It's many people's story.

Mr. BURSACK: It is many people's stories. Amy is much more fortunate than many. She has siblings that did come together, and it brought her closer. As she mentioned, it tears many families apart. They can't agree on where Mom should go or if Mom should go to a nursing home. So Amy was fortunate there. But the family meeting helps, if you can be civil to one another.

I was one of the fortunate ones, too. I spent 20 years, there were seven elders, and over that span of 20 years, I cared for many different people under many different circumstances. And all six of them were family members, and my family was very supportive.

I was the in-town caregiver, but I had a lot of help from my sister. And my brother was quite far away, but they were supportive. And that helps. As Amy mentioned, sometimes you just have to grab the bull by the horns and do it. And I do believe in bringing the elder into all decisions as you can, because they have so many losses through age.

I compare it often to a rose that loses petals and oftentimes, people forget that they're dealing with a real human being here, with a legacy deserving of respect. At the same time, we need their safety. We need their safety.

Ms. DICKINSON: Yeah, exactly. Safety was a huge issue in our case, the -tremendous issue in this very old farmhouse that could not be modified. We made lots of modifications and eventually, there was no more we could do to make it more safe.

Mr. BURSACK: It happens often.

Ms. DICKINSON: But you know what's funny? One of the aspects of this was that I realized there was a genuine fear of abandonment. I mean, imagine. And one of the things I tried to demonstrate, and continue to, is that I'm not leaving you. You know?

Mr. BURSACK: Exactly. You need to let them know you are there, and you're with them all the way. I think it's important to bring personal belongings along, photos, other things that let people know who they are as a human being.

Ms. DICKINSON: We found a place that took...

Mr. BURSACK: They need to know you're an advocate, too.

Ms. DICKINSON: Right. And we found a place that would take my mother's cat. Can you imagine?

CONAN: Oh, wow.

Mr. BURSACK: What - wonderful.

Ms. DICKINSON: What a difference and what a thoughtful, thoughtful approach by this wonderful place where she is. And that was a huge thing. But it's like you say, Carol. You know, I always think like, when you love someone, you have to love them like, all the way.

Mr. BURSACK: That's right.

Ms. DICKINSON: And this is the tough stuff. This is the all-the-way part.

Mr. BURSACK: It is. And when you're dealing with dementia, which people with Alzheimer's - or in the case of our family, my dad had brain surgery that was to correct the effects of a World War II brain injury, and unfortunately, it sent him into severe dementia overnight. And he lived that way for 10 years and it was, of course, a horrible shock to the family.

And we had to learn how to cope with that on our own. And yet, you know, it's Dad, but it's not Dad, but this is still the same human being, with the same legacy, with the same past. And you just swing with it. As you say, it's heartbreaking and it's hard, and we're watching them face their mortality. We're facing their mortality, and we're facing our own, because we know we're next up.

Ms. DICKINSON: Exactly.

CONAN: We're talking with Carol Bradley Bursack, editor-in-chief at eldercarelink.com, and of course, Amy Dickinson, the writer of the syndicated "Ask Amy" column for the Chicago Tribune. When we come back, we want to hear your stories of the conversation: adult children talking with their parents about the inevitability.

Stay with us. I'm Neal Conan. It's the TALK OF THE NATION from NPR News.

(Soundbite of music)

CONAN: This is TALK OF THE NATION. Im Neal Conan, in Washington.

If you look at it demographically, we are living longer than ever. For more than a century, in places with the highest life expectancies, the average lifespan has grown by more than two years every decade, about six hours a day - that's according to a demographer at Duke.

And as we live longer, more of us will face difficult conversations with aging parents about elder care. When is it time to think about a nursing home or an assisted-living center?

If you've had this talk, if you're thinking about it, tell us your story: 800-989-8255. Email us: talk@npr.org. You can also join the conversation at our Web site: npr.org. Click on TALK OF THE NATION.

With us are Amy Dickinson, who writes the syndicated "Ask Amy" column for the Chicago Tribune and wrote the book "The Mighty Queens Of Freeville: A Story of Surprising Second Chances." Also with us, Carol Bradley Bursack, editor-in-chief of eldercarelink.com. Her book is "Minding Our Elders: Caregivers Share Their Personal Stories." And let's begin with Audrey, Audrey with us from Medford, Massachusetts.

AUDREY (Caller): Hi. I've been trying with my sister and brother to get my mom into - to move from her house, where she lived alone, into assisted living, to get her to move up to Boston, where I live.

She was a born-and-bred New Yorker and really, vehemently opposed to moving out of her house. But her health was getting increasingly bad, and I was going back and forth between Boston and New York about every two weeks - and sometimes twice a week during medical emergencies.

So you know, slowly, slowly, slowly, I had to, with a lot of support from my brother and sister, but I had the hard conversations, mostly at her geriatrician's office, about her moving. And she has dementia and it would just, you know, the stress of the discussion would just send her into almost being non-functional.

CONAN: Was it helpful to have the doctor involved?

AUDREY: Oh, yeah. The doctor was there in a great geriatric practice, and she was wonderful and just there for my mom, you know. In the middle of this, the social worker came in, and they were really good about when to stop the conversation, which was really helpful for me, because I just was at a loss.

CONAN: I wonder...

Ms. BURSACK: A third party is - I'm sorry.

CONAN: Carol Bradley Bursack, go ahead. I'm sorry.

Ms. BURSACK: I was just going to say, a third party is invaluable in these talks, whether it's a doctor or your faith community, your parent's faith community or a really good friend.

AUDREY: Yup.

Ms. BURSACK: It just can take so much pressure off the family because the family dynamics often get in the way, and then the parents feel bossed around. And if you have a third party - you did a very wise thing by bringing a doctor and finding a geriatrician. That's fantastic. You did well, Audrey.

AUDREY: Thank you. Well, we ultimately - what I did was, I asked her if she would come up to a place up in Boston for two months during the winter, because there are places up here that - really good assisted-living facilities that do respite care. Because I said I was worried about the winter and the snow, and what if I couldn't get down to her? And she...

Ms. DICKINSON: You know what? Let me just jump in there as someone who's also from New England. That was it for us, the winter. What we found was that one snowstorm was so frightening because the care that we had - the house of cards that we had set up fell apart. And that was frightening for all of us, and that's exactly what we did.

We said: Let's try this. Let's see how this works out. Let's get through the winter. And that's - it worked for us as well.

AUDREY: Yup. Yup. So...

Ms. BURSACK: I live in North Dakota. So we deal with that as well.

CONAN: You know a little bit about snow, too.

AUDREY: Yeah, that's even worse than New England. Well...

Ms. BURSACK: Yeah, it is, and I went through many a blizzard trying to help people who had fallen, and I got the emergency calls. So I can relate.

CONAN: Audrey, are you trying to finish up here?

AUDREY: Yeah, so, anyway, we brought her up. I looked at eight different places and found one that I thought - you know, I sort of put myself in her shoes because we are very, very close. And she, after two weeks up here, she said: I'm ready to stay.

Ms. BURSACK: Wow. That's fabulous.

AUDREY: You know, the lovely thing is, I know she's safe and her dementia - that she has mental, you know, brain activity now. She's stimulated not with a 24-7 caregiver, but with activities that are really helping her to have good quality of life.

CONAN: Well, Audrey...

Ms. BURSACK: That is huge with assisted living and nursing homes, is getting that sociability, and they often will blossom. My mother-in-law did. She got a new lease on life.

AUDREY: Yup. That's what I feel like.

CONAN: Audrey, congratulations.

AUDREY: Thank you.

CONAN: Bye-bye. Let's go next to Melissa, and Melissa's on the line from St. Louis.

MELISSA (Caller): Hi. First-time caller, longtime listener, love the show.

CONAN: Oh, well, thank you for that, thank you.

MELISSA: I was actually calling - it's a great segue, because your panel was talking about family dynamics. I'm one of three children - three girls, actually, and I'm the middle child. I'm actually extremely emotional - imagine that.

My younger sister is extremely far from emotional. She's extremely logical. My - which leads right into my question. My elder sister was named in my parents' living will - responsible legally if, God forbid, anything were to happen to them, which really upset my younger sister as to why she wasn't named responsible for them legally. And I was wondering - the question for your panel is: How do parents make such decisions as to which of their children do they leave responsible in such a horrifying situation?

Ms. DICKINSON: Oh, I'd love to weigh in here. As one of three girls as well, I'm well familiar with the sister dynamic there, as well as the different personalities.

Your parents chose your oldest sister. Guess why? Because she's the oldest.

MELISSA: Because she's the oldest.

Ms. DICKINSON: There you go. And, you know...

CONAN: And it's still not fair.

Ms. DICKINSON: It's still not fair. Now, in our family, we have a similar, you know, breakdown in terms of personalities. And we actually influenced our family member to assign jobs that were well-suited for our temperaments. And so that worked out really well. I don't know if maybe you and your sisters - we - my sisters and I, we wanted what was best for our mother.

MELISSA: Oh, absolutely.

Ms. DICKINSON: So we felt that the more logical person would be better at that function, and so that was all agreed that that was a good idea. I don't know - I can't see us clashing over who gets to do that hard job, you know.

MELISSA: Oh, it's such a terrible thing to imagine, who gets the job. Isn't that awful?

Ms. BURSACK: Personalities are...

MELISSA: (unintelligible) perfect mix of the two.

CONAN: Yeah, Carol...

Ms. BURSACK: Personalities are huge here, as well as birth order. And I agree with Amy that many times, they do give it to the person who's the oldest, but personalities are generally far more important.

And there's a role for each person in the family, if they can sit down and look at it that way. No one needs to be left out.

MELISSA: Any ideas of how to - we're all in our early 20s, or all in our 20s. And any idea on how to make that make sense to my sister, my younger sister?

Ms. DICKINSON: Well, I think that the three of you should talk amongst yourselves, and you decide what you think - as a group, what you think is best. And if you feel like your parents should maybe make another choice - remember, this is all about them. This is for their sake, not for yours, not because somebody got - didn't get a job. You know, come on.

So keep your eye on the ball. Remember that this is about them and what - how their needs will be best served. And as a group, come together if you can and, you know, and go to them as a group.

MELISSA: Absolutely.

Ms. BURSACK: You can also go to a family mediator, if it becomes that big a deal with the family. A third party, again, is so very helpful, and some families have so much stress coming to grips with who gets to do what that a family mediator can sit down, and they can talk logically and help work through these issues because they don't have the family dynamic.

MELISSA: Mm-hmm.

CONAN: Melissa, good luck.

MELISSA: Thank you so much.

CONAN: Bye-bye. Here's an email from Amanda: What suggestions do your guests have for dealing with aging parents you don't have a relationship or were, for lack of a better word, abusive? My mother is going to get old, and the only people she has in my life are my sister and me because she has alienated everyone around her, including us.

I haven't spoken to her in years, but I can't let her struggle on, on her own. I'd love to hear what your guests would recommend on dealing with this type of situation.

Ms. DICKINSON: Wow.

Ms. BURSACK: I would say - this is a very common question, unfortunately. I get a lot of those. And in the end, often people have to go to a guardianship. They sometimes need to have a third party in charge because some of these people have such issues from abuse, they may not be a good caregiver.

They may have the best intentions of being a good caregiver, and then when they get with this vulnerable person who used to abuse them, they can become abusers as well. And they don't mean to be, but it can happen. And so oftentimes, going to a guardianship...

CONAN: Hard to recognize that in yourself sometimes.

Ms. BURSACK: It is. It is. And people don't mean that, but it's so stressful. As Amy was saying, even, you know, with a loving family and lots of help, caregiving is so stressful. And if you've been from a family where there's abuse all those years and you go in and say, I'm going to take the high road; I'm going to be the caregiver - and you go in with the best intentions. But sometimes, that abuse can come out sideways, body language, whatever. And it is often best to take a more distant role and...

Ms. DICKINSON: Also, we all -

Ms. BURSACK: ...then get somebody else who's officially in charge.

Ms. DICKINSON: Right. We all have resources in our communities that I, you know, I've learned about through my column and also through my life. And these resources - the office on aging, their geriatric care managers - there are ways to see to someone's well-being without really having to be so personally involved. And I think I applaud this person's, you know, desire to do what she thinks is the right thing.

Ms. BURSACK: Going to the state website is a good place to go to. Every state, if you go to their website, you'll find some version of aging services. And if you follow those links, you can get contact information that should help.

CONAN: Let's go next to Nancy(ph). Nancy with us from North Branch in Michigan.

NANCY (Caller): Hi. I have got my cell phone, and I think the battery is going to last. But I - basically, I have a lot of negative things working against me. My parents moved away. They're the ones that moved for the retirement. And my dad has always been the strong one in the family and he is - has early stages of dementia right now. He's the one who's in charge. My mom is failing physically, and she has anxiety issues.

I have seen that they are starting to have trouble and yet, they keep the house together well. It's just that they are starting to become more and more isolated. And since I live in Michigan and they live in Arizona, I can only get out there...

CONAN: Mm-hmm.

NANCY: ...once in a while. And I have spoken to a geriatric care manager. But my hope is to keep them in their home as long as I can, but I'm not sure how to judge that, really. And I think possibly I'll know it when I see it, but they're also probably in some ways very good at hiding it and...

CONAN: And maybe best in this situation to have the talk sooner rather than later.

NANCY: Right. And I have been talking to my mom. My mom, with her anxiety issues, occasionally overblows situations. And my dad, on the opposite end of the scale, says everything is perfectly fine. But...

CONAN: Mm-hmm.

NANCY: ...he's starting to have real serious memory trouble.

Ms. BURSACK: Well, masking these things, as Amy was talking about, is very, very common. Covering it up - I mean, who wouldn't?

CONAN: Who wouldn't?

Ms. DICKINSON: Right.

Ms. BURSACK: And also the denial. We don't want to face these issues, and your parents certainly don't, either.

NANCY: Yeah.

Ms. BURSACK: I think you're very wise getting a geriatric care manager.

Ms. DICKINSON: Yeah. Geriatric care managers are great for this purpose. Also, I have to say there is no substitute for being physically present for more than a few days, if you can manage it, because you really do see how they get it together for your visit.

NANCY: Yeah.

Ms. DICKINSON: But when you drop in, look in the fridge, you know, look around, see how they're managing over a course of, you know, several days and...

NANCY: Well, that was one of the early alarms. The first time I went to visit them, it had been a few months. And I've - this will be - I'm going next week, it'll be the third time in six months I will have gone out there, pretty good.

Ms. DICKINSON: Mm-hmm.

NANCY: My schedule is going to get much worse very soon. But anyway, the refrigerator was in a really bad shape. And that's - that was up - the only thing that really seemed to be wrong other than my mom's occasional desperation and isolation.

Ms. DICKINSON: Right. But you can get help in - you know, housekeeping help is huge. That can - you know, that can be very helpful. And that person can see how they're doing as well.

CONAN: Nancy, I know this is tough, but we have to wish you good luck.

NANCY: Okay. Thank you very much.

Ms. DICKINSON: Good luck.

CONAN: We're talking with Carol Bradley Bursack of eldercarelink.com, and with Amy Dickinson of "Ask Amy."

You're listening to TALK OF THE NATION from NPR News.

Let's see if we can get one more caller in. Judith(ph), Judith is with us from Chico in California.

JUDITH (Caller): Yes, I'm glad you got to me because one subject you haven't touched on: These assisted living places, and the different kind of care providers you're talking about, cost quite a bit of money. And for people and families who are - their only option is some Medicare, MediCal facility, which would be Medicaid...

CONAN: Right, Medicaid.

JUDITH: ...across the nation. And given state budgets slashing so many of the programs for low-income in assisted living and home health care and things, how do you deal with that kind of situation, where your elder knows the only place they're going to be able to go is a place no one wants to go?

Ms. BURSACK: That is really a sad situation because nursing homes and assisted livings are so different all over the country. I'm in an area that's blessed with very good care, and I realize we're quite spoiled. But I've heard from people from California and...

JUDITH: It really isnt just California, I think its low-income.

Ms. BURSACK: ...all over the country where they are worried about poor care.

CONAN: Yeah. And what - there are different kinds of - but this conversation, as we've all been saying, difficult enough, but as Judith is pointing out, what if the parent knows they're going to someplace that's the lowest common denominator?

Ms. BURSACK: I think, there again, letting them know you are there with them the whole way, the whole journey. You are their advocate. You realize that there is a state ombudsman that will help with nursing home care and that you will be on alert. You don't want to go into a nursing home as an adversary. That isn't a good idea.

CONAN: Mm-hmm.

Ms. BURSACK: But you do want to go in as part of the care team, and I think reassuring your elder that you are not leaving them. You are -you're getting more help with their care, that you are part of the care team, and then follow through on that.

CONAN: Judith, thanks very much for the question. It's an important one.

JUDITH: OK.

CONAN: Appreciate it. And Amy, before we let you go, how's your mom doing?

(Soundbite of laughter)

Ms. DICKINSON: She's doing well. She, you know, we're very, very fortunate. And she has this amazing, you know, sense of humor. Here's how she put it, Neal. Getting old, pretty exciting.

(Soundbite of laughter)

Ms. DICKINSON: And I said, yeah, the way you do it. You know, it's - you want your parent to stay themselves to a certain extent, and we've been very, very lucky.

CONAN: Carol Bradley Bursack, thank you so much for your time today.

Ms. BURSACK: Thank you, Neal. Thanks for having me. And it's nice hearing from you, Amy.

Ms. DICKINSON: Thank you.

CONAN: Carol Bradley Bursack is editor-in-chief of eldercarelink.com. And Amy Dickinson, with us here in Studio 3A, the writer of the "Ask Amy" column and the author of "The Mighty Queens of Freeville." Of course, we'll have you back soon, Amy.

Ms. DICKINSON: Thanks, Neal.

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