Maggie McKay (Host): It's never easy seeing your parents' age and having the adult child dynamic flip, but there are sensitive topics you need to discuss with your parents, and it's important to do it in a caring, compassionate manner. So, how do we bridge those tough topics? Joining us today, is Sue Breithaupt, health educator and social worker at Valley Health System with some very practical and useful advice on how to go about it.

Host: Welcome to Conversations Like No Other, presented by Valley Health System in Ridgewood, New Jersey. Our podcast goes beyond broad everyday health topics to discuss very real and very specific subjects impacting men, women, and children. We think you'll enjoy our fresh take. Thanks for listening.

Thank you so much for being with us today, Sue. Let's dive right in because there are so many questions on this sensitive topic. For starters, when should an adult child start having these difficult discussions?

Susan Breithaupt: That's a great question. Thank you for having me here today, Maggie. I often say that I think it's probably as soon as you possibly can and definitely before an aging parent becomes sort of confused. Definitely not during a crisis. Sometimes crisis can be opportunities. But if it can be something that started, maybe as they start to approach their senior years and, you know, you recognize a couple of issues that you're concerned about, maybe they're slowing down regarding mobility or they did recently have a hospitalization, it might be time to say, "I have concerns. What do you think of this and that?" But definitely when someone's feeling well and not in an intense, situation, so to speak.

Host: And I always say timing is everything. Like don't ask someone if you know they're cranky in the afternoon or the morning when they first woke up, you know.

Susan Breithaupt: Absolutely. It's a really good point. We've had, you know, people who live in other parts of the country and they come to see their parents during the holidays and they want to have these conversations. Well, the holidays can be very emotional for people in general, especially if you're older and you've sustained many losses and a lot of changes. It's best to sort of avoid those critical times. Again, like, you know, when someone's in the hospital about to have a, you know, major surgery or after a major loss, that's not always the time to have those conversations.

Host: Exactly. So Sue, before you broach these topics with your parents, what should we be doing in advance of starting the conversation?

Susan Breithaupt: That's a good question too. I definitely suggest-- well, first off, if there's other people involved such as, you know, you have some siblings you need to talk to, if your parent, you know, still has their spouse, it definitely might be a good idea to speak to those individuals before to mention that you have these concerns. And when you have these discussions, most importantly, I think that you have to do some homework. I think that's really helpful. You know, if for instance you're, you know, identifying that your loved one maybe needs to think about downsizing, you should have some maybe ideas about what that would look like. Does your parent need to move into an assisted living or even independent living? Do you have information on that? That would be really helpful. Or if you feel like your parent needs to get out and stop isolating, do you have information on maybe senior centers in the area or adult daycares in the area? That would be very helpful as well.

I think the other thing is to make sure that you know your motives. Very often, you know, this becomes a power struggle. And if you're authentically concerned about your parent and you really just want to keep them safe, those are excellent motives. But if you dig deeper and it's more about control or even anger, some heavier issues, it's important to know exactly what you're doing here, and I think very often that's when it goes awry when we're not authentic or our motives are not as pure as they could be. And most of all, be prepared to be patient, listen and don't expect everything's going to be worked out in one conversation. It takes time.

Host: Exactly. I think, the earlier idea as well as all those having a plan before you go in, like, you know, options or ideas. So, it's not just, "You need to move, you need to downsize," but without any examples. So, how do you start the conversation?

Susan Breithaupt: Well, you definitely don't want to do this during a very stressful time, so that's first of all. I think if you could start when someone is relatively well and their cognitive health is still intact. And say, "You know, I have something on my mind..." I think I statements, you know, I always say I for ice cream, I statements are really good. "I'm concerned." There's just a couple of specific examples. "You fell the other day" or "You've been in the hospital two or three times, you know, the last six months," you know, "I'm concerned and I'd like to talk a little bit about these things and maybe talk about what you see in the future, how I can help you." and I think that might be the gentlest way to start.

Host: Right. That sounds good. So if your parent has a fear of aging and understandably so, what advice, Sue, can you give us to help alleviate that fear?

Susan Breithaupt: First of all, I think it's important to be prepared to listen to them and also be empathic. And one way to do that is to put yourself in your parent's shoes. What if it was you that just recently had a couple of falls or were forgetting more often, or had lost your spouse six months ago? Put yourself in their shoes so you can, you know, go into the conversation with some understanding and compassion. I think that's important.

And as I said, really listen. Listen not to be prepared to get them to do what you want or to say what you need to say, but really listen for the sake of listening. And, just say, you know, "I'm not there. But I could understand that being really scary. "What I heard you say is, you know, I am really, really scared of getting older and forgetting or being dependent on someone," and to just sort of repeat that back like, "I hear you, I understand you're scared of that. I'm here. You're not alone. I'm here to support you, so are other people. And maybe we can come up with solutions together." I think that would be the best way to go about it.

Host: That sounds good. Including them, like you said, doing it together. What are some signs that a parent is in an unsafe situation?

Susan Breithaupt: They can be more obvious, such as bruises, looking unkempt, maybe isolating more, noticing that bills are unpaid. Weight loss can be a significant sign. If somebody is forgetting things more often, I mentioned, not as social as they used to be, just more depressed, more stressed, that can be signs that something is going on that maybe they are unsafe. And I think, most of all, there's an avoidance, very often we see that. They don't want to depend upon their children. Most people do not want that, and so they'll sort of avoid them or avoid the conversation.

Host: So, why do older people stop showering?

Susan Breithaupt: I think a lot of that has to do with fear. It sounds strange, it's something we take for granted. We often think of showers as a positive thing. But for older people, I think that they're just kind of scared. They think of the bathtub. You hear about all these falls in the bathroom. You know, it's sort of an unsafe environment. Especially if they live alone, it can be very scary. Other reasons can be because there are some depression there. Very often when people are experiencing depression, they don't take care of themselves as they always have done. so not showering, it becomes part of that issue.

Also very practically speaking, a lot of older people start to lose their sense of smell and they don't even recognize that they need showers sometimes. And then, more of a concern is that people who start to experience memory loss may just forget to do so or forget the last time they did shower, and that can happen too.

Host: That's a lot of reasons. Are there suggestions for dealing with a parent who is rude or crass or who makes inappropriate remarks? Because sometimes I've noticed when we were visiting my mother-in-law in assisted living, people just say exactly what's on their mind, even if it's not appropriate. So, how do you deal with that?

Susan Breithaupt: That's really, really challenging, especially if your parent was relatively a polite and kind person and they've made some changes, because that does happen. But one thing I do suggest is that the person, if this isn't their typical personality type, is to maybe talk to the doctor about signs of even dementia or depression, because both of those can be signs of either of those illnesses. Being sort of rude and angry and nastier can be signs of those things. So, you want to rule out those situations first.

Something else that can help is to make sure that you share with trusted others about this, because this can be very, very uncomfortable and upsetting. I worked with a woman recently and she said her mother was a lovely person. She went into a nursing facility and she started telling her daughter in front of people that the other people were ugly. She was mortified, she was so upset. So, she talked to the nurse about it. She talked to her siblings about it. And her mother was indeed starting to struggle with some memory loss, which did help her feel a little bit better, but it was so hard. There are support groups to deal with this, which I really do encourage caregivers and adult children to consider, even online support groups.

I think also it's important to know that what you can and can't do. We certainly can talk to our loved ones and say, you know, "This really hurts me. I feel..." Again, I statements, "I really feel uncomfortable when you talk like this" and they may respond or not. But if there is just a refusal to change the behavior, you may have to accept that this is who this person is. You know, you can change yourself, but not someone else, only reactions to it. Sometimes what people will do is if the person is continuously very difficult, they'll limit their time with their loved ones. We'll make sure they visit. But after a half hour, an hour, it becomes intolerable.

I love this expression, it's Q-TIP, quit taking it personally. There are times when people who are rude or crass or nasty, they're just hurting in some way and it has nothing to do with you and it's just where they're at. And to keep in mind, because it's very easy, especially with your loved ones, your parents, to sort of react. Remember that going to that level isn't going to help anybody or anything at all. Deep breaths, lots of deep breaths.

Host: It's hard to get used to though, for sure. What if outside help is refused? What if your parents just say, "Absolutely not. You can't make me. I'm not going anywhere. I'm not moving"?

Susan Breithaupt: Right, which usually happens a couple times. I want to forewarn people, you know, we have this sort of Hollywood image on TV. You sit down with your parents and say, "I'm concerned," there's a couple tears and they finally say, "Yes, I'll do what you want me to do." Now, that rarely happens, and please keep that in mind. I think persistence is very important and to recognize that when you do start this conversation, before you do, be prepared that they may refuse. I think it's part of the process sometimes. So, knowing that can be helpful.

I think that evaluating the situation continuously, like you might hear, "No, I'm not ready for that." Okay. Maybe in two or three weeks you evaluate again by going in and checking things, you know, asking other loved ones what's going on or even having your siblings or a friend or one of their friends go in and just kind of evaluate if they're still struggling, that can be helpful.

One of the things you can do is also consider getting an expert in after a couple times if they disagree still, you know, like a care manager can be helpful, enlisting the support of their doctor's office or a nurse to talk to them about getting more assistance or moving, giving them options, saying, "Okay, I understand you don't want a full-time aid. What if we did five hours a day and on the weekends, you came to me more often" or whatever the situation, or "We do this." Of course, you want to, you know, again, evaluate not only their environment, but you want to evaluate for, again, dementia, depression.

One of the things that some of the adult children I've worked with have done is sort of make it about them. After a couple times of hearing, "No," they'll say, "Okay, if it's not for you, could you do this for me? I'm scared and anxious. I need support. This would help me if you had someone in a couple times a week." Sometimes that does the trick, sometimes not.

Host: So, the problem with siblings is sometimes everyone has a different idea of what the care should be. So when you don't agree on it, whether it's two, three, four people, however many, how do you handle that?

Susan Breithaupt: Very common and very difficult situation. Find out what your parent wants. Make sure you know what the individual wants. Again, sometimes this has to do with persistence as well. If you are the one that is the main caregiver, of course, that can be infuriating when people are not hearing you, and that's really hard. And sometimes enlisting the support of someone outside of the family at that point maybe helpful. You know, having your sibling go with you to the physician's office or if there's a home care nurse, having that person sit down with you or care manager, that can be helpful.

Agreeing to disagree, you know, for a little bit can also be something that you just have to do. And if the person's unsafe and you're the main caregiver, sometimes you just have to do what you need to do.

Host: That should be the priority, of course, your parents. What is an advanced directive?

Susan Breithaupt: So in short, an advanced directive is a legal document and it's outlining what, you know, an older person or an ill person would want done in case they were unable to make decisions for themselves. And the advanced directive can also delineate someone to make those decisions for you. You might have two or three people, "I'm going to go to my husband first and my daughter," you can have a couple people that would make those decisions. And then within the advanced directive, it can tell you, "Well, I don't want to ever be put in a ventilator. I don't even want a feeding tube. I don't want anything" or you may say, "I want everything done. I want to be kept alive no matter what." So in short, that's what an advanced directive is.

Host: Does that need to be in your will or is it separate?

Susan Breithaupt: No, it's separate. It's absolutely separate. You can go to an attorney to have one completed, or you can go to a hospital or even a doctor's office. And if they have that information, as long as you have two witnesses that are not part of the family or part of the care team, the direct care team of the patient, the older person, that person can witness you signing this, the older person making these decisions.

Host: So, this next one is really tough for so many people. I felt so lucky, my siblings and I, my mom, when she was in her mid-80s had vision issues and she said, "I hate to say it, but I can't drive anymore, so I'm selling my car." And she did it all on her own her decision. And we were so lucky because we were worried. But I think oftentimes that's not the case, because I have other friends who say, "I don't know whether to just have the car disappear, call the DMV or what." So when you're concerned about your parents behind the wheel, what do you do?

Susan Breithaupt: Recently, this has been really tough for a lot of men, especially older men, very, very difficult, very common. First thing you can do is directly talk to your parent and explain your concerns. If they refuse, which they often do and they make excuses, I think at that point you can talk to your loved one's physician about that issue. Some doctors are more helpful, that's the importance of having a primary care physician who knows the older person well, maybe there's some trust there and they may listen to the doctor or the nurse at that office. An outside person might be helpful too to have, again, a care manager or close friend neighbor talk to them.

If there's continuous refusal, going to Motor Vehicles, it can be done. You know, you can call Motor Vehicles about this and an elder person can be tested, given another driver's test and that can be very helpful. Do they always listen? No, but it is an option. It's a choice. So that's just another option, but very difficult. Sometimes you just have to take the keys if you truly feel that person is unsafe. If someone is slightly forgetful, it might be a little bit easier at times to take those keys. I know there's been stories of people playing with wires of the car so the car wouldn't start, and that's extreme and not ideal, but safety is of the utmost importance.

Host: Yes. I have a friend who took the battery out of the mother's car and then another sibling didn't know it and called AAA and had a new battery put in because they didn't communicate. And he's like, "I took it out on purpose."

Susan Breithaupt: Right. I'll say that, you know, this was a little tougher with older generations. Believe it or not, people who are getting older now, they seem to understand some of these things a little bit better because they themselves went through it with their parents. Years ago, people died young, you know, so they didn't know.

Host: Yeah. How does one prepare or deal with a parent who sees their adult child as their child still and someone who shouldn't be involved in their care and decisions?

Susan Breithaupt: That's another challenging issue, and it happens very often. Again, it just has to do with effective communication. All you can do is communicate, know your motives, be patient and, again, communicate, "I'm very concerned. I understand you see me as your child. But the fact is, at this point, you do need more assistance. I'm here to help you. That's all I want to do," and be persistent about it. That's all you can do.

Host: My mom had that on our refrigerator when she was taking care of her dad, my grandfather. You mentioned don't bring up these topics when you're already in crisis mode, but sometimes it just happens that nobody ever had the discussion. They avoided it, and now it's too late. You're in crisis mode. So, what do you do then with the discussion?

Susan Breithaupt: This can be a double-edged sword actually. it is very difficult if someone is hospitalized or there's a fall or a mental health crisis and you have to start this conversation. It's often much more challenging because everyone's on high alert. Everyone's emotional. It's hard to communicate when you're at that point. So, be prepared that that will probably be the issue. There will be a lot more emotions rising, all different types of emotions when you go in to speak with this individual. Try to become as calm as possible. It can also be an opportunity at that time. Sometimes crisis is when real movement happens in terms of more assistance. By that I mean, yes, sometimes in the hospital to have to talk about this is very difficult. At the same time, there is an opportunity for possibly after a fall or an issue, your parent has to go into a rehab, so you have more time and they can get an idea of what it would be like not to live in their home. But you just have to persist and go with it. And one day at a time, one moment at a time at that point. It's very overwhelming, and other people have gone through this. Enlist the support of other people and even a social worker at the hospital.

Host: And that's what you do, right?

Susan Breithaupt: Yeah. Oh yeah. I used to. I worked for hospice, the hospital. Absolutely. Saw it all the

Host: And what does it mean when a parent has started to isolate themselves?

Susan Breithaupt: Yeah. That can mean a few different things. It could mean that they're experiencing some forgetfulness, dementia, and they just don't want to see people and like kind of hide it like we were talking about before. It could be just practical reasons, sort of like they've just lost a loved one or someone they live with or they don't have transportation or their mobility has been compromised and they can't get out and connect with others. It might be time to kind of as assess or evaluate what is going on. You know, look for any bruises, notice the mood, ask some questions, see how they're, you know, consistent with their answers or those types of things. Encourage a resource such as a senior center or going to adult daycare, something like that.

Host: In closing, Sue, is there anything else you'd like to share?

Susan Breithaupt: What I just really want to encourage is of course to remember to be as calm and empathic and compassionate as you can, put yourself in your loved one's shoes. And remember, you only can do what you can do. Of course, you want to be responsible and take care of your loved one, but sometimes when, you know, if they're not confused, if they're still competent and you suggest all you can suggest, and they won't listen to you, you also have to kind of respect that and let that go and see what happens and just reassess it maybe in a couple months. You do what you can do and you do the best you can.

Host: Thank you so much for being here, Sue. This has been so informative and educational and really eye-opening, so we appreciate your time and you being here.

Susan Breithaupt: Of course. Thank you so much.

Host: Again, that's Susan Breithaupt. For more information about caregiver resources, please visit us at valleyhealth.com/valleycares or valleyhealth.com/events for community presentations. And if you found this podcast helpful, please share it on your social channels. And for more topics of interest to you, visit our entire podcast library. Thanks for listening to Conversations Like No Other, presented by Valley Health System in Ridgewood, New Jersey. For more information on today's topic or to be connected with today's guest, please call 201-291-6090 or email valleypodcast@valleyhealth.com.