Is Your Life as a Dementia Caregiver Making You Sick? With Mr. William C. Heckman

Are you caring for a loved one with dementia? You don't have to figure this out all on your own. Welcome to Truth, Lies Alzheimer's, the show that helps you reimagine a new relationship with your loved one, a relationship a little more free of stress and anxiety. Join host Lisa Skinner and her 30+ years of experience as she guides you on a new path to a better relationship with those you care for. Here's Lisa.

Hi everybody, and welcome to another new episode of The Truth, Lies Alzheimer's Show. I'm Lisa Skinner, your host. And I have a very special guest here with me today. His name is William Heckman. And coincidentally, I was a guest on his podcast a few weeks ago. I'm going to tell you a little bit about what he does and how it ties in to the Truth, Lies Alzheimer's Show. So, I invited him to be a guest on my show because I felt very strongly that a lot of you would love to hear the stories that he's going to share with us with having family members who have lived with Alzheimer's and dementia and friends and people that he's associated with. So that's kind of what we're going to dive into today, but let me first start off by introducing him again. His name is William C. Heckman, and Will joined the American Institute of Stress in 2019 in the position of executive director. As such, he plays a pivotal role in steering the organization towards its mission of stress awareness and mitigation, making a lasting impact on both national and global levels. In March of 2020, Will founded AIS's podcast, Finding Contentment, hosting more than 65 episodes and adding more monthly. In that capacity, Will leads discussions on stress management, well-being, and related topics with some of stress medicine's leading scholars and personalities. In addition, he also moderates AIS webinars, cultivating insightful dialogues in more than 20 sessions to date. Welcome to the show, Will. I am so excited about you being here, and I know that my listeners would be so grateful to hear some of your tips of how they might be able to relieve some some of the stress that accompanies having loved ones living with Alzheimer's disease and related dementia, or being a caregiver to somebody living with brain disease and cognitive decline. Because as we know, and I know you know because you've had the personal experience with at least one family member, that this is probably one of the most stressful tasks a person could ever take on. And it's very stressful, and a lot of caregivers end up becoming ill, chronically ill, due to the stress that they experience in this realm. And some of them even pass away before the people that they are caring for. So without further ado, let's— I asked you to come on today because I really would love for you to share first your personal experience with Alzheimer's disease and/or related dementia and what you went through personally, and then share some other stories so our listeners, my listeners, can relate to some of those stories and maybe pick some golden nuggets up from your experiences?

Well, first of all, Lisa Skinner, thank you so much for having me on. I enjoyed our conversation very much on my podcast, and I was looking forward to doing this. So thank you for the opportunity to do this. Yes, I do have some personal experience dealing with people who have Alzheimer's. It's, uh, family members. My— both my father-in-law, my mother-in-law suffered from it and is still suffering from it. And along with the family members and the caregivers who suffer along with them, we understand, you know, at the American Institute of Stress, we focus a lot on stress and stress management. This is not the first time that I have spoken with people, especially caregivers, uh, and family members who are dealing with overwhelming stress due to a family member going through either a mental health issue like Alzheimer's or some other issue that they become caregivers. It is extremely hard. And I think one of the most stressful things that a caregiver goes through, if it's a family member, is their inability to do anything about it. You cannot help, you cannot fix it, you cannot, um, you pretty much have that, that feeling of helplessness and being out of control.

Did you feel that way when you uh, learned that your— both your mother-in-law and your father-in-law were diagnosed with dementia? You know, I think your family—

it did in a, in a very, um, big way. I mean, it wasn't expected. Um, my father-in-law was diagnosed with it along with some of the health issues years ago. He's— he has since passed away, and my mother-in-law was his main caregiver. My wife is very close to her family, as is my daughter. And, um, the situation was one that caused the most stress is our plain ignorance, our unfamiliarity with what to do. I mean, it's not like we didn't know it existed, It's just a, we had no idea of what to do. And that learning process is very stressful, but watching my wife go through it had a big impact on my mental health and my emotional health. Um, and also I was very close with my father-in-law as I still am with my mother-in-law. So it is, it is, it does have a very impact on your family. Especially if you're not prepared, if you're not educated about it.

So is it fair to say, because I know a lot of the families I've worked with and the caregivers I have guided through this journey have said, and you mentioned it, this wasn't expected, so you weren't prepared. So do you— is it fair to say that You felt as a family that you were always in a position where you had to be reactive to everything that came up, and a lot does. It's probably one of the illnesses that the things that come up on an hour-to-hour, day-to-day basis are completely unexpected unless you have been prepared and educated and know how to properly respond to a lot of the behavior signs and symptoms that we see. So, um, is that kind of a fair statement to say?

Yeah, it is. You're very reactive because you don't know what's going to happen. And, and as things come up, um, you need to do something immediately. You, you need to— it's simple things, taking care of their banking, taking care of becoming a power of attorney for health, becoming a power of attorney for, uh, financial financial things. You become the decision maker for the person with Alzheimer's if you're a family member. If you're lucky enough, you can share those responsibilities with another sibling or something like that. But yeah, you're going to have to react and do it rather quickly because they're going to need help. They're going to need assistance.

May I ask you one question?

Absolutely.

You said that your family did not expect either one of the diagnoses with your in-laws. Did you by any chance have an opportunity before they were so far into the disease and they really did not have the cognitive clarity anymore? Did you have a chance to sit down with them before that happened and talk about their end-of-life issues? And the reason why I'm asking that is because that's one of the things that I really emphasize if families possibly can, because that's another thing that brings on so much stress in these situations is if they don't have that opportunity and then it comes to the point where they're trying to figure out what would mom like or what would dad like and what would his wishes be, but they can't they can't talk to them about it anymore because they're incapable of sharing their feelings about it. And that brings on a lot more stress for the family members because they're not sure if they're making the right decisions or making the decisions that their parents would have wanted. Did you go through that at all?

We did, you know, more so with my, my mother-in-law than my father-in-law. Um, my father-in-law, mother-in-law had probably discussed it as they got older. And so, and so he was less of an issue. But with my mother-in-law, we sort of— I had to— and being, you know, the son-in-law, you know, you have a unique position. You don't want to intrude too much, but you want to help. You, you, you have to make suggestions and sort of find a happy compromise. Yeah, that's the happy compromise, is that they're safe, is that they're in a good place, that they have people there to help them, and that they are comfortable also.

Well, let me ask you this, if you don't mind.

Sure.

Um, over the decades that I worked with these families, I have seen so many instances where family members are kind of split into camps. Because they don't always agree on what type of care they feel is in the best interest of their parent. Did you run into that situation in your group dynamic? Because I know that your son-in-law—

right, happy to say we did not. Oh, that's good. We, we came together very quickly and, um, all had the same purpose. And that is she had to be safe and happy and being, being in a good place. And, um, my wife and her brother both did their homework, as I did, uh, on the side to help them with some research. And we researched what to do, what is going to be needed, what the future looked like, what is immediately needed to be done, and what is going to be done the next step. And possibly the step after that. So you, you need to sit down, research what is needed, know the person. Everyone's situation is different. Right. And ours was that we found a very good place for her to live in a campus that she is right still in independent living. And then the campus has also memory care and assisted living if she needs to move. Um, as it progressed, we were able to get more and more assistance for her. Like now she has someone who comes in daily, um, things like that, make sure she takes medication and eats and has mental stimulation. I think a lot, and you'll correct me if I'm wrong, I think one of the problems that an Alzheimer's patient or someone who's been diagnosed with Alzheimer's and is alone. Is that they tend to shutter in and be by themselves. Either they still have enough cognitive ability to realize that their memory is not what it was and might be even embarrassed by it, at least at the beginning stages. So they may not want to, you know, go out into the world and, and, and prove that to people. I kind of got that impression too. So we kind of made sure that there was some social interaction and the place that she was had a lot of opportunity for it.

Um, so can you share with us some of the situations that came up that, um, were very, very challenging? I think my listeners would love to have you share some of those with us because I'm sure that a lot of them have either been challenged by some of the same situations or will be challenged by some of those same situations, and maybe share some instances on how you handled them. And, oh yeah, if you knew today what you didn't know then, what would you do differently? Because I think that would be really helpful for people to hear.

I, you know, we were surprised by a couple of things, and I, and later now, of course, we find out that, um, they're not unusual. People diagnosed with Alzheimer's, um, a common problem that they have is paranoia.

Yeah.

And, um, so we, we, we saw that my mother-in-law started locking things away and hiding things away and was feeling afraid that people were coming into her apartment at night. None of it obviously was true. So one of the problems we were having was her hiding things like her cell phone, her keys, her things like that. And she got real good at hiding stuff.

Yes, they do. My grandmother did the same exact thing.

So, so we didn't realize that was going to happen, and that was, that was disturbing to me. Um, the fact that she was nervous or scared of anything, that, that, that hit me right in the heart. Even she even would block the door at night to her patio. She's on the third floor. I explained to her, Grandma, Spider-Man have to come up and get you. There's no one that can come in. But you know, it's, it's trying to explain it is a waste of time.

Yes.

And it's only going to agitate the person. So don't do that.

Just agree your approach.

Then we did. I think we did. I mean, we learned not to— don't argue. No, don't, don't, don't, don't correct. Um, just, they're living in the moment.

Yes.

I mean, the moment, this 5 minutes.

And she absolutely 1,000% believed that somebody was going to break into her apartment, even though she was on the 3rd floor.

Yes. And she thought that— now she lives in a place where, um, the people that run the place do have the keys. They would never come in without, uh, they— there's a— so she lives in a place where when she gets up in the morning, she has to push a button or something to let them know that she's up. They just— it's for safety protocol. That's the only time that I've heard of them actually going to someone's apartment.

If they don't do that, they'll come knock on the door, do a wellness check.

Do a wellness check. Um, so she was worried about that, and that was one of the things. And you'll also note in the person that you're dealing with who has Alzheimer's, the repetitive problem of they fixate on little things. She fixated on the fact that she couldn't drive anymore, and we took her Some— we sold her car. Um, she couldn't drive anymore. There was— there's no possible way. But we, we didn't take it personally. Don't take anything personally. It is not personal. Um, we're lucky that, that my mother-in-law has a very cheery disposition. That's not always true with Alzheimer's patients, as I've come to understand. We're very lucky. And that's what we focus on. When my wife or my daughter feel bad about something, I remind them that you have to remember, even though she does not remember the visit yesterday from her brothers and sisters, in that moment of that visit, she was very happy and having a good time. And that's what you really need to focus on, that the person is happy in the moment. And if they are happy in the moment, and celebrate that with them.

Well, one of the things that we actually know to be true with people living with dementia is you're absolutely right about that. They may not remember the actual visit, but they will remember the emotions stay with them for longer than the visit. They will remember how they felt. Had a good day during the visit, and it will last a while, a few days or whatever. So that's such a great point that you brought up, because if you could clearly see that when you were spending this quality time with her and it was obvious to all of you that she was happy, even though she might not remember the actual visit, that happiness will stay with her for a time. And it's such an important thing to be aware of with people with dementia because you can create such a positive outcome for the time you spend with them just by tapping into positive emotions. And I don't think a lot of people may realize that, but you saw it firsthand.

Yes. And it's difficult. And I understand why people find it very difficult. After all, I mean, I I know what they're experiencing stress-wise. And when you are experiencing as much stress as you are, you're overwhelmed with it when you're the caretaker, or you— even if you're not the immediate caretaker, you're still involved in that person's life, watching it decline. It is very stressful. So it is hard for you to appreciate the positives of that situation. But you really need to. Otherwise, your stress will be very catching. Negative stress is contagious.

Yeah, let's get into that in just a moment because one of the things that I want to make sure people really understand, and I cannot overstate what I'm going to say, is there are ways, and I think that this might not, um, might surprise some people, there are ways, and we've talked about a few of them so already, that you can completely turn the dynamic of any situation that arises into hopefully a more positive experience and a more positive outcome just through knowledge and education and knowing how to respond to the paranoia that is very common with dementia, the delusions that they have, or false beliefs, the hallucinations that are common, the personality changes accusing somebody that they care about of stealing their things because they hid them and couldn't find them. Yep. And what it takes is knowing how to effectively respond to those situations, because as you and I said, Will, and it's 100% true, they lock on to whatever it is they believe in that moment, and there's nothing any of us can do or say to change that. So we have to do what we call join their reality, meet them where they are, and acknowledge how they're feeling, validate their feelings, and always offer to help resolve the situation that they are worried or concerned about. And This is what I teach. This is what I am certified in. It's called a person-centered approach to dementia care, and it can make all the difference in the world to the outcome and the quality of the relationship that is possible to have with the person you're caring for or your loved one. So you're not always in a constant state of stress and frenzy.

Right.

So that's, that's, you know, kind of a different conversation. But I did want to emphasize that it is possible to turn things around through knowledge.

Give you— I'll give you the perfect example of that.

Okay.

So one of the things, as I mentioned, is that she would put a chair underneath the doorknob at night before we— we— she has a two-bedroom apartment. So we stayed, we stayed there with her for the holidays. So one night I started doing that. I said, Grandma, stop that! What are you doing? That chair is way too heavy. And I took it and I put it underneath the doorknob.

Cool.

I said, don't, you're going to hurt your back doing that. I'll do it. And so I, I joined her reality and still was her, her friend and son-in-law and helped her with it. And then we moved on. We didn't make a big deal of it and say, you know, not necessary, you don't have to worry. No, we took care of it and then moved on to the next thing, which was more pleasant. And I, I thought we do try to do things like that, you know, um, solving little problems like that and maybe going on. If the person is, is telling you a story for the 50th time, and that will happen. Oh yes, react like it's the first time and say, that was great. Ask questions, because their long-term memory a lot of times is still intact.

Yes, that's absolutely true.

And so if you can share those memories, so they feel more normal being able to share a memory with you, because they're cognitively thinking, see, I still can remember, even though they can't remember literally what they had for lunch. But it's still— you, you have to join in with that and, and take part in that moment.

That's what are some of the things that you've heard from friends that are, uh, experiences or have experienced that you'd like to share with Um, I have, um, a couple of friends, a part of a motorcycle club, and a couple of the guys, elder, who are even my age and, and younger, are—

have a similar situation where their in-laws or their mothers or fathers are going through Alzheimer's and they're so affected by it that it, it caused severe depression in them.

And, um, what are some of the things that, um, are they feeling are such cause for concern? What types of feelings are they experiencing due to their relative having?

I mean, everyone is different, so every, every, everybody who's going through Alzheimer's is different. But being the caretaker, what they were— some of them would go through and have learned some of the lessons I've learned and some of the things that you teach people and have learned that. It may have taken a little longer, may have taken a little quicker. Some of them never learn it and are just overwhelmed seeing a loved one go through this, and, and absolutely, it— they're destroyed. And it affects them personally and their family because their son is seeing their dad react to his mom going through Alzheimer's. So it's very infectious. So we— I, I, and I've seen that happen as well.

Yeah, me too.

And, and I don't know, it's heartbreaking. It's— I don't know what to tell them. You certainly can't help, um, the person with dementia or Alzheimer's. And I, I know how difficult it is for them to go through it. I can only tell them, you know, what to do to keep themselves mentally healthy, or try. To keep themselves mentally healthy.

That's a perfect segue into getting into what are some of the things that people can do to help relieve those feelings of stress and anxiety and desperation and hopelessness and depression that a lot of family members and caregivers realistically experience while their loved one or the person they're caring for is going through their dementia journey?

Well, number one on my list is listen to Lisa Skinner. She's a woman who has 30 years experience in all kinds of cases, in all kinds of situations. Who are you going to bring your car to, to be repaired? Some guy's been doing it for 3 months or 30 years? Same thing. If you, if you need to learn about what you're about to go through and learn what it is that you can do to mitigate your own stress. Everyone's stress is different. Everyone's perceptions are different. Everyone's personalities and your nature is different. So the, the thing is, is that you have to understand what it is that you're about to go through.

Yes.

First thing is accept it. It is a, a just a part of life. It is what it is. I hate to be a cliché, but the thing is you have to— you're on an airline and the plane is going down. Who do you put the oxygen mask on first? Yourself. So if you want to be a help to your loved one who is diagnosed with dementia and Alzheimer's, you got to take care of yourself first. Um, if you go to stress.org, obviously we have many different ways for you to help manage your stress. Breathing exercises, meditation, all kinds of different things. There are assessments to let you know what your triggers are, what it is that's really getting to you. We even have courses in it. What I can tell you is there's one thing you should never do. And that's nothing. Because if you don't do anything to manage your stress, it's going to manage you.

Yeah.

And stress will lead to severe anxiety, GAD, which is general anxiety disorder. It can lead to severe depression. It could— and those are the mental issues that you can have and emotional issues you can have. But if you do not manage your stress, you— it will manifest itself in a physiological way. Cardiovascular, pulmonary, gut-brain reactions. I mean, I could go on and on and on of the things that overwhelming stress that's— it becomes chronic stress can do to you. I'm not going to do that here, but all I can do is tell you that it is important that you look at science of stress and, and the science-based management techniques and what works for you. The only thing that I can say in general is to try and balance it. If you have a hard day with a loved one that is going through a bad day, and they've been Alzheimer's dementia patients do have bad days too, balance it out. Go have a good day, even if it's alone by yourself. Do something, but balance it out. Um, don't let it overwhelm or take over your life. You, you— that person, especially if they have severe Alzheimer's, tomorrow is not going to remember that bad day, but you will.

Yes, you bring up so many just exceptional points to, um, the situation that you've been through and other people have been through and I've been through. And I think that, you know, it's probably the truth of the matter is, is people don't stop to actually think that these things are happening. Either they don't know what they don't know or they feel that they're just too involved or too, too in the weeds to do anything about it. So do you have any suggestions for that? I hear that from a lot of caregivers that, yeah, well, when am I going to find the time to take care of myself?

Right.

And I'm sure you've heard that a bazillion times. So what would you say to that, to the people that that honestly feel like they don't have time to think of themselves because it's such a demanding job to take care of somebody living with brain disease?

Number one would be get help. Don't try and do this all yourself, by yourself. Whether it's professional help or another family member or something like that, I would suggest that you can be so overwhelmed by stress, the cortisol in your body can— you could be swimming in a sea of cortisol. It literally can cause your own brain fog where you can't think right and can't feel right. And you'll— and in some cases you end up resenting that person that is ill.

Yes.

We don't want any of that. So my suggestion is, besides again, going to somebody like Lisa Skinner and reading her books, is to share the burden as much as you can. I know some of you out there are saying, I have nobody to share with. Sometimes you'd be surprised. There are some organizations, some, some of them religious organizations, some of them just organizations that do Alzheimer's. I'm sure you would know better than I do that can offer some suggestions and some help. Um, if a family member has a disadvantage If you're a professional who's a caregiver, when you punch out, you go to your own family and you can turn off that part to a point. Um, so you're kind of lucky. If you're a family member and that person lives with you, it is hard. It is very hard.

Um, there are respite organizations out there that do provide what we call respite respite services. So please take the time to check into those. You can Google them in your, in your area, in your hometown. There are organizations. You have to pay a fee to have somebody come in and kind of give you a break. You could do it on an overnight basis. You can do it on an hourly basis, but they do exist. So if you're feeling like you just, you know, don't know who to turn to, where to turn, there are respite services out there. So if you weren't aware of that, then please look into it because it can make all the difference in the world for your, your well-being and your health as a caregiver, your family member who has kind of been saddled with all the responsibility of caring for your loved one living with dementia.

And take moments to alleviate your stress too. If you go to AIS, we have different methods of breathing and things like that. It takes no time, no special equipment and things like that, but it can de-escalate your stress levels bring them down at least a little bit for the moment. You need to do things like that. I know people hesitate to meditate and things like that. I was one of them until I tried it. And, you know, you got to find something that works for you, something that you enjoy doing, and be also in the moment when you enjoy doing something as well. If you're going to help somebody, it is important that you're healthy and that you're feeling good.

There is definitely hope for everybody out there through this dilemma. It's not completely doom and gloom. I have actually seen such positive outcomes for everybody involved being able to provide meaningful life to a caregiver, to a family member, to the person who lives with dementia. It is possible. And I know that for a lot of you, it might be easier said than done, but it is possible. So I want to at least leave you with some hope in that. And please go to Will's website. Maybe there's some, um, information on there that could make a difference for you in this situation. You want to give us that website again, Will?

Sure, it's stress.org. It's the American Institute of Stress. We have lots of resources. You can even become a member. We encourage you to. We need your help. But we have a lot of free resources for people, a lot of stress management tools and techniques, and something that you can find many, many articles. And we do— I like— Lisa and I have done a podcast speaking about issues just as this. The reason we do that is to do exactly what Lisa Skinner Skinner said, to let you know that there is hope, that you do come out on the other side. And, you know, that you can be well through all of this.

Yeah. For a lot of people that, that seems like an impossibility. I read posts in dementia groups where people just feel like giving up and they don't feel like there's any hope, but trust us, there is. And Will has an excellent, excellent resource for all of you out there who are going through this to maybe help make your world a little easier to cope with during this situation. And you will come out, um, on the other side. Uh, so hang in there. Will, before we say goodbye to our listeners, is there anything else that you would like to share with them, maybe in the capacity of one more piece of advice that you wish you had known when you first started your dementia journey with your in-laws that would have saved you a lot of, um, stress that you finally discovered, and it's like, oh, I wish I had known this before. I would have saved myself a lot, a lot of—

you know what, I would— the only thing I would say, because it's— you're obviously not in control, the only thing that you are in control of is that knowledge is power.

Yes.

So know as much as you can before— what— as soon as you find out that this is happening, prepare, prepare, prepare, prepare, prepare a place for them to live, prepare a place, someone to take over their finances, prepare for someone to make the health decisions, prepare for how they get fed, for everything that you can think of. Make a list. Go shoot. Yeah, I'm a, I'm a list kind of guy. Make a list, work your list. As much as you can prepare, that'll alleviate a lot of stress.

I couldn't have said it better, but I want to just say thank you so, so much for coming today and sharing all your wonderful thoughts and experiences with us. I'm sure that you— I mean, I have absolutely no doubt that you have helped a lot of people today.

Well, thank you so much for having me on. It's truly a pleasure once again to speak to you. Was a pleasure last time as well. And I'm happy to hear you say that. I hope we've given some information to that helps some people.

Oh, I have no doubt. So thanks again for sharing part of your day with us today. This will conclude this episode of The Truth Lies and Alzheimer's Show. I'm Lisa Skinner, your host. But as always, I will be back next week with another new episode for all of you, and I hope and pray that you have a happy and healthy week between now and when we come back next week for that new episode. So take care for now. Bye-bye.

Thank you for listening to Truth, Lies Alzheimer's. We hope you found something in today's episode that helps. We understand that caring for a loved one with dementia can be the challenge of a lifetime, but you don't have to do it alone. If you're ready for exclusive access to even more great content and resources, head on over to Facebook and join Lisa Skinner Skinner's Minding Dementia support group. We're a community of like-minded caregivers, and we're here to help.