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

Lisa Skinner: 00:00:01

Lisa, hi everybody, and welcome to another New episode of the truth lies and Alzheimer 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 and 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 join 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 A I 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 dialogs 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 of the stress that accompanies having loved ones living with Alzheimer's disease and related dementia and 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,

Lisa Skinner: 00:04:00

Mr. William C. Heckman: first of all, Lisa, 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 and family members, who are dealing with over. 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 you pretty much have that feeling of helplessness and being out of control. Did you feel

Lisa Skinner: 00:05:37

that way when you learned that your both your mother in law and your father in law were diagnosed with dementia. You know, I protect your family. It

Lisa Skinner: 00:05:50

Mr. William C. Heckman: did in a in a very big way. I mean, it wasn't expected. 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 the situation was one that caused the most stresses our plain ignorance or 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 a big impact on my mental health and my emotional health, and also I was very close with my father in law as nice to am with my mother in law. So it is, it is, it does have the very impact on your family, especially if you're not prepared, if you're not educated about it. So

Lisa Skinner: 00:07:06

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 if 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 a 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, right? So is that kind of a fair statement to Yeah,

Lisa Skinner: 00:08:07

Mr. William C. Heckman: yeah, it is. You're very reactive, because you don't know what's going to happen and and as things come up, you need to do something immediately. 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 financial things, the you become the decision maker for the person with Alzheimer's, if you're a family member, if you're lucky enough, you can, you can share those responsibilities with another sibling, or something like that. But yeah, you're going to have to react and and do it rather quickly, because they're going to need help. They're going to need assistance.

Lisa Skinner: 00:08:58

And 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? 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

Lisa Skinner: 00:10:19

Mr. William C. Heckman: did, you know, more so with my my mother in law, than my father in law, my father in law, mother in law, 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, yeah, unique position. You don't want to intrude too much, but you want to help 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.

Lisa Skinner: 00:11:11

Well, let me ask you this, if you don't mind Sure. 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 you are son in law, right?

Lisa Skinner: 00:11:43

Mr. William C. Heckman: Happy to say, we did not. We came together very quickly, and all had the same purpose, and that is, she had to be safe and happy and being be in a good place. And my wife and her brother both did their homework, as I did on a side, to help them with some research. And we researched what to do, what is going to be needed, what the future look like, what is immediately needed to be done, and what is going to be done the next step, and possibly to step after that. So 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 an independent living. And then the campus has also memory care and assisted living if she needs to move. As it progressed, we were able to get more and more assistance for her, like now she has someone who comes in daily, 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 a 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. It 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 improve 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.

Lisa Skinner: 00:13:52

So can you share with us some of the situations that came up that 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 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.

Lisa Skinner: 00:14:41

Mr. William C. Heckman: I, you know, we were surprised by a couple of things, and I later now, of course, we find out that they're not unusual. People diagnosed with Alzheimer's, a common problem that they have is paranoia, yeah. And so 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.

Lisa Skinner: 00:15:33

My grandmother did the same exact thing.

Lisa Skinner: 00:15:36

Mr. William C. Heckman: So so we didn't realize that was going to happen, and that was that was disturbing to me, 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 a 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, don't argue, no, don't, don't, don't correct. Just they're living in the moment. Yes, I mean, the moment, that's five minutes,

Lisa Skinner: 00:16:37

and she absolutely, 1,000% believed that somebody was going to break into her apartment, even though she was on the third floor,

Lisa Skinner: 00:16:45

Mr. William C. Heckman: yes, and she thought that now she lives in a place where the people that run the place do have the keys. They would never come in without. 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 this it's for safety protocol. That's the only time that I've heard of the 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. That was one of the things. And you'll also note in the person that you're dealing with, who else Alzheimer's, that 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. She couldn't drive anymore. There was, there's no possible way. But we didn't take it personally. Don't take anything personally. It is not personal. 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 our 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, celebrate that with them. Well,

Lisa Skinner: 00:18:47

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, what a good day during the visit, and it will last a while, if 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. Firsthand,

Lisa Skinner: 00:20:01

Mr. William C. Heckman: yes, and it's 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 experienced 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 your your stress will be very catching. Negative stress is contagious. Yeah,

Lisa Skinner: 00:20:47

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 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, 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 knowledge, I'll

Lisa Skinner: 00:23:25

Mr. William C. Heckman: 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 she has a two bedroom apartment, so we stay 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. Oh. I said, Don't you're going to hurt your back doing that. I'll do it. And so I joined her reality, and still was her, her friend and son, along, 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 that. No, we took care of it, and then moved on to the next thing, which was more pleasant. And I thought we do try to do things like that, you know, solving little problems like that, and maybe going on, if the person 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 it's still intact. Yes and true, and so you can share those memories so they feel more normal being able to share 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 have to join in with that and take part in that moment. That's why some of the

Lisa Skinner: 00:25:18

things that you've heard from friends that are experiences, or have experience that you'd like to share with

Lisa Skinner: 00:25:32

Mr. William C. Heckman: 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 they're in laws or their mothers or fathers are going through Alzheimer's, and they're so affected by it that it caused severe depression in them. And

Lisa Skinner: 00:26:07

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

Lisa Skinner: 00:26:21

Mr. William C. Heckman: I mean, everyone is different. So every, every, every body 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 their loved one go through this, and absolutely it. They're distraught, 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, and I've seen that happen as well, and I don't over again. It's heartbreaking. It's, I don't know what to tell them. You certainly can't help the person with dementia or Alzheimer's, and 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.

Lisa Skinner: 00:27:41

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,

Lisa Skinner: 00:28:12

Mr. William C. Heckman: number one on my list is listen to Lisa Skinner'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 guys been doing it for three 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 just a part of life. It is what it is. I hate to be a cliche, 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 gotta take care of yourself first 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. 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, an 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 and 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 Alzheimer 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, don't let it overwhelm or take over your life. You that person, especially if they have severe Alzheimer's, tomorrow, is not going to remember that bad day, but you will, yes,

Lisa Skinner: 00:31:34

you bring up so many just exceptional points to 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

Lisa Skinner: 00:32:41

Mr. William C. Heckman: one would be, get help, don't, don't try and do this all yourself, by yourself, whether it's professional help or or or another family member or something like that. I would suggest that you can be so overwhelmed by stress that cortisol in your body can you could be swimming in a sieve cortisol. It literally can cause your own brain fog where you can't think right and can't feel right and can't you. 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 to share the burden as 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 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. 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.

Lisa Skinner: 00:34:20

There are respite organizations out there that do provide what we call 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, you're better a family member who has kind of been saddled with all the responsibility of caring for your loved one living with dementia and

Lisa Skinner: 00:35:22

Mr. William C. Heckman: take a moments to to alleviate the stress too. If you go to AIS, we have, 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 gotta find something that works for you, something that you enjoy doing and be also in the moment when you enjoy doing something as well. Yeah, if you're going to help somebody, it is important that you're healthy and that you're feeling good.

Lisa Skinner: 00:36:17

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 a meaningful life to a caregiver, to a family member, to the person who lives with dementia. It is possible, and I know that to 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 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

Lisa Skinner: 00:37:13

Mr. William C. Heckman: 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, like Lisa and I have done podcasts speaking about issues just as this. The reason we do that is to do exactly what Lisa 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.

Lisa Skinner: 00:38:00

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 on the other side, so Hang in there well 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 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

Lisa Skinner: 00:39:25

Mr. William C. Heckman: you know what I the only thing I would say, because it's you obviously not in control. The only thing that you are in control of is that knowledge is power. Yes, know as much as you can before, what, what? Soon as you find out that this is happening. Prepare, prepare, prepare. Prepare a place for them to live. Prepare play 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. Go 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.

Lisa Skinner: 00:40:13

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

Lisa Skinner: 00:40:33

Mr. William C. Heckman: 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.

Lisa Skinner: 00:40:46

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 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. You.