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Tracey S. Lawrence is a woman of many talents. For most of her adult life, she served clients as a graphic artist. That changed when her parents became ill. Tracey’s journey as a serial caregiver, to her husband (twice: first in 1987, then in 2017), her father (who died in 2004) and her mother (who died in 2015) gives her a unique perspective on life and death. She is quoted as saying “That which does not kill me makes me stronger.”
The best-selling author of the ground-breaking book, “Dementia Sucks: A Caregiver’s Journey – With Lessons Learned,” Tracey shares her discoveries, insights and humor with the world, encouraging people to wake up to the harsh realities of life before they become undeniable. Laughter, compassion and acceptance are part of the recipe required to plan for and survive the current climate of healthcare, illness and the overwhelming nature of it all.
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Tracey S. Lawrence is the founder of Grand Family Planning LLC and author of the ground-break book “Dementia Sucks.” Having been the primary caregiver to two parents who succumbed to dementia, Tracey has a unique perspective on the issues surrounding caregiving and the challenges of staying healthy and productive under extreme pressure. Realizing that millions would be facing the same struggles she had, she conceived of a team approach to coaching families through life transitions and health crises. Tracey’s commitment to raising awareness of the growing family caregiving epidemic drives her business and her professional speaking and training programs.
Welcome to the Community Education Series hosted by The Recovery Village and Advanced Recovery Systems. Jordan Katz here, clinical outreach specialist and licensed social worker with The Recovery Village Cherry Hill at Cooper. Here in South Jersey, we offer the full continuum of care under one roof, including detox, short-term res, PHP and IOP programs.
Advanced Recovery Systems themselves is a national company offering substance use treatment as well as co-occurring mental health treatment, as for adults and adolescents with specialty tracks in eating disorders and professionals. So, today we are so excited to have Tracey Lawrence speak for us.
Tracey S. Lawrence is a woman of many talents. For most of her adult life, she served clients as a graphic artist. That changed when her parents became ill. Tracey’s journey as a serial caregiver to her husband twice, first in 1987, and then in 2017, her father who died in 2004 and her mother who died in 2015 with a unique perspective on life and death. She is quoted as saying “That which does not kill me, makes me stronger.”
The bestselling author of the groundbreaking book, “Dementia Sucks: A Caregiver’s Journey – With Lessons Learned”, Tracey shares her discoveries, insights, and humor with the world, encouraging people to wake up to the harsh realities of life before they become undeniable.
Okay. Laughter, compassion, and acceptance are part of the recipe required to plan for and survive the current climate of healthcare illness and the overwhelming nature of it all. Welcome, Tracey. We are so happy to have you here.
Thank you so much, Jordan. It’s great to be here today. Well, welcome, everybody.
So, I’m very glad that you were able to make it to the talk. I’m wondering, how many of you here today have aging parents, if you could just say ‘me’ in the chat, that would be very helpful to me. If you don’t know how to access the chat, there should be a little button at the bottom of your Zoom window that says chat and you can click on it, and it should open up a window that you can just type it in. Okay. Well, I see Laura has aging parents. Anyone else? Okay. So, one of the reasons that I was excited about this opportunity to talk to you folks today.
Let’s see aging parents and work with the aging IDD population. Hmm. I don’t know what the IDD population is. Can somebody tell me what that is? I think you were muted. Jordan, did you try and say something? I think IDD is intellectually developmentally disabled. Oh, thank you. Okay. And, let’s see. Oh, Debbie’s past, but you have your boyfriends. Aha. I’m not aging, but my mother is newly disabled. Thank you, Savannah. Intellectual and developmental disabilities. Ah, okay. Yes. Thank you.
Alright. So, I wanted to kind of focus the talk today on why it’s a great opportunity to be able to, leverage, stay in rehab. When we have loved ones who are aging or who are in a situation where they need more help from their children or other family members. At this particular time in our history, we also have a lot of people who have relatives who were before last March, very independent, very capable, fiercely independent, and really didn’t need any help from their loved ones. But when COVID and the pandemic came around, a lot of people who were formerly in an independent position were now feeling very vulnerable, frightened, nervous. And so those people are now in a situation where they’re kind of giving you a preview of what caregiving might be like because now they’re relying more heavily on their adult children and families, the numbers.
So, I want to ask a question to those of you who have aging loved ones: do you know if those people have wills or advanced directives? Do you know their doctors and their medications? Do you know where their important stuff is and do you know what their desires are for the future? And have those loved ones been resistant to having discussions about their end-of-life desires? So the goal of this talk is to recognize what’s going on, what’s happening now; how to leverage the situation that you’re in order to facilitate positive action and to begin a process that can conceivably help to save your life. I like to introduce people to my life and what it is that motivates me, and that makes me an expert in this particular topic.
These are my parents, Herb and Ross. I’m particularly fond of this picture when my parents were kind of in their heyday. They were living ‘La Vida loca’. My dad was a very smart, sharp, funny guy, and he was in the tavern business. He owned bars and drank for a living, which was an interesting career choice, but it worked for him. He smoked, he drank, he had a great appetite and at this point in their lives in 1983, my parents were in their fifties and they were enjoying life.
In 2002, my folks, when this picture was taken in the middle, they were living in their apartment in Florida and enjoying their lives together, and I had no idea at that point that my father was starting to suffer from a number of chronic illnesses. By 2003, when this photo was taken, my father had been diagnosed with vascular dementia or what, well, he was actually misdiagnosed with a different type of dementia, but he had vascular dementia where his short-term memory was completely gone. He could not remember, from one minute to the next, any new information that he received, and it was extremely heartbreaking and difficult. By July of 2004, my father died of congestive heart failure and he was, it had been a very difficult part of the journey, but it was an eye-opener for me because I realized how many things about my parents’ lives I didn’t know. And I was having to dive in and get to know certain things that most children really don’t want to know about their parents.
After my father passed away in 2004, my parents came up to New Jersey to live here while they were going through that situation. Once my father passed away, my mother wanted to go back to Florida. I helped her with that, but my husband and I went into a new phase where we were spending a lot of time in Florida. We live in Northern New Jersey and we were visiting mom frequently to see how she was doing, make sure that she had all the things that she needed, and, you know, check to make sure that everything was okay, and that she was safe.
In 2009, I brought my mom to live with us for a spell because she needed to have surgery, and I wanted to oversee that aspect of her care, and it was easier to do it up here in New Jersey. At that time she got through that fine and went back to Florida, but shortly after that my mother’s doctors agreed that it was not safe for her to live by herself any longer. So, I offered her the option to come live with my husband and me, and she did. And over the course of that next year, taking care of her at home became increasingly difficult because she had a psychotic break. She developed dementia, she was also experiencing certain episodes where she was seeing a lot of things that we were not seeing, and she was also falling a lot. So it seemed like the smarter option was to have her live in assisted accommodation and that there were a number of different moves after that.
But, during the time that I was taking care of my mother, I was journaling to save my sanity and I had a blog called Tracey’s caregiver blog, which, over time formed the basis of the manuscript for my book, “Dementia Sucks”. That’s the basis right there. It’s not just a story, it’s also a chronicle of what my caregiving journey was like, but it also has some really good insight and advice into how to deal with someone who is going through the kinds of crises that we experienced while my mom’s condition got worse.
Now here’s an important question. Are you aware that 50% of caregivers to people with dementia die before the person they’re caring for? This is something that I have run into myself because I live in a world of caregivers and a number of people who I came to associate with, during my journey as a caregiver perished while they were taking care of somebody else. These are people in their fifties and sixties. The further I got into this niche and understanding what the challenges were, I found that a lot of people, and then the number of 50% is pretty consistent.
If you go to caregiver.org, caregiver health, they have those statistics listed and, for spousal caregivers where one spouse is taking care of another spouse who has dementia, their danger of them perishing before their loved one is 63%. So those are some very big numbers and I am compelled to talk to people about caregiving and help them to understand how dangerous caregiving can be. I encourage people to protect themselves when they’re in a caregiving circumstance because we don’t know who may actually develop dementia. When someone is cognitively intact, and we’re in a position where we might have to be their caregiver, it’s a great time to actually have some conversations with them before dementia has a chance to impede the progress.
Part two, why parents turn on us. I talk about this because when I first started helping. Before my parents got sick, I actually helped with my in-laws and I noticed something interesting. When I was helping my mother-in-law, she was very grateful when I first started to intervene on her behalf, but then sometimes she would get really nasty with me, and it came as a shock because, you know, hey, I’m being a good kid and helping her out, why would she turn on me? But, as this happened with my parents as well, it started to become obvious that this was a pattern and it’s a very scary and frustrating pattern because you think, Oh, I’m taking time out of my life and everything that I do to help my loved one with their situation, and they’re being mean to me. Why is that?
Well, here’s a little bit of insight that might help you if you’re in that position. The thing you have to realize is that no matter how old or accomplished you may be, you are still your parents’ baby. And they know they’re getting older and that’s kind of scary for most people. When you start to realize that you’re not always going to be able to function at the level you’re used to functioning at, it’s a scary prospect. And when you start asking them questions, you are adding to their terror now, and now you’re in a position where you have power that they once had and they’re there.
They recognize that they’re losing their power. There, they might be resentful and they want to have control of their lives. They want it back. So even though you’re in a position where you can help them and you’re willing to help them, even though they may be grateful at some level, they may also be resentful.
So, here’s what I, if there’s nothing else that you can come away with today, if you’re in a position where you need to be able to help loved ones: there are questions you need to ask them and it’s very uncomfortable. I will tell you, it’s very human and very common to be uncomfortable asking these questions.
And if you’re fortunate, like I was, your parents will have taken some steps already. But because it’s human nature to procrastinate and to deny that there may be a problem more often than not, they may not have done anything or may not have done enough and they might get nasty if you question them.
So it’s a good idea to prepare for objections. So, when you finally summon the strength. As you resolve to actually have a conversation with your folks, you want to approach them gently. If they give you pushback, and I can almost guarantee that they will, okay. The moment you ask a loved one, “Gee, mom, do you have a will?” “Well, why do you want to know?” And you know, they will get defensive, it’s a very common thing. You want to step back, because it’s our inclination, especially in today’s society- how many people here have to-do lists? Does anybody here keep a to-do list, things that they need to do to keep track of? Well, I know I do, and it’s a way that we have of being able to keep on top of things. Yes. But the thing that I tell a lot of my clients is that parents are not an action item on a to-do list, you know? You can’t expect to just check it off and move away. This is a process.
Okay. So what you want to do is you want to retreat. Okay. Leave them some room and let the emotion calm down. But you want to make sure you come back because it’s very common for people to say, “Oh, well that was a bad reaction, well at least I tried. Okay, bye.” You gotta be ready to come back. and one of the things that you can do to cool down the situation is to find stories.
So what am I talking about? We’ve all heard stories in the media of, say famous people. Celebrities who’ve died without wills. Those are really great stories to pull out and talk about, especially if it’s a celebrity that your loved ones know and like, or they have heard about because when you have those stories at the ready, you can start a conversation in a way that will not bother them, that will not give them anxiety. In fact, most people like gossip, right? It’s fun to talk about other people, right? Especially if they’re celebrities. So, if you have these stories at the ready. One of my favorites is Aretha Franklin, the queen of soul.
Remember her, she died with millions of dollars and when she first died, it was thought that she had no wills. And over time, her family members uncovered handwritten wills, she had like two or three of them. One of them was found in the sofa cushions. Debbie, I’ve tried to approach my adult boys and show them a binder I have with all the important documents I have. Okay. Also: making them. No one wants to talk about it yet, “I’m only 63.” Yeah, Debbie, you know, I hear ya. And, I get that, it is really difficult to have those conversations, but you know what you can do, the same kind of thing.
You can look for stories of people in similar situations and perhaps engage them in those kinds of conversations as well because it’s so important to have these conversations and for your loved ones to know what your desires are, to know what you’re looking to have happen over time. So, thank you so much for sharing that, I really do appreciate it.
One of the unique features of people who go to rehab is a particularly great opportunity. Should a loved one of yours go to rehab and have a positive outcome: they get sick, they rehabilitate, they go home. Okay. That’s a really great time to have a conversation because a lot of people in those situations, their children and their loved ones who have helped them may find that they didn’t have all their documentation. They didn’t have everything that they needed at that time, and that it’s a good time to have those conversations.
So look, you got lucky this time, there was an issue. You’re okay now. Okay. Let’s schedule time to have this conversation where you talk about these really important topics so that you can take care of them, of that list of items. Why? Well, they’re capable while they’re able, while they can participate and have a productive conversation, and so you know, by having that conversation after a stint in rehab, you can diffuse their denial and actually take it to the next step. Now it may well be that they don’t go to rehab where they don’t have that kind of situation, or even after having a health issue that they recover from, they may still be resistant.
So here’s another idea that you can use: bring in another grown-up. Alright. What does that mean? Well, if a loved one has someone in their life, okay, who’s not a child or not someone who was a child of theirs. Say I’m a golfing buddy or a pastor or, you know, some official in a house of worship, someone they respect. Those are great people to bring into your team because you can have a conversation with that grown-up person outside of the attention span of your loved one and talk to them about your concerns. Okay.
You can say to their pastor or to their associate, Hey, look, you know, I tried to talk to dad about whether or not he has a will and he gave me the stiff arm. I want to make sure that in the event that my parent needs me, that we have the paperwork in place that ensures that I can help to speak for them, that we can make sure that their wishes are honored. Will you help? And by having that conversation with that person, you can encourage them to have that conversation with your parents or your family member, and to kind of move the needle on the conversation.
By hearing it from someone who is not a child, by someone who was more of a peer and maybe somebody who’s more of an authority figure, then the likelihood that you will be able to have a productive conversation, it’s much higher. So with persistence, you should be able to move forward.
Alright. And in anticipation of that, you want to have your questions prepared. It’s important to know what questions to ask, because if they’re open to having the conversation, you don’t want to be like, “Oh, okay, what do I do now?” Right? You want to be able to say, “Okay mom, do you have a will mom? Where’s this stuff? Where’s that stuff? Where’s the other thing?” So by having a list before you actually have the conversation, then you’ll be ready to slide into it and have that conversation and be productive.
You should also have an appropriate attorney to see. Why do I say, appropriate attorney? Aren’t all lawyers the same? It’s really important when talking about this stuff to work with an estate planning attorney or an elder law attorney, or some kind of an attorney that is familiar with the kind of law and stage of life you’re talking about. There are attorneys, for instance, if you have a child who has special needs and as they grow, maybe you need to have guardianship, that sort of thing. There are aspects of those kinds of cases where you really need to have the right kind of attorney. So be ready, have the right kind of attorney ready to go and see.
So if there’s the willingness to have a conversation, then you’ll be able to go to that attorney, make an appointment and go, because you don’t want to wait. Because the longer you wait, the likelihood that they’ll change their minds and say, “You know, yeah, well, it’s snowing, I don’t feel like going, whatever.” You want to make sure that you’re ready with your questions with your attorney and get ready to go so that you don’t give them an out. Okay.
While you’re at it, it’s also a good idea to start doing your own estate planning, because as long as you’re talking to an attorney about estate planning for a loved one, then while you’ve got them and get them engaged, it’s a good idea to do stuff for yourself, because even though you may not be at a stage of life where you think that estate planning is necessary, bare minimum, everyone in this country, over the age of 18 needs to appoint an advocate. That’s extremely important. We still have HIPAA laws in this country, and those laws say that if you’re 18 or over, then you are responsible for your own healthcare decisions, and no one else is able to ask for your information without your permission.
So, anybody over the age of 18 in the United States of America should have something that appoints another human being as their advocate in the event that something happens, that person is available to be able to speak for you if you cannot speak for yourself or, needs to get involved. Having those conversations at the same time will likely save money.
You know, attorneys are more open to working with families and once they know you, it’s easier for them to do your paperwork. You’ll be protecting your family and yourself and being more efficient. By the way, I’m not an attorney. Okay. So, don’t take any of this as any kind of substitute for legal advice. I’m just a very knowledgeable person, but I, myself, I’m not an attorney. I do work with them though. And they’re good people to know.
Okay. So guys, do you have any questions? I’m happy to take your questions. Also, if you like, please visit my website, Traceyslawrence.com. Through that website, you can access information about my book. I also have an online course that you can take at your leisure. It’s called the family care survival course. It’s on udemy.com and it’s rather inexpensive. It is two hours of video content over five sessions. There’s lots of great freebies included.
So, it’s a really great way to get yourself oriented to what it takes to provide care to family members. And it includes all those really important questions that you need to ask, as well as thought-provoking articles and other really valuable things that will help you to understand the importance of being proactive and knowing what’s needed in order to be able to take care of a loved one and take care of yourself, which is extremely important.
I also offer a free, complimentary consultation, if anyone would like to just speak about what’s going on in your lives and look for ideas for ways to handle things with your own families. All I ask is that you fill out a simple form so that we can structure our talk, but it’s free, no-obligation. I’m happy to help people to be able to cope with things in their lives and take better care of themselves. Cause I know what caregiving is about, and I know that caregivers have a really sad tendency to neglect their own care. So, it’s my goal to be able to help people to take better care of themselves.
Okay. So, awesome. Thank you, Tracey. That was great. Very informative. So I’d love having you as a presenter today.
Thank you for watching this video. We hope you enjoyed the presentation.