Speaker 1: 0:00

Have you ever had that feeling? You know the one when something just feels off with your parents. Maybe it's small at first a missed appointment, an unopened stack of mail or just a shift in energy. Deep down, you know they might need more help than they're letting on. That's why I asked Adam Lampert, ceo of Cambridge Caregivers, to join me today. Adam, what are the signs families should be watching for?

Speaker 2: 0:22

You know, the signs are often the little things like mom forgetting her medications or dad struggling with routines that used to be second nature. It can be hard to accept, but these are the signs that become your invitation to step in with love and compassion. At Cambridge, we help families through that transition with in-home care that's discreet, respectful and tailored to each person's needs, because our goal is to preserve independence while providing just the right amount of the support that your family needs.

Speaker 1: 0:50

And I love that Cambridge doesn't treat this like a transaction. It's a relationship. You're matching caregivers who truly care with families who need peace of mind and expect the best. If your gut is telling you it's time, don't wait for a crisis. Visit cambridgecaregiverscom or call 214-649-9922. That's 214-649-9922. Cambridge Caregivers trusted in-home care right here in the neighborhood neighborhood. Welcome to the Bubble Lounge. I'm Martha Jackson.

Speaker 1: 1:35

Today's episode was inspired by a recent conversation I had with the team at Cambridge Caregivers. As we were talking about the emotional weight so many families carry while caring for an aging parent, especially those dealing with dementia, it reminded me just how common and complicated this journey really is. This conversation led me to the work of today's guest, josh Hickman, whose new book Forgetting the Trials and Tribulations of Caregiving for a Difficult Parent with Dementia offers a raw and deeply personal look at what happens when love, memory and responsibility collide. A lot of us are going through this or will go through it at some point, and in the park cities where so many of us are navigating life between raising kids and caring for parents, this topic couldn't be more relevant. So we're taking time to explore Josh's story and the honest, sometimes messy reality behind caregiving for someone who isn't always easy to love. So stay tuned, as this is a conversation. Many of us need to hear Josh. Welcome to the show.

Speaker 3: 2:32

Hi, thanks for having me.

Speaker 1: 2:33

Well, this is your second time to join us, so welcome back. You've been pretty busy since we last talked. Tell us what's been going on.

Speaker 3: 2:40

Yeah, I wrote a book. For one thing, I've been painting and doing my usual stuff, but I took several months off and wrote a book that I've been kind of waiting to write for a while and that took me a little while, and it Triumphs of Caregiving for a Difficult Parent with Dementia.

Speaker 1: 2:58

And I talked to a lot of you out there who are treating a parent with Alzheimer's or dementia, so I really thought that this would be a relevant and very important conversation to have with you all. So this book it was a very vulnerable and honest account of what you went through while caring with your mother. What made you decide to write the book?

Speaker 3: 3:29

Well, you know, I had lived through over three years of being her solo caregiver and three years and three months, and she passed away about a year and a half ago and I figured I would probably write a book about it and I kind of wanted to write at the beginning, after she passed away, but I decided against it because I was still too kind of conflicted and emotional and angry angry at myself, angry at her, angry at her condition and I had to wait a while and about a year afterwards it started to come back to me and I thought maybe now enough time has passed and I should get this down. I think I would have written it whether or not it was published.

Speaker 3: 4:16

I think I'm a writer, so it's kind of therapeutic to write. I figured I would do it anyway, and then it of course crossed my mind to write. I figured I would do it anyway, and then it of course crossed my mind Well, I should probably publish this, because there are so many out there probably more than people know who were in the similar situation as mine, who did not have a great relationship with their parents or their loved ones, and there aren't that many books about that particular situation, and I just wanted to help people in that situation because I can remember when I was in it there wasn't a whole lot to read that really addressed those issues. There wasn't a lot of help out there, and so I thought if this can help somebody else, I need to get it out there.

Speaker 1: 5:00

Well, I want to go back. You said a keyword that caught my attention. You said you had a lot of anger towards yourself, towards her, towards the situation, and I think a lot of people probably kind of glaze over that, or maybe they think that's not normal, but I would imagine it's extremely normal. Can you talk to us more about that?

Speaker 3: 5:18

Yeah, I mean it's. You know, part of the crux of this book is it was kind of an unexpected situation, although that sounds kind of stupid now, but at the time I did not foresee this happening at all. I didn't know she had dementia. My father had passed away a few years earlier, which was kind of shocking, and she was left alone. And she was left alone. He had made surprisingly for me, had made no real plan for her. What was going to happen after he passed away was very, very unlike him. He was a military guy, he was a lawyer, he was a planner and there was just nothing. She was just out there floating around by herself and I ended up, through a series of little life circumstances and surprises, I ended up, uh, taking care of her and, uh, it was just a mess in the beginning and that's kind of.

Speaker 3: 6:16

One of the things I wanted to address is how much of a mess this can be and how unprepared and unexpected you know it all is and, um, you have to do. You know, if you're going to jump into this fight, you have to deal with it and it's very hard. I mean, I guess you can always say no, I don't want to. You know I don't want to participate in this, but ultimately I said yeah. Ultimately I said yeah, I need to do this. This is what needs to happen, and you know how that plays out, and it's often not how you would like it to. You know, happen it's very difficult.

Speaker 1: 6:55

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Speaker 3: 7:58

Oh yeah.

Speaker 1: 8:05

And often it's too late because you're scrambling to educate yourself, to find out you know what has caused it, what we have to look forward to, what's coming, what the future looks like, and you just have to really work hard to educate yourself and figure out some really tough choices, right?

Speaker 3: 8:16

Yeah, yeah, I was totally unprepared and there was a lot of learning to do and there's, you know again, things you don't expect. My mother had probably been suffering from cognitive decline and wild dementia for years and I wasn't fully aware of that. She had kind of a weird difficult personality, she was a little crazy, and so it was very hard in the beginning to think, well, is this behavior normal or is she is something happening? I mean, I know she's older, she was elderly, you know she was in her eighties, so is this her brain changing in normal ways or is this something, that there's something wrong with her? And you know we didn't get an official diet and she also resisted any kind of diagnosis. So we didn't get a diagnosis for about a year, I think a year or a year and a half. After I started taking care of her, I finally was able to get her to a doctor, a neurologist, who finally said all of your symptoms are consistent with dementia, which my mother totally rejected.

Speaker 3: 9:22

My mother went to her grave thinking that she did not have dementia or Alzheimer's and uh. So yeah, it's difficult and there's a lot of learning. You know steep learning curve and um, it's, it's tough, but I mean, one of the things that made it sort of one of the cruxes of the book is that there's a lot of information in books out there about taking care of your parents, and a lot of them are your family members with dementia and a lot of them are happy, loving, stable relationships is what most of them are, and that was not the case with my mother and myself. We had a terrible relationship for decades, and so it's a totally different story when you're dealing with that and reconciling with them as best you can on top of solo caregiving. I had never read anything like it. It was part of the reason I wanted to write it, because there was nothing like this to read when I was in the middle of it. I wish that there had been.

Speaker 1: 10:23

Right.

Speaker 3: 10:24

There wasn't.

Speaker 1: 10:29

Well, that was a question I was going to ask is, before we started talking, I was going to say the title of it. It's very layered and emotional, and how did you land on the title?

Speaker 3: 10:34

Yeah, I just didn't want it to sound particularly generic or you know that this was a entirely happy book, because it's not, but I mean it, happy ending, I guess you could say, but um, it's uh, yeah, I, I was really intent on kind of uncovering the complications that you can have with your relationships with your parents. Specifically could be any family member, it could be an uncle or it could be whatever, but, um, whoever you're caregiving for, uh, she, you know I go a lot into her personality and my personality, I guess, in the book and so you can try to understand I think a lot of people will identify with it. I recently did a uh, uh, alzheimer's podcast on YouTube. Um, while I was writing book and after it came out, people were just coming out of the woodwork to me saying this sounds exactly like me and my mother, or me and my father, or I'm going through the exact same thing right now, or I'm about to go through the exact same thing, and so that sort of told me that I was hitting on a nerve.

Speaker 3: 11:42

I mean, I think particularly with people of my generation, sort of Gen X type people who are coming into this right now not all of our relationships with our parents are okay, or they're a little difficult, or they're not even speaking with them or you know, and so it's definitely a factor. She was kind of a really difficult person and because of her personality, unfortunately she pushed a lot of people away. She didn't have really any close friends by the time she was in her 80s and so there was nobody there, you know, to take care of her or keep an eye on her or anything, so everything fell just on you.

Speaker 3: 12:32

Yeah, it totally did. It was 100% on me and I did it basically by myself the entire time, and I think that's more common than you would think. You know. People think, oh, entire time, and I think that's more common than you would think, you know. People think, oh, these families come together and there's a support network, and you know, and there's a lot of instances, like mine, where that just you would hope for that and you wish for that, but that's just not how it works out.

Speaker 1: 12:57

Not reality in many cases.

Speaker 3: 12:59

No, it's not.

Speaker 1: 13:01

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Speaker 1: 13:08

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Speaker 3: 14:08

how would you describe what it's like caring with a parent with dementia? It's very tough. It's the toughest thing I think I ever did, and I didn't even expect it wasn't physically that tough, but emotionally, psychologically, the isolation, the obligation of it, the having to be at home all the time, watching your personal life completely evaporate, was very, very tough, and it only gets tougher over time. It's tough in the beginning, but it's even tougher in some ways at the end. Things change. Fortunately for me, her personality got better. Near the end. She actually became a nicer person, which was kind of miraculous. After dealing with one person my whole life, she sort of became a different person. Near the end was much, much, much nicer, much more childlike. It was just incredible to watch. But while that's happening and that's getting easier, she's physically deteriorating and is more confused and started wandering and can't get to the bathroom on her own, and so that gets harder, even though some of the emotional aspects of it get easier for me, fortunately.

Speaker 1: 15:33

Now was she at your house, her house. Where was she?

Speaker 3: 15:36

I ended up as I say, due to a kind of catastrophic series of life circumstances which I also didn't see coming. Oh, it's a story in and of itself. I ended up moving in with her. I had moved back to Dallas from LA. I had lived in LA for 14 years. I had moved back about two years prior. My entire life completely fell apart very quickly about two years after I moved back here and I wound up living with her, and that was part of I knew she wasn't doing well, especially since my father had died. But I had no idea how badly she was doing until I was around all the time. And then I began to see, oh, this is much, much worse than I thought it was, and that's when it began to come to me that I might have to take care of her. You know, I don't, I don't think I should be leaving, and so we ended up living together. We moved to a bigger apartment and we ended up moving to a condo near the end, but we lived together for over three years, okay.

Speaker 1: 16:44

Okay, well, you've described her as pretty difficult. You had a difficult relationship, but then things changed and she became nicer in the end. How did that change your relationship with her?

Speaker 3: 16:56

Oh it was. You know, in a way it was godsend. It was as I say in the book. Had she dropped dead of a heart attack at like 58, I would have a totally different image of her. You know, I would just remember her as the difficult, trying, argumentative, critical mother that she was and in the end I got to see her change and become nice and sort of revert back to what was probably a younger, youthful version of herself, mentally, very polite and didn't ask for much, which was amazing because her whole life she asked for a lot you know, and all of a sudden she was just this kind of lovable old lady sitting on the couch and just kind of, you know, easy to deal with, and that totally changed my perspective.

Speaker 3: 17:45

I mean, I think there's I look back now and there's two different people, and I much more now look back on that later version of her and it's much easier to take. You know, I actually sort of relearned to take care of her and protect her and care for her and even pity her, which is something that, you know, I don't think I envisioned would happen, but it did. You know, it was a very humanizing experience.

Speaker 1: 18:16

Well, so we talked about just writing the book in general. I would imagine it was extremely therapeutic for you to be able to write about this and get it all out, and were there any parts that were particularly difficult to write about?

Speaker 3: 18:29

Yeah, you know it was therapeutic. Like I say, I really had an urge inside to get it out on paper. Once I started writing it came out sort of gushed out quickly. I wrote the first draft in about two months and of course it's all from memory. So you're sitting there picking apart your memory because it's not like you're taking notes the entire three years.

Speaker 1: 18:49

I was going to ask if you were documenting along the way, so you're literally going by memory.

Speaker 3: 18:53

You're going by memory, wow, and so you're making sure that you're remembering things, not forgetting things. There were things I forgot that I had to go back and put in. There were some things I took out because I thought they were a little too ugly, but, um, uh, yeah, and I think the most difficult part was writing about the circumstances of her death. That was difficult, um, and it was a tough part to write, it's a tough part to read, but, um, you know, it's funny because you can have all the time in the world to prepare for the end and yet somehow, when it comes and it, you know, it seems to have been coming for years. Of course, with this disease particularly, it's surprising and it takes you by surprise and you're not ready for it.

Speaker 3: 19:38

I would imagine, I would imagine, yeah, it was very surprising and I had a lot of guilt after she passed away. That was unexpected, I thought it would. You know she was in such bad shape near the end that I thought, well, you know, when the end comes, this will be a relief and I'll say, oh my God, I can't believe I made it. I made it through these years no-transcript.

Speaker 1: 20:26

You have any advice?

Speaker 3: 20:28

Yeah, you know, get more prepared than I was. If you have any inkling that this could be a possibility, start thinking about it. I did not do that and it was detrimental, it was just terrible. But start thinking about it ahead of time. As your parents are getting older, if you see any clues that there might be some cognitive decline, try to get them to be evaluated or try to get a better idea of what's going on. That was almost impossible for me to do. It eventually happened, but it took forever. Things would have gone much more smoothly had that happened earlier. And also kind of reassess what your relationship is with them. Try to think about what the future might look like. Are you prepared for this? Do you think you can get prepared for it?

Speaker 3: 21:17

Some people, of course, will make the decision no, I'm not going to do this. I'm just not up for it. I can't do it. I've got too much going on in my life. They're too impossible to deal with. And you know that's certainly valid. There are people who do that. But I was in a position, especially at the time, where that just seemed impossible. I didn't have much of a choice in my mind. I was like I've got to do this. I don't see a way around it. There is no one else, and so try to not be in that position. But sometimes, as I found out in life, unexpected things happen and you know, you just have to kind of roll with the punches.

Speaker 1: 21:58

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Speaker 1: 22:45

Stuart and Arango are conveniently located at Northwest Highway in Hillcrest. To learn more about them or book your appointment, visit sasurgeonscom. That's sasurgeonscom. Well, what do you wish that more people knew about? Caregivers? Again, this is a situation that you don't know how you're going to take care of somebody until you're in that situation, but just to kind of prepare people ahead of time.

Speaker 3: 23:10

Yeah, it's a lot lonelier than a lot of people think it can be, depending on your situation, like mine, but look for support groups and help and other family members. In my case, that didn't do a whole lot of good, but, um, be prepared for that too. Um, when I started, this was in the middle of the pandemic in 2020 and I looked for caregiver support groups. Most of them were not operating at that time. Uh, the few that were not operating at that time Uh, the few that were, were operating only via zoom, which I did not want to do. I wanted to be in a real room with real people talking about our problems, so I did.

Speaker 3: 23:48

I was able to come up with two caregiver support groups that only met once a month, which is not very often. A lot of people will think, oh, they meet once a week. No, they meet once a month. If you're lucky, so lucky, but I did take advantage of those. They did help a whole lot, for sure, but there may not be as many as you think there are out there. Hopefully there'll be more and as far as depending on other people, keep in mind that that just might not happen. You know, you always have friends and maybe some relatives and acquaintances who will, you know, take pity on you for your plight and they'll say, oh, I'll come over and watch her for a few hours so you can take a. Offers often just don't materialize, and you have to be prepared for that. It was a very sobering thing when you find, wow, I really am alone in this thing. It's very, very sobering. And there are people who you might expect would swoop in and they don't, right. So, um, get ready for that.

Speaker 1: 25:03

If you find yourself in this type of position, yeah, I was definitely going to ask about any support groups not realizing that you were going through this during COVID. So you just had a lot of strikes against you that were really isolating you.

Speaker 3: 25:16

Yeah, the isolation was was really tough. Um, like I said, it can be more isolating than you, than you imagine, to watch your life kind of, uh, drift away. You, you know, you put everything on hold at first. You say, oh okay, I'll put my plans on hold for the time being, and then, as the years drift by, your plans just go, they evaporate, they don, you know, and you have to be kind of prepare yourself for that as much as you can. Um, one of the things I would point out too, which I meant I have a whole chapter on him in the book, but I had. I have a little dog and that little dog kind of inadvertently helped keep me from going completely crazy.

Speaker 1: 25:56

I could see that yeah.

Speaker 3: 25:57

I mean, I wouldn't have thought that beforehand and uh, but going through it, it just so happened that I had a dog to begin with and he was my lifeline, I mean, when there was nothing else, you can't have anything else. Get a little dog because it really helps, because you have to think you've got to take him outside, to go to the bathroom, you know. So I had to get out several times a day, which gave me a chance to clear my mind, to get outside, to get into nature. I went to parks in the area. You know it was only 20 minutes at a time, but that it's better than being locked inside 24 hours a day, seven days a week. And, you know, some companionship. It's not a person, but it's somebody there who really lifts your spirits and he was, you know, there. He was the only one who was with me through the darkest periods of this and I'll never forget it. I mean, I I owe that dog a lot.

Speaker 1: 26:50

What's his name?

Speaker 3: 26:51

His name is Sammy.

Speaker 2: 26:52

Oh.

Speaker 3: 26:53

And you know he's still with me and um, but the memories of him in that time are just always together in my mind. Yeah, he was the only one there. That was it.

Speaker 1: 27:05

Right.

Speaker 3: 27:06

And that really helped.

Speaker 1: 27:07

Well, you're a very creative person. You're known for writing art, even music. Did those outlets help you get through this hard time?

Speaker 3: 27:14

Yeah, actually they did. I started a journal of sorts in the middle of this. I only kept it for a while, but I did write, which helped me. I think it would help other people just to write on a laptop. You know I did it almost every day for a while, months and months but, um, just to write your thoughts, your reflections, your hopes, your dreams, whatever, and then I would go back and read over it, sometimes in the, you know, in the future and look back and see what I was thinking a week ago or a month ago, or you know how I could change my perspective or insights. That certainly helped. I wrote a book of short stories during this period as well, which also helped. I continued writing, for I started writing for um, park City's People and Preston Hollow People newspapers during this period too. So that helped. I also painted quite a bit.

Speaker 3: 28:10

Um, I paint and I was looking back, and during the mid kind of the middle period where things sort of calmed down during these three years a little bit and my artistic output was like very impressive, I look back and I just painted dozens and dozens of paintings. It was hard to do because I was interrupted every few minutes, yeah, and that only increased with time. So sometimes I could only paint for an hour or I could paint for 30 minutes later on 15 minutes, you know. But it did help me from going nuts call during this period where the therapist asked oh so you paint, you get out your aggression and your anger, you know, and your, your depression and your pains. I was like no, it's the opposite. I'm painting like happy scenes, colorful landscapes and portraits and the sort of the way I wish the world was not the way it is right now. I mean, there was enough problems going on in my life, I didn't need to add to them by painting them. So it was more of an escapism thing, but it really helped.

Speaker 1: 29:25

Yeah Well, do you see yourself writing more memoir style writing, or was this kind of a one-time thing?

Speaker 3: 29:33

Yeah, this being my first nonfiction book. I've got six books of fiction and it was a little different to write nonfiction much more editing. The writing was faster, the editing was way later.

Speaker 3: 29:47

I could tell yeah, but yeah, no, I've thought about writing about other periods of my life, for sure, um, and it's just a different thing. I mean, in a way it's it's rewarding in a different, different way. Um, and you have to decide at some point. You know, there are days, or I think, should I really be telling the entire world this story? It's pretty personal. Personal, you know. But you know, in my life and at my age, I figure, oh, what have I got to hide? You know, if it can help somebody, I might as well get it out there. It's. You know, I'm not 20 anymore and it's not like I'm going to, you know, cause myself that much trouble by getting so personal.

Speaker 1: 30:29

Well, that is one of the benefits of getting older is at times you just don't care as much as you used to I know.

Speaker 3: 30:34

Yeah, that's true, and I think when would I do this? When I'm 70, 80, I might as well just go ahead and do it now.

Speaker 1: 30:44

Well, no, I think that you were brilliant in doing this, because it's just a different take. Like we keep saying is, people try to paint things in a more positive light, and you just got straight to it and showed your side, and there's plenty of people you know going through the exact same experience. Well, what do you hope readers get from the book?

Speaker 3: 31:03

Um, I just hope they can identify with it and it sort of uh helps them in their troubled times and to see that someone else is going through, you know, something as difficult as what they're going through. Uh, like I said, I in the middle, at the beginning of this, I basically had a total breakdown. I mean, I was just totally lost and through the course of it, you know, I kind of came to my senses. And it also can show you that even when things seem a relationship like the one with my mother myself can seem just hopelessly damaged and and you know, hopeless that in the end actually something good can come out of it, even even when you're not expecting it. You know that the end between us was much better than how this little journey started, and that's something even I didn't expect you know, and I'm glad you know for all the difficulties we had and how excruciating parts of it were, in the end I'm glad it happened.

Speaker 3: 32:02

You know things in my own life turned around during this time and you know I'm hopefully kind of a better person for it in the end.

Speaker 1: 32:12

Right, I know it sounds like such a tough experience, but I'm so happy that you were able to end things just feeling more positive about your relationship with your mom and you got to see that softer, sweeter side of her.

Speaker 3: 32:24

Yeah, yeah, you know, you think back and I think, would I trade all that, you know, would I choose not to go through this? And I think now, now that I have a little bit of distance from it, I would say no, I wouldn't Because, as you say, I have a totally different perspective on her and that never would have happened had I not gone through all this, and hopefully it was worth it. I think it was. I have a different outlook.

Speaker 1: 32:50

Well, how can people find your book and learn more about you?

Speaker 3: 32:54

uh, okay, so uh, forgetting the trials and triumphs of caregiving for a difficult parent with dementia. The book's title should be on Amazon and elsewhere. I have my I'm on Instagram, facebook. I'm on X as well. Usually, you can find me by looking up the real Josh Hickman or at the real Josh Hickman. That's usually where I am.

Speaker 1: 33:27

And I will include links to those so you don't have to remember them yeah good. Well, Josh, thank you so much for coming in and sharing your story. I think this is going to help a lot of people that are going through similar situations, and I can't thank you enough for sharing it with us.

Speaker 3: 33:41

All right, well, thanks for having me.

Speaker 1: 33:42

I appreciate it, that's been another episode of the Bubble Lounge. I'm Martha Jackson and I'll see you next time.