Episode 117: The Guilt We Give Ourselves

Senior Living Guide.com podcast

Guest: Darleen Mahoney

"Don’t you let anyone should on you. And don’t you should on anyone else." 

is the actual quote that came from the Terrible, Thanks for Asking podcast. Apparently my brain changed it to "don't should all over yourself". :)

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Transcript

[00:00:01] Robin Rountree: Welcome to Informed Aging, a podcast about health, help, and hard decisions for older adults. I'm Robin Rountree. I'm a former family caregiver. I've worked in the home care industry, and now work for the Alzheimer's and Dementia Resource Center. The thoughts and opinions expressed on this podcast belong to me and my guests, not our wonderful employers and sponsors.

[00:00:27] Before making any significant changes in your life or your person's life, please consult your own experts. Today, we're gonna talk about caregiver guilt with Darlene Mahoney. She's the host of the Senior and Caregiver Resource podcast, seniorlivingguide.com podcast. Inspired by real life experiences and working with so many in the senior living space over the years, she believes that sharing her story and experiences about caregiving for her father with dementia will help others just starting their caregiver journey.

[00:01:03] We'll be back with that right after this

[00:01:06] Senior Helpers is the only home care agency offering a revolutionary new way to approach senior care, the Life Profile assessment. This database app is a crucial tool in helping seniors age safely and successfully at home. Combined with our proven in-home care programs and trained caregivers, Senior Helpers Life Profile is leading the way to better outcomes for our clients.

[00:01:33] For more information, log on to seniorhelpers.com/orlando. 

[00:02:09] Robin Rountree: We are back with Darlene Mahoney. Now, she's the national digital sales director for seniorlivingguide.com. She hosts the Senior Living Guide podcast, and today we're not talking about the fabulous Senior Living Guide. We are talking about our experiences with caregiving and guilt.

[00:02:30] Darleen: Yes

[00:02:31] Robin Rountree/: you're a caregiver out there who hasn't had guilt, you're among the .5%.

[00:02:36] Darleen: Exactly. Exactly

[00:02:38] Robin Rountree/: So tell me about your journey with caregiving, 'cause it was your mom and then quickly your dad, right?

[00:02:45] Darleen: Yeah. my mom had ovarian cancer, and she had it for eight years. . So my mom, the caregiving side was not extensive, until the hospice side, which was at the, clearly at the very end. But my dad was a whole different ball of wax

[00:03:01] Robin Rountree/: Okay. So 

[00:03:02] Dad seemed to be a good spousal caregiver to your mom

[00:03:06] Darleen: he really tried. I think that, he was clearly already having some very... he passed away from vascular dementia a year plus after my mom passed away, so it was a- actually quite quick. But they'd been married over 50 years, and he wasn't a social bug. it- my mom is the one that kept all the activities and life, moving through the family per se. And once she passed, I think he just was lonely and honestly he struggled. But I do think he was showing signs of dementia way before clearly she passed. I do think that she made efforts to cover up she did say some things to me, but in all honesty it wasn't enough to like push me, and we were dealing with her.

[00:03:52] So it was like you can only deal with one crisis at a time, and that was the, I call it the Scarlett O'Hara moment of, she's standing at the bottom of the stairs and everything is burning. I'll think about that tomorrow.

[00:04:02] So that was me all day long. and maybe her as well. I don't know.

[00:04:06] she was just trying to navigate her own illness and, her death, upcoming death. that's always very scary, I can imagine

[00:04:14] Robin Rountree/: Yeah, but you weren't the primary caregiver for mom. You were helping out with your dad

[00:04:20] Darleen: yes. After my mom passed away and I started seeing more and more issues, sticky notes, sticky notes on your medication that were now on the floor, so

[00:04:33] Robin Rountree/: Oh

[00:04:34] Darleen: it goes to. and then, just so many different, little telltale signs that started cluing me into the, Houston, we have a problem. So

[00:04:46] Robin Rountree/: And so it lasted just about a year from diagnosis to his passing?

[00:04:51] Darleen: yeah.

[00:04:52] Robin Rountree/: Wow

[00:04:53] Darleen: it was very strange because in all honesty, he always knew who I was up until like four days before he passed away. he was just very confused a lot. It was more of a confusion. but one of the things that I noticed even during that confusion is suddenly he starts like walking with a limp or like inability to move his, left leg if I recall correctly.

[00:05:18] And then he goes and gets a cane. And I was like, "Dad, what's going on?" Now, my dad was 71 years old. He passed away

[00:05:24] Robin Rountree/: Oh.

[00:05:25] Darleen: He passed away four days after his 72nd birthday, so he was young.

[00:05:29] Robin Rountree/: Yeah

[00:05:30] Darleen: the, the walking with a cane without having any kind of accident or illness or hurting himself was just weird.

[00:05:39] Robin Rountree/: Yeah

[00:05:40] Darleen: but he couldn't... He didn't know why. The doctor said that he didn't know why. He was just, having some aches and pains or whatever. but I came to find out at the end that he was starting to lose mobility due to the dementia. then he started having issues like his arm, started, babying the arm. And I'm like, "What's wrong with your arm?" "I don't know." And it's like he couldn't direct it to move the way that I guess he wanted it to move. And then really at the very end, the final straw that broke the camel's back was he s- he lost the ability to swallow. but

[00:06:14] Robin Rountree/: that's a lot of things to change within the space of a year. So you were on a fast-moving train

[00:06:20] Darleen: for me, so this is what I thought was so strange, 'cause, I work in this

[00:06:25] business. . Now, I was newly into the business. . So senior healthcare and senior living and all these things were brand new to me, but I had a lot of resources and I was definitely on the learning curve on this complicated journey that we all start enduring when we start getting older. but I realized that, he was forgetting things in chunks.

[00:06:50] Robin Rountree/: Did he ever realize that he had the illness?

[00:06:54] Darleen: So I think, I didn't wanna say it to him 'cause I, I felt like he heard that or knew that and I said it to him, it would just make him sad and depressed and, some different things. So I didn't up until we moved him from his home,

[00:07:12] and that was the hardest thing.

[00:07:13] it was the home he had with my mother, he was happy there, but his safety was a concern, other people's safety was a concern.

[00:07:22] so once he moved and we explained, "We've moved you here because, we'd seen the doctor and we got the diagnoses and things like that because you have dementia," and he took it like I told him he had, a sinus infection or a cough.

[00:07:38] Robin Rountree/: Wow

[00:07:39] Darleen: He was not affected by it. I think, in all honesty, he'd known for a long time, but didn't want to admit it to himself, I'm sure, and didn't wanna admit it to anyone else.

[00:07:50] 'Cause he knew that he admitted it, once it came out, that we would probably start taking actions to take away some of his independence. And also, one thing I think people don't ever think about is, my dad was my dad.

[00:08:05] Robin Rountree/: Right

[00:08:05] Darleen: up in a home where he was, the leader of our family.

[00:08:08] Robin Rountree/: . he was always just the gentleman. And I had so much respect for him and, he had nicknames for me. I called him Popsicle. Aw

[00:08:16] Darleen: so I mean, we just had this relationship, but he had always been the head of our family.

[00:08:21] He'd been the strength, during a lot of times in my life so I think he was afraid that if he showed that he couldn't do this, then he was abandoning me. I'm not exactly sure, but I have a feeling that was part of it because he wanted to maintain being

[00:08:40] Robin Rountree/: His role.

[00:08:41] Darleen: his role being my dad, as long as he could.

[00:08:43] And so it was hard for me 'cause I didn't wanna go into his finances 'cause I felt like I was, digging through somebody's underwear drawer when they weren't home, you know?

[00:08:51] Robin Rountree/: Right

[00:08:51] Darleen: felt like, and I hated that feeling, but it had to be done. And i- in all honesty, I'm so glad that I did it when I did it because it was shocking.

[00:09:00] He had, three cell phones and two cable companies and satellite

[00:09:06] Robin Rountree/: Wow

[00:09:07] Darleen: because he was paying for all of them. And he also had someone that had scammed him at $500 a month that was a lot of money for my dad.

[00:09:13] Robin Rountree/: Yeah.

[00:09:14] My goodness. So he passes after this crazy journey.

[00:09:19] and I know when we, one of the first times we talked, you've told me you dealt with a lot of guilt over that whole experience.

[00:09:28] Darleen: so the, so the guilt is, I didn't a- always make the best decisions for him. I probably could have spent more time with him. have probably seen some things that I didn't see much earlier. probably got him out of there earlier so that maybe he didn't decline, 'cause I do think the loneliness is definitely a factor in all of it. and then, anytime you're dealing with someone... he died very quickly. So he was in, a skilled nursing facility for a short period of time, after he started losing some of his mobility, and I didn't see any improvement, . I would have never done that.

[00:10:07] I, I, and I know it's needed for certain things, but in retrospect, hated that he was in there because he, I think he lost his, joy he had. 'Cause it's hard when you have dementia to have joy, 'cause you get... definitely affects, just your everyday joy that you and I would have about, "Ooh, we're

[00:10:24] Robin Rountree/: gonna go get ice cream," Right

[00:10:26] Darleen: something that kind of fades. And so that really just was like the straw that broke the camel's back for me. So I have a lot of guilt about that. I have a lot of guilt about leaving him alone for as long as I did. I have a lot of guilt about my inability to be patient with him as well because it's, it can be frustrating.

[00:10:47] He...

[00:10:47] Robin Rountree/: Oh, 10,000%.

[00:10:49] Darleen: Exactly. He could not figure out how to work the remote control all of a sudden. One day, just flipped a switch. Zoom, zoom, and then all of a sudden he can't move it past channel 13, so he couldn't figure out how to get beyond that, and so my son was going over there, and I was... But I was like, "What? This is insane." So we started putting sticky notes and, and then he started touching the TV, so I had to put notes, "Do not touch," because then he'd call 'cause it's on sub HDMI something. So my son is, leaving school to go over there to help him, push the buttons to get back to where it's not that. So that was really difficult. . But it was, the guilt for me was I had promised my mom. So my mom she was in hospice, and she was in hospice for several weeks where she was completely sedated. she had no food, no water. It was just... I just can't even get into that part. That's a whole different podcast. But I can remember, laying in bed with her because I just, I wanted her to just go because I just knew how miserable, how horrible had to have been feeling. 'Cause she was still, even though sedated, there were times where you could, you knew she could feel pain, and that's very difficult 'cause you can't communicate 'cause there's no response back. but I would just whisper in her ear and say, "Mama, you can go 'cause we're gonna take care of Dad. Dad is gonna be taken care of." 'Cause I feel like she was somewhat maybe hanging on because of Dad and making sure that he was gonna be taken care of. And I don't know that I did that justice for my mom. I always think to myself, I hope she knows and I hope he knows with the knowledge I had, did do the best that I could in what seemed like a rollercoaster from hell that you can't get off of when you're trying to make decisions, the best decisions for people that you love.

[00:12:42] And I had, someone tell me, that my guilt, especially after, it's been years, it was 2019, before COVID, which I am thankful that we didn't have to do dementia during COVID. I can't imagine.

[00:12:52] Robin Rountree/: Same

[00:12:53] Darleen: But, I, the guilt that I had, and I missed him so much, and I would've spent more time with him. I would've done all these things. I would've made different decisions than I did make. the guilt had me, in my car crying randomly. In, the shower. you could go in there and you could just really have a good cry and get it out.

[00:13:14] And that was a long time after he passed that it still affected me. But she told me, "Darlene, guilt is a gift you give yourself And she's right

[00:13:27] Robin Rountree/: Yeah, nobody else is making that judgment on you

[00:13:29] Darleen: Yeah. You're, sometimes you're your harshest critic, right?

[00:13:33] Robin Rountree/: Oh, absolutely, and especially with guilt, and, I was, before this interview I wanted to see what some experts were saying, and it was like you can just acknowledge, okay, I could have visited more with Dad,

[00:13:48] Darleen: period. But it's that judgment that comes from it,

[00:13:52] "Boy, I was a bad daughter because I didn't do more with Dad."

[00:13:57] Robin Rountree/: It's that emotion you put to the action that just is so hard to not do.

[00:14:05] Darleen: Yeah

[00:14:05] Robin Rountree/: you would talk to a caregiver now in the current situation, you would probably tell her, "No, you're doing all that you can," right?

[00:14:15] Darleen: Yeah

[00:14:16] Robin Rountree/: never speak to another caregiver the way you speak to yourself

[00:14:19] Darleen: Exactly, yeah. I think that my experience, and I know that on our podcast, the seniorlivingguide.com podcast, it was started during COVID just a form of reaching folks that were aging in place, resources that maybe they weren't getting. But in all honesty, one of the reasons why I really wanted to do this and why I find this, this form of podcasting reaching people so they don't make some of the mistakes that I did, and give them the resources, just like what you offer, so that caregivers can make better choices.

[00:14:59] Caregivers, a lot of times, mentally it fried me. It absolutely fried me. But finding that support, I had no support. I didn't know there were caregiver support groups. there's carever- caregiver Facebook groups. how easy is that? That's not complicated. There's no big commitment to that, right? I didn't even know all of these things were out there, and I was riding solo,

[00:15:22] Robin Rountree/: Ah.

[00:15:23] Darleen: on this journey. And so it was, don't want anyone to ever feel like they're alone. And so that's one of the best things about doing the podcasting and the content that we provide, is that we can, fill the gaps with some folks that maybe are looking for, for their cups to be filled with information or support or whatever the need is

[00:15:43] Robin Rountree/: . There's such a need for that information, because nobody prepares you for caring for your adult parents

[00:15:51] Darleen: an adult. if you're pregnant, everybody throws you a party and buys you six books on how to do this, and you've got some months to study up.

[00:15:59] Robin Rountree/: But this stuff, it just one day you realize, actually you don't realize. You go in denial for several months or years, and then you go, "Okay, I have to step in and take care of this." And it's, you're out there alone, and, yeah, you can't do it by yourself. I tell people over and over, it is a team sport.

[00:16:19] Darleen: Yeah,

[00:16:19] Robin Rountree/: It is not a solo sport.

[00:16:21] Darleen: Yeah

[00:16:21] is 100% it. I, I'm in my head joking 'cause I'm thinking, oh, I wonder if anyone has written a book, What to Expect When Your L- Loved One Starts Showing Cognitive Decline. What

[00:16:33] Robin Rountree/: They should

[00:16:34] Darleen: Who didn't read that, at least back when I was having kids?

[00:16:36] I don't know if that's a

[00:16:37] Robin Rountree/: Right?

[00:16:38] Darleen: but I always remember, you study and do all these things, then you have this baby, and then there's no book after. when the hard part actually hits.

[00:16:45] Robin Rountree/: Right

[00:16:45] Darleen: yeah, yeah. So I just, I always think, there has to be some kind of, book that kinda you think would kinda go that direction, right?

[00:16:53] Robin Rountree/: Yeah. Yeah, but the, here's the thing, when you realize you're in it, you don't have time to read.

[00:16:59] Darleen: This is true.

[00:17:00] Robin Rountree/: Yeah.

[00:17:01] Darleen: to a podcast.

[00:17:02] Robin Rountree/: you listen to our podcast.

[00:17:04] Darleen: Exactly. Exactly.

[00:17:06] Robin Rountree/: Sweet

[00:17:06] Darleen: and I just, I feel like there's so many resources out there. I just, no one should ever feel alone.

[00:17:12] Robin Rountree/: Yeah.

[00:17:13] Darleen: if you were to go back and talk to your former self,

[00:17:17] Yeah

[00:17:18] Robin Rountree/: what would you tell her to do differently?

[00:17:22] Darleen: Oh my gosh. don't ignore... Oh my gosh. the number, number one is don't ignore the signs. I know you think that you say to yourself, "I'll think about that tomorrow." first of all, that's not good for the person going through it because they need some acknowledgement, they need some help, and they, you may need to start taking steps sooner than you think. And then we also know that early detection can actually slow the progress down where, they can continue to live a, a, a more cognitive, healthier life. so early detection is becoming more and more key. and I would have, if I had known even when my mom was still alive, I would have marched his happy hiney in and we would have tried to get some more help, clinical help, whatever that might be for him.

[00:18:09] Because by the time he was diagnosed, there really wasn't. It was just too much, yeah. But he did such a great job of covering it up for such a long

[00:18:18] Robin Rountree/: Ah.

[00:18:19] Darleen: But he did leave n- he did leave, a trail that we

[00:18:25] We just didn't pick up the pieces. Mm-hmm

[00:18:29] Robin Rountree/: Right, right.the guilt, a lot of that, the bad feeling comes from that judgment of I didn't do this and I didn't do that, and that I should have done more. how much of that have you forgiven yourself for?

[00:18:46] Darleen: I have, I think I've forgiven myself for most of it. There's still little things that are more like relationships with my sister and some, 'cause that's a whole different podcast as well,

[00:18:56] Robin Rountree/: Yes

[00:18:56] Darleen: care of someone with dementia and you have siblings or other people that are involved, there can be a lot of conflict.

[00:19:03] Robin Rountree/: some of those things I still think I'm working through, which is not directly related to the care of my dad. But I do think that, I am on the other side. and I just, I personally feel, and some folks may not, that I'm gonna see him on the other side and I'm gonna give him a hug and he's gonna know I love him so much

[00:19:24] And I bet he's gonna thank you for taking good care of him.

[00:19:27] Darleen: Yeah.

[00:19:28] Robin Rountree/: Yeah.

[00:19:29] Darleen: might hit me over the head with a frying pan I'm just kidding.

[00:19:32] Robin Rountree/: I doubt it. I doubt it.

[00:19:34] Darleen: no. They're-- I have to believe that they're living, their best life and they're both, you know, longer in pain.

[00:19:42] Robin Rountree/: So

[00:19:43] So 

[00:19:43] what advice would you give to a caregiver now to avoid the guilt?

[00:19:54] Darleen: Um, you know, so some people can take guilt it doesn't bother them, and then some people lets it eat them up alive, and I think that's something that just, it's how you're made,

[00:20:03] Robin Rountree/: Yeah

[00:20:03] Darleen: the way that you process things. So I do think that daily looking for resources, getting the strength you need, I think therapy to kind of work through some of those things. you just have to find a really good therapist. get recommendations for a therapist 'cause there's a lot out there, that you think would be a good fit for you, and I think that's a good way of working through it. I think that talking about things and talking with, people that you trust, and people that don't wanna fix it.

[00:20:36] I think that sometimes you start talking and it, the, you start talking to fixers. and sometimes you just don't want it fixed. You just want to be able to talk about it

[00:20:45] Robin Rountree/: And I think there's always gonna be some level of disappointment in yourself in dealing with a person who has dementia, because you want them to have that brain that you were used to, and you're gonna make mistakes. But it's forgiving yourself for that, for losing your patience, that has helped me.

[00:21:04] And I really was open about my mother's journey. I shared it on Facebook, because I just didn't see the use in shame

[00:21:14] Darleen: Mm-hmm.

[00:21:15] Robin Rountree/: that disease, which a lot of people still have, they don't wanna talk about dementia. But, I needed to keep a lot of people informed about what was happening with her, so Facebook was the way.

[00:21:26] And I, I did get some nice positive reinforcement,

[00:21:29] because I went through it younger than a lot of my peers. and a lot of it was like, "I could never do what you were doing," but I think, well, you could, you just haven't been made to do it.

[00:21:42] Darleen: Yeah.

[00:21:42] Robin Rountree/: Yeah. 

[00:21:43] Darleen: Yeah 

[00:21:44] Robin Rountree/: that worked a little bit for me. I'm the same though.

[00:21:47] I still have moments that I relive and think, "Why did I scream at my mother right then?" But

[00:21:53] Darleen: 100%.

[00:21:54] Robin Rountree/: yes,

[00:21:55] Darleen: Yeah. Yeah

[00:21:57] Robin Rountree/: But I also know we were never alone in this battle. There was this big thing called dementia that made everything worse and everything harder

[00:22:12] Darleen: Yeah. Yeah. And I didn't put anything out there about my dad, so when he did pass, I did post that, and the shock that came from people that were, more my mom's circle. My mom was a schoolteacher, so I, they were on my Facebook. I've known them since I was, like, five years old and all the things. They were shocked and I somewhat felt bad about that. But I felt like it was weird 'cause we posted a lot of stuff when my mom had ovarian cancer, right? These surgeries, different things. she's, had, she's no longer in remission, whatever the... Or she is in remission. Yay, let's all celebrate.

[00:22:40] Robin Rountree/: my dad, there was something, and I don't even know to put my finger on it, but I felt like I was airing his dirty laundry if I would put that out there, so I didn't. And I don't know why, 'cause in retrospect, that was wrong. But for some reason, I just felt like it was protecting his dignity or something of that nature. And it's not if you have Alzheimer's or dementia that you're gonna get better. So it's not like, you know, oh, he has dementia. Oh, today he's in remission. He's doing great. Doesn't happen

[00:23:11] No. No. But that is interesting 'cause, yeah,

[00:23:15] are you removing some dignity, which I do think is so important.

[00:23:19] but my mother did realize that she had the disease, so I believe that we talked about it.

[00:23:26] and she was okay with it. So yeah, if your father didn't know, that's a whole thing

[00:23:32] Darleen: Or it wasn't something we discussed, which we

[00:23:34] Robin Rountree/: Right

[00:23:37] Darleen: 100%, till, until we moved him, and then, we sat down. And one thing I said to him, and I'll, I will never forget this, and I just, was one of the best decisions I did say to him, and I probably should have said it sooner and probably should have moved him sooner. So guilt, guilt, guilt. But we were sitting there in, the, the community that we moved him to for memory care, and I said, "Dad," I said, "You don't have to worry about money anymore." And he said, "I don't?" I said, "I'm gonna take care of everything." And he was like, "Oh my gosh, that is so good." You could just tell there was a relief. I will tell you, when we cleaned out his house, he had been-- And my parents never gambled. My dad was not a gambler. Never, as far as I knew, never played the lottery, bingo, nothing. my dad had massive amounts of lottery tickets from, really the time after my mom died.

[00:24:34] I think he was worried about money. 'Cause they had both their Social Securities,

[00:24:40] Robin Rountree/: Yeah.

[00:24:41] Darleen: and so that went away.

[00:24:42] Robin Rountree/: Yeah

[00:24:43] you're making me think of something I heard on another podcast, uh, Terrible, Thanks for Asking. somebody had brought their grandmother's advice, and it said, "You shouldn't should all over yourself."

[00:24:58] Darleen: Ooh, I like that one

[00:24:59] Robin Rountree/: 'Cause there is all things we should do, but you can't beat yourself up for not getting everything done that could possibly be done, because we all need to rest, and we're not superheroes.

[00:25:14] Darleen: Yeah.

[00:25:15] Robin Rountree/: Yeah. So when you're going in that guilt storm, don't should all over yourself.

[00:25:21] Darleen: Exactly. it is a gift you definitely give yourself. You really do

[00:25:25] Robin Rountree/: Yes

[00:25:26] Darleen: ways alleviate that. And then also realizing I'm doing this to myself, I don't have to feel this way is the other aspect to it. So yeah

[00:25:35] Robin Rountree/: Oh my goodness, Darlene, thank you for sharing your journey

[00:25:39] Darleen: Yeah. Thank you for having me. This was a great talk, and

[00:25:42] Robin Rountree/: Yeah.

[00:25:43] Darleen: that people can listen to this and make their journey better,

[00:25:49] Robin Rountree/: Right

[00:25:49] Darleen: with the information that we talk about and the information that you share. I'm so thankful for everything that you're putting out there as well, To educate

[00:25:57] Robin Rountree/: Yeah, it's a lot of education and not being afraid to ask for help, and, if you are a caregiver right now, know that we are both rooting for you

[00:26:06] Darleen: Yes. Yes. And there are so many people out there to support you, you don't even know. You just have to do a little digging

[00:26:13] Robin Rountree: Please make sure to subscribe to our podcast, Informed Aging, and tell your family and friends about us. You can find us at facebook.com/informedaging. Today's episode was recorded at ADRC's podcast studio. That's it for now. We're looking forward to our next visit