Caregiver Guilt Before, During & After
00:00:01 – 00:05:02
Welcome to fading memories a podcast with advice wisdom and Hope from caregivers, who have lived the experience and survived to tell the tale. Think long as your caregiver best friend, As you know, my mom suffered from Alzheimer’s and cognitive impairment affected my grandmother and great-grandmother it seems to run in my family. But I’ve learned my brain health doesn’t have to feel the same fate. As those who came before me. I am doing what I can to improve the health of my brain including eating a better diet and exercising. However, I learned recently that when it comes to nutrition, most of us are still living with undernourished brains and I know I need something to fill those nutritional gaps. This led me to neuro reserve and their product relative’s relevate is a nutritional supplement that restores the vital nutrients for a healthy aging. Brain relevate includes 17 of the most important nutrients, that specifically Target long-term brain health. These nutrients come from the Mediterranean and mind diets, which Studies have discovered can reduce our risk of Alzheimer’s by over 50%, you can use my code off. M15 for 15% off of your order, this code is good for subscriptions which will apply to all future orders as well as individual orders. Go to narrow Reserve, to purchase. The link is in the show notes and you can also find it on my website. Neuro reserves mission is to help our brain span match, our life span I was in my early 30s. When it became evident that, my mom was having cognitive issues despite doing the very best. I could, I had guilt over everything related to Mom’s care, and most of the caregivers have spoken to have some level of guilt. And for many of us, it’s significant. Why is this the answer? May be surprising faith. In today’s episode, I talked to Lauren diko vets, who had to navigate early adulthood and her mom’s Alzheimer’s at the same time. Loren is the author of life love and Alzheimer’s, this book is about the early Journey with her mom’s illness. Lauren also just published her second book. When only loves remains we discussed her caregiving Journey. How we both had lots of guilt and how to get pass that feeling. We both hope this episode gives you some comfort. With me today is Lauren died. Kovich she is the author of the book life, love and Alzheimer’s. She also has a very active Instagram page where she’s very supportive of those of us still going through the caregiving Journey. So thanks for joining me, Lauren. Hi, thank you for having me. You’re welcome ma’am. So you and I are a bit in the same boat my mom passed away, March 31st 2020 and your mom passed away April 4th 2020. So we’re both little bit past a year. Thought you were really young caregiver. So do you want to start by telling us your story and one of the common themes that Lauren and I had, as I was reading her book home, I realized that we both had lots of guilt. So we’re also going to touch a bit on guilt why we feel it and maybe how to not feel it. So that’s our plan for this afternoon wage So why don’t you start with your story but they’ll give it all away cuz people should really read the book, I’ll thank you. Yeah, so I was twenty-five years old and my mom was diagnosed with early-onset. Alzheimer’s, she was sixty-two at the time, I was working full-time. My first full-time job, you know, adult job as a police officer and I actually got engaged the same month that my mom was diagnosed. So the first thing I did after Her diagnosis was to plan a wedding without my mom and then things got harder over the years, I ended up quitting my full-time job to become a part-time, caregiver for my mom. And I sort of thought that often on over the next few years, had a couple of moves in there. So I did like the long-distance caregiving and then moved back home. So few months before my mom passed away last year April 4th of 2020. So a few years into Her diagnosis, I started sharing my story on a Blog. I just kind of felt like I wanted to get my story out there for other young women who didn’t maybe didn’t know somebody their own age.
00:05:02 – 00:10:01
That was going through a parent, having Alzheimer’s and through that. I wrote a book and started my social media accounts and everything called life love and Alzheimer’s and just have been continuing to share my story with and anything that I’ve learned throughout the 10 years that my mom was living with Alzheimer’s. So when we were before we started recording, we were talking about support groups as a way of maybe help alleviate and guilt and you did go to any support groups because because you were so young you want to tell us a little bit about why you made that choice. Yeah, being twenty-five. When my mom was diagnosed like I didn’t know anybody else. My age that had a parent who had Alzheimer’s and I think it was the day after my mom got her diagnosis. Just I called my best friend, and I told her that my mom was diagnosed with Alzheimer’s, and she said, oh, yeah, I know about that. You know, my grandmother had Alzheimer’s but I thought that was a lot different than being a parent that had Alzheimer’s when you were, I mean, just a grandparent and a parent depending on the relationship. Like, it can be a lot different and being twenty-five and having a parent with it is different than having a grandparent with it. So right away, I kind of thought like no one’s going to understand what I’m going through. None of my fears. Nobody, my age is going to relate to this or not, going to relate to me. They’re not going to understand what this is like and what I’m going through. So I really shut down great right from the beginning, and I didn’t talk about my mom’s diagnosis to really suck. One, my fiance at the time obviously knew my family knew some mutual friends knew because my I have a older sister, she told some of our mutual friends I didn’t tell anybody except that one friend on the phone that day and when she said that about her grandmother that was it, I just thought no one’s ever going to relate to what I’m going through and I would look up information, you know, online Which social media with this was back in 2010, which was when she was diagnosed. So social media. Wasn’t, you know what it is today? There weren’t people sharing blogs and things on. I don’t think Instagram was around yet and there weren’t people on Facebook sharing their story. They weren’t support groups on Facebook yet. It wasn’t not everybody had Facebook. I think you still had to have like your email address in order to get a Facebook or something wrong. So there wasn’t, there was no information out there. I couldn’t find anything. And the only thing that I did find was the Alzheimer’s association website, and it really wasn’t any like personal stories on there. It really wasn’t at the time. At least, the information didn’t cater to like a younger person dealing with this disease and although they had support, it’s listed on there. I just felt like I’m going to be the youngest person at the support group. It was like at some church on a Wednesday night at 7:00 or something. I thought there’s not going to be any kids, my age there and I don’t want to go have to drive somewhere at a on a specific day at a specific time to I worked shift work also when my mom was first diagnosed. So there were a lot of these meetings, I couldn’t go to. Anyway, I was working at night or different things like that, which also played a huge factor in it just not being dead. So to my schedule to be able to actually go somewhere for a meeting and I just really felt like nobody’s going to get it. No one’s going to understand. No one’s going to be able to relate to what I’m going through Page, twenty-five years old. And so I never saw support groups and I really did not talk about it for the first, like, three or four years. Probably, just crazy. I laugh because my support group right now, it’s still online but my support group is a Thursday night at a church in the evening. And I’m just while there’s nothing wrong with that. But, you know, we’re in like the kid room with there’s lots of brightly colored, very specific artwork on the wall and it’s like, you know, I’ve been in groups like networking groups and we meted, we meet at places that are kind and generous and allow us to, you know, be they’re cheaper. You so you know no criticisms there. It’s just kind of I don’t know I would be it would be really nice if we can have like a nice like cozy room with couches and I don’t know maybe it’s it’s been so long since we’ve met in person. I don’t think I’d care at this point but I usually am the youngest person.
00:10:01 – 00:15:03
And as I’ve told Lauren and I think I’ve said this all the podcast before I would go and they always ask you to introduce yourself and tell the group who you’re taking care of. And I would, I would laugh because unless a spouse came with, you know, the adult child, which I really hate that term. So if, if mom was taking care of dad and the daughter came along as a support to Mom, then there was usually means somebody my age or a little bit younger. But I was always the youngest person that had whose loved one had had the disease along. So I always felt like I got like the double gold star and our group home. Really good. The very first night I went I felt very supported and like okay, this is the right place to be the second month. I had enough information that I could help somebody. So I was like, wow, this is really good, but there’s there are times, there’s you know, I’ve run across people who don’t they just want to. I don’t, I don’t I’m trying not to be super nasty name but they don’t, I think they’re in such a difficult position, they don’t, they don’t want to, they want, they just want somebody to listen, which is fine. But they don’t like, literally take the action that people are suggesting. Maybe they’ve tried. Maybe they’re burned out, maybe they just, like, I don’t know. There’s just been people that have come in and out of our group that, you know, they they come down and lots of us have been dealing with this a long time. A lot of, a lot of the group they’re like some of us. There’s two of us in our group. Currently who’s one gals? Husband died last month. My mom died last year, other people their persons in late, the late stages of the disease. A lot of us been dealing with this a long time and we give advice in some people give like a specific advice. Oh, I dealt with the same thing at the same place. You need to talk to these people, like go and do X. It’s not, it’s not ambiguous at all, it’s not like it’s it’s very, very clear and then they don’t do it. They come back the next month and they whine. And it’s like, if you don’t get why are you here like, how are we supporting you, straighting but I felt really good about yeah. And you know, getting feeling better about my choices and being able to help other people, that was a really good combination I guess is the right word. So often both of us have looked at the Facebook caregiver pages and we’re not super fond of those. My my issue with those is there’s a lot of non when I say non off. Hello, I’m talking about emojis or oh, I’ve been there. I get it, you know, maybe that helps some people, you know, it might help you in the moment but then you’re like, okay great. But how did you how long? It’s kind of a thing. So right? It’s a very interesting position to be in. So one of the things that was really common between both of us, then I got out of your book was constantly feeling guilty and we were talking a little bit about this online. Neither one of us, really knows why everybody feels so guilty. But we’re going to kind of touch on it a little bit odd but you may have heard some dog ear flapping. Lawrence got two black labs. Right? Yeah, I have two black labs, Oakley and Lucy and Lucy is here with me. She’s always by my side and she brought me her little duck toys. So she was very excited to show it to me and now I think, hopefully she’ll take a nap off. Well I had until November of 2020. I had similar, I have two golden retrievers, we had three our oldest guy passed away right before Thanksgiving, right after 13th birthday. So, you know, twenty twenty was just lovely, but yeah, he was the same way. My husband referred to him as my stalker and he had very bad arthritis in his back legs and he would follow me everywhere. Anyway, it’s like, it might have been difficult. I was just, you know, and then you know when it’s time to take him to the vet cuz there’s not there’s no quality of life left and we have to like, let them go. You know, I got up from the floor, to get a tissue and he struggled to get up to follow me. And I’m like, please don’t do that. Just makes this whole process ten times worse. So I can totally relate. That’s why I’m like, I thought I heard a squeaky toy in there, too. So here’s some funny noises. It’s Lucy. I tried to play it off but she’s loud. So off. Well, I don’t have any dogs in here with me today. It’s kind of a little odd. Usually the girl dog is sprawled on the couch on her back. Just look at all. Then like, and then the youngest one, he sleeps on the floor is starting to be a little bit of a shadow. I think, I think now that the other one’s personality is not so dominant.
00:15:03 – 00:20:07
The other two are like, oh yeah, hang out on Morgan. So that’s a, that’s a little dog diversion for the moment. So we were, let’s, let’s go back a little bit. So, I know when you were planning your wedding, it was really emotionally challenging because there was things you wanted to share with your mom that you couldn’t because, you know, she just wasn’t in that space anymore. Do you think that’s? Like I think one of the reasons that Alzheimer’s caregivers have guilt is and this is like, really kind of stretch it, but I think almost like we feel guilty for like dead. Try to continue on with our own lives. Like yeah, somehow. Yeah, somehow, it’s like a subtle subtle like, well, I know you’re sick and and there’s nothing we can do other than, you know, trying to give you a nice quality of life while we can. I don’t know why we feel guilty that we should live our own lives, especially at twenty-five. And I think I was like, 32 when my mom started showing signs. So, my daughter was five, I could do the math, right? And, you know, it’s just, it’s hard. And I don’t know if I ever told you, but my, when my dad was on hospice, his best friend. We were discussing various things in his friend turns and looks at me and he goes well now your dad as soon as your mom will come live with you suck. Oh that’s nice. Now regular listeners will know my reaction to that was like new may I was literally fifty years old, my dad died. March 2nd, 2017 my dog. Moved out February 1st, 2017s just twenty-five so you can relate. It’s like yeah, no, I’ve been working since I was sixteen, I deserve to have like it was like God I’ve gone through the raising of the kid. I’m not jumping into like full-time carrying on my mom, but I still felt guilty with that choice and especially since yeah. She only lived three years after he died. So there are days. I think. Well, you know, it had, I known what I have not put her in memory care. The choice for memory care was made because my sister still works full-time, she had school-age kids, my husband, I are self-employed. So I’m like, I don’t know how we’re going to manage that. If she’s here, we’d have to have a caregiver during the day and and then, how long would they do? You know, it wasn’t like was like there’s a lot of rip-roaring activity excitement going. There’s like little stimulation if she had friends in memory care, she did a good job. Videos that she like, went on the bus, they did bus rides every week, I don’t know where they went, cuz, yeah, we’re in the suburbs. Not like, there’s like exciting places to go, and I think that was a really beneficial to her side. And now, I made the right choice, but sometimes I still think, well, you know, if I had, I known what I’ve made a different decision. So yeah, what is your? I think it’s so easy. I think it’s so easy to second-guess yourself until always wonder if you’re doing the right thing and you know, it’s so hard because they are losing pieces of themselves every day and it’s so hard to watch that and to witness that and just to know that there’s nothing you can do about it. I mean, you can try to make them comfortable and happy and I always say that you can’t change the outcome of the disease, but you can change the journey and I think that is why there’s so much guilt is that you just know that gnome What you do, no matter how much you do, it’ll never be enough because it’s never going to fix them or cure them or make them better. But you feel like for whatever reason, if I had just done that one more thing. If I had just talked to her for five more minutes, if I had just stayed to visit for five more minutes. If I had just bent over backwards, you know, one more time, I’m and it. The thing is that it doesn’t make a difference, it really doesn’t make a difference, but when we’re in it, it’s so easy to convince yourself that you’re a bad dog or a bad son or a bad husband or wife because you didn’t do like they, you know, you did a hundred things for them today but you didn’t do that hundred. And one thing, you know, and not and I just think it’s so easy to beat yourself up over it and just to kind of dwell on what you didn’t do or what you think you could have done better or maybe what you did wrong or that you snapped at Birth. I’m more. And I think that’s what a lot of the guilt, you know, comes from that. And I also think, you know, it’s different in all ages, for me, personally, being 25,000 as I was trying to, like, start my own life. I was trying to separate myself from the nuclear family of mom, dad, and my sister who was already moved out and married, and I thought was still new.
00:20:07 – 00:25:01
Well shortly before my mom was diagnosed, I was still living at home working, my first full-time job and then kind of just easily I transitioned into living with my boyfriend and then we happened to get engaged the same month that my mom was diagnosed. So it was the guilt of like leaving home. And, you know, leaves my mom and dad and feeling, like, I’m abandoning them because I moved out now, I don’t live with them anymore and, oh, God. Now I’m going to get married and how dare I, you know, do anything like fun or dead? And just, it’s just everything. I mean planning my wedding without her and feeling like I was leaving her out, but it was really just that she couldn’t participate in things like that anymore. She couldn’t help me do a lot of things when it comes to planning a wedding and I was working a full-time job, I had you know friends and a socialized and my situation ship with my fiance and trying to plan this wedding. That’s like a full-time job itself. And I felt overwhelmed and stressed out just with my life at the time and trying to include my mom in those things just made everything a lot harder to get done. So it was of course easier for me to not include her, but then you feel guilty for not including her and, you know, it’s just a spiral and it just never ends the entire time. Your loved one is sick. It just never ends. It’s just dead. You’re not feeling guilty about this and you’re feeling guilty about that and then it’s going to lead to a million other things that you’re going to feel guilty for. And I just you know just just never goes away. And I believe that his well like I said earlier we’re kind of in the same trajectory having lost mom’s almost in the same week. Actually it was the same week I can do math really Zone know there’s dollar signs, I could do it, but I know there’s times I feel guilty still like, well maybe I shouldn’t put it in the memory care or maybe get visited more than once or twice a week or you know, and like taking her, the doctor was a freaking nightmare. And it and I hated doing it because, you know, you can’t schedule a doctor’s appointment around your schedule and moms and, you know, just like okay, apparently I don’t matter and this scenario I’m just the driver but I’m them. With all the information because if you ask my mom, something chances are, you’re not going to get facts especially cuz she was very late stages and it was just, you know, you just there’s times I look back and I think oh my gosh especially for me. I I had guests telling me instead of going Mondays for two hours. You should go a couple of times a week for an hour and I’m like, but I’m off work and Mondays work for me. And if I don’t have it, if it’s not like I’m going to see Mama next day at X time. Like, I would go Mondays. After our Rotary meeting, I was already out of house, you know, it just, it was just very easy, and I didn’t work quote, unquote work on Mondays. I mean, I did until my dad died and then I had stopped making appointments with most people. Know, I was a photographer, I’d stopped making, like, I would do bit like business headshots on Mondays, cuz they were easy. And, you know, it didn’t didn’t require a lot of time, so it didn’t matter that I was dead. I’m like most of the day cuz our meetings over at 1:30, so I would schedule people like 2 or after. So, it didn’t I didn’t have to be like home, getting everything ready in the studio wage. And after my dad died, it was like, I’m just going to go and visit on Mondays after the meeting, because I’m already out the housekeeper’s, come on Monday, so I’m not going to be in their way if they come late, whatever just works. And then right at the end, December of 2019. I finally said, you know what, I can’t do these visits like this anymore, so I, what was it? The was like the Monday before Christmas. I went, I picked her up and put her in the car. Drove around the building to the assisted living dining room which was beautiful and they had great food. So it was a really a nice way to have a nice lunch, but be kind of in a controlled environment, which the following week was really helpful thing. And we sat next to another Christmas trees, which was like yep. Feet tall, and she’s like, oh, it’s Christmas. And I’m like, I don’t understand how you can see this Christmas tree in this Christmas stuff everywhere and I realize it’s Christmas, that was just really an interesting and baffling to me, I mean it wasn’t surprising cuz I she’d already forgotten like Seasons didn’t mean anything to her.
00:25:01 – 00:30:12
And, you know, I know in California we don’t have like dramatically different reasons, but she would always point out, the hills around between her house and my house nine months out of the year or eight. They’re brown when it rains in the winter. Doesn’t take too much room but they get green for a while around again. You know, I figured we moved her in was super green. We drove there was one day, we were driving in my house and I’m like I’m just going to notice these Hills or brown and she’s going to know. She’s been there longer than we told her she’d be there. And it was just like I was just like, literally, like driving like thinking oh she like zero clue. So we’re off. In the assisted living dining room. And we have the best lunch. It was literally like an hour picked her up. Like say at noon, put her in the car, we had lunch and I gave her her gift and then like literally I don’t I didn’t have a timer on but I was like, we’re going to cut this off at an hour. After an hour, put her back in her jacket, put her in the car, Jo Becker building, and took her back into the memory care part of the community best. Visit we’d had ever pretty much because it was short. We had like, literally getting the car, get out of the car. Each gift back in the car, out of the car. Hugs loves. And it was over. So it was, there was like, little chunks of details that you want to say that, you know, it wasn’t, it wasn’t like a timeline, but it kind of felt that way, which worked out great, but the next week she’d fallen and she ended up with song Says over her eye and and the notes to me because I think half of the her doctors were idiots. They did, they did a cat-scan on her head. Make sure there wasn’t a brain bleed, which made sense, but she this particular day, she was so nasty. I mean, literally I have a photograph of her holding the napkin up by her face with her face. Turned away from me. She was so mad at me because I’m, I was trying to help her was really terrible. And what it turned out to be is that she had cracked pelvis, which they found when she broke her legs. It’s like I’m not fond of doctor’s office, but, you know, it’s like I still feel guilty about that day, even though it’s like the reason she was being so, nasty, wasn’t my fault? I mean, I was like, tried. I mean, literally, somebody else had to put her in my car. She was so mad at me that this, this old lady, the gal that did the activities in the assisted living community had to put my mom in the car and I was like, oh, this is terrible and I still feel bad about job. Date of and I’m like, I know it’s not my fault. So I just find the guilt to be insane and I’m wondering if it’s because you know, you’re you’re grieving them anticipatory or early grief because you know what’s coming and you can’t fix it and you can’t make it better or it’s just, you know, you’re like constantly chasing this problem. And you know, what’s coming, you know, Laura and I have both been there and I just I just yeah, I think the guilt is crazy. How did you deal with? I think guilt. I mean that may. Well not well, I need to fix that for all of us caregiver. That’s why I think it’s so important for people like, you know, now that I have been through it and I’m on the other side. Like I feel like when you’re going through it, you’re in constant fight or flight mode and you’re just trying to put out like one fire to get to the next song. And put that fire out and you don’t have time to like, think about all of your thoughts and feelings and process, like what is happening and what you’re going through and your greasy and how you feel about it? And now that I am through it, I have a lot of time to process and think about it and I’m a very analytical like processing type of person. I think a lot and I really think it’s important to share, like, all of these things that I’ve learned that I’m continuing to learn because Faith, even though my mom is gone now, they’re still like you said, you just go back and I think about all these times, like, specifics crazy, the things that you remember and like a specific day, a specific table or like one conversation that is just like so fresh in your mind and you can have such deep regret about it and play it over and over in your head. And I’ve just learned dog. So much in doing that. That it’s like, I wish I had like, someone’s story like that to read when I was going through it, because it might have helped me to deal with the grief, or guilt a little, and the grief, a little bit better. If I had had someone who had gone through it sharing, just like these personal anecdotes, and all these stories about what it was like, what they’ve since learned, it might have helped me to deal with it a little bit better because I really didn’t deal with with the guilt.
00:30:12 – 00:35:02
Well, as I mentioned earlier, I when I was six twenty eight years old, I quit my full-time job and I became a caregiver for my mom. I was a part-time caregiver. My dad still worked full-time and I thought was pretty much working like a half-day schedule, so I would go over to their house while he was at work and he would come home, and I would go home and I would feel bad for like leaving as soon as he gets off. Home. But I had my own house, I had my own life, I had things to do things that I wanted to do, but I felt bad for wanting to go do those things. I felt bad that I wanted to be somewhere else. I felt bad that I didn’t stay for five more minutes, or I felt bad that I didn’t. I couldn’t call my mom today and so I could be at my dad’s mom and dad’s house for like five hours, you know, he would come home from work and I would have to leave and I would get home and I would immediately like feel like I didn’t do enough and I should have stayed long. I shouldn’t have left. As soon as my dad got home, I should have stayed, you know, and I would text my Dad or I would call my mom later and it was just this constant feeling of Never Enough wage nests and just nothing was ever enough. Nothing I ever did nothing I ever said, and it went on like that, just for the entire time and I pretty much dead. Just gave up my whole life because of my mom’s Alzheimer’s. That if I wasn’t there, physically there with her, helping her, or if I wasn’t on the phone talking to her, I was thinking about her. I was doing things for her, I was worried about her, is just in my mind, I never left their house and I never went back to a regular job. I lost friends. You know, I lost, I had no life because that just consumed my life. Everything I did everything I thought about like, oh, that was it for me and a lot of that was because I felt guilty having a life without them. I had, I felt guilty having a life that didn’t have anything to do with them. Like if I was doing something, it had to be with them for them about them and I just guilted myself into like just completely losing myself and not dead. A sense of a life whatsoever. There were times twice during my mom’s illness that my husband and I moved away for his career and even though I was living wage plane ride away from my parents, I still felt like I couldn’t do anything. I couldn’t have a life. I couldn’t enjoy myself. If I was, as I happened to be out with a friend, laughing and having fun, I would immediately think, oh God, you can’t do that. You can’t learn, but we can’t have fun. How dare you? Because God only knows what’s going on at your parents house right now. Like, what do you think your mom and dad are doing right now? They’re not having fun and it was just these this constant like guilt and just thinking that way and beating myself up about everything off and I I didn’t deal with it. Like the only way that or the only thing that really helped me was my writing because I would write about all these things and dead. It helped me to process it and to write it down and it’s very therapeutic for me to get that out. But it didn’t stop the guild, it didn’t like, and those feelings. And that’s why I have such a passion for sharing my story, still now and continuing on and things that I’ve learned because I would love to help some other young women or birth one going through this to not feel such guilt about it. Like it’s not your fault that your parent or and loved one has Alzheimer’s. It’s not their fault and right now I you know treatment there’s no sure, there’s nothing you can do to fix it, you can’t stop it. No matter how many lunches you make for them. No matter how many doctors appointments you take them too. No matter how many walks you off for no matter. You know you can change the journey by being there for them and loving them and trying to make them happy. You’re not always going to be able to do that. And that’s okay, because this isn’t your fault, And there’s nothing that you can do to stop it or to make them better or to fix it. And I just hope that people can realize that and just know that no matter how many things you say, you know, you’re going to feel guilty for that. One thing that you didn’t do and that’s just a vicious pattern to get caught in and it it will never go away.
00:35:02 – 00:40:11
It will never end very destructive. I always felt as a teenager like my entire life. Both my parents are gone and I still feel this way. So I’m asking if you had the same issue before issuing a sick, I never felt like anything I did was good enough. It’s like, you know, I was not a straight A student but I got good grades, but it wasn’t good enough and it just seemed like everything I did was like, oh, that’s good. But maybe you should do X, maybe they are. Just trying to be helpful. I don’t know. But it’s like I have that problem and that’s like the the button down They can push super easily. I might do something and they maybe they just innocently suggest. An addition to what I’m doing or think about it in this like totally innocent. No God, no, you know, bad feelings whatsoever and it’s just like, it’s like they might as well just jab me with a ice pick cuz I just, I just get really uptight. And so I thought that guilt of feeling like everything I did was not enough was an extension of how I felt growing up. So, did you have the same thing when you were growing up? Or I can’t remember, if I asked you this long time ago, I didn’t have that type of feel like my parents just my sister and I were like the center of their world and my mom told everybody about me and my sister thought, what great things we did. And she just would, I always say like, she, there’s this cashier at the grocery store that knew, like my life story and I said, Mom, she doesn’t care. But my mom would just tell her cuz she looked she dead. Was so proud of every little thing that we did. But I did have guilt for going out with my friends or not being home enough or when I was in high school I had a job after school. So I would come home from school, I would go to work, I would come home, I could do my homework and I would feel bad for not spending enough time with my mom. If I’m on the weekend, I went with my friends, I would feel bad that I was going out with my friends and I wasn’t home with my mom. And, you know, my mom kind of made me feel bad about that because she would say, don’t you want to spend time with us? Don’t you want to be home with us? Why do you always have to go out? Why do you always have to be with your friends? But for me, I was just a normal teenager, like that’s a teenagers do but I did not have that sense of guilt and I think that kind of led into my caregiver guilt because it was a lot about like the time for me that I wasn’t I didn’t stay long enough, I was dead. Her long enough, I didn’t I wasn’t on the phone long enough. I should have stayed, you know? And and so that kind of I think played into my guilt. I think a lot of it and I can’t speak for a man because I’m not a man. But I think women just have guilt about everything. Like no matter what you have guilt, it’s just something that I feel like it’s ingrained in a lot of women. You just have that guilt for not taking care of everyone else, and doing everything for everyone. I mean, I feel guilty for them dogs. Like, if I want to go out and go for a run in the morning before I take them for a walk, I feel bad about that and I know I’m going to come home and take them for a walk after my run. But I feel bad that I didn’t take them for a walk first. I mean, it’s just like and I always say to my husband, am I abandoning you? If I go do this, am I abandoning the dog? I go do this and it’s just like this and he’s like, no you’re being ridiculous. You know, you don’t but he doesn’t have that like guilt chip in him, you know. But pretty much young woman that I know. Has that wonder if that’s like a talking about everything. Yeah. It’s like It’s gotta be related to the nurturing part of like female bhauji or psychology or both. I don’t know. But there was a question I was going to ask you. I what I’m hearing is for whatever reason, we feel guilty, that wage are still having a life and we expect to maintain our life while they’re slowly losing theirs, and one of the other things, and this is actually a black box that I’m starting to get on more vocally. More out there is it makes me insane that this country, you know. We’re supposed to be like, yo, Smartest the richest, most technology you know forward-thinking blah blah blah. Somebody gets sick with Alzheimer’s and the like, literally the collective society that goes, well, of course, the family is just going to give up their lives and take care of them and it’s like, I’m sorry, but I’m twenty-five or my I still have a kid at home or why that it’s like, make sure I’m not taking care of somebody else, you know? I that’s not how I felt but that is a completely legitimate thing.
00:40:11 – 00:45:03
Everybody can be a caregiver, you know? I yeah, you’re for people who feel or they’re pressured into being a full-time caregiver because there are no options. We have a situation going on where they are abusive family members that probably have some cognitive impairment. They don’t have a lot of money. There are no options. And so I have been telling this particular family member, I real birth. You don’t have a legal obligation to do anything. For these family members employees, the social workers the church, you do good or neighbor and going to Care once these two people, cause more problems for the small segment of like their Circle, they’re going to, they’re going to harass the crap out of you until you do something and then and he just keeps saying I’m not legally obligated to do anything. I’m just going to keep telling him that like, that’s true, but I don’t think that’s going to serve you. Well, because there are no other options. It makes me insane. Totally insane. Yeah. And you know, and it’s like it was a particular Governor from particular state that I happen to live in that decided that it was against people’s civil civil liberties. If you took mental illness to be locked up then so they let them all out and we have this huge homeless problem and we have no facilities. No, there’s no anything, my husband’s a truck, Pretty manager is a real estate broker. And one of the tenants of house, he manages is next door to a gal. Who does not have family is definitely got cognitive. Problems is also a huge Drinker, has driven her car and run over mailboxes. Sits on the porch and screams and yells at, I don’t know strangers in the cloud. I mean, like, she’s a problem and there’s nothing to do with her. Like, what are we supposed to do with her? That makes me insane. Yeah, that is the soapbox that I am. I’m trying not to climb on too often, but we really should have to do better. And I, I, I just just this week. I can’t remember which one of these episodes coming out first, but if this is a repeat, you guys will just have to hear it again. I had a conversation with caregiver slash this person. Does it’s a streaming entertainment service, for older adults of cognitive impairment sounds like a terrific program. And we ended up on the discussion of we need to start focusing on how people can live better with dementia and Alzheimer’s they have a component in their program where there’s like volunteer opportunities. So people in the earlier stages of dementia, can maybe support each other online like kind of like what we’re doing through Zoom right now. And you know, write letters took two prisoners veterans throughout the other part of the list was, but, you know, something along those lines and it just got me to thinking. It’s like, if our society figured out a way of helping people like our moms live better than maybe we wouldn’t have them stuck at home because that’s the safest place for them and it’s the easiest way to manage their challenges. I don’t know. I think we’d all be better off and I haven’t done it yet, but I’m also going to have you coming up with a guy, his life wage Also has early-onset Alzheimer’s. He had a medical issue that for between his medical issue. Which he’s a pilot and he so you can relate. Cuz long husband was also a pilot had a heart issue. So he got like desk jobs. I think it’s not really detailed in his book and he’s like I don’t really want to do this job again. I’ve done that before I want to you know. So I don’t want to do this job. My life partner has early-onset Alzheimer’s so he retired early which thankfully he was able to do that’s not always a good option for most people and they have traveled the world and they do marathons all over the world which first off that’s like why would you want to do here? You know run I’m a cyclist. I don’t rub, don’t run away from the bear. I don’t run to catch the ice cream truck. I don’t run but I’m I’m going to ask him because you know, we’re taught that, you know, we have to keep their birth. Daily routine, the same and not have a lot of disruptions and changes. Well, heck going all these different countries all the time, and then flying home to switch out the clothing off flying someplace else. That’s all that is, is just constant chain. I can’t wait to talk to him about how I’m wondering if that’s actually better, not that most of us could do that.
00:45:03 – 00:50:22
But I’m just to kind of interesting thought on living better with dementia. Plus the it’s the stimulation has been helping her, obviously, the exercise helps me. So, I’m looking forward to that conversation. So I know you’ve written a second book. It’s not out yet. Is this like right to of the story because I forgot exactly where, where the first one ended. Yeah, so my first choice Park, it’s called learning to weather, the storm a story of life, love, and Alzheimer’s, and that is available now on Amazon that covers like, really the first half of my mom. Journey from the point that we started noticing symptoms, and like, what the different things were that. We saw that we were concerned about how she got her diagnose. Says you planning my wedding. When I made the decision to quit, my full-time job became a caregiver kind of goes through that. And I really talk about like how I came to a place of just acceptance of her disease and that I could still have a relationship with her even though it would be a lot different than the relationship. I had always pictured or the life, I had always pictured that we would have together. I could still have a life with her and a relationship with her and that kind of changed the way that I looked at caregiving. And the way that I just looked at her disease, where it was really, I really went from like thinking about it as how it affected me to thinking about it, how it was affecting her birth. And how could I make her life better and her journey with Alzheimer’s better and happier and more joyful and things like that. So the second book that I am currently editing, actually sending it to an editor friend next week for her to start editing. So hopefully, I don’t want to say when it’ll be out because I, you know, I don’t want to be optimistic, but I’m hoping in the next couple of months, it’ll definitely be done and out, I’m self-publishing. So that’s a great thing about it. I have total control over all of that stuff off, so that book is going to be called when Only Love Remains surviving, my mom’s battle with early-onset Alzheimer’s and in that, in this book that I’m currently still working on, I talked all about the second half of our journey after I had been living away for like a year and half to support my husband’s career job. I had just moved back home and I told my husband, I don’t want to get a job. I just want to be my mom’s caregiver. And I talked about how that went the first year and how I thought I had near nervous breakdown by the end of the year and that led to their transition into hiring professional. In-home caregivers through a care package agency. I talked all about that process. What that was like finding a person and then just sort of all of the thoughts and feelings and everything that went along with that. How it affected my relationship with my dad and then my husband, and I moved away again to support his career. I talked a lot about the real depression that I endured while we were living away. Just being far away from family being far away from my mom and our decision to move back home. And then I talk all about the end of my birth. Life and when she passed away last April and a little bit about the year since that, she the year since she passed away and and what that’s been like, kind of process in my grief and everything. So I feel like there might be a third book because I feel like there’s just so much that it’s just like impossible to forget it all and I just like, I want to include as much as I can and very real and honest and open about my journey. I pretty much don’t leave anything out because I just feel like if I have felt a certain way or had a thought about it, a certain thought, somebody else has felt that and somebody else has had that thought and I just really want so much to be able to relate to other people that are going through it so that they know they’re not alone and so that it can maybe help them either while they’re still on this journey or even I get along. Messages from people who they might say, my mom passed away fifteen years ago. But your writing has helped me process it so much because I never really thought about it that way or I never took heard this and like it’s helped me heal and so it’s really important for me to include as much as I can and just to be as transparent about what it really was like for me off because I just feel like it’s got to help somebody and as long as it can help even one person then I’ll never regret you know writing it and and I also write about I’m not sure if we talked about this before but my mom passed like at the height of the covid-19 in.
00:50:22 – 00:55:05
So we could only have a 10-person graveside service for her funeral, which large contributed to my greased of losing her funeral. You know, my mom has lost so much through this. Ten year battle with Alzheimer’s, we have lost so much as a family and home. I never ever pictured, her funeral being that way. It was not something I ever thought would happen. It was not something I ever considered and it killed me that my mom had to lose her funeral to on top of everything that she had lost along the way everything that we had lost as a family and to have to lose that to wager my mom to have to lose that for us to have to lose the closure of having everyone gathered together and breathing together and it really contributed to change my grief. And and this past year of trying to heal through that, it’s just an added layer of grief to go through. So I write about that in the book as well. I can totally relate, this is Colby out. I believe in June today is April 8th, so it’s four days past the year, mark for your mom. My mom was cremated cuz that’s what my dad did everything from my mom was dictating. And by his choices, which irritates the crap out of me, that’s kind of how they lived. He is interned at a military cemetery. So it’s one hundred and 10%, not my mom. And she still with this, my husband’s like, well, we probably should call the cemetery again. See, if they’ve got caught up because we were literally, I mean, there must be a backlog and the annoying people are probably, I don’t say that critically but people who care more, and the reason I say care more is because I have mixed emotions about putting my mom there, cuz it’s like, it’s my mom was not in the military. My dad was in the Marine Corps for four years. Like two before, they were married a year after something about the that’s a, it’s closed. And I’d have to look at all the dates. That’s pretty close and it’s just not her. I know what she wants and dead. We we are going on a road trip, hopefully, that’s what’s planned. And I’m seriously thinking about taking her with us and sprinkling, her ashes in all of the beautiful places that we’re going to see. We’re going down the West Coast in the Canada. Hopefully, Ontario is currently on like their third lockdown, so that’s not really a positive scenario. Although Ontario is further away from British Columbia. So God lord only knows that this date if we if we bump up to the Canadian border and can’t cross over, we’ll just loop back around. There’s plenty of beautiful places on the west coast to look at. So it’s not a problem as long as I can get out of my town. I’m so tired of this. But I’m seriously, I I had come up with a celebration of life, not plan, cuz there was no place to make. But my mom was a huge sugar fiend. And so, because my dad’s funeral was huge three hundred people lunch catered. It was, it was over. And so I told my sister, you know, dad’s funeral was overwhelming. I have this great idea for Mom. I said, well, just keep it simple. Do you know celebration of life and I said, I think we should just do a dessert bar. And my sister looked at me and she goes, I don’t want to do two events. I’m like, well, if you my mom still in my house and so I’m thinking about just taking her spring, clean her, ashes everywhere, putting sand in the box and giving the Box. My sister going. Here you go. You can put it with Dad now, that’s where I’m at. But often it’s just, it really is just such a huge part of our healing to have some type of closure. And I remember when my mom passed we we had kind, of course, when you know, she’s on hospice and you know that it’s coming and so we started making plans which everyone should do but we had started making plans birth. Add went and got a plot at the cemetery that that they wanted to be at. He went to a funeral home and met with them and had like these plans that just went out the window down. And the day after my mom died, my dad. And I went to the funeral home together to meet with the funeral director and it was just like you can only have 10 people at a car side service.
00:55:05 – 01:00:02
We were allowed to have a viewing also limited to 10 people, this limited to like 45 minutes, just one one time break before birth the graveside service. So not the typical like you have one at night and then you have it maybe again in the morning and then and my parents are Catholics. So they would have wanted to have a full mass for Catholic mass at our church and go to the cemetery to have the burial and then we would have had some like lunch and Gathering type that I mean we didn’t get to do any of that stuff dead. And so, knowing knowing at that time that this is what it’s going to be. Okay? Well, we’ll make the most of it at least, you know, it’s us. The people that matter to her the most and wage at least we can, you know, just trying to find like what we had to be grateful for in that moment that we could still do this and we can still have that and we still had a bagpiper play Amazing Grace at the graveside service. Which was one thing that my mom. Like the only thing that she ever told us, she wanted to have at her funeral was to have Amazing Grace played on the bagpipe. So I was so happy we could still do that for her and little things like that. But you know, we kind of left that day say okay, we’re going to have an even in her obituary I wrote, we will have a Dodge Charger, service celebration of life. At some point in the future we still haven’t had that and I mean, there’s no, no one thought that this was going to go on for this long. No prob Me thought that it would be a year after her death was still haven’t had a memorial service. We thought, maybe we had initially thought, my parents anniversary is August and that just so happened to be when her headstone was finally ready. And we thought, maybe we can do something then, but we couldn’t her birthday, was in January. We thought maybe we can do something for her birthday, but we Clinic her one year was on April. 4th still couldn’t do anything. So it’s hard and you know it’s the immediate family like we’re lucky that we have been able to do things. So with my my dad and my sister and her family but there’s so many more people that want to celebrate her life or remember her and just haven’t been able to do that, and it’s just, it really adds a lot of grief and another layer of loss and just feeling like dead. It sucks like it just sucks that you can’t do that. Yeah, I felt like, you know, cuz we California. I’m in the San Francisco Bay area. So the Seven Counties that make up the area went on lockdown first and so my mom broke her leg on the 8th. I saw on the 10th 12 14th and 16th and June 16th. They said we’re not letting me more visitors in today and I was like, okay and not super thrilled about that. But I had hospice, I had the Care staff was great. So my own know, I don’t know that I want to be here cuz I don’t want to like Risk getting sick. I already felt like I’d taken a risk with her and I am hospital. And so I was like, okay. And so after a week wage, it was like, okay, my mom thinks I’m her best friend. She trusts me, she knows I’m a fun person, takes her out to the park to go watch kids. If we go on much longer, she’s goofing Forget that she’s already combative, and we’re going to have issues. So at about a week. So this would have been, like, the third week of March, I was like, okay, well, there’s no place for me to go. I’ve worked from home for this point now, over 16 years. Everything was canceled. So my rotary meetings, like, I had know if I’d wanted to leave the house. There was no place to go other than the grocery store, which that was no fun. So I just stayed home, I like walked the dogs and that was it. And about day ten of the lock first locked, down, or whatever you want to call it. I was like, okay I have like been home for ten days. I’m going to give us a couple more days and then I’m I’m storming. The gates going in I had a good relationship with the executive director. I was going to call him. I make I’d be like all climbs to her window, like whatever, but I’m coming in, you know, this is just what’s going to happen. But, you know, I was like trying to be reasonable wage. No, nobody really understood what was going on. I knew she was being cared for. I didn’t like not being able to see her. So I was like trying to balance like everybody’s needs and you know and so it got to the edge got two two weeks and they called me and said well, she’s not doing so great. We we think she’d do good with a visit from you which I now have learned was a code for holy crap.
01:00:02 – 01:05:04
She’s going to die. We’ve been to let him in office. So we were very lucky, my sister and my niece and saw her. I saw her Monday morning, my sister, my niece her Monday night and I did a podcast recording on the 31st back in the late morning and they called, and they said come now. And so we went off and we didn’t get there in time, but I did get to see her. I mean she wasn’t awake, but that’s okay. You know and then it was like, please leave. There’s 10 of you in the memory care and we didn’t want anybody in here. And there’s two, it was my sister and I my husband, my daughter her fiance Thursday. My sister’s, you know, for people, my sister’s family is four people in my family. One of my mom’s brothers and her sisters, there’s like literally ten of us and poor executive director was like, I’m really hard not to like edge of a breakdown. Yeah, I feel bad and I looked at him and I said, I’ll come back this weekend and take clean out her stuff. And I know we’re not letting anybody in so that it was like. Okay. So you go home and you’re like, wow. Wow now, yeah, so it’s like life just went on, you know, that my sister’s like, I don’t want to do two Services. I’m like fine. I was just going to do the dessert. Bar celebration of life, my daughter and I on her own. No problem. You know, my sister been like that her whole life so that wasn’t shocking. Well, it was but not terribly and then that still hasn’t happened and so I thought I was like you okay well something around the one-year anniversary, that didn’t happen. Yeah and I thought well let’s maybe do something around Mother’s Day. I don’t think that’s going to happen. So I had somebody I think it was a m Cast. Guess basically, say some Mother’s Day when this is behind us just have a celebration for all moms like my grandmother, my Hundred three year old grandmother home currently on hospice by the time this comes out I’m pretty sure she’ll be gone. My aunt who has been taking care of her forever is going to urge her to go be with her husband found her. Oldest son. And yeah, I was married. My aunt is very religious and like some of us. So when she like announces, that, she’s going to go tell my grandmother it’s time to go. I was like oh God man. I don’t have those kind of you know, I think that but I would never say that to her so I was really surprised. She said that was very funny but you know it’s like I’m just going to do a celebration for my friend’s moms who are gone and my, you know, everybody’s I’m going to steal big fancy Mother’s Day tea and I’ll probably be 20 22, hopefully, please. Yeah, yeah yeah. It felt like dead. Well okay, mom’s gone, just move on with life and it’s like, yeah, just been so I yeah, my heart goes out to everyone who throughout the past year, and, you know, twenty and now it’s a 2021 in having a loved one in a nursing home and not being allowed to go, visit them for months and months or even a year. I mean, depending on where you live, it’s different for everybody. But I just, I can only imagine how heartbreaking and how difficult that is. And, you know, I know for my family, my dad said from the beginning, I never place my mom in a nursing home or a Memory Care Facility of any type, that was just something that he was non-negotiable for him. He was just never going to place her in a facility. And not, there was a time in her illness that my sister. And I were fighting him on that because we felt like she needs more care than we can give her. She’s not, she’s not getting the proper care at home. This is too much for us to manage, she should be in a Memory Care Facility, but he was so adamant against it that we kind of stopped pushing faith and just started pushing for home care. And I talked all about that in my new book, if you’re going to keep her at home, fine, but you need help. We need help. It can’t, you can’t just rely on the family members to do everything and to help out. Because at the time it was just my dad and myself. My sister had a full-time job and she was starting a family life, so she couldn’t be a caregiver and I was really struggling with it. And so that was when we really pushed toward the home care, which thankfully thought that all situated and worked out well and then come 2020 when the pandemic it and all the facilities were being shut down on lockdown and all these things and dead. My mom is lying in a hospital bed in her living room dining and I just thought to myself, if she was in a facility right now, I would not be able to come see her life. And because she was at home, I could go see her. I went to see her almost everyday. I don’t think I went more than like a couple of days without going to visit her at my parents house.
01:05:04 – 01:10:05
And, you know, I was so grateful to be able to still do that. And I just thought to myself. Oh, that’s why she never, you know, when you are going through something and Trust rated and you’re like, why won’t my dad put her in a facility where she can get the care? She needs and this and that and you’re frustrated with them. But in the end I realize like, oh like this is so important that she was home because we were able to see her up until the end and only for the fact that she was still at home. If she had been in a facility, we woke. Been, you know, not allowed to visit. They’ve would have been on lockdown. No one would have been allowed to visit. From what I understand from most people who did have a loved one in a facility wage would get the call. Oh, you’re you know, you’re loved one is in active dying and you’re allowed to come in for a visit and so they would be let in like if and only when their loved one was actively dying, my mom was not really in the act of dying phase. I mean, I saw her. The one day I’ve checked in for the signs of active dying things that I knew to look for. If she doesn’t have anything, I mean, as much as we knew that it was coming and as much as we expected it, we did not expect it when it happened, it was overnight. She was sleeping and she just didn’t wake up and that’s about the most peaceful passing that you could ask for for someone who has Alzheimer’s. And I’m so grateful that that was her experience job. I was so many people, it’s not that way, but I just think to myself, oh, if she was in a facility, I wouldn’t have been allowed to see her for however, many weeks. And I would have just gotten a call one morning that she had passed over night, and it would have been like, what, you know, and I wouldn’t have been there to see her for weeks at by that time. So I’m so grateful that that choice is our experience and just my heart, just really goes out to everyone. That is still dealing with that and not being able to see their loved ones are just not the frequency of visits that you would like. We’re just not being able to touch them. Like, I mean, touch is so important and when you can’t have a verbal communication and things like that, I mean it touches everything back to not be able to touch them hold their hand, to give them a hug. I mean, that’s just heartbreaking just really heartbreaking. Yeah, I have actually been on that particular soapbox dead. My last summer, when we realized this is not going away quickly. All of the long-term care, communities, nursing homes, Etc, needed to figure out a way of keeping them safe and not killing them from isolation. I’m like, a really big. I have not too loudly cuz I don’t want to like offend or upset other people, but every time I see the stories of, you know, getting to see Grandma for the first time in over a year, I’m heart warmed and then I’m angry cuz I’m like, you know, you lost your mom during the pandemic off my mom during the pandemic. And it’s like, you know, a lot of people lost a loved one that they didn’t get to see it all. You know, we I was lucky you know, your mom was at home so you were lucky. Not I mean I’m not lucky but you know what I mean? And it’s like and I’ve said this, a gazillion times people are probably going to start getting tired of hearing it, but it’s like my maternal Grandfather. Said, none of us gets out of a job. Life alive. And so, I think this goes back to living well, with dementia and I have talked to a lot of people who do everything to keep their loved one like wage going and healthy and everything, which is good, but it’s really easy to cross the line into prolonging their dying. It’s like they have a terminal disease. If you’re not familiar with what the end looks like, you need to get familiar with what the end looks like. Because I’ve seen recently people saying well, you know, as family members got, you know, they’re like in early the mid stages of Alzheimer’s. And they’ve got like a breast tumor, which your mom had breast cancer and was treated in and was cured of that. You know. And they’re asking, is it true that the Anastasia could make the dementia worse? Yes, it’s true. It can doctors are going to tell you there’s there’s no like super concrete evidence, it’s all anecdotal. So whatever a dog It tells you just going to be based on their experiences and other people have different experiences. So I don’t when I say doctors, don’t know. It’s not that they don’t want to know. It’s just, I don’t think there’s enough evidence, but it’s like I think it would be so much better. My mom actually had an ovarian tumor for the last Almost year. Well, probably the last year of her life and I didn’t do anything about it cuz it’s like why I would understand.
01:10:05 – 01:15:07
Yeah, I understand the surgery or the treatment or what she needed. I’m like, oh my gosh, all over the nightmares and this is a business breaking news cuz I have not said this on the podcast and thought there was there was only like a handful of, like my husband, knew my daughter knew this support group facilitator new, but I didn’t tell family. I was the health care power of attorney. I know that was the right decision to not treat it and I did ask I asked the the facilitator of our support group. What’s the worst case scenario? Other than dying? If I don’t treat it off? And she told me like sometimes the over it could get twisted and that’s a really painful thing. I’m like okay that sounds ugly. I don’t really want her to deal with that but you know, when she broke her leg, we didn’t do the surgery cuz the the surgeon was super thrilled with like that idea. So I knew it wasn’t really a good idea but she needed Physical Therapy surgery or not. And when she basically took swatted the physical therapist away like he was going to molest her in her bed. I was like, okay, well we made the right decision there so I knew it was the right decision, but, you know, I’m just kind of grateful that the breaking of her leg was the final straw for her body because the end can be so bad. And we were getting close. Yeah, I know people whose family members. You know? It’s just they, there’s just no helping. There’s no quality of life. There’s no, it’s just terrible. So, when you’re, you know, doing everything you can for them. At some point, you have to accept them. You have to let them go because you know the end can be really like my mom like killed me if she know what the end was like. Yeah. So and you know, off in in my new book I talked about in episode that my mom had still don’t really know what it was about a little over a year before she passed away, she had this little episode and someone had suggested that we should she should go to the hospital. Like maybe she had a stroke, you should take her to the hospital, but we made the decision not to because taking her to the hospital would have been far more traumatic and damaging. It’s it sounds harsh to say but at a certain point it’s like she’s going to die anyway and you kind of do want to just give them the most not that. I want that. Not that I’m like, oh, oh, who cares? Just let her die? No, not like that at all. It’s an acceptance of a friend said to me, it is what it is and you’re not blowing it off, but it is what it is. And your mom has a terminal disease is she’s going to die from Alzheimer’s if she, you know, lives that long and it’s just an acceptance of it is what it is. And I’m not going to do anything to make this any harder on her than it already. Is she, I want her to be as comfortable and as happy as she can be for, as long as possible. I’m not going to do anything to prolong her life. That’s why hospices comfort care. That’s what it is. There’s no medical care. There’s nothing to do to make them better or prolong their life, it’s making me uncomfortable so that they can have a as comfortable of a passing as possible and hopefully some dignity in their passing which I know off. Just it’s not the case for a lot of people who died from Alzheimer’s and you know my my mom died from Alzheimer’s. I don’t know what that that night, that that she took her last breath everyone. No one was, you know, my dad was sleeping in the bed next to hers, but he didn’t wake up or anything. And so that’s about as peaceful of a passing as as she could ever have imagined or hoped for her to have because she never got to the point where she was on morphine and crying out in pain. And I mean, we never got to that point. And I know so many people that had a different experience that I’m grateful that, that was not our experience. But yeah, it’s just, it’s knowing, you know, you know, you know, when I’m, you know what, the right thing to do is and, you know, when, and, you know, when to seek medical care, or when to just kind of accept it for what it is, and just keep them as comfortable and as happy as you can log. For as long as you can and just to be there with them and for them. And I mean that’s all you can do. Yep. There’s lots of decisions. That just add to the guilt. Yes, I’m very excited to read. Excuse me, your second book and probably the third and we could be talking about this whole rest of the day, but I have another meeting and then another recording and then Thursday or group meeting is just so this is a for Zoomed a meeting for me.
01:15:07 – 01:17:47
Oh boy. Yeah I’m going to be like non screen tomorrow. It does take your tilt. Take a bath. I’m looking forward to not going to Rotary on zoom and not going to my support group on Zoom. Yeah, this has been so great and I’m so happy that we have this conversation. Some of them was, you know, pretty enlightening about our experiences. And like you said, if it helps one person, then we’ve done our job today. So, yeah, if anybody can go to my Facebook page, Instagram and my blog life love and Alzheimer’s across all platforms and sign up for my email list. So you can get updates about all that good stuff. So I’m looking forward to that. Thank you so much. This has been great. Yes. Thank you like having me. You’re welcome. There’s only one thing I want you to feel guilty about and that’s not paying attention to this next message. I am conducting an audience survey cuz I would really like to know what you guys like what I don’t like and what you might want to see that, I haven’t thought of yet and I know you got a lot of things to do. So to sweeten the pot, I have a fantastic gift bag that I will be giving away to one. Lucky recipient who fills out the survey. Some of the items included are two bottles of nerves Reserve, which is over $100 in value, a fidget blanket or cube hasn’t come yet, so I can’t tell you which one it is a beautiful brand, new children’s books. Some of the handmade greeting cards that I make and a little something just from my home town. I’m still looking for more items to add To the basket. I’m asking past guests and future guests if they have an item they’d like to donate so stay tuned, watch the social media. Make sure you’re signed up for the newsletter cuz it’s definitely going to be talked about their the survey is linked in the show notes. You will find it on my social media page, especially Instagram. It’s in my bio it is in the email newsletter walk-in if this is the first episode you’ve ever listened to fill out the survey, let me know what you think and you’ll be entered to win this lovely gift basket. And you know what’s coming off? All the in your ears again next Tuesday off.