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One time we were sitting there at the piano, and there was a church hymnal, also on the piano. And she said, Oh, I remember when we used to go to church and they had a hymnal like that. And so Deanna, and I said, let's sing one of the songs that we used to sing.
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And since she could play it on the piano, what I did was I use my iPhone, opened up Apple Music put on that song, and you know how you can have the lyrics show, and we stayed together.
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And it was so fun. It was really touching to her like she looked at me, I could just tell she was enjoying it so much. And she got tears in her eyes. And she said, Could I get one of these heights on a home?
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Hello, and welcome to dementia discussions, the podcast for and about caregivers. If you'd like to share your caregiving story with me, I'd love to hear it. Please call me at 310-362-8232 or email me at dementia discussions.net.
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I'm so thrilled to say that a listener reached out and contacted me. And he's here today on the show. If you would like to do that, please. I would love to hear from you. I say that from the heart. Robin, it's great to have you here. Thanks for coming. And being with me here today on the show.
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Thank you so much for inviting me. I just think this is such a great thing that you're doing with this podcast. I have really enjoyed listening to other people's stories. And I really am thrilled that you asked me to be on and I hope that some of what I share and be as helpful to some people as your podcast has been to me.
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I'm sure it will. So we had a conversation about a month or so ago. And you told me that you were caring for your mom up north. Tell us all about your mom. Yeah, thanks.
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So my mom is 89 years old with dementia. She lives in a board and care home in the town where I grew up in Monterey, California. And I live in LA, which is a six hour drive from where she is. So I'm not her caregiver in the sense that I'm with her every day. But I'm the one who manages her care, her finances and all the things that keep her as safe as possible. And I'm the closest family member to her I have a sister on the East Coast. And that said, there's really no other family members. I'm the closest person even though I'm that far away. And one thing like Sir, one of the high level things that I wanted to say about my mom and our relationship is that through this journey, because of this journey that we've been on through the onset of her dementia, and me becoming her person, so to speak, is that she and I are actually closer now than we ever were really, because as a kid, and even into my adult years, my mom and I didn't really have much of a relationship. It's not like we ever had a falling out. We never had a big fight or anything like that. It's just that we were never close, we had a very superficial relationship. And I think a big part of the distance that we've always had, is because of this personality trait that my mom has. And now it makes sense in terms of her dementia. But before the actual onset of her dementia, there were always things about her personality that were just a little odd. And so now to me, it kind of makes sense. Like there was something always there. But just to give like an example, throughout my college in my adult years, if I would call my mom on the phone or go visit her. She's like immediate immediately launch into a discussion of all the books she was reading. And that's not necessarily bad or weird, like sure she loves to read. So she's going to tell me about, but it would be in not in addition to a chit chat or finding out like having a normal conversation.
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It's like, that's literally all she would talk about. So we cannot ask you like how you are?
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Yeah, so she never like I feel like my mom really never even knew me or so much about my life that she still to this day.
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She'll never know now. Right?
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Yeah. And they were just kind of things that she would say that didn't quite make sense. She just really wasn't a nurturing type of mom that was involved in her kids lives, but at the same time, like I can remember two occasions as a kid once in seventh grade once when I was 18. When I ended up in the ER do like I had an injury one time I had a car accident one time in my mom, shut up. She was there at the ER, of course. And I just remember in both of those moments, I just remember having This sense that my mum may not be like other moms, she may not be the type of mom that packs my lunch or comes to my gymnastic meets, or does any of the things really that? Most moms do, but when I need her, she knew there.
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Yeah. And so now I kind of feel like it's the other way round like she needed started. And about 10 years ago, she needed me, and now I'm there to help.
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So she was diagnosed 10 years ago.
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Well, her actual diagnosis was not quite 10 years ago, but 10 years ago is when things started when she started to need help, because she was a hoarder, essentially, she had an apartment that was a hoarding situation, and I can talk more about that it's part of the journey, too.
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Yeah, that must be a big part of the journey. It was so that was was there, like underlying mental illness with all interesting behaviors?
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Yeah, I think so. And I my my father also had mental illness, and it's definitely there. My mother's mom had Alzheimer's, I believe her sister currently has dementia. Her pre her sisters who have already passed away had dementia. So yeah, a lot of family history for sure. That today, what she's like today is she has dementia, but not Alzheimer's. She has been in a wheelchair for about a year and a half. And she needs assistance with all the ADLs except she can feed herself. And in terms of orientation, she knows who I am.
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She knows who my sister is. So she's relatively oriented to time and place. Although there are things that are very strange, like she recently kind of commented like, Oh, I wonder if my parents are still alive. I guess they must be gone. Her dad died 60 years ago, and her mom died like 40 years ago.
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So 10 years ago, he started noticing a change in her memory, but she wasn't diagnosed back then she would have been 79. Yeah. Like, what did you start noticing back then?
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I can remember the exact moment when I knew something was wrong. Just a quick little backstory for context. So it's now may 2016.
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When I say 10 years ago, 2014 was when I needed to help her with the apartment because she was facing a potential eviction.
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May 2016. Mom was 81. So she's still living independently alone in this apartment that I had managed to save and declutter.
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Was it really bad? Or was there things from floor to ceiling?
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Maybe not ceiling, but definitely, really bad? Where? Yeah, piles everywhere. And just I think they call it the goat path, you can walk the front door and walk to the kitchen to the bathroom, but nowhere to sit as a two bedroom apartment. So like every bull everywhere, but fast forward. So now we're in May 2016, Mama's 81, she's still living in this apartment. She was healthy. My sister and I were starting to notice that there were some memory problems.
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She had fallen a couple of times in the recent years, no serious injuries. And the Harding said even though I had decluttered the apartment, the one time of course, it build back up again.
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But for the most part, things were relatively okay. But then she called me one day, and told me that she needed to have cataract surgery. And she was nervous about it. But I reassured her I said, it's routine, and it's safe. And we made all the arrangements. She told me when the pre op was and so I made arrangements to travel it, there'd be there for the pre op, and then we'd go to the surgery, and then afterwards, I would help her. And we talked about all the details and the date dates, and we got it all organized. And this was over a couple of phone calls. And then one day, a few days later, she called me and she said, I have bad news. And Barbara, my heart just sank and I could feel all the blood rush out of my face just from the way she said it.
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And I was immediately I was just afraid to hear what the bad news was because it was just the tone of her voice. And my mom wasn't like that. She wasn't dramatic like that. So I thought, something's really bad. And so I said, What is it mom? And she said, I have to have cataract surgery. In that moment. I was simultaneously extremely relieved and also extremely scared. Yeah, it was just cataract surgery. The fact that she didn't recall that she had already told me this and we'd already made the plan. So that's when I was like My mind instantly went to worst case scenarios about Alzheimer's. And it was a very terrifying moment.
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But, um,
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had your sister been noticing? Yeah, unless two she had,
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yeah, we would talk or email about things. And I started taking notes at that point, because I wanted to just keep a record.
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That was that particular thing was like really jarring. And other things were just kind of normal memory stuff that wasn't too alarming. And my sister and I were like, hypothesizing, like, okay, maybe it's the Ambien that she's taking, too.
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And we'd Google that and we'd find out oh, yeah, that's elderly people shouldn't be taking. I don't know if that's true or not. But we were holding on to this hope that yeah, maybe it's something else. It's not dementia or not Alzheimer's. And so I started taking notes at that point, and just a word doc, and just day to details. And still to this day, I still do it, not for the memory issues, but just throughout all of that hospitalizations, the seizures, all the things and that document now is over 100 pages long. Wow.
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Wow. But that's great. You can look back on it and know, started.
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Sure. Yeah, it's been super helpful. So for anyone out there listening, if you think that would be a good tip for you, it's been very helpful for me. But yeah, in terms of memory, like I was reviewing that word, Doc, last night, just in preparation for our conversation today. And one of the things about the memory is there was this one note that I came across that really sort of shows how memory loss can cause a lot of pain to a family.
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This one particular note that I wrote was, so it was Thanksgiving. 2016. And my husband and I had visited her for Thanksgiving weekend, and we went out to Thanksgiving dinner, we went out to other meals, we took a drive through Big Sur, we made plans to go to church, we spent a lot of time together.
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And then that Sunday morning when we were supposed to go to church, she said she really didn't feel like going and she seemed really off something was wrong. And I got her to talk about it. And turns out she was depressed. And she said she just didn't see much of us while we were there. And it made her feel like we didn't want to be around her. And yet we had spent so much time together in those three days. And she didn't she already had forgotten it. Like that's how fast she would forget things. Yeah. And you had been there then the whole time and and he was thinking that we didn't want to be around her. So sometimes the memory loss was just like, Okay, well, not a big deal that you can't remember what you ate for breakfast. But then some of the things were like, wow, that's really hurtful.
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Absolutely, that she's not remembering that you've been there. Yeah. But not only that, but misinterprets it, right. Yeah,
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exactly. And then there were also things that she forgot that were just really scary, because it was just showing how confused her mind could be. Like there was this time she had a friend at church named Lucille, who's about the same age as she was. And Lucy's daughter passed away. And my mom went to the memorial service, and I called her later that day, and I said, Did you go to the service? And she said, yeah, she told me, Lucille had died. And so she went to Lucile funeral.
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And they said, No, Mom, wait, no, Lucy's daughter. Not we'll see how. And she said, I know. I think Lucille died. And I was like, Wait, how do you confuse that? There with Lois? Some of the things were really scary heart wrenching, of course. But here we are. So now it's eight years later from that went in 2016. And none of my worst case scenarios have materialized. I mean, it's been quite a journey.
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They've been married many scary moments, many stressful times.
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But all in all things are okay.
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My mom is pretty healthy for 89 and she lives in a wonderful board and care home. I'm so grateful for that home and for the caregivers there. And I actually really love the relationship that I have with her and especially after having almost no relationship with her for my whole life.
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That is very sweet. So being home alone, and then having to aboard and care.
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So did were there steps in between that, that yeah, you brought help into her apartment or, well,
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we didn't bring help into the apartment because of the hoarding situation. My mom was always so paranoid about having anybody see her apartment, but thankfully we were able to get her into assisted living. So at first she went into assisted living and then memory care, and that and now she's that important. care that does have memory care, moving, you're into assisted living. One time when I was up there in 2016, visiting her and helping her with the apartment, I took her to the ER in the middle of the night because she woke up having heart palpitations. And that used to happen quite frequently. I now know that she was having seizures, we came to find out.
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But at the time, it didn't know what was going on, we'd go to the ER and everything was fine.
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But what had happened was she'd wake up in a postdoctoral state of the seizure. One of these trips, I took her to the ER, and we had a very lucid moment about talking about like, she was aware of, okay, I can't live on my own forever, basically. She said that, in not so many words, it was a very lucid moment where we were able to talk about okay, Mom, how's this gonna play out?
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Essentially, I asked her what was important to her. And she said, the two most important things were that she had privacy, and that she could stay in the same area where she lived up in at the time, Pacific Grove, Monterey, that area. And then I thought, okay, good. And then there was this assisted living place, a half a mile from where she lived. And the church where she went was right in between the two. So her apartment, or the church than the Assisted Living Center, and I had always kind of had that place in the back of my mind. I didn't know too much about it.
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But I always had in the back of my mind for a few years thinking like, okay, maybe that's the place where mom can move when it comes time. But of course, they didn't really know would I be able to get her to agree to it?
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I didn't know could we afford it? i There was so much I didn't know and I was intimidated to even ask. I was afraid of all of it. Everything was scary. And
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it's so interesting that you're wrong to say I want to stay home. She wasn't even thinking of staying home. She wasn't. Yeah. Right.
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Most people want to stay home.
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Most people want to stay home.
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It is interesting. And she knew that she couldn't she needed help that she wasn't comfortable bringing them into her apartment. Absolutely.
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I think you hit the nail on the head. I think she knew for many years because when I cleaned out her apartment, some of the things that I found she had been collecting brochures of assisted living facilities ever. I don't I think all the way back into her 70s Maybe her 60s she had gotten herself long term care insurance when she retired. So she knew she she did have that in the back of her mind. 100% especially knowing what had happened to her mother and her sisters. And yeah, 100% She didn't want somebody coming into the home because because of the hoarding. But the thing is, so it was one moment in time when she called me one day. So now it's 2017. I'm at work, she calls me and she basically said, Robin, I think it's time to go look at that place on the corner. And I said okay, Mom, what a hell. Yeah, he's shocked.
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I was relieved, relieved, grateful. And a little bit on pins and needles like, okay, is this really going to happen? Or is she going to backpedal, but this thing that really was the tipping point for her was, she called told me in this phone call. She said my checking account is overdrawn by like$1,000. And I said, Oh, okay, well, how did that happen, mom?
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And she didn't know she couldn't remember. Like, did she spend too much money? She couldn't figure out how that happened.
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And that was enough to scare her and say, Okay, it's time and pink goodness. And so then we just we made we just started putting the plans in place and things. I mean, so many things fell into place. So many just gone sens
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have to go over to the place of download? Yes.
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You went out there with her with
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her. So we've been there. It was at that point, owned by this very lovely woman who had owned it for years. And she just so happened to have one room available that was upstairs and at the time my mom could climb stairs, the apartment where she was living, she had to go up three flights of stairs. Wow. So because you had to go upstairs to get to this room and it didn't have an elevator. It was a lower price than most of the rooms and it was $3,000 a month when she first moved in there. And it was Ben she had to share a bathroom but she was okay with that. And she had her level of care was zero. She didn't need any assistance in those days. So it was her room, her meals. It was a lovely room. It had bright sunlight. It was semi private because she had to share a bathroom. And then there's like a common little sitting area that she shared. But she took a look at it. And she said, Yeah, okay. I have a psychotic goodness, thank you. And that's, it was amazing. It was she could afford that. And she could afford it. And she could still do the math in her head. At that point, it said, Okay, well, it's more than currently what I pay for rent, utilities, and food, but it's not that much more, and my income will cover it. And it was like, this is truly amazing.
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Yeah, yeah.
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That's not usually how it goes. So yes, it's truly amazing. Now,
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granted, was it smooth sailing? No, it's true. No, of course. But things fell into place. And then what I had to do over the next four weeks, was empty out her apartment, get her moved in, do all the things while I'm living in LA. So I, every weekend, I would drive up there and spend literally 12 hours a day throughout the weekend or more deep getting rid of stuff in the Apartment, apartment cleaning, and going, my mom couldn't help.
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She knew what I was doing. But she would just go into her bedroom into her bed. Sleep. It was emotionally it was too much for her. Physically, she just couldn't. I had to go through everything. Make sure I wasn't discarding anything important anything of value. But I had to get a two bedroom apartment, filled with stuff condensed down to just what can we fit into this one room that she's moving into? With one closet?
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Yeah. And the gym forget, like, kind of like the cataracts like, would she ever say to you, what are you doing? Why are you getting rid of my things? Oh, Barbara, here's
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the thing throughout those four weekends, no, all she ever expressed to me was gratitude. I don't know what I would have done without you. I can't believe she was so grateful. And then I moved her into assisted living the weekend before we had to be completely out of the apartment. So then I could just really start I mean, I had had one 800 junk, come and like, because goodwill doesn't take everything. And anyway, so I'm doing all of this. And my sister came up that final weekend to help as well. And we got it done in the nick of time.
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And then we still had time to go out to dinner with my mother on that final Sunday night and we had a lovely time. And she was a little sad and weepy. But she was also very grateful and continued to just express gratitude. And I got on the plane that night to fly back home to LA and I just had this sense of Oh my God, thank You God and relief, and everything's okay. Then next morning, like the rug was pulled right out from under me. I don't know, man called me with hatred in her voice. And said, I just want to know what have you done with all my clothes? You had no right to take my things. And she called the police on me. Oh, goodness.
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Washington called which she went to the police department and laid out a police report. Wow.
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It wasn't all smooth sailing, of course. And nothing. Jima that.
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I didn't get arrested for stealing your mother's clothes. Yeah. I must have sense.
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Yeah. And then she eventually I think forgotten about that. And that's one of the blessings of memory loss is that not everything sticks and something he wants to stick some things you don't want to stick?
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You must have been crushed. Oh,
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that was hard. There was also a voicemail that she left me one day that was bad. It was a something he should just never say to your daughter. Yeah,
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it was just cursing you out? Yeah, thank her for getting rid of her clothes or yeah, not
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only that, but it was like, she didn't trust me. She also went to the bank. She had a few to her bank accounts and my name was on all of them. And then she moved all the money. A few days later, she realized that she again she had a lucid moment and she apologized and we rectified that we got we went to the bank. We got that sorted out. But yeah, there were definitely moments like that that were very hard because all I was doing was literally dropping everything that she was the one under percent priority.
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No question.
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Dropping your whole life my whole
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life. I mean, all I wanted to do was make sure she was okay. She was saying And, and she had these moments of paranoia where she thought I had some ulterior motive.
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Yeah, so sorry.
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Those are hard moments to get through.
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Yeah. But I mean, for the most part, I just I really have to say there have been so many things that have fallen into place. So many people who have helped so many things that I was so afraid about of that, that have worked out. And like I said today, she's okay. I love the relationship that we have. Now.
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Yeah, now. So she goes into this assisted living, and I guess her memory deteriorates over time.
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Here's what's interesting, her memory hasn't really changed that much her cognitive ability, there hasn't been a huge decline. I would say, she gets a little more confused. But it's been like, Okay, so 2017 was when she moved into assisted living. So that's now seven years, right? I would say for seven years, there hasn't been drastic decline. Yes, her memories probably worse. And her confusion, that's a little bit more. The reason why she had to move into memory care is all throughout 2022. She kept falling up until we all got shut down for COVID. My mom was living in assisted living, still zero level of care, which means that for listeners who may not know what that means, there's level of care when you live in assisted living. My mom just needed her meals provided to her. And they had to bring her medications that she would never remember to take medication. But she didn't need assistance with the ADLs. Right, like dressing, transferring toileting, she did not need any of that assistance.
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She was independent in all of those things. She also was so independent that she would still go out on the bus every day, look around downtown and find her way back and find her way back. Most of the time. There was one time I got a phone call out of the blue. My phone rings.
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It's a number I don't recognize I answered the phone. It's a very lovely woman who said, Are you robbing? And I said, Yes.
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She said, I have your mother here with me. And my car, said, Okay. And she goes, we were visiting downtown Pacific Grove, and your mother was just wandering and looked a bit lost.
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And so we are driving her back home now. Can you tell us where she lived? That was kind of scary. Because most the time Yes, my mother could get on the bus as she had been doing for so many years, right? It's just ingrained in her memory. And like I said, this assisted living place where we moved her was right down the block just a couple blocks away from where she lives. So she's taking the same bus, the same route, all the way up to when COVID stopped her from doing that. She probably
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would have taken the bus back to her apartment.
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Had the woman not called you.
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Interestingly
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enough? I don't think so. Because Because here's the thing, when we first moved her into assisted women, I was always afraid that, oh, she's going to want to try to go back to her apartment or she's going to tell me Robin, I just want to move back there. But she never did that. And it she never seemed to even remember much about that apartment.
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Interestingly enough. I think my mom has as part of her coping mechanism. And we probably all have some a degree. That is part of my mom's coping mechanism. I think she intentionally blocks things, memories out that are too hurtful. And that could be a lie. But anyway, so COVID happens, lockdown happens. And of course, she can't go out on the bus anymore. She's stuck at home like everybody else. And the most she can do is walk around the property. And when I visit, I have to sit in the parking lot. They made a makeshift thing with a plexiglass, you know, and so her life becomes more isolated, like everybody else's. So throughout all throughout the rest of 2020 2021 She really can't go anywhere. And at the end of 2021, she had a really bad fall, and will back up just a little bit, I guess towards the end of 2021, maybe summer of 2021. I would start to notice when I would visit her and we could go out in the car. We weren't completely locked down at that point. I go to visit her. We'd go out in the car and we'd walk somewhere. And I noticed her balance was really getting bad.
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I mean her walking issue really needed to be using a cane or a walker. And she just wouldn't she would have nothing of it, you know, and she told me that she would but then see what she would do is she would hold the cane in one hand along with her heavy purse which I can do whatever, get her to just leave the purse at home. I mean, you don't need it. But she had walked, take a walk off the block with her purse and her cane in the same hand. And it just became more of a tripping hazard than not using a cane.
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But her balance was really bad.
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And I was really afraid she was going to fall. And then at the end of 2021, she had a bad fall in the middle of the night, and hit her head and it's in the hospital. It was really bad. And then when I actually happened to be there in town, it was Christmas weekend, or my Christmas visit in the middle of the night. So it's after Christmas, middle of the night, I get a phone call. She's in the ER, I drive to the ER, they admit her. She was okay, nothing terrible, but she did have a brain bleed. And so they kept her. And then of course, they didn't want to discharge her.
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They wanted to send her to rehab, the skilled nursing at that point. She had never been to that before. And she was 100% against it. And I tried talking to her into it that nurses everybody tried to persuade her and she would not do it. She ended up discharging hurts and not discharging yourself, what is it called when you owe living
00:31:16.230 --> 00:31:19.619
against medical advice? Yes, ama.
00:31:20.130 --> 00:31:45.029
Okay. And it was horrible. Barbara, it was one of the most lowest points throughout all of this. I felt so scared and I couldn't she's a widow, she 80 something year old woman at that time. It's so strong willed and just would not. And she told me, Robin, you'd get me out of here or I'm just going to take a bus or I was helpless. And so I had to drive her home.
00:31:45.240 --> 00:31:49.740
But home was the assisted living, although she still had to go up and down a staircase there. No,
00:31:49.740 --> 00:32:18.509
sorry. At that point. She was living on a ground level. So no, no more stairs. Yeah. But I had to say goodbye to her. And at the end of that visit, she was so happy to be out of the hospital and be at home. But she was still wobbly as anything. And when she'd walk I mean she there were just so many Molitor, like oh my god, Mom, you're here and then she wouldn't use the cane or wouldn't use it properly. So that was the very end of 2021.
00:32:13.650 --> 00:33:11.759
And then six weeks later, she had a fall and then all throughout 2022 I am not exaggerating. When I said when I say she she fell every four to six weeks. Or I was getting calls all times a day in the middle of the night. She was in the ER, so ers, hospitalizations, seizures on top of all of that. So it was a very tough year. And then that's when we moved her into memory care. Because they explained to me it was a very small it was their memory care at this same assisted living place was just six residents in a little converted house. She'd have more supervision, somebody would be there to help her with all her ADLs. And unfortunately, that did not stop the falling. She still continued to fall. And then eventually we at the end of 2022 we put her in a wheelchair.
00:33:06.509 --> 00:33:15.359
And she's had a couple of falls but not nearly as many. Because she says out of the wheelchair.
00:33:15.390 --> 00:33:36.000
Yeah. Because trying to get an up Yeah. Or in the middle of the night. And this is something that was really helpful. Like, in the middle of the night, one time she got up and tried, I guess to walk to the restroom by herself and fell and hit her head on the nightstand and had a very terrible, awful looking.
00:33:36.150 --> 00:33:52.589
And so the owner of the care home where she now lives, suggested that we get a high low bed. And this is a bed that it's kind of like a hospital bed, but it doesn't have rails. But yes, it raises up in a racist down.
00:33:48.839 --> 00:34:35.460
And he said at night, we'll lower it all the way to the ground. And at first I didn't understand and I said that sounds like no, that sounds like a terrible idea. Because if it's lower to the ground, it's going to make it easier for her to get out of bed. I don't want to make it easier for her to get and he explained he said no. He said it lowers all the way to the ground. So if she were to fall out of bed or try to get out of bed, think about it. Gonna be on her hands and knees. She's not on enough to stand up from all four that are on anything. Oh my city. Yeah, that makes sense. So that was one thing that we implemented. Will they put an alarm? Alarm on her bed alarm on her wheelchair. She is good.
00:34:35.518 --> 00:34:52.918
That's a good thanks. So no major injuries since she's gotten lowered to the lower to the ground. Yeah, that's a big story. Yeah. So now you go up there and when you talk about your relationship kind of getting to a better place. That's where you are now.
00:34:53.130 --> 00:35:40.769
Yeah. And that's you talk about silver linings like I do feel like that's one of the Silver Linings In all of this is, I love the relationship that I have with my mom. She loves the relationship that she has with me. And we have little moments. I mean, sure, like, maybe there are other 89 year olds who are more active and can do different things like take trips and things like that with our daughters, but we can sit and it's just little moments we giggle we'll just sit and sit on the porch in the sunshine, it's like, little moments actually are just as meaningful as anything else. Absolutely. You wouldn't be able to take your mom on a big trip right now.
00:35:40.800 --> 00:35:55.559
So you have, right, yeah. You have this little moment where you can connect with her. We can hold our hand. Yeah, maybe look at a picture and remember something lovely between you two? Yeah,
00:35:56.099 --> 00:35:58.889
absolutely.
00:35:56.099 --> 00:36:56.969
And it's there's also little things that have been so fun to discover, like, one of the last trips up there. We were trying to play the piano. My mom used to always be a piano player. And they have piano in the living room at this care home where she lives. And I always try to get her to play a little piano. And she she'll still play a little bit with like one hand, just her right hand, not both hands. She can't really see that music as well, her. I think I need to get her new glasses, even though she had cataract surgery. Now, I think she needs glasses. But one time we were sitting there at the piano and there was a church hymnal also on the piano. And she said, Oh, I remember when we used to go to church, and they had a hymnal like that and said, Iyanla, and I said, let's sing one of the songs that we used to sing. And since she couldn't play it on the piano, what I did was I use my iPhone, opened up Apple Music, put on that song.
00:36:52.019 --> 00:37:23.099
And you know how you can have the lyrics show. I put on the lyrics. And she could read the lyrics as it was going. And we sang together. And it was so fun. And it touched it. It was really touching to her like she looked at me, I could just tell she was enjoying it so much. And she got tears in her eyes. And she said, Could I get one of these heights on a hall? In Marina say,
00:37:23.340 --> 00:37:33.059
yeah. Can you do that again? And maybe get a video of that? Or a recording of that? Or picture it just even a picture of that of the two?
00:37:30.690 --> 00:37:33.059
Together?
00:37:33.420 --> 00:37:40.199
You do. My husband took a picture and video of us singing together. And we run out of this there. Yeah.
00:37:40.769 --> 00:38:10.380
also love to touch on, one of the things you asked is just for like, tips on like coping and what has worked, what has worked for you. So some of the things are in I'm sure everybody can relate to this is just support from friends. And it's again, it's still little things sometimes that are so big. Like, there were times when I be in the thick of it. Like those times in the hospital or app.
00:38:06.480 --> 00:38:32.670
They're just so scared about different things. And I text my friend groups and I just asked them either to say a prayer or I tell him a little bit about what's going on. And the simple texts that I would get back from them just with kind words or prayer emojis, heart emojis, just those little texts were just so comforting that those go such a long way.
00:38:33.179 --> 00:38:45.059
salutely even though they're not in your sheer Yeah, probably words wouldn't do it. But yeah, ascending hearts and love to you. prayers to you.
00:38:40.289 --> 00:38:46.050
Yeah, absolutely. amazingly powerful in its,
00:38:46.289 --> 00:40:42.869
I often feel like and I think a lot of people feel this way, when you have friends that are going through something difficult. Or in grief, you often feel like you don't know what to say. And there's nothing you can say that's going to make. But it's it was amazing to me how to me I'd rather text in those moments than get on the phone with somebody. And when I did whenever I reached out via text, the little texts that would come back, they were just hugely helpful, even though it's just simple. Absolutely, yes. There was one other big thing that was that's really helpful to me. And that's meditation. I had a meditation practice prior to 2021 23 to when things started to get really hard. But at the end of 2021, I actually signed up for a meditation teacher training course. It started in January of 2022. And my idea was my goal was I wanted to become a certified meditation teacher and then volunteer at care homes like where my mom lives and for senior rec centers or something and lead meditation for seniors because I just had found how comforting it was to me and I thought it could be something that would help seniors with anxiety or find peace. Great idea. Yeah, so that was the goal. And then what ended up happening that I didn't expect was I just took my meditation practice so much deeper. That was also if you recall, 2022 was the year when everything just got really crazy with my mom's balls and seizures and all the hospitalizations. And so what's been so helpful to me is learning how to be with these emotions of fear and anxiety and unease. And being able to separate the physical sensations. This is what I'm physically sensing and feeling in my body, I can handle that.
00:40:37.769 --> 00:41:04.590
What's crazy, where we get really caught up is where our mind goes, right? And your mind starts to make all these stories of worst case scenarios. But in a meditation practice, and then bring it into real life. What I find when I just try to focus on okay, what's my actual, what am I actually experiencing right now? Oh, it's feeling okay. I can handle that.
00:41:04.980 --> 00:41:15.449
The worst case scenario is not happening. Oh, just between your ears just in your head. Right? Where Your Feet are, where your feet are is right? No worst case scenario?
00:41:15.900 --> 00:41:21.690
That's right, exactly. So to bring yourself kind of back to that center position. Wait a minute, deep breaths.
00:41:22.050 --> 00:41:22.949
Exactly.
00:41:23.130 --> 00:41:31.590
It's all anxiety. My fear? Yeah. So you're trying to like work your way through that. Yeah. Just
00:41:31.590 --> 00:41:49.170
to be able to recognize, okay, I can be with these feelings, I can feel these feelings. At that I can control my mind. I have control over my mind. My mind doesn't have to tell these crazy stories, and send me into a whirlwind.
00:41:49.889 --> 00:41:52.230
That's big.
00:41:49.889 --> 00:41:59.159
That's meditation is a great thing. I bet during some of these really awful times. And meditations can be short, right?
00:41:56.219 --> 00:42:03.119
So it doesn't you don't have to sit down for a 45 minute break.
00:41:59.159 --> 00:42:03.119
Like just a free lunch?
00:42:03.480 --> 00:42:15.059
Absolutely. I didn't let me get really grounded here. Hold on a minute. I'm ready to think about really what's happening and like, my fear is taking me away.
00:42:11.760 --> 00:42:16.739
It's getting away from me. It's not actually happening. That's
00:42:16.739 --> 00:42:45.869
right. And when you I think developing that a daily meditation practice, it's also it helps you not just in those milk moments when you're sitting on the cushion, but you learn to bring it into throughout your life. And that's a little bit hard for me, I have to admit I that's really where the key is, is it's not just when you're on the cushion, it's you're training your mind to carry this through into life.
00:42:46.110 --> 00:42:53.190
Moment by moment when you need it. Yeah, your everyday like those hard phone calls in the middle of the night. Yeah.
00:42:53.909 --> 00:43:02.789
I'm glad that's so helpful for you. I'm glad meditation was a really is a coping mechanism for me. You didn't really talk about this.
00:43:00.300 --> 00:43:12.900
You are a long distance caregiver. It doesn't matter the distance you're considered a long distance caregivers. Yeah, you do have a trip to make to get along. And you do drop everything to make that trip.
00:43:12.989 --> 00:43:14.670
You have. Yeah.
00:43:14.730 --> 00:43:49.679
And of course, over the years, I've, I sit in still to this day, I wonder to move my mom down here to LA. She and I've talked about it many times. And there's just a lot of pros and cons number one thing she doesn't want to move. She wants to see me more she wants. She gets sad when I leave. But she really doesn't want to live in LA. She doesn't want to live leave the only area she's ever known. She's lived in Monterey, that area since 1976.
00:43:43.769 --> 00:44:28.019
She doesn't even remember living anywhere else, even though like we lived in New York. I was born in New York, she New York from age 20 till about 40. She doesn't remember that at all. In fact, one half she asked me she goes, have you ever been to New York? That's where you gave birth to me, mom. She's in the only area that that she can remember. She remembers Canada a little bit. She grew up. She was born in Canada. Yeah, it's just too scary for her to move. And I told myself that it would probably be a hard adjustment, but she would adjust. I'm still not ruling out moving her down to LA but it wouldn't be easy.
00:44:24.000 --> 00:44:41.280
And for now. Anyway, she still lives there. And I go up throughout 2022 When she was having all those falls and everything I was going up every three or four weeks and now I go up every six to eight weeks since are more stable with things and more stable.
00:44:41.730 --> 00:44:48.690
So you did talk about having a sister. Have there been other people that have been helpful to you during this whole journey?
00:44:49.050 --> 00:45:06.780
Yeah, a lot of people and my sister for sure. Even though my sister lives on the East Coast and she can't physically be there as much as I am. She's of course so supportive and one of the very specific thing that my sister did that I had no idea about.
00:45:02.550 --> 00:45:10.829
And I don't think I ever would have found this out, because it's never come across my radar.
00:45:11.159 --> 00:46:01.530
But my mother gets VA benefits she always has ever since my father passed away, she gets as a widow, she gets VA benefits because my dad had 100% disability from the army. But there's this other part of VA benefits called Aiden attendance that my sister found out about, and I think it's for people who need assisted living or nursing home care. And because my father served during war time, sure enough, that gave us additional funds. And my sister found out about that and did the paperwork and we got that approved. So my sister's super supportive, even though she cannot, she always tells me how grateful she is to me for doing what I do. But she's also super supported as well. That's
00:46:01.530 --> 00:46:10.019
amazing, because it is hard to get that AID and ATTENDANCE benefit. So good. For persevering and getting your mom deserves it.
00:46:10.230 --> 00:46:14.190
Absolutely.
00:46:10.230 --> 00:46:30.420
Yeah, that's great. My husband, also so supportive, he's by my side whenever I need him to drive up there with maybe with me even. I remember one moment when he was with me when we were cleaning out the apartment before we moved her. I was there by myself most of the weekends.
00:46:30.420 --> 00:47:35.099
But one weekend, he was there with me. And I remember this one moment, I was in her the second bedroom that had just become like storage for things, 30 years worth of stuff. And I remember a moment of sheer overwhelm. And I am a planner, and I am an organizer through and through. And I just had a moment of sheer overwhelm, thinking about the timeline how, like how much time we had to get this done, and only on weekends, and I sat down, I said, I don't think I can do this. And he said to me, he said, See that pile right there. He said, That's where we're starting, we're doing this pile of rubbish. And he just broke it down and got us started. And that little moment was everything. Thank goodness, he was there. In goodness, he was there. And now when we go visit my mom, He's so calm. And he's such a just a rock. And he's great being around the other. My mom and the other residents in this care home. He has such a way a lot of people.
00:47:30.539 --> 00:47:49.829
I think when they're around people with dementia, they'll have a tendency to speak to the person as if they're a child or I hate him. My husband is so good at talking to these other people, even though the conversation from there and may not be making a lot of sense.
00:47:49.829 --> 00:47:53.639
They'll just have a conversation with them as if nothing's wrong.
00:47:53.699 --> 00:48:15.690
And it is the greatest thing to see. I love seeing him with these elderly people. I'm sure they love him too. Yeah. And then I have to mention my friend Bonnie, she's my friend from childhood. And she happens to live just minutes away from where my mom currently lives.
00:48:09.659 --> 00:48:27.719
Really? Yeah. Wow. Yeah. And she and her husband have just opened up their house to me. So anytime I need to go up there. And I always have a place to stay. And that's a huge support as well.
00:48:24.539 --> 00:48:42.449
Not just a place to stay, but a place to stay where I know. I'm considered like family and it is just such a comfort, especially after a hard day is like maybe I was in the hospital that day or the nursing home and got all this stress and I just come home to Bonnie's house and
00:48:42.840 --> 00:49:00.449
it's wonderful and you need that right? Yeah, that a cold hotel room? Yeah, yeah. You have a real home to go back to your friends. Almost my whole life. Yeah. Do you ever like go back there and just crumble in tears? Like, yeah, some of this stuff feels so big.
00:49:01.349 --> 00:49:27.510
Yeah, it hits me hit weird moments. There was this one time and I was at Bonnie's house. And nobody was home Bonnie and her husband had left for work and I Alliance on Aging, I think as who I called, my mom kept falling and I didn't know why. And I didn't even know what question I wanted to ask. I just needed support. And I called and I got this person's voicemail. And I started to leave a very
00:49:28.739 --> 00:49:48.869
Georgia say Hi, my name is Robin and I wanted to and then I just burst into tears. I just was crying hunt person's voicemail, or I mean these things are so overwhelming that you've talked about and it's really fallen on your shoulders. This is big stuff.
00:49:44.070 --> 00:49:55.949
Moving your mom unpacking a whole bunch apartment have oodles of stuff, decades of things. I mean, yeah, that's a long has
00:49:55.949 --> 00:51:15.750
one person told me that a little bit of advice. This was a omit at the end of 2022. My mom was in a nursing home, the Assisted Living Center where she lived, which our memory care where she lived, it was not an option to go back there because it, it was not a good place. In the end, we needed to move her to a new place. And everything was again, overwhelming. I was so scared, how am I going to do this? How am I going to get my mom to agree to move like all the things when she's a woman who does placements, right, she helps people find, and I thought I had known all the places in this area. And she was the one who told me about the Gordon care home where my mom currently lives and so grateful because I did not know about it. But in one moment, I said, Oh, my gosh, Carol, I said, there's so much to do. How are we going to do this? And she said, Robin, she goes, Do you know how you eat an elephant? I said no. She said one bite at a time. And it was the first time I'd ever heard that saying, you know, it's just so true. It's like, you can't think about the whole thing. You have to end up at a time. It sounds like wow. Yeah. So that's good advice to caregivers. Yeah, these things that's just seems so overwhelming. And you did them one step at a time. Yeah.
00:51:15.780 --> 00:51:20.760
And it all somehow worked out.
00:51:15.780 --> 00:51:32.670
And it did. So many things have worked out. And I learned now not to, like, there are these moments where everything is worked out and everything's okay. But that doesn't mean that tomorrow, something else could happen. And I know that.
00:51:33.000 --> 00:51:35.070
And that's why you have your meditation practice.
00:51:36.360 --> 00:51:38.969
than than a lot of people to see your
00:51:38.969 --> 00:51:46.139
husband and your sister. Yeah. Bonnie is kind of created the support network.
00:51:43.139 --> 00:51:46.139
Yes,
00:51:46.559 --> 00:51:49.980
absolutely.
00:51:46.559 --> 00:51:51.780
And your podcast and anything things that are out there for people to help.
00:51:52.170 --> 00:51:54.539
I'm glad I thank goodness for all these things.
00:51:54.630 --> 00:52:07.800
It gets you through. Otherwise, you'd be a puddle on the bottom of your bed? Probably. Yeah, if there was any other advice, you'd want to give your Converse, which you've given a lot of great advice today. But anything else you can think of?
00:52:08.039 --> 00:52:10.590
That kind of would wrap us up?
00:52:08.039 --> 00:52:10.590
Yeah,
00:52:10.619 --> 00:52:24.960
because I think probably everybody can relate to this is just enjoy the little moments. Because when somebody has dementia, life just isn't the same. Your relationship just isn't the same as what it used to the end.
00:52:24.989 --> 00:52:41.070
That's hard. And that's sad. But enjoy the little moments because though for me, it's been there's moments of smiles, there's moments of laughter. Like I said, the porch time in the sunshine, singing, these little moments are
00:52:41.159 --> 00:52:46.409
just everything.
00:52:41.159 --> 00:52:50.280
Small moves. Yeah. Robin, thank you for sharing your journey with us. I really appreciate it.
00:52:50.280 --> 00:52:57.269
And I agree so many people will relate to so much of that. So thank you for sharing how you personally got through all of this.
00:52:58.019 --> 00:53:16.349
I appreciate that. Thank you. And thank you for having this podcast. It's just been so helpful to me to be able to listen to other people's stories because I feel like sometimes just hearing someone talk about something that you can relate to. It's just really comforting. So thank you for inviting me. Absolutely.
00:53:16.380 --> 00:53:17.190
My pleasure.
00:53:19.980 --> 00:53:41.400
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00:53:41.880 --> 00:53:46.469
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