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J Smiles is joined by Susan - a daughter, wife, mom and high-powered executive who found herself leading the caregiver charge when was diagnosed with early onset ALZ.
Susan's mom was living independently and completely self-sufficient. Susan was traveling the world with her dream job. Overnight, or so it seemed, ALZ robbed both of them. Listen in as J pulls apart Susan's journey, weaves in her own and injects humor like only she can.
EPISODE Show Notes:
National Academy of Elder Care Lawyers:
https://www.naela.org
Broyles Alzheimer’s Playbook:
https://www.broylesfoundation.org/playbook/
The Green House Project
https://thegreenhouseproject.org
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It was really one day she said, Okay, can you please help me program the GPS, I need to go home. So she needed to program the GPS from my house to her house. And she had driven that, you know, probably for a couple years and for her to need the GPS to go home. I was like, oh, something is wrong, like, you know, humans forget things to lose things. And, you know, kind of my husband especially was a big advocate, Oh, don't worry about old age, like no big deal. And I'm like, No, I think something's wrong with grandma. Like, I don't know, but I think something's wrong. And so we continued to watch it and you know, that was really like the first sign with her needing that GPS to get home.
J Smiles:Parenting UP caregiving adventures with comdien J Smiles, is the intense journey of unexpectedly being fully responsible for the well being of my mom for almost a decade. I've been chipping away at the unknown, advocating for her, and pushing also arms awareness on anyone and anything with a heartbeat. Spoiler Alert- I started comedy because this stuff is so heavy, be ready for the jokes. Caregiver newbies, OGs, village members trying to just prop up a caregiver, you are in the right place.
Zetty:Hi this is Zetty. I hope you enjoy my daughter's podcast. Is that ok?
J Smiles:Okay. Today's episode, balancing pain, passion and professional life, a conversation with Susan. Parenting Up family, we have an amazing surprise guests and I say surprise because I actually met her and what I'm going to call these caregiving digital streets. We never met in person, but it's our love and our passion for our mothers, for caregiving, and for trying to beat the awful disease of Alzheimer's is how we came to know one another. So my surprise guest is Susan, how are you Susan?
Susan:I'm doing great. Thank you so much for having me. This is something I'm so passionate about. And I'm just thrilled to be here and you know, to support other caregivers. So thank you for allowing me to visit with you today.
J Smiles:Of course, so grateful because I got to tell you guys Parenting Up family, Susan has really been a trooper, we have had so many snafus of trying to get together just like the all simers devil was trying to keep us apart with the number of mishaps in our personal lives and just things try and we said no, we are going to do this interview no matter what. Because you can tell when another person is really committed to helping others and that's what I could find in Susan. We met on clubhouse, which is a social media platform and we were talking about caregiving. And I was a panelist at the time and talking about my journey with Zetty and Susan was talking to me about her mom. And well her mom is no longer with us, physically, Susan was there to share her stories. And I thought, man, how wonderful is that? that a person who is actually not physically daily in the trenches anymore, is still so tethered to the cause that she has logged in to a social media platform, to listen, to heal, and to share. So Susan, tell us how you came to know that your mother even had the disease?
Susan:Well, kind of a long story, I guess. I'll try to make it brief. We moved to Arkansas, when my boys were in elementary school, and they had had au pairs and nannies. You know, growing up daycare, you know, we tried everything because my husband and I both worked. And when we moved to Arkansas, there were no nannies or au pairs. So I reached out to, you know, my mom with you know, I'm so upset. I don't know what I'm going to do about childcare. And she said, Listen, I'm getting up there, like I'm gonna retire and I'm gonna move to Arkansas and I will help you with the boys. And so she moved to Arkansas. She lived with us for a little bit and then she got her own place. And I'm so thankful that she did that because I think she knew that she had it at that point. So she's very independent woman, I'm an only child, she you know, my dad and her divorced when I was 16, so just very independent. She was so proud of herself because she got her map out right like physical paper map, and drove from North Carolina to Arkansas. But as she was there, you know, complicated life right to boys sports everywhere, like, you know, we're all everywhere. My husband's busy traveling like so much complexity and so I always make an Outlook calendar for her with everything in it. And
J Smiles:One moment, Susan......I just want to say for a woman to get out a paper map to drive from North Carolina, we're talking about an old school Atlas. You know, where this is no digital, anything. There's no computer talking in saying turn left, watch out, stalled car on the right hand lane; that is major. So that's a lot of love and you are right she had to have been a extremely independent woman and really loved you and her grandsons.
Susan:Oh, yeah, yeah only child so
J Smiles:You know what, and I'm an only child too so I get it, I get it. And they are they, they feel some kind of way about their daughters.
Susan:Yep. Yeah. So anyway, I would print out this Outlook calendar for her and she was following Outlook calendar. And, you know, Arkansas's news, so I got her GPS, and so she could have the GPS and, you know, could use that to get around town. And after about, you know, two years, I guess, I noticed her starting to depend on the GPS more and more, and knew the Outlook calendar was getting a little bit more complex for her to understand. But it was really one day, she said, Okay, can you please help me program the GPS, I need to go home. So she needed to program the GPS from my house, to her house. And she had driven that, you know, probably for a couple years and for her to, to need the GPS to go home. I was like, oh, something is wrong, like, you know, and human, forget things and lose things. And you know, kind of my husband especially was a big advocate, Oh, don't worry about old age, like no big deal. And I'm like, No, I think something's wrong with grandma. Like, I don't know, but I think something's wrong. And so we continued to, you know, to watch it and, and, you know, that was really like the first sign, was her needing that GPS to get home.
J Smiles:Did she notice it herself? Do you think she felt something orr did she think oh, you know, maybe I just didn't have enough rest last night or did it become a conversation within the family? Okay, Mom, I did program the GPS. So you got home last night, but we need to sit down and have a larger conversation? What happened from that moment?
Susan:Yeah. So you know, I was like, I think you need to go to doctor, let's go get you checked out. Maybe, you know, there's some issue with heart like you're not getting enough blood flow, like, you know, tried to like rule out, you know, everything else, right
J Smiles:How old? Was she?
Susan:She was 66.
J Smiles:That's really young.
Susan:It's very young, right?
J Smiles:Very young yeah
Susan:Yeah, so she had she was diagnosed with early onset Alzheimer's. But yeah, so I took her to, you know, doctors that are all checked out every every kind of, you know, exam possible. And, you know, they're like, you probably should get her tested for memory loss or dementia, whatever. And I was like, okay, so I guess she was like, probably 67 when we went and got her tested for dementia. And you know, they said, Well, she has Alzheimer's, you know, they did the memory test where they asked a bunch of questions. And like, yeah, for sure she has Alzheimer's. And so you know, when we talked about it, right, like, She's like, Yeah, I just have dementia, whatever, no big deal. And she had, you know, some, she was taking medication on her heart. And she would always take the heart medication, she wouldn't take her dementia, the Namenda or whatever, airstep whatever they were prescribing to her, she would only take that. And I'm like, Mom, if you don't take the other stuff for your brain, it's not going to tell your heart to work. And I'm like, you have to take both, you can't just take one or the other. You got to take both to keep you going to keep your body alive. Keep your brain alive. And she'd be like, Oh, that's
J Smiles:Okay just dementia, don't worry about it. And I'm like, I'm worried about it mom. Just dementia?? So what, how did so what did she Okay, just like, so maybe just some old school enility? Like ah, I'm just a little senile just it' think dementia was when she aid just dementia?
Susan:Memory loss regular, no big deal. I'm gonn keep my ticker going Yeah
J Smiles:all right.
Susan:Yeah like seriously, but I'll tell you, she was very aware of it. Because I was like, okay, mom like this is we've got to like, talk about this like, what. You know, what do you want to do? She's like, okay, so I knew I had dementia. And I was like, Alright, it's Alzheimer's, but Okay, Mom, I'm not going to correct you because you never correct anybody with dementia or Alzheimer's; like, you gotta just roll with the punches. I learned that so I was like, Okay, so what are we going to what are we going to do mom, like, you know, she's like, first thing I don't want you to ever stop; you know, your career changed your life for me. I don't ever want to stop that. She's like, you need to have a full life. So don't ever let my care come in the way of you living your life. And I mean, like, so amazing for her to say that to me, right, especially as the only child, but she was so proud, you know, like, first generation, you know, college grad and, and that side of the family and just a proud, proud Mama. And so she wanted me to make sure that I had a full life and that my boys, you know, therefore my boys would do whatever I needed to do for my family and my career. And I really commend her for saying that to me. And taking that pressure, even though I will say it's a ton of pressure being a caregiver, right, but at least that like, knowing that she didn't want to hold me back from my life, it was really powerful for her to be able to think that way.
J Smiles:Absolutely. That's, that is powerful for her to release you in that way. So how long was it before you had to get involved with her care?
Susan:So she was diagnosed in 2010 and which was, it was pretty quickly after that, so I had a pretty big job. And I was traveling all over the world, and she was living independently. And you know, I always check out her before I'd leave, and then the day that I come back, I would go and check on her. And I think I should step back a little bit. So prior to that Christmas, she couldn't come on Christmas vacation with us. So we had gone we had totally decorate her house, put you know, she had a beautiful white picket fence around her house, but all the wreaths and the lights and garland all around it put up a Christmas tree it's beautiful. And we did that on Saturday, we were gonna leave the following Saturday. On Friday, I come before we leave, and she had taken everything down, she's like Christmas is over and I was like, oh my gosh. Like I wanted her to have a nice Christmas. I had packages there. I like you know, like all this stuff for her. I was like, Oh, Mom, I was like, Okay, well, you know, like, it just like broke my hearts like, hey, that's that's, you know, a sign she doesn't know it's Christmas is not for another week, but okay. But then anyway, a few months later, I had come back from a business trip and you know, knock on the door, she opens the door and she's standing there and she's like, hey, top wide open, no bra on, Come on in it's good to see you.
J Smiles:Okay.
Susan:Yeah. And I was like, okay, mom, and I opened the fridge. Her she had food that had smelled bad, like, she must have left chicken out or something like and I was like, Okay, this has to end like, you can no longer live independently. And it freaked me out. Right? Like, I was like, I'm a terrible daughter. How did it get to this point? And I was like, okay, and I said, so mom, guess what, you are fine. It's finally your time, it's finally time for you to retire. And I'm going to find you a place where they're going to cook for you. And they're gonna make sure you get nice baths and they're gonna do your hair for you. And they're going to do your laundry. I was trying to do a hard sell like,
J Smiles:You're like this is what I do, I'm in sales. How can I sell my mother on the idea that it's time for you to get pampered and just sit back and let someone wait on you? And you're like, I don't know if she's gonna go for this. Now, let me back up a little bit would your mom normally go on Christmas vacation with you, but that particular year, was she not well enough to go?
Susan:Well, a few years prior to that she had gone we go skiing on vacation at Christmas, and she had gotten really bad altitude sickness. And she's like, I can't ever go back there again. So she hadn't gone for a few years, she would go to see your sisters or whatever. But she had a falling out with her sisters, so she was home by herself for that Christmas.
J Smiles:Okay, so then you realize mom can't live independently. You do the hard sale, does it work initially?
Susan:Well, at first she's like, well, I don't need all this. And I was like, No, Mom, I think it'd be really great for you. And you're gonna make friends, you'll be around all kinds of, you know, people your age and whatnot. And my I'm so thankful because I had have a friend that was going through the same thing and she was in an assisted living facility. And I was able to, like lean on her for all kinds of support about how to even go about finding the right assisted living facilities and whatnot. And I was able to get my mom into the same facility as her mom.
J Smiles:That's amazing.
Susan:Yeah
J Smiles:That's amazing. And so I'm going to pause right here and let anyone know who's listening, Parenting Up family, this is a time where please lean on any relative, friend, coworker. If you've ever heard anyone and backed me up on this, Susan, if you agree if you've ever heard anyone talk about they have a relative who was in assisted living on a memory care facility. And you're like me, I think maybe three years ago at my college reunion I think someone said that their parents might be in one, when you're trying to find a facility and you've never done it before any lead is worth following up on because it's difficult to locate one. It's very, it's challenging to figure out which one is worth its salt. And then you got to get on a waiting list and it can't be here, right. Now, I don't have any kids living, but I don't need to get right now. Right, exactly. Right. And sometimes you have to get on a list two years in advance. But if you know someone who has a loved one already in the facility, sometimes you can skip line. So that's beautiful that you were able to utilize that resource of a friend who already had a parent there. So you got her in there. Did you like that facility?
Susan:I did. I did. I liked it a lot. Yeah. And you know, like, just talking about that support system, when I started letting people know that my mom had Alzheimer's to other friends. I had one friend who told me and then another one's like, Oh, well, this person's mom has Alzheimer's and this person, all of these wonderful women came out of the woodwork and you know, like, here's what's gonna happen, you know, like, gave me so much amazing, you know, like tips and, and tricks. And you know, I'll tell you one of them was like, have you read Frank Boyles book on Alzheimer's? It's like a super quick read, like, my kids read it. And it's like, kind of like cliffnotes.
J Smiles:What's the title? Can you say the title for? Do you
Susan:I think it's Frank Boyle's playbook playbook for remember? Alzheimer's. Yeah, so he was a football. You're an Arkansas football coach, or I don't know exactly. I'm sorry, Razorback fans. But yeah, so he, he had Alzheimer's and his wife created this book, you know, and they have a great all centers Resource Center here in Northwest Arkansas. And the book was fantastic. There's so many, like little tips in there, you know, like, like, one thing is that, you know, when somebody passes away, you don't ever want to tell them that they're going to be sad, right? And then they're going to ask about that person. And then they're going to be sad again. And you don't want to ever I mean, think about when you hear that somebody passed away, you don't want to relive that over and over again. It's just, it's just the worst thing possible. And so, you know, there's all kinds of just, you know, tips in there. And like I said, my boys read it, and they were in high school at the time. And, you know, I felt like it was a good quick read, that kind of just gets you up to speed. You know, in no time granted, this doesn't tell you everything.
J Smiles:Right? That does sound like a quick read, is very useful in Alzheimer's. So many of the books that are out there, you feel like you're reading an encyclopedia. And it's already such a heavy diagnosis.
Susan:Right
J Smiles:And then when somebody is asking you to read the dictionary, you're like, Oh, God, I don't want to read. Even when you're mentioning a book, that's a quick read that's giving you very practical tools like hey, don't ever tell Alzheimer's sufferer that a person that they knew or loved, died period, full stop; that's a rule. I learned that the hard way with my mother and I don't do it anymore. I don't tell her anything that's painful. I don't tell her we're at war. She doesn't know about any thing that would make her super sad about death, or war or a natural disaster. Anything that will make her say no, no, jG When did that happen? Well, did we help? Or did we go? Or are they okay? If that would ever be the answer? Susan, then I just don't tell her. I stop and think what? Oh, no, no, no, good. I'm not going to tell her. I'm not going to tell her. How did your mom adjust to that facility?
Susan:She liked it fine. You know, she was content there. You know and the great thing about having my friend's mom there, we followed each other like to multiple different assisted livings as our parents progressed, was that she could check on my mom, I could check on her mom, like so they had in she would go during the day, I would go at night, you know, like we had very different schedules to stay at home mom. So it worked out really, really well to have that relationship.
J Smiles:So as your mom progress through the different facilities, how did you know when it was time to move? Did the the staff tell you or did you pick up on certain things?
Susan:I never wanted to move my mom because I would read right, ike, you should never you should move them because every time they move in, they, you know, take a step backwards. And so I wanted to always just find the right facility for her and there was one place that both of us, both my friend Kathleen and I , our moms were on a waitlist for back to that.
J Smiles:Okay
Susan:So the daycare and we both finally got in into that facility. And so the reason we moved in there is it was closer to closer to us, it was brand new. And they did this thing is called the greenhouse is the way that they treated Alzheimer's patients. And it's something that came from Pennsylvania like the like, they had the walls painted a certain way plates were red, like it was all very catered to Alzheimer's and givin them the best quality of lif that they could come and it wa all women and they each ha their room. And it was a hous like is very, very lovely. An that was super, supe environment for my mom and al the other women in there. An I'll tell you a day that yo know talk about like meeting different people with Alzheimer's and so fascinating to me that like how you know, you know, my mom, at one point, she would go out to a restaurant and she'd all of a sudden
J Smiles:She's like this place, we have got to bust this joint. started speaking Spanish, like, total like full on Spanish, right? And I was like, I have not heard her speak Spanish, I don't think ever that I could remember. I'm sure she did a lot when I was younger. Okay, she's the Spanish, but I could not believe it just fluent. Just start talking and you know, it as just crazy to me. And then y friend's mom, she wrote a etter, and then had letters verywhere and say, Hey, I need o get out of here and she w ote a note to her brother who h s just passed me out back in t e red pickup truck. I've got t get out of here. Brother had a red pickup truck, I guess in h gh school or whatever. The rules are too strict. There's no beer and they don't let me dance after 10pm, that's amazing. So your mother is your mother was Hispanic but you hadn't heard her speak Spanish?
Susan:No. I mean, so little
J Smiles:Like so little that you were like, I forgot. I forgot she could and then it just was totally fluent.
Susan:Yeah, yeah, it was crazy, crazy.
J Smiles:Did it appear to progress the way you thought it would according to medical science? Like she started? Okay, it didn't. So you did? So share with the Parenting Up family the way that you saw progress? Was it that she stopped walking or talking? Or did she forget you or your children? What were the things that you saw start to dissipate?
Susan:I think it was the speed more than anything, like it did progress, kind of like you would believe it, you know, like the memory issue. And while she could communicate, I don't know that she ever completely made me feel like she didn't know me, you know, you hear like people crying and say, oh my gosh, she doesn't remember me. Or maybe I'm just more prepared, that that was going to be the case and I didn't really realize it, like I would go see her. But I also for me, I would go see all of the women that she lived with, right? Like, I was like, you know, talk to everybody and work with, you know, like, because, you know, they don't know if I'm their daughter or not and maybe they'll like set me and just I'll give them some sunshine, right? Like, and they're like, so I would talk to everybody. And I don't know, like
J Smiles:This facility about how many people? How many women was fairly small?
Susan:Yeah, there's probably like 10 maybe.
J Smiles:Oh, that's great,that's great. So that was that was the level of intimacy that it felt more like a small college house, like a small sorority house, a senior sorority house. So was your mom able to interact with your sons, were they able to visit?
Susan:Yes, oh yeah they visited until they went off to college. And then when they come home, they go see her. But yeah, they were able to interact with her when she had her 75th birthday we did a sock hop.
J Smiles:Wow thats super cool,
Susan:Like Letterman sweaters.
J Smiles:Yeah. I love it. I love it. What would you say was the one of the more challenging things about being a caregiver? Like you're like, Okay, I know this is coming, you know, I've had to get mom prepared to leave her home and have her in a facility. I think I'm ready for this. But gee whiz ah, this is so challenging. I would have banged my head in the wall.
Susan:Yeah. So there's two paths, right? There's like caregiving path, the make sure mom safe and that she's got good health care, and that she's loved, right. And then there's this financial path that's going to fund all that other. And I think that the financial piece was extremely overwhelming to me. My mom, you know, made management probably in her late 50s, early 60s was an hourly employee, so she didn't have a ton of money. And she had saved money for her retirement and she had social security and had a pension, so that was nice. But as I started to, like, look at how she was going to fund her healthcare, and I was like, Oh my gosh, like, you know, look at our situation and how we, you know, we can fund it. It was just, you know, it was overwhelming, because to me, I thought she would last, you know, 25 years with Alzheimer's, right. Like, because you hear about it, and my girlfriend's mom. She had Alzheimer's 10 years before my mom did, and she passed after my mom did.
J Smiles:Oh, wow
Susan:She had it for a long time. And my mom, you know, gone in seven years,
J Smiles:Really?
Susan:Very fast
J Smiles:Okay
Susan:Yeah, very fast. So, yeah, so I was like thinking, how am I going to fund this for 25 years or whatever. And I was really fortunate, thanks again to my friend, Kathleen, that she had found an elder lawyer, and her mom and dad funded, they had more funds than my mom did, thankfully for them, but this elder lawyer was just amazing. And he was able to like, evaluate her situation and help us figure out you know, how to first off first and foremost right power of attorney and all the stuff that you need to make decisions for her as you know, when she progressed and couldn't make decisions for herself. So they will help me with that the legal stuff there. But the financial piece in setting up a Miller trust, and helping you know her like pay down her money and how we were going to get it and could she qualify for Medicaid or not. And the Lord was looking out for her by one penny, she qualified for Medicaid.
J Smiles:Wait a minute. Wait a minute. Hold on. We'd celebrate things like that here on the Parenting Up podcast, one penny?
Susan:I could not believe it.
J Smiles:But only because you knew enough or you had your friend's guidance to even get an elder care lawyer.
Susan:Yep.
J Smiles:Like who knows to go do that? Then to qualify by one penny?
Susan:Yeah.
J Smiles:Okay, and so then you qualify by one penny. And then First of all, you have to take off for a week and drink margaritas to just celebrate that, that is the most? I mean, that is the that's the most expensive penny, right. That Penny is worth like 1000s of dollars. That is the penny that is then actually worth 1000s of dollars.
Susan:Yes, yes. 10s of 1000s...50- 60 grand a year to you know for healthcare. Right, right. Yeah, so it was pretty amazing. So that, like, once I got that understood, and I mean, it was still stressful, you know, managing the money for her, right? Because you can't accidentally go into her account and like buy chick fil a or anything, right? Like you can't, like, the government's watching all of her money. And it all has to be spent specifically on things for her. So like I, you know, very organized and managed to make it through without any, any mishap. So, but it's tricky. Like, it's very tricky to do, you know, to
J Smiles:how long was that process where you were having to manage her money with that level of controls?
Susan:Five years, yeah, maybe six, because the last year really was the year that she finally could get the Medicaid because she had to pay, you know, she had to use all the money that she had. And then, you know, she had Medicaid step in I guess, I guess it was like the last year, maybe 18 months, something like that.
J Smiles:And you're working full time?
Susan:Working full time.
J Smiles:And you have children?
Susan:Yeah
J Smiles:And your job has you traveling?
Susan:Yep.
J Smiles:And you're married?
Susan:Yep.
J Smiles:I don't know how you manage your personal funds, but I don't manage. I'm pretty nice with my money but I don't manage my own money down to the penny to know which account I went to chick fil a versus which account I only went to Publix. You know, I can't, I can't, I don't really know which debit card I use for Starbucks versus which one, I only went to the grocery store. You know what I mean? That that's the level of specificity that I would cringe at the thought of having to be that detailed.
Susan:I labeled the credit cards labeled, like I put like, print out one of those little stickers and I'd be like, mom's account.
J Smiles:Right? Like don't ever touch this or anything but mom's supplies. Wow. Okay
Susan:Yeah
J Smiles:Okay
Susan:Yeah, it's crazy.
J Smiles:That is crazy. That is crazy. And about the care, so you're you as an only child, and you are watching this happen to your mom so quickly and you mentioned that your friend's mother was diagnosed before your mom; yet you see your mom declining more rapidly- How was that in terms of your internal stress level? Did that cause you to ask more questions of the doctors? Or did you just say, Hey, I guess my mom's disease is wired differently?
Susan:Well, I mean, they told me that like nobody, no two people act the same way right. And when they said that she has early onset, they said that goes fast. And so, you know, what does fast mean, I don't know. But they said it was going to progress, you know, more rapidly than somebody who maybe was diagnosed in their 70s or 80s right. And so, you know, is to me, like, my friend was so important to me, and help guide me along the journey. And then all of a sudden tables turn, and I'm guiding her along the journey, right? Like, because my mom, all of a sudden, she couldn't do anything, she would just sit there everybody, you know, she had to be fed. You know, she was inverbal. You know, there, she was just there, ke her body was there and that was it. She couldn't do anything. And so like to have to talk through that with my friend about, you know, because that was, that's really hard. Like, you know, if my mom is moving around, and she'd be digging in dirt, and I don't care, she'd be like, pouring the whole salt shaker on her plate, whatever. Like she was still alive to me, right? She's still active and doing things and she's still my mom. But then all of a sudden, when she's just there in body. It was that was really difficult. But that didn't last very long. Maybe like six or seven months before, like, and then she, she passed. So it was very rapid, very rapid
J Smiles:Very rapid. Was she in the home with it was just the, say the 10 ladies that had the super the green, I think you say like the greenhouse with a with it was very specialized for all services, is that where she was toward the end.
Susan:No, so when she was in that facility, she was still able, I was able to take her out and go places and to come over to my house. And one day she's like, I need to go to the bathroom. And I was like, Okay, I take her to the bathroom. And she's like, this is not the bathroom. And I was like, Mom, that's bathroom. So there's a toilet. She's like, nope, this is not the bathroom. I said, Okay, let's go to the bathroom, so I put her in the car back to the place and she went to the bathroom.
J Smiles:Oh, you had to take it to the bathroom. where she lived?
Susan:Yes because thats where the bathroom is. Yeah, so she so that was like, you know the beginning of
J Smiles:Right, well I tell you what, she was not incorrect.
Susan:No, she wasn't. She knew the bathroom.
J Smiles:That's right.
Susan:So that was like just the beginning of this whole bathroom thing. Well, eventually, she had some challenges going to the right bathroom.
J Smiles:Okay.
Susan:And at that point, the care for that facility got too much. And she had to go to a higher level facility. So I had to move her to like Alzheimer's unit where there is a lot more care, you know, where they could take care of the feeding and the bathroom. You know, making sure everybody has the bathroom and like just height more higher, higher level care.
J Smiles:And how did you locate these places for newbie caregivers or caregivers, listening that may need that in the future, the individuals that may not have a friend like yours, or they may not have a greenhouse type facility. What do you do when you're trying to say, hey, my family member, my loved one needs a higher care than I have? What do you call it? What do you call those facilities? What do you Google? What do you ask for?
Susan:Well, I googled everything and I went to everything, every single facility in our area, right? Like it's a small town, so there aren't a ton. They're rapidly growing right now. They're everywhere, because there's a huge retirement community, just north of us. But I asked the other managers of the old facility and at the current facility, and the middle one, the one that has the greenhouse management style for Alzheimer's, they were terrific. We had monthly meetings, all of the caregivers would have monthly meetings. And so we would talk about things together. And I had a network of we are all like we're kind of family, you know, and holidays, we come there and all that with our parents together or grandparents or whatever the case would be or brother or sister you know so, so interesting. So I had all of them to talk to as well. And so when my mom moved to that facility, there was other people there that I had met along the way in her journey that had progressed to that to that facility. So yeah, fortunate,
J Smiles:Right. Do they call it advanced Alzheimer's care? Or do you remember a key term that's associated Its just Alzheimer's wing Alzheimer's wing, okay, right
Susan:There were some people that were more mobile there, you know, than my mom, but they just had the ability to, to handle, you know, more advanced stages,
J Smiles:Right. Did your mom ever require hospice? Did they use that type of language?
Susan:Oh, yeah, so crazy story. I've gone on a trip to Seattle and I get a phone call, as I am walking into a meeting and it is the facility saying, Hey, I think it's really time that we send your mom to the hospice. I'm like what what I was just there yesterday, what are you talking about? What happened you know? And they're like, Well, you know, she's not doing well. And I was like well hold on a second, we're not sending her to hospice today.
J Smiles:Yeah, hold on too fast, I'm in Seattle, I was saying yesterday, you can't put her in hospice, while I'm on another coast. That's right.
Susan:So I freaked out, I called my friend Kathleen and I So I was like, I need somebody that isn't me, who want you to know, my husband is great. I'm mentioning his support us amazing support, through all of this tremendous, helped my mom in so many times in so many ways. But she was always going there right. She was there seeing her mom. So I wants to keep my mom alive, right. And somebody that's not called her I said, Can you please go see our moms and tell me if I'm on the hospice day, and she changed since yesterday, like what is going on? So she went there checked her out when I got out the meeting I called her, she's like your mom is exactly the same as yesterday. And I was like what the heck? So I, you know, came home from a business trip, went and saw her met with, you know, the employee had a big meeting and I got the Ombudsman involved. I don't know if you're familiar with ombudsman, but they are an advocate for the patient. So because I was like, I don't know anything about hospice, I don't know anything about when you should go to hospice, this is an all new to me. I know. And so I wanted to third party, because I was like, do they just wanna get rid of the bed? Like, are they done taking care of my mom, you know, like, I was really angry, and so many ugly thoughts, you know, right through my head. the facility that, in my mind just wants to free up the bed.
J Smiles:That's correct.
Susan:To come in and talk about us and help me understand. And so fortunately, he was able to, like, you know, said this is, this is what we normally see, this is where she's at, you know, it's probably time for you to think about it. And so that was in October, ironically enough, my mom sisters reached out to me and said, hey, how's your mom doing? We haven't seen her in seven years, we'd like to come and see her. And I said, well, ironically, that you want to reach out to her because I think I need to put her into hospice. And so I held off, you know, they made their plans, they came to visit her, I held off moving her into hospice until after they were able to come and say goodbye. So, you know, I feel like it's just crazy how the world works, right? Like, how, like, they must have said something, right.
J Smiles:Right
Susan:To know that she wasn't doing well. So they came and saw her and then about two or three weeks later, we put our onto hospice care. And then after a week, we moved her into the hospice facility, because we have a lovely hospice facility here.
J Smiles:Okay.
Susan:You know, they didn't do hospice care at the inter at the facility place, but the hospice home was just so comfortable and so wonderful. And it was amazing to me like how predictable they were with death. They gave me a pamphlet and said, hey, read this, this is how it's going to happen, yhis will happen, and this will happen like and I mean, like clockwork
J Smiles:Clockwork, absolutely. It is amazing and it's very serene.
Susan:Yeah, yeah.
J Smiles:The hospice homes. I've only been to one hospice home. It was a different family member who had cancer, but he was there probably about two weeks a week and a half at the hospice home, but I do not want I'm not, I'm acomedian and I don't want this to sound in any way irreverent, but if you could have a spa for death, it feels like a spa for death. It smells good, they have this calm music, you walk in and it did not feel like a hospital or like anybody in there was was on toward the end. It didn't feel like anyone was coming toward their end like it was fresh flowers, nice, comfy couches. You smelled delicious coffee and pastries. It was such a comfortable serene building. I was like, huh this place is awesome and I thought to the family that chose that I just, I've told him for years since that was an amazing selection. If he had if, if you knew he only had a few days, or maybe a week or so left, a much better facility than a hospital. You had mentioned the ombudsmen and I want to do to finish it. But just I wanted to say this, for the Parenting Up family, for anyone who's not aware, it is an impartial person that every hospital, every university, every facility, or institution should have. And then if they don't, that's already should be a flag to let you know about where you are. But they literally are, for all practical purposes like in like arbitration. So it's a mediator of sorts, they are an impartial third party, that should come in and listen and hear out the facts of both sides and then be able to tell you what occurred and what happened. And then you don't feel as though you have been railroaded or taken advantage of and they should be able to respond pretty quickly. It doesn't cost you anything. So you're not having to go and get a lawyer or hire a mediator or get a judge or get anyone involved. They should be made available to you as soon as you request it.
Susan:Yeah. And it takes the pressure off of you, right, like, because that's a huge decision. Right.
J Smiles:Now, it is a huge decision
Susan:For me to just make that on my own. And my goal, you know, wow, like, you're really, you know, taking all have the support and the medication and everything away from your parents. And, well, if I had to do that just on my own without somebody like this third party telling me though, oh this is the right thing for you to do, and, and I met him all along the way, because he came and spoke at the greenhouse home. And so I had, I had already had a relationship with him. So there were some trust there. So I just felt grateful that he was, you know, involved in this decision.
J Smiles:Understood. Well tell me this, because I've heard you say a few things that were light hearted and kind of comical and positive, share something that you learned or gained, or some experiences that you had, through your time as a caregiver, that were either just funny or refreshing or you're like, I can't believe mom did that, or that I learned that or it's something that you continue to hold with you as a lesson.
Susan:Yeah. Oh my gosh. So my mom is pretty funny woman anyway. And I think I mentioned that she was a caregiver for my kids, so one day, she's in the kitchen, and she gets a little holder to our napkins, metal, just like slamming it on the on the counter. She's like, I quit this job, this is a bad job. You don't pay me enough. I don't have good enough benefits. And I was like, I'm really sorry, that you're gonna have to quit, like and so I roleplay I just continue to roll with it. Like, very sorry, that that you're resigning? We really hope this is like, oh my gosh mom like what the heck. You know, like, there's some, you know, she's that she's like when they she's like to my son in Arkansas, want to kno what's crazy, you can get your driver's license when you're 14.
J Smiles:Really to drive a car?
Susan:Yes.
J Smiles:Not a tractor a car?
Susan:Well, I think that it's probably from the old days when that was the purpose was, you know, for farming or whatever, right never changed it?
J Smiles:Well, that's fine.
Susan:But you have to have, you can only drive to school when you're 14. And you can drive with the parent in the car, you know, somebody has their license in the car if it's not to school. So anyway, so my mom thankfully was coherent enough to say, I know I can't drive anymore. She was getting lost, so she gave her car to my son. And he needed somebody a warm body, you know, that had driver's license to sit in the passenger seat. So he would go after school, pick her up and then she, she'd hop in. She go to his trumpet lesson. So one day she calls me to say like I think I fell asleep in the car. I don't know where I'm at. I just don't know what's going on and aware of that. I was like, Mom, you have the window down. She's like, yes. I said, you hear any music. She's like, I hear a trumpet. And I was like, well, you're at trumpet lessons. Don't worry, you know, I said he'll be out and your grandson will be out in a few minutes, but don't worry.
J Smiles:I love it. She said, Okay. I think I fell asleep in the car, but don't panic.
Susan:Yeah.
J Smiles:But I don't know where I am. I love to don't panic, but I don't know where I am, okay. That's a reason to panic mom, if you don't know where you are.
Susan:Right. Yeah, there's quite a few stories of her getting lost and, you know, Walmart walking around the parking lot. Yeah. And yeah, there's memories I care us, you know, I tell my kids, I said, Oh boy, if I get this, I need you all to like, tell me I was like, you know, the CEO of a company or Miss America or I, like, you know, was an actress or a singer, you know, like, tell me, like, make me, you know, tell me great stories about myself that really aren't true. I don't care. I want to like,
J Smiles:I love that. Get right. Since I don't know, go for it.
Susan:Yeah
J Smiles:Yeah, you know what I'm gonna do that to, you don't mind, I'm also going to take that, I'm going to take that story as well. I tell you what, this has been an amazing conversation. One thing I want you to share before we end, though, is that I know your oldest son, he has finished undergraduate school, he has devoted his life to tackle the research of neurology, and brain health because of his grandmother, your mom. So tell us a little bit about that, because that really touched my heart.
Susan:Yeah. So like I mentioned, you know, my mom is very involved in, you know, being a caregiver for my kids. And he watched her progress and, you know, was very helpful to her was a caregiver in his own right when he was in high school and living here and, and saw what it did to her for what it did to our, you know, our whole family, like just, you know, that the sadness, right like, of just watching grandma deteriorate. And he went to undergrad and got a neuroscience degree in undergrad, and I've been doing research for a couple of years, and is decided that he's going to go on and get his master's in neuroscience and wants to get his PhD in neuroscience. And, you know, his focus is on Alzheimer's research. And I don't know, you know, what the future will bring, but if he can help understand why we get it, and if we can help understand how to treat it better, or if we can cure it, you know, whatever impact he can make, you know, we every little bit counts that people are doing, and the scientists and psychologists didn't, yeah, I just can't express and even the funding, right, that is given to help the cause. It's just so important because, you know, we like I don't know,about you Jay, but I haven't taken the test to see if it's hereditary or not thought about it a few times, but I'm just gonna live life to the fullest. And, you know,
J Smiles:I haven't taken it. I've promised my best friend, I would my best friend and two of my other good friends from college have begged me to take it a especially because I don't have kids, and I'm not married. And so my closest friends, they're like, Jay, please, for us because you're going to be ours.
Susan:You're going to be like one of the Golden Girls.
J Smiles:They're like, we're going to be stuck with you. And I was like, You know what, actually, that's right. I was like, actually, I. So that's what made me start paying a little more attention, Susan is because my crew circle, which I speak of a lot on my podcast, I told him, I said, you know what you all do get a vote in how I manage my health because you all are it, when it gets when it boils down to it, you're going to have to pitch in, and roll me around your houses or we're going to have to be the Golden Girls or something. So right. So I have told them that I will take the test now I haven't signed up for it. I haven't made an appointment. I live a fairly healthy life anyway, I could probably stand to make some improvements around brain health. Generally speaking, you know, the lack of, you know, cutting down on sugar, getting more sleep. I'm not the best in those two areas. I could get a little better at that. But I have really, really enjoyed this conversation. Thank you so much for sharing your journey as a caregiver. It would have been great to have met your mom. She sounds like a real energetic go getter, spicy. I like spicy women. It's hard not to. I think they're kind of what makes the world go round. The best of luck to your sons as they strike off into the world, especially the oldest who is now about to move to another land and all types of prayers for him.
Susan:Thank you. Thank you. This has been so wonderful. I appreciate it so much. Thank you for all that you do with Parenting Up and talking about this and I hope that this helps other caregivers out there.
J Smiles:It most certainly will and you're welcome to come back anytime. You have any additional stories that you remember your friend who helped you so much, let her know if she wants to share any part of her story. If your husband wants to come and share his perspective as the husband, hey, that's another because that's the different angle here at Parenting Up. The point is to share and talk about being a caregiver because until we find a cure, we have each other to lean on. All right, you take care. Have a great day.
Susan:You too
J Smiles:All right, honey. Bye bye.
Susan:Bye bye
J Smiles: The snuggle up:Number one- Lean onto others similarly situated. If you know anyone remotely in these caregiving streets, talk to them. Ask them questions. Don't be ashamed. Don't be embarrassed to not think you're overstepping your bounds. Let them tell you, hey, that's too much, I don't want to share. Trust me, the information they have is way better than a Google search. Number two- Continue to live your life. Yes, you're a caregiver, but you're not dead and neither is your loved one. Maybe your life looks different. You've made some modifications. Whether you start a new hobby, take a new job, or altered your daily schedule. Find a way to have purpose and meaning in your life still. Number three- The progression of Alzheimer's is unpredictable. You can't tell what the pace will be or what part of the disease will attack your ello in what order, will it be incontinence will be memory loss. Don't settle into a pattern and don't have any expectations. Take it as a case. Join me every Monday night for Parenting Up TV, a live Video Broadcast where you can come and talk to me q&a style, anything related to caregiver that is on getvokal.com. The link is in the show notes, 7pm Eastern Standard time in the United States. Follow us on social media for unique content. Instagram, YouTube, Facebook. That's it for now. Thanks for listening. Please subscribe for continuous caregiving tips, tricks, trends, and truth. Pretty, Pretty please with sugar on top, share and review it too. I'm a comedian, Alzheimer's is heavy, but we ain't gotta be.
