Caregiving Chose Me 4x's: A Conversation with Janice Goldmintz

Get ready to be amazed and inspired by the incredible Janice Goldmintz, a "super caregiver" who has navigated the unknowns of caregiving for both her parents and her child. Listen in as Janice tells her powerful story of raising a daughter with trisomy 13, a genetic disorder with a life expectancy less than 1 year . With strength, resilience, humor, and a thirst for knowledge, Janice made difficult decisions and advocated for her daughter's care, extending her time on earth.

J Smiles' conversation takes a poignant turn as they discuss the challenges of dementia caregiving for Janice's parents, both diagnosed with Alzheimer's. Janice's journey through her mother's paranoia and her father's decline during COVID highlights the benefits of being hands-on with a LOs medical affairs. As Janice shares the heartwarming and heart-wrenching moments, we also hear the perseverance and humor that have guided her through her caregiving experiences.

Join us as we absorb Janice's valuable advice on navigating challenging events, understanding facility offerings, and pushing back against doctors. Her wisdom and unique perspective on caregiving will leave you feeling hopeful and empowered. So, lend your ears, open your hearts, and be inspired by the power of caregiving as told by the extraordinary Janice Goldmintz. Oh yeah, her sister-in-law required caregiver tenderness too -- wait until you hear where the stamina comes originates!

Janice's Website:
http://talkaboutaging.com

"Alzheimer's is heavy but we ain't gotta be!"
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Transcript

J Smiles: 0:01

My granddaddy called it adding yeast. Whenever he heard somebody talking and the story just sounded too good, too funny, too rich, too magical, too dramatic, he'd look at me and, ah, no,Jey. He called me,Jey, No, da, da, da, da da. You know just, and that's. You know who is a caregiver? Mama had Alzheimer's, Daddy had Alzheimer's Not just two old parents who needed you to stop by and get some groceries and take them to the doctor, and two people that just got old, maybe, and died.

J Smiles: 1:07

I'm talking about both. Your parents get the whole brain broke Alzheimer's and you have a child who, from birth, got some disease. I can't even say right, okay. And you got to be a for real, for real caregiver. And then you, you really want to talk about it. You're going to come the ParentingUp podcast and share. You still got enough of your wits about you that you want to help others With humor.

J Smiles: 1:46

Nonetheless, who does that? I say are you kidding me? Is this true? I had to ask the team hey, hey, hey, show me a picture of this person. And then they were like oh, oh, you know da da da. Her name is Janice. I was like where's Janice from? Then you know what they did? They got me and said she was a Canuck, She's Canadian. I said, ah ha, thank you. Right, of course she's Canadian. They got a lot of beer. It's so damn cold -- They don't even have time to be angry.

J Smiles: 2:16

Parenting up caregiving adventures with the median, 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 all time awareness on anyone and anything with a heartbeat. Where's my umbrella? I started calling because this stuff is so heavy. You ready for the jokes? Caregiver newbies, OGs, village members trying to just prop up a caregiver. You are in the right place. Hi, this is Zeddy. I hope you enjoy my daughter's podcast. Is that okay? Today's episode: Caregiving, Chose me Four times, a conversation with Janice Goldmintz. Our global community is expanding. I want your feedback. Let's snuggle up. Send a purple heart, the little emoji, to plus one 4047371449.

J Smiles: 3:37

Parenting up family. We have what I've decided to call --You know how it is, It's J-Smiles -- Sometimes I just make up things --A super caregiver, And you all know I don't give out that kind of word lightly. She didn't tell me to give her a cape, but I'm giving her a cape. This lady has caregiver in all the directions. Okay, Like she's a 3D caregiver We have coming with us today Janice Goldmintz. That's right, That's how sweet she is. Her name even implies the love and care. You know what I mean. The universe gave her the name that's going to go with the love and care that she supplied to family members. So welcome Janice.

Janice Goldmintz: 4:32

Thank you. I don't know if the cape is warranted, but it's lovely that you want to give that to me. I will accept it.

J Smiles: 4:42

Well, you have to. I gave it to you, can't give it back. I'm keeping it, thank you. Thank you so much. Caregivers all around the globe You know how we do it here on the parenting up family We get into it and we dig into it quickly. Janice contacted my team because she has a unique story to share. Both of her parents and a child of hers required her intimate and immediate caregiving, love and care and services. And I want you all to know, right now none of them are on earth. So this is going to be a little bit heart wrenching, but thank goodness she is willing to share it. Okay, one parent had Alzheimer's-- OH! correction, parents both of them, yeah, both of them. Look that is even better for us to learn. So what I would like you to share is the first time you became a caregiver. In sequence, be it your child. It may have been one of the parents.

Janice Goldmintz: 6:07

So I got married fairly young and I got pregnant at 23 and first child. I'm young, nobody expects anything is going to be anything other than how it is normally. And I was in a car accident when I was about four months pregnant and they just for whatever sake, they figured, well, we just want to make sure everything is good And did ultrasounds and whatever. And at that point let me know that there might be something wrong in quotations with my child, but never really gave me any indication as to what the wrong was. And me being who I am, my doctor used to leave the file in my room and I read it And it said a whole bunch of things And I said to him what is this? Well, we don't know, we don't know, we don't know, just go ahead. And at that point I was about seven months pregnant And I went into labor and it was kind of going slowly and I ended up. This is, you have to realize, this is 40 odd years ago. So when I say this, you're going to go wow, did they really do that? I had a C-section but I was put to sleep. I wasn't even awake And when I woke up I had this child and was told that she had a cleft lip and palate And I thought, well, i can deal with that, that's not the end of the world.

Janice Goldmintz: 7:41

I was familiar with it And I had read a book when I was pregnant called Is My Baby All Right, Because I read a lot and read a whole bunch of things, so I figured a cleft lip and palate is no big deal. But then I was told well, she has other things we're testing for. Well, you know what is that? And didn't get a lot of answers. And so I asked somebody to bring me my book and I started looking things up And I remember the pediatrician that was at the hospital came in and I said, oh, and I saw my daughter and she was very long and skinny, her hands were clenched, her eyes were shut.

Janice Goldmintz: 8:26

There was a lot of things that gave me the indication that there was something quite wrong. But this guy didn't feel he needed to share that with me And I started looking it up And I said my child has trisomy 13. And he said who told you that? How do you know? And I said because I looked it up, like I looked it up, and he was really pissed off that I should. You know, way before Dr Google, look in a book and figure out what's what. Well, i don't know yet. I don't know. Anyways, my GP, my general practitioner, came in to visit me and I said well, i know what's wrong.

J Smiles: 9:14

So one moment. This is approximately the 1980s or early 1990s 91, Sorry, 81. 1981, and you have a book on hand in the hospital.

Janice Goldmintz: 9:31

I asked someone to bring it for me.

J Smiles: 9:34

You've read it enough to maybe it's dog-eared or outlined, but I have to say you're again. The cape is still yours. Janice, you can't give the cape back because this is not only is it not Google There's, we don't. At this point, we don't even have AOLdotcom You know, we got nothing.

J Smiles: 10:02

Not How Harry had met Sally. Not Sleepless in Seattle. For those Nothing has happened. There's no internet. Um, We don't even have PlayStation yet. So the fact that you are doing that amount of research, even in the book, while you're still in the hospital recovering from what sounds like a fairly painful C-section is a bit extraordinary.

Janice Goldmintz: 10:34

You have to know I always wanted to be a physician, so for me I had to read that was just my, my crazy And so finally looking up her symptoms, this book that you had, it, did it have things listed by symptoms, or it?

Janice Goldmintz: 10:53

I had skimmed through it and I don't even know why it stuck out in my head, but it did. I thought I read about this. There's something in this book that has information. I need the book back, i'm sorry. So I got the book and I realized what was wrong with her And I again said to the physician well, this is what it is. I freaked out, but it was. I was right.

Janice Goldmintz: 11:23

And at that time, if you're familiar with Down syndrome, down syndrome is an extra 21st chromosome and this is an extra 13th chromosome, and the closer you get to one, the more I'm just going to use the word devastating, because I don't know what else were to use The more devastating it is. And so what I read was, first of all, information that at that time Was probably from the 50s and 60s. It was not a lot of research done And these kids don't live past a year old. They just don't. They die. They have this wrong, they have that wrong. And it was never really discussed with me very carefully what was going to be, and I had decisions to make And my, at that time I was no longer married. I was married then to my husband, but then it's separate. So I'm going to call him my ex-husband And we had a lot of decisions to make And we were told take her, you know, don't take her home, put her in an institution, because at that time they had institutions and she's going to die. That's, that's all there is. Just go and she's going to die. And I'm 23 and I think they know what they're talking about, right? I don't know. What do I know? And so that's what I did. And then every day I'd go visit her and I'd go I don't know, she doesn't look like she's dying to me. I don't know what's going on here. So she's three months old, six months old, i'm like I don't know.

Janice Goldmintz: 13:04

I went to a plastic surgeon and I said I would like to get her lip fixed. That's what you do when you have cleft lip. Well, the pediatrician where she was living said oh, she'll die if you do that. And I, because I'm who I am, i said, well, let me see about that. And I took her to a plastic surgeon and he said she'll be fine, we'll do it. And he did. And it was a bilateral cleft, so it was really the whole part of the lip was a little bit not there. And he said it's fine, we'll do it. Did the first surgery, first side, done, did the second surgery, second side, done, and then she could drink out of a proper bottle. It was like a different kit, like wow. And I just said all right, let's see what else is there here.

Janice Goldmintz: 13:54

And so when she was about eight months old and I saw she wasn't dying anytime soon, i said I'm taking her home. Oh, you can't do that. And I said just watch me, because I'm taking her home. And I would say, for the first year and a half, every day I would go into her room and think is this the day she's going to be dead? Because that's what I heard She's going to die, she's going to die. But meanwhile I had somebody coming in to give her some physiotherapy. I found out that she had hearing loss, but her vision was perfectly fine And she was a very happy baby. So I'm like I don't know whatever.

Janice Goldmintz: 14:35

And I think when she was about two years old is when I started thinking I have to stop having that thought. And at that point I had another child and it was like we're just going to go on and whatever. I'm just going to fast forward very quickly. She had lots of disabilities, there's no doubt about it, and so I had three kids under four at a certain point, none of which could walk at a certain point. So that first winter, put one snow suit on, take that kid out, put the snow suit on, take kid two out, put the snow suit on, take kid three out, and I just, you know, we just went, shoved them in the car and double stroller and single stroller, and away we went.

Janice Goldmintz: 15:24

This sounds like a circus A little bit of now And in that I separated from my husband In that when my youngest child was a year old. So it was a little bit of a circus, but I kept doing whatever I thought needed to be done. I called in government services and different things, and when she was about three years old she went to a specialized nursery program And they taught her to sit up and they taught her to use a walker and a specialized bike And all of a sudden she was like, oh, i'm going to walk And all of these things, and I thought, let's see, let's see where she's going to go with this. And I did her thing. You know, still nonverbal and lots of challenges, but this is. You know, what was I going to do? She was. I was going to give her every opportunity that she could possibly have And I did that.

Janice Goldmintz: 16:29

When she was about six years old, due to my circumstance, i had to go back to work And I started looking for a group home for her. The other thing is she started needing more specialized therapy and I just couldn't do it And so I looked for a group home and that's where she went And it was terrific in the beginning. I'm just going to give you a very quick timeline and the details are going to sound like you're going to go what the hell, but it's the truth At the group home.

J Smiles: 17:03

Janice, i'm already saying what the hell? Just wait, you don't have to. Well, no, within, within, I will say what? the something stronger than hell, then what? that has already happened, okay.

Janice Goldmintz: 17:16

Exactly So. When she was at this group home for maybe six months, she would stand up if you put her on something that she could hold it, and she liked to eat and drink. So she was standing at a pedestal sink in the bathroom and one of the workers had a cup of tea or coffee I don't know what it was sitting on the edge of the sink and she grabbed for it but couldn't hold onto it and poured it down her leg. So she ended up with burns down her leg. Okay, that was that We got through that. Then she was outside with one of the workers in the grass and they were smoking and they didn't put their cigarette out quite so well, and she got a cigarette burned because she sat on the cigarette.

J Smiles: 18:10

What.

Janice Goldmintz: 18:11

I'm telling you you're going to go what the hell in a minute. Then she from the group home that she was at. they moved to a different location and one day I come in and she is crying and her feet look like balloons. I'm thinking what happened here? They put her whoever that worker was put her in a very warm bathtub and burned her feet and burnt her bum And she was in hospital for over a month and she needed skin grafts.

J Smiles: 18:47

I can't breathe.

Janice Goldmintz: 18:49

Okay, So she was never in hospital because she was ill. She was only in hospital because while at a group home she was burnt twice. Anyway, that's that big fun story.

J Smiles: 19:07

Yeah, that's more than what the hell. That's what the F? Yeah.

Janice Goldmintz: 19:13

That is a what's the F. The government came in and did a whole investigation and the worker that was there got fired and a lot of stuff happened. But again, she still motored through it using her walker and then started when she was about five years old, going to a kindergarten a specialized kindergarten, but a kindergarten And she thrived. They had her using her walker going to a microwave. This is the key. This was to die by the time. She's a year old, by the way. Just remember that Doing all these things.

Janice Goldmintz: 19:52

And when she was probably nine years old, i started seeing her go, believe it or not, through the beginnings of puberty. It was very weird, here's this little, and she was very little And I'm like, okay, something's up a little off here, a little bit crazy. She also had ear infections and she would have seizures. So there was, she was always on like seizure medication, whatever, and I would see this kind of change And I would go to her doctor and he'd say, well, you know, i don't know, you tell us, because we don't know what you did Like how come his kids alive and thriving? We don't know, you tell us, we don't know. Great, wonderful. So again, as I said, when she was about nine and a half, i started seeing And the other thing that I saw was that her ribcage was not growing to the same way as her body. To me it almost looked like it was squishing her, but there was nothing that could be done. It just was what it was.

Janice Goldmintz: 20:54

And this group home they decided she was just a little almost 11, that they were going. The group home was going to a summer camp, retreat thing in a camp, and I said, you know, she looks like the ear infections are, you know, flaring up. She doesn't look like this is a good time to take her. No, we have to take all the kids, we have to take them all. No one to stay back with her.

J Smiles: 21:25

And this was on a Sunday, okay, I said could you take her to the doctor before you go?

Janice Goldmintz: 21:31

Yeah, he said I don't know, I can't tell you what to do. You have to decide. I said take her. On the Wednesday of that week. I got a call while I was at work saying her name was Brina. Brina had a seizure and she went unconscious And now she's in the hospital. And then this is like two hours away from me because they had taken them to some camp And she's on life support. And that was my WTF moment, Like what? Yeah, And the doctor said that she's brain dead. So what do you want to do? What?

J Smiles: 22:16

Well, what Well? what I wanted you to do was not take her to the camp, take her to the doctor and leave her at the At home. Yeah, and then you can't go on this excursion that you thought was so important.

Janice Goldmintz: 22:34

Exactly. They should have Done what I asked for, but they didn't, and so I had to make the gut wrenching decision to have her taken off life support.

J Smiles: 23:01

What state were you in at that time? I was in Ontario. Canada, Ontario. Did the doctors say what was happening? Did they ever retroactively say what was happening in that 72-hour period that you could determine?

Janice Goldmintz: 23:19

I didn't know specifically what happened, but what happened at the camp was she had a seizure and choked on food and they didn't heimlich her for lack of a better word fast enough And the oxygen just didn't get to her brain.

J Smiles: 23:41

OK.

Janice Goldmintz: 23:44

So, whoa, my thought was always look, If she died because of what was wrong with her, I can live with that. But she died because of somebody's negligence And it took me a very, very, very long time to get over that. To say I had to at some point say this is what happened. Mistakes were made. She could have died the next day from her syndrome. Let it go, Let it go, And I did, But in the beginning I was so angry.

J Smiles: 24:28

Yes, yes. Is it correct in saying that the accident you were in while you were pregnant had nothing to do with it at all?

Janice Goldmintz: 24:41

Nothing to do with it. This was something at conception, it wouldn't have mattered. It just so happens that because I had an accident, that I had all those ultrasounds But otherwise I would have just gone into labor and found out then it was nothing Understood.

J Smiles: 24:58

Understood. Are there any tests that even exist now? for someone It was then. Oh OK.

Janice Goldmintz: 25:07

It was then, but I was a 23-year-old. They didn't do genetic testing on a 23-year-old. I was offered the testing when I got pregnant with my other kids And I said no. I said no because my thought was and I am pro-choice, that's just the way I am. I think everybody should have that choice to me And my choice was not to.

J Smiles: 25:32

Yeah, you had the choice and you said no, and I said no, and I had two other healthy children, and you know, with the same man.

Janice Goldmintz: 25:42

With the same man It was. we were told that it was. you know, there was no. we had our stuff all looked at And we were told that it's just a fluke, it just happened. It's not anything that was in him or in me or whatever.

J Smiles: 26:02

It just happened. It just happened, And so she was how old?

Janice Goldmintz: 26:08

She was almost 11 when she died. And she was never supposed to get out of bed Or she was never supposed to live or be functional or, you know, have cognition at all, at all, at all. So you know, that's my. I'm a very stubborn person. Don't tell me, no, i'm going to show you. I'm going to show you different. And I did with her. I definitely did.

J Smiles: 26:37

I think that is a major component in many of the caregivers that are part of the parenting up family. So welcome home.

J Smiles: 26:50

Yeah, it's just that way, yeah, yeah, we. There are a lot, of, a lot of the people who comment or send me messages or contact my team through social media. There is an element of stubbornness that we don't really know where we stubborn first, or did being a caregiver bring it out in us? But one way or another, our loved one, there's a loved one that needs us, and this, that part of our personality, rises up and takes over, and then there's a courage that comes out And then that cape that you will have to keep Yeah, it was on. So now then, which parent was diagnosed first?

Janice Goldmintz: 27:44

My mom. So my mother was a lifelong smoker. So my mother had COPD, which is said emphysema, and that was always the big thing. And the thing is that when she was my age I won't tell you how old I am, but when she was my age my mother was on oxygen 24, seven because of her smoking, and she was told that she stopped. She had a good chance of the disease reversing, but she didn't stop. So for many, many, many years it was the COPD that kept coming up, you know, kept landing her in the hospital over and over because of lung issues, and at a certain point my parents were living in a two story house. They just couldn't manage the house, and so my background is in gerontology And so it's like OK, let's look for somewhere else for you to live. We need to do this, have a plan in place for you, because this isn't working. And I started noticing different things with her memory. That was like Something's not right here. Something's not right.

J Smiles: 28:55

Question Approximately how many years from your daughter getting her wings to your mom being diagnosed? Are we talking 20 years? She got a guy in 92.

Janice Goldmintz: 29:13

Probably 20 years.

J Smiles: 29:14

About 20 years? OK, about 20 years. And you, how did you get into gerontology? That's, that's not the most common of fields.

Janice Goldmintz: 29:23

So my background from university was in business And, as I said, i was divorced. I met somebody who lived in Buffalo, who happened to be a geriatrician, and I moved to Buffalo and I was so fascinated by what he did that I went back to school in my late forties and got a master's degree in gerontology because I wanted to help those people. So then, when my parents were still not with any Alzheimer's, i did I was called a mini mental status on them And it's just a baseline And I said to their doctor I want you to have this in case something should happen when they're older. I want you to have this. He didn't know what the hell I was talking about. I said just stick it in their file. So now my mother is in her late 70s and I start seeing little crazy things And I start doing these tests over and I could see that the score was beginning to go down and I could see different things. And I said to this doctor you need to start following my mom for memory loss. And he's like well, i don't know. And I thought, all right, here I go again. I had her referred to a program in Toronto called the Toronto Memory Program And I had it all filled out And I just said here, just sign it, just refer her. I know you don't know what it is, trust me, it's good. And I did. And then she was followed and they followed her medications and her trajectory And as she got further and further into it, people, i will say, with Alzheimer's become more of who they are, and my mother is a very strong personality, and what was happening was she was also becoming paranoid to some degree And so everything that was, she would just see things happening, and so we had to be very aware of what she was doing.

Janice Goldmintz: 31:26

And that's where the caregiving for her really kicked in, because my father was still working, and so I hired a home care worker for my mom, which she didn't like that. She would lock the door. I wouldn't let them in. She wouldn't let my father go out to work. I used to have to come in the morning and get her to let him out.

Janice Goldmintz: 31:48

She would go in the hall and lie down and take her oxygen off and say I'm going to die. I'd say, all right, go ahead. And she lay there on the floor, take the oxygen off, and I'd laugh because I know that she was fine. She'd sit there for maybe 10 minutes. So then she'd look around and go OK, this isn't working, put the oxygen back on and continue on. This paranoia and whatever did continue to the point where one day she ran out of their apartment with no shoes on, i think without her oxygen jumped on a bus And the bus driver thank God a million times was smart enough to pull the bus over and call the police. The concierge in their building saw this happen, called my father, told my father hey, your wife is like run out onto the street And my mother ended up in the hospital for five months in the site board because it was crazy, and so I'd be there every day, could not go back to this retirement residence because she was like they were off the wall.

J Smiles: 33:09

Today's sponsor is Jace Miles Comedy. fresh, curated content for corporations, clubs or keynotes, live and virtual performances. JaceMilesComedycom. Your mom, prior to this level of these stages of the dementia, when she was healthy, was she this much of a card?

Janice Goldmintz: 33:41

Yes, in a different way, in a different way. She always you know, it was always her way, or the highway, i mean, that was just the way she was. But there are other things that happened, to start when they were living in this retirement residence. She would think that everybody's wearing a wig and she would pull people's hair OMG, people don't like that. And somebody called the police on her one time. Anyway, that's another story.

Janice Goldmintz: 34:11

So she ended up in this psych ward for a bit and then went to a dementia, a specific dementia care facility, and that's where she lived the rest of her life. And once meds were kind of calibrated, this paranoia still stayed and she literally at night had to have somebody a nurse or somebody in the doorway of her room so that if she woke up she saw that somebody was there. And again, even with COPD, with emphysema, she lived 20 years on oxygen, 24-7. It's not the emphysema sorry, it's not the dementia that got her. It was eventually the emphysema, the dementia.

Janice Goldmintz: 35:07

If she had not had emphysema she'd probably still be alive. Really, yeah, 100%, because my mother and her brother, my uncle, just passed away. He was 98 and my grandfather was 99 when he died. She would have lived long, long, long long. But so the caregiving for her was kind of always making sure she wasn't going to drive other people crazy. And she was great. If you talk to her, you would never think anything was wrong with her. She was. She could have a conversation. She didn't know what day it was or anything else, but she could talk to you and you would think she had her marbles. My father was different.

J Smiles: 35:52

That's a lot like my mom's Zeddy And I have watched her talk circles around people in the doctor's office or at church or on airplane, when she was a little more able to travel, when she wasn't as incontinent, and I even basketball games when I would take her to my mom's a really, really big sports lady And I would just be tickled.

J Smiles: 36:23

But at a point I would start kind of trying to wink at them over her head, saying at any point you can stop this conversation because there's going to be a point where you are not going to track, it's not going to make sense to you, and you're going to start looking around and looking at me and it's okay, you can just bow out and she'll be fine because they but she does, zeddy, she looks very healthy. Her skin, her laughter, her eyes will follow the person who's talking. You know her hands. She'll say, oh well, thank you, but that's so kind, oh, i'm happy, you had a good day. And those things follow the conversation so well that individuals look at me and say well, jay smiles, are you sure?

Janice Goldmintz: 37:18

Are you sure? Yeah?

J Smiles: 37:20

Are you sure? Yeah, yeah. So with that now, your mom, from the moment that she was, had the five months or so in the mental health facility, that's when your parents stopped living together. Is that true? Yeah, So how many years left was that And how hard was that on your dad.

Janice Goldmintz: 37:44

So it was very hard on him because he did not want to make any decisions about her care. I made them do a living will. I made them do powers of attorneys for my brother and I And anytime something came up I would say it's okay, dad, you don't have to decide, it's in the living will. This is what mom wants Here, it is, you don't have to decide. And he was very happy with that, very happy.

Janice Goldmintz: 38:17

The mistake that I made on my mom's power of attorney is that I had my brother and me And my brother couldn't make a decision if his life depended on it. So it was all me anyway And that was great. He always agreed with whatever I want And I did my father's. It was me or my brother. I got smart. So he never, they never called him, never happened. But it was hard for my dad to watch her deteriorate. It was hard for him to watch her even with the emphysema, because he just blamed her for her own outcome And I think over time he kind of got over that too. But I think it was. It was very hard for him And with him was very different. That was different because my father worked until he was 87.

J Smiles: 39:17

How much? how many years was it? Can you remember approximately? was it like two or three or 10? Before he was diagnosed?

Janice Goldmintz: 39:28

Okay, about five years, and what happened with him is he was living in a senior apartment and my father loved to garden and they had given him pretty carte blanche access to a rooftop garden And he planted a million tomato plants and other things And when COVID hit, they said no, nothing anymore And my father had no purpose. And so that is when his memory started going. That's when he lost his purpose. And I remember him driving one day and him phoning me and saying I'm not sure where I am. And I said, well, just read me the street sign. And he told me and I thought, oh my God, he's five blocks away from where he lives And he can't figure out how to get home. And he said I'm not driving anymore, i'm not comfortable. And he got rid of his car And he was good with it. My father walked, he was a walker, it was good. But over time I saw that his memory also started to deteriorate And I saw that he wasn't eating.

J Smiles: 40:47

Janice, i have to stop right here and just offer all kind of universal claps and adulation to your father and his spirit. First he called you to say I don't know where I am. That's not the most typical, especially as a guy, and history tells us they won't ask a person, a woman in the car with them hey, which way do I turn? But your dad is in the car and has. He lets enough of his ego go. So that speaks to his trust and confidence in you, whatever he's seen of you over the years, how you cared for your mom, what he has witnessed, and in his own sense of awareness to say, okay, you know what, i've tried this, this isn't working And I'm going to call her, i'm going to, but that that those, all that could have gone so many other ways. And for him to do that and then to, without you even having to push back and forth with him, for him to give up his car.

J Smiles: 42:06

My grandfather had dementia, he had Alzheimer's and he went blind from diabetes and macular degeneration. That man we had to hide. We had to sell his car and hide everyone's keys that ever came to the house. So kudos to dad for that.

Janice Goldmintz: 42:28

Yeah, yeah, my mother was like that We. When her keys were taken away, she flipped out. The other thing to say and it's not again because I'm wearing the cape, but just to let you know is that when my mother was in that facility for five months, i was there every day, every day, and my son, who at that time was in his late twenties, was there almost every day. So when my father started having more of this kind of issue where he was really not taking care of himself, i said to him it's time to move out of here. And I moved him during COVID into a retirement residence And in the beginning again he was good And when he walked in there he literally walked in All good. He went swimming. He was a big swimmer. He was swimming with my son and slipped and fell and hurt his back And there was no therapy. There was no nothing.

Janice Goldmintz: 43:34

My father ended up needing a walker because they didn't allow physiotherapy to come in while during COVID And that had an effect And his memory again just kind of went down and down And what I started noticing about him is he was living in this. I don't know it was a fantasy world, but my father always wanted to live on a farm And that's where he saw himself every day, and so I went with it. You're all, you're on the farm, whatever, it's all good. And he asked every woman in this building to marry him. It didn't matter if she was married, not married, he didn't care. He asked every woman.

Janice Goldmintz: 44:16

And my father was so classed He was the opposite of my mom. He just was gentle and funny And everybody just loved him. And he had anxiety attacks. Every so often he'd have these anxiety attacks and people started to recognize when these things were happening and all of that. But there were things in the retirement residence for my mom and for my dad where I had to be the advocate And I made sure that their care was appropriate. I made sure their medications were appropriate, i made sure that where they lived was appropriate, because there was a lot of issues. And I see it with a lot of other people who live in these buildings where they don't know what I know, and so they get shafted. They just do. They say you need to pay more money and more and more and more and more.

J Smiles: 45:27

And so I think that's a good question. When your father went to the retirement community, was it the same one as where your mom was?

Janice Goldmintz: 45:41

ultimately did his have a memory care component? They did not. My father did not need the same degree of oversight that my mother did, and yet, in terms of like conversation and, i'll say, engagement, my mother went to all kinds of activities. She did arts and crafts, she did baking with them, everything that they had. She's saying she played bingo. all that.

Janice Goldmintz: 46:09

My father did none of it. He was really happy just to be an observer. So he didn't do any of that Very different. I did make him go to exercise classes though, because it was good for him. I would say you got to go.

Janice Goldmintz: 46:25

And then for my dad, just one day he said I don't feel well And they called an ambulance and different things happened And he was literally it's funny, it's just a funny thing that happened. He's laying there on the stretcher and I'm talking to the doctor and he turns up and he goes. I got a pee And the guy said it's okay, you're wearing like a pull up, whatever, it's okay, go. The next thing I know the heart monitor was flat And I'm like what, what? And that's how my father passed away, literally right beside me. Last thing he ever said in his life was I gotta pee, and that's typical of my dad, like it's like of course, of course, that's the last thing you're gonna say. And for my dad I was there every day, every day, and my son also was there. And the other thing to know is that my father died in March.

Janice Goldmintz: 47:34

My brother died 13 months prior. What It was? a big yeah, there was a big snowstorm in Toronto. He was shoveling and he died. And my father? we never knew. We did not tell my father, we told very few people because my brother lived out of town. And at my father's funeral I said by the way, if you're wondering where my brother is, fyi, he died 13 months ago.

J Smiles: 48:11

Janice, if you try to give that cape back, i affectionately will strangle you with it. Affectionately and respectful, you know what I mean. It would be the most loving, humorous strangle known in Canadian US diplomacy. Yeah.

Janice Goldmintz: 48:34

In a snowstorm. Well, there was a snowstorm and there was like the snow ended up probably waist high, okay, and my brother decided he needed to shovel. Now, my brother was not somebody who was physically fit, not used to doing exercise, he was type two diabetic, and decided this is what he needed to do. And that's what happened, like literally, I think he had told his wife I don't feel good, sat down on the bed And then he said, no, i'm good, and she went out to her office. Next thing she heard like a like when falling and he was on the floor and he had already died on the floor. And so you know, i will say that I cared, did caregiving for his wife after the fact, because she was devastated. I mean, my brother was 66, right, he wasn't old, and she had her own health issues And so getting her back on her feet and back functional and you know what are we gonna do? They lived in a big house. What are we gonna do with the house And what are we going to do with the stuff and where are you gonna live and how are we gonna do it?

Janice Goldmintz: 50:03

And I was my brother's executor and it was a nightmare. It was a nightmare, because we couldn't find a will that was probably recent and I still don't know where it is. The will that he had was from 30 years ago. That's how I was the executor and it was crazy. But you know what And I said it even with my dad, because his executor as well I turned to my brother at my father's funeral and in my head I'm going you left this all up to me.

Janice Goldmintz: 50:41

Thanks, he had left this all to me to figure this all out. Great Thanks, a million, a million. Now in the time, i will just tell you, in the time that my father, when my mother was in care for the five months, i think my brother maybe saw her three times, and when my father was living at where he was living for two years, i think my brother saw him three times. So I knew it was going to all be up to me, no matter what. That was just the way it was going to be. But now it was like that's it, it's all on you.

J Smiles: 51:26

The number of times I get the question. I bet you wish you had siblings. Now I'm an only child And I just got it last week. I mean, literally two people last week were saying, asking about the podcast and things of that nature, and they were oh man, but Jay smiles.

J Smiles: 51:54

This has to be a time where a brother or sister, younger, older, anybody, or, if you had kids, or someone that could assist you And I say, hey, that does not always translate into help, valuable help. Sometimes you get dissension and division and you get someone that's in the way and that could cause resentment, cause you're like, oh my goodness, we're supposed to be sharing this responsibility. Or you may have someone who actually wants to fight against you When you're the one boots on the ground. You have more knowledge, you have a greater skill set, you have more contacts, but a person that may live further away or being a completely different industry wants to slow down the progress.

J Smiles: 52:53

And I say every time I say listen, i know I don't have any help, but I also don't have any hindrance or any expectation of help. It's one I know. I knew from day one it's only me, so let's just start this thing. But in your case, you also then had to assist his wife, your brother's widow, in the middle of your father's needs. What in the world? Now, you couldn't have expected that, even though you knew you would have the lion's share of your parents. LGAJ, who in the hell would think I gotta do my brother's wife? Now, that's not a clear look.

Janice Goldmintz: 53:46

And I couldn't tell people that my brother died because I didn't want my father to find out from other people. And so, literally at the day of the funeral, i told my father's brother, who was alive still, and I said by the way, i need to tell you this. And my uncle was like what? What? Yeah, i think there was maybe in my family maybe 10 people knew that my brother had died and they were all my first cousins that we were close with. But other than that, nobody knew.

Janice Goldmintz: 54:29

And people say well, in all of these kinds of situations, i don't know how you get it, there's no choice, there's no choice. You know, if people would have said to me you're going to have a child and you're going to go through this and this and this, i would have said no way, no way. But when it happens, it happens. You know I've said to people oh, i don't know, i would have, i would never have lived through it. I said what would you do? And this happened. You know, you give birth to a perfectly normal child and the child is wonderful. And God forbid. A million times they have an illness, they're in an accident and they're no longer perfect. You don't have the option to give them back. You have to deal with the situation. The same with your parent.

Janice Goldmintz: 55:23

Now, with parents, i see a lot of dump and drop. I do Oh, they're in a facility, i don't need to come. Whatever, it's your choice. You have to. You know what You have to do, what your heart tells you, and if you can sleep at night, it's not my business. What you do, it's not my business. I only could do what I felt was right for me. And I was a daddy's girl and there was no way that for my dad I wasn't going to do everything, and for my mom, because somebody needed to fight for them. And it was me. And I've said a million times lately that when I was born, god stamped the word advocate on my forehead and said that's who you will be for your life. That is your goal, that is your purpose And that's what you will do with your life. And here I am.

J Smiles: 56:19

Yeah, here you are in a big, big way. Here you are, i am. It's rare that I'm speechless. I'm known as a talker. It's rare that I'm speechless.

J Smiles: 56:36

You have advocated for your family, your blood family, your in-laws, and after finishing university you went back once you learned of geriatrics and geriatology because you said, oh, that's a, that's a population that I want to have certifications that allow me to go and help them. So I believe you, full hearted, wholeheartedly, when you say that advocacy is a part of what not only what you do, but who you are, that God put that stamp on your journey. What do you do to remain fueled? Because you are? your soul may be of the universe and of God, but your body is human and it needs rest, or fuel, or food, or rejuvenation, and so, in the way of the buzz term now is self care. But you know you may have done other things. I don't know. Is it walking, is it reading, is it naps, is it kayaking, is it throughout your life? And it may be different now than what you did when your daughter was, when your oldest daughter was alive.

Janice Goldmintz: 58:01

Yeah. So I would say that walking for sure, i've always been a walker I have a sense of humor and I think you have to have a sense of humor. You have to just go whatever Like. You have to find things that make you happy and laugh. I actually was out this weekend with a friend of mine that I've been friends with for over 50 years And we just talk about the stupid things we did when we were kids and we laugh. And you know, i was on another podcast and the last question the person asked me was when did you know that you were an adult? And I said I still don't know. I'm not an adult. I don't know, am I an adult? Oh, i didn't know that, and that's just the way it is. You know, i have a sense of humor, i have a stubbornness, i have a way of being that is just like all right, whatever Like okay, throw it on, I can put that on my little bag and carry that one too.

Janice Goldmintz: 59:08

I have very little patience for victimhood very little, And when I hear somebody coming up as a victim, I'm probably not the best person to help them Because I just can't, I can't deal with it. It's like, anyway, I can't deal with it. You know, in terms of other things, I love chocolate, Like give me chocolate and I will eat a ton of chocolate And that's. I enjoy it, Like sorry.

J Smiles: 59:46

I have never had too much chocolate or nothing has been too chocolatey or chocolate rich in my entire life, And I've heard had people tell me oh, that was too rich.

Janice Goldmintz: 59:59

I can't eat that. It's too rich. No, no such thing. No, i have to say. I have to say one time I was in San Francisco and I went to the Ghirardelli factory and I got a milkshake that was chocolate with chocolate syrup, with chocolate whipped cream. For me it was, i think, the one time in my life that I thought this is way over the seat. I had a headache from the chocolate and I still eat more chocolate the next day, but that's another story. But that day was too much.

J Smiles: 1:00:48

One thing that is ever present is you have shared this journey. Not once have you seemed defeated or exhausted. You have, throughout this conversation, just said the facts and the steps of your loved ones and just what happened and then what you did in response to what life put before you. That alone speaks to the advocacy and your point of view. What is it that you want to leave the parenting up community knowing what is the nugget that you want them to take away from what you've experienced as a caregiver?

Janice Goldmintz: 1:01:36

So we're all going to come up against events that are challenging. There's nobody that's going to escape it, and I don't care who you are. Everybody is going to have challenges. And if you know the result you want, all you need to do is figure out how to react to get that result. You can be in a traffic jam and your result can be I'm pissed off. Why am I in this traffic jam? If it sucks, or it can be, i've got an extra few minutes. I'm going to a meeting. I'm going to think of my notes. I'm going to think of what I need to do later on. today, the traffic jam is over and you drive away and you're calm and relaxed. That response is up to you and it's your choice to make that response be whatever. it is you want for that result. And if you think about that, here's an event, here's how I want it to come out. What do I need to do to get that result? and then do it.

Janice Goldmintz: 1:02:44

And it's not always perfect, we don't always do whatever, and some things we have. we have to be very careful with the result that we're asking for, that it's possible. You can't have an event that somebody has cancer and that your result is well, they're going to get cured. You want that, but there are other results. You want that person to live, whatever it is, a high quality life. So how can I be a part of that high quality life? You have to have all of those three pieces, but that's what's going to make or break who you are as a person.

J Smiles: 1:03:23

I love it. I love it. How can we get in touch with you later to have more of this advocacy and advice, and I'm going to call it consulting services, potentially.

Janice Goldmintz: 1:03:36

Okay, so I'm on Facebook. So if you look up talk about aging, i'm there And my Instagram, i think. Oh no, my Facebook thinks that Janice can help, which is really funny. Janice can help, can help. Yeah, so I'm on Facebook. Just look up talk about aging. I also have one that says aging parents. So if you have aging parents and you want help with that, i'm available by email, janice, at talkaboutagingcom, and I'm more than happy to give advice, talk, listen, make jokes. You know, because you have to find the humor in it, as you well know. You have to find the humor because my father used to say like the craziest things, and if I didn't have a sense of humor I would think this guy's like off the wall. So I left. You know, i'd say back the same stupid things. Okay, yeah, whatever.

J Smiles: 1:04:46

Well, this has been fantastic. I know the number of gems and jewels and takeaways that you have dropped in this conversation are too numerous for me to add up right now. You've given us resources and you've given us hope, talent and technique. Thank you. Thank you for having me.

Janice Goldmintz: 1:05:14

I it's, I, Yeah, I love to share because I think if it helps somebody else that paying it forward is really important.

J Smiles: 1:05:28

Agreed, you're welcome back anytime. Thank you, and I'll never tell somebody before I get ready to leave the room. I got to pee again, bye.

Janice Goldmintz: 1:05:46

Well, you can tell them. I don't think that that's going to happen to you, but it just like for me. It was so appropriate And I said it at my father's funeral. I said, if you, my father's nickname was Al the People's Pal, and that was who he was Like. He was funny and helpful And of course, this is going to be the last thing that's going to be, the thing.

J Smiles: 1:06:11

It was fantastic. Thank you so very much. THE SNUGGLE UP. Number One give your LO purpose for as long as possible. For Janice, her dad needed that tomato garden For you, your LO, maybe it's a garden, maybe it's holding socks. It could be simple, it might be complex. Protect whatever that purpose is for as long as you can. Number Two the response. That's our choice. What results do you want? You want to be angry? You want to be mad? You want migraine and ulcers? No, who the hell wants that?

J Smiles: 1:07:18

If you are listening to this podcast, you are a caregiver, you are supporting a caregiver. You have been a caregiver. Then you give a care. Choose a response that's going to benefit you. Of course, you don't want to have this disease or to go through the trials and tribulations. You might be pissed off for a moment, maybe for even a few hours, a few days, but what is the result that you want? Do you keep your LO in the highest quality of life for as long as possible, while you are maintaining balance and a healthy life as well?

J Smiles: 1:08:23

Number Three don't blindly trust the doctors and medical folks because they got on a white coat or some fancy piece of paper on the wall. Read your own books, get your own research off them. Internet webs Get second, third, fourth, fifth opinions. Janice has schooled umpteen Yes, that is a nump. Umpteen is more than a trillion. She has schooled umpteen medical professionals on what was happening in her family. She said hey, listen, this is what it is. Hurry your ass up and take care of my people. The bottom line is what is the result that you want? Time is a waste Your time, your LO's time, time off, work time in this traffic jam. Let's go. That's it for now. Thank you 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.