Transcript
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parenting up family.
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I found the CIA, kgb caregiver extraordinary, expert kind of person I didn't even know these types of specialties could exist in caregiving in caregiving.
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Today's guest actually has real life experience as an expert witness in caregiving.
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She was a caregiver for her mom, for her grandfather, Then she's helped others as a fiduciary, which is a big old fancy word for saying I'm not married to you, I'm not related to you, but I'm legally responsible for you, so if something happened to you I'm going to get in trouble as if I were your wife or your mom or something.
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I mean, wow, you're talking about.
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Committed to the notion of caring for people.
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What a dude at Her name is Pamela D Wilson, and the D stands for determined to help you better as a caregiver.
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Come on, lean in, listen and watch.
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Here we go.
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Come on, come on, come on.
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Parenting Up Caregiving Adventures with Comedian J Smiles is the intense journey of unexpectedly being fully responsible for my mama.
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For over a decade I've been chipping away at the unknown, advocating for her and pushing Alzheimer's awareness on anyone and anything, with a heartbeat Spoiler alert.
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I started comedy because this shit is so heavy, so be ready for the jokes.
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Caregiver newbies, ogs and village members just willing to prop up a caregiver.
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You are in the right place.
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Hi, this is Zeddy.
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I hope you enjoy my daughter's podcast, the WK Caregiver protection Tips from an expert.
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Parenting Up family.
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We are introducing a new segment.
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Supporters Shout Out going to highlight a review, a comment, somebody who lets us know that they really enjoy the podcast.
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Will you be next?
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Ha ha, ha ha ha.
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You got to get the review in.
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There will be gifts.
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I can't tell you what it is.
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You got to get your review in.
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Anyway, the very first supporter shout out Bionic Jam.
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Apple Reviews the title Love this Show.
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I know that's right.
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Okay, that was me.
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Five stars, and I quote I absolutely love this show.
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I have been a listener of nearly a year now and the things Jay shares with us about what she is going through really hit home.
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It is a wonderful thing that she is sharing with us and helps me keep my sanity period.
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Omg, thank you so much, bionic Jam.
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Knowing that any part of this journey is helping with your sanity keeps us moving here at the Parenting Up family.
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Thank you.
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Our Parenting Up community is growing so fast I can't put out an episode as fast as we are growing, so text PODCAST to 404-737-1449 for updates, exclusives and suggestions on topics.
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While you're at it, share an episode with the caregiver you love.
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Review on Apple Podcasts and follow us on social media.
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Subscribe to our YouTube page, please.
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It really helps Parenting Up family, you know.
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We like to bring it to you straight.
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I like to give you things that you can't find other places, ways where the caregiver can actually be better.
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Everybody's always talking about.
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Can we solve Alzheimer's?
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Well, yeah we want to.
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But in the meantime, what the hell can we do to help ourselves?
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Well, today I went searching high and low my grandfather would have said, from the rooter to the tooter, and I found Pamela D Wilson.
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Welcome.
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Pamela, thank you, I'm glad to be here.
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Thank you, thank you, thank you, man.
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I cannot wait for everyone to hear how specialized you've become as a caregiver expert.
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I mean, I didn't even know they really had that.
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I wish I had known about you and your field when I was thrust into this role with my mom over a decade ago.
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But that's OK, better late than never.
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Tell us just real briefly how do you even get to claim yourself as a caregiver expert?
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Now, we're going to get into the juicy bits later, but the word expert is big, so what allows you to be able to say such a thing?
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Probably 20,000 hours of on the ground actual work, either as a caregiver in my own family, but more so as a care manager and professional fiduciary helping caregivers and older adults and their families.
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I've been everywhere caregivers have in the hospital, in the nursing home, in the morgue, I mean you name it.
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I've been there on the ground and so that has kind of built up my expertise in so many situations because I've been exposed to more than the average person would be, just because of the breadth of my work.
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That's amazing.
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You got me beat on the morgue.
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Amazing.
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You got me beat on the morgue.
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I haven't been in the morgue.
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I don't want to go to the morgue.
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No, you don't want to get calls from the morgue?
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No, I don't even want to know where the morgue is actually.
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I don't know where the morgue is.
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I've never known where the morgue is.
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Now that I think about it and I don't care to know.
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That's a place you know.
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I just want to pay my taxes and I would like to know that there is a morgue in every city in the United States, somewhere, and that's enough.
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That's enough for me.
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That's one of those things where you know they say it's better, if you don't know, just pay your taxes and let some politician take care of it.
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Great, that's one of those things.
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That's one of those things who you said you cared for people in your family or very close friends, who did you care for and what was their ailment?
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So my mother and many ailments.
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She, you know, grew up at a time when there was no health awareness.
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So she smoked, so she had cardiovascular problems, she had strokes, she got hepatitis because she needed quadruple bypass surgery and at the time they weren't testing blood.
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She had fractures, I mean, you name it, she had it.
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And from the time I was in my 20s until the time she passed away, not only me but my sisters, my brothers, my dad, all of us were her caregiver.
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And this was your mom, my mom.
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And then other people in my family.
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Where did you grow?
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up oh Omaha, Nebraska, and then other people in my family.
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Where did you grow up?
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Oh, Omaha, Nebraska.
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You don't meet many people from Omaha.
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It's like you all stay there.
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Well, I've left Warren Buffett is from Omaha, yeah.
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And the steaks, yeah, oh yes, the best.
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Yes, ok, your mom.
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So she had a lot of ailments.
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Yeah, smoking.
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From what I hear in the news and statistics it has come back.
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I mean, for some reason people under 25 are smoking again, as if we don't have proof of what it can do to your body.
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So, anyway, we're not going to talk about that anymore.
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So you were a caregiver very young.
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Very young and even you know my grandmother was older.
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She didn't have a lot of ailments.
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My uncle did have Alzheimer's and dementia.
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So because I was the youngest of six kids, I was around a lot of older people who had health problems.
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How did you feel as a kid, seeing aging, ailing people.
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Were you afraid?
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Were you comfortable around them?
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Did you try to avoid it?
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How did you handle it?
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You know, I wasn't afraid because a lot of these older family members doted on me when I was, you know, two or three or four, and so I love them, so I would go visit my grandmother.
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The panic set in when every Sunday, like clockwork almost, my mother would call in the evening saying I don't feel good, I need to go to the emergency room.
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So I, like many caregivers, got trained.
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It's like when this thing rings, it's not good, it's going to be a problem and you probably have to show up somewhere.
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Yeah, that phone ringing.
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I often I say it kind of tongue in cheek, but once you are a family caregiver which I like to distinguish between individuals who are professional caregivers, who have been trained and they're paid and they it's a job for them, just like if you are a school teacher or a fireman or, you know, a senator and at some point you go home, or if you're an engineer or a truck driver home, or if you're an engineer or a truck driver, but if you're a family care giver I'm laughing, though, because you're saying and you go home.
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So if I can just say something really quick about that, the years that I was in professional caregiving from 2000 to 2018, I was on 24 seven.
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My phone rang at 2 in the morning, at 3 in the morning, on vacations, when I was out at dinner all the time.
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So for some professional caregivers it is a 24-7, 365 job.
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I appreciate that clarification.
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Thank you, you're welcome.
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I was a legal fiduciary, so I didn't?
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you know?
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I don't want to say I didn't have a choice.
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I chose to do that, I chose to be under those constraints.
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So you are one of those odd birds.
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Very, very odd bird, very niche work.
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Probably not a lot of people have done what I've done.
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That further explains why you can say I am an expert in caregiving.
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I've seen it all, I've done a bunch, because there are not many professional caregivers who can say, yes, 24-7, I did everything all the time.
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Yeah, that's rare.
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So kudos to you for taking on that responsibility and then taking it so seriously, because just because you are on call, it doesn't mean you actually answer the call.
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But I won't.
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I'm not going to name any names for people who haven't always answered my call, even though I was paying them and they were in the medical field.
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This is not a bashing type podcast.
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That's not what I do here.
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No, but that is true.
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Yeah, that is true.
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Yeah, I mean, it happens, it happens.
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Share with us how you decided no-transcript.
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They don't always have an advocate.
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What I love so much about your work, ok, let me.
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Let me just back up a little bit.
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Ok, parenting up community this is what Pamela D Wilson the D is very important OK, so if everybody is trying to find her and she's going to give us her information toward the end of this conversation conversation, but you got to put that D in there, all right.
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What's amazing is she knows that this is a marathon and that if we don't keep ourselves super glued and taped up and fortified, we're not going to make it.
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And what I want to know, pamela, is what happened along your professional journey that really opened up your heart for you to care enough to put us first, the caregivers.
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I think again.
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It goes back to my childhood and being around older people and loving them, Then being a caregiver for my family right my mother and understanding what that was like.
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And then, after her death, looking back and thinking before, when I was getting into this part of my career oh my gosh, everything I didn't know, that the doctors didn't tell us that, no one told that things we could have done, things we should have done.
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So it was that retrospect of saying, oh my gosh, I've had this experience.
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I'm going to delve into this and figure out how to help people so they don't have to go through what I went through or what somebody else went through or what people continually go through when I talk to them.
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Thank you, I do believe that it is better.
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You know I don't believe in that.
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Well, I had to go through it, so you go through it.
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I'm like, no, no, because I went through it, you should not have to go through it.
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Yeah, absolutely, I know you have said in some of your work you have talked about Sometimes your loved one may hear and or see things or be talking to people that aren't really there and that caregivers can have a tough time in knowing what to do with that.
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Right, yes, how do you help people respond Right, and this is a question that really is very useful, especially for what I call newbie caregivers, is very useful, especially for what I call newbie caregivers.
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And the first time your LO maybe is hallucinating or they're having conversations with individuals that you don't see, what kind of suggestions would you have for them?
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So you have to not try to correct them and you want to kind of be where you think they are right.
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So I would never say, oh, you're making that up or you're not seeing that.
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You kind of go along with it and say, well, gosh, who are you talking to and what are you talking about?
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So it's kind of like a little distraction technique, as long as they're not afraid of this person.
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Now I had a lady who would see bugs on her wall and I'm like, oh, let me just go and I'll, I'll wash them off and then let's go in the other room, you know.
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So.
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So a lot of it is validating what they think they're saying and talking to them about it and say, well, gosh, is that scary for you?
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How does that feel?
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Tell me what you're seeing.
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You don't you never discount what they're seeing, because they may really be seeing it?
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Just because you're not doesn't mean it's not there.
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True, I agree with that completely.
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I say that a lot to individuals who ask me for advice.
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Let's say how do you know?
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It's not there.
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I mean truthfully, I don't know.
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I mean, the same way, stevie Wonder can make music and hear notes that I don't hear.
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Now, he doesn't have vision, but he has hearing and touch that I don't possess.
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So you know, my mom's nickname is Zeddy.
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I said, you know, there are things that she may attempt.
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Now, how dare I chastise her as if my way is right, as long as whatever it is is not harming her.
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I'm like, well, what the hell you know that's right.
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Tell me this have you had clients?
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I'm sure you have when?
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Well, let me just say this this has been a pisser for me when doctors especially doctors, because they have the white coat, and, pamela, when the people have the white coat on we go to them and we're wanting something just short of a miracle.
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We want some medicine, we want some answers, we want a solution.
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And then we go to them and we're talking to them and they don't have the answer.
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And then often they're responding to us in a way that may be intimidating or it may not be comforting, and then either we don't get what we need and maybe we stop going back, or we get pissed off.
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How do you, you know, have you dealt with that?
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Or how would you suggest people, caregivers, respond in that way Because you're trying to take up for your LO and, you know like not storm out of the doctor's office.
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I deal with this on an ongoing basis.
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As you mentioned before, working with the healthcare system is frustrating.
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So one of the first things is you've got to be recognized as the caregiver, because a lot of times the doctors because it's a doctor-patient relationship, right and you're not the patient they're not even paying attention to the caregiver.
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So it helps if you are the medical power of attorney or the guardian.
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That's helpful because you have some legal standing.
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But if you don't, you know, make a friend with the nurse in the office or somebody else.
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If you have to, if you need to send questions in advance and you have access to the portal, do that.
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So you have to be an advocate and you have to not be afraid of the white coats, right, because they're intimidating.
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They speak in language that the average person does not understand and you can't give up.
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You have to say look, we have this problem and I'm going to keep coming back until you help me solve this problem.
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And if you don't have the solution, is there a nurse here?
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Is there a social worker?
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Is there somebody else in this doctor's office who has the time to help me?
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Because, as you know, you're in and out in 10 or 15 minutes and it's like bye, bye.
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I know, OK, what do you talk us through?
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Making sure that you have the legal standing and those documents.
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Sure that you have the legal standing and those documents right.
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I know, often people may have a power of attorney and they may have the paperwork that says, hey, if mom or dad, if my LO, is unable to speak for themselves, then I get to talk.
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But you know, a lot of times as an LO you're like, yeah, but you know mom or dad or my cousin, they walked in here, they know their birthday, they can say, yeah, my name is Jay Smiles, and so can they still jump in and talk with as much authority.
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I have found that caregivers might not take as much ownership of their family member when their family member is still, you know, a bit able to communicate.
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Well, you always have to be conscious of not taking over if the person can still speak.
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But if you are that medical power of attorney, sometimes you have to explain the responsibility to the medical profession.
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They should know right.
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But there's a difference between what they see as medical capacity and legal capacity.
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Legal capacity and so when I was a power of attorney, I would take my documents and I would put them on file at the doctor's office and I would say you don't change medications unless you talk to me.
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I would go to all the appointments and if I couldn't be there, I would be there, you know, virtually on the phone.
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But I would be like any change you make, anything you do, has to be discussed with me, especially if a parent is in a hospital or a nursing home.
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Oh my gosh, the things that they will do because it's easy, because the patient says, oh yeah, I'll take that medication or sure, I'll do that test, when they don't even know what they're consenting to.
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So consent for medical treatment and agreeing to things is a huge piece of advocacy for caregivers.
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I love that.
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I'm going to repeat that.
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Y'all hear that parenting up family.
00:22:53.461 --> 00:23:05.924
Tell those doctors and those nurses do not change the medication of my LO without telling me and getting my approval.
00:23:05.924 --> 00:23:10.807
Ooh, that is finger snaps and all kind of cheers.
00:23:12.376 --> 00:23:19.986
It happens all the time and bad things happen, yeah, bad things happen when medications are changed and nobody's asked.
00:23:19.986 --> 00:23:22.599
Oh my, God.
00:23:22.981 --> 00:23:57.962
Yeah, I mean, I'm not bashing this next statement is not me attempting to bash the medical system, but I will say the health care system is not equipped with people on the ground that understand Dementia and Alzheimer's, and they definitely don't understand the role of the ongoing caregiver, and so the points that you are making are fantastic.
00:23:57.962 --> 00:24:09.234
They often speak over us in appointments and they don't take what we're saying to heart and I'm like what are you talking about?
00:24:09.234 --> 00:24:16.440
Like I'm the link here, doctor or nurse, so-and-so you want me here.
00:24:16.440 --> 00:24:22.945
Who you don't want to ask is Zeddy, because Zeddy is going to tell you that she had lunch with a unicorn.
00:24:25.195 --> 00:24:35.327
So one thing that I will tell you that supports what you're saying is a doctor told me one day he said patients lie, we don't know if they're telling the truth.
00:24:35.327 --> 00:24:41.765
So here is how you get around doctors not believing you or not paying attention.
00:24:41.765 --> 00:24:43.449
It's documentation.
00:24:43.449 --> 00:25:06.976
So if you can keep a notebook of concerns, like every day, you know mom didn't eat today, or she woke up later, she had these behaviors, or I think she's having trouble going to the bathroom, I mean whatever you can document, whether it's temperature, blood pressure, whatever take those pieces of paper, keep copies, but take those to the doctor's office and give them the facts.
00:25:06.976 --> 00:25:09.499
They will pay more attention to you.
00:25:09.499 --> 00:25:20.050
If you have documentation every day of what's going on and you can say look, this is the problem we need to deal with, this is how it's happening, then they can't say that you're making this up.
00:25:24.494 --> 00:25:25.977
That is gold.
00:25:25.977 --> 00:25:28.901
Wow, another cheer.
00:25:28.901 --> 00:25:35.347
That is me giving you cheers.
00:25:35.347 --> 00:25:37.770
That's some Beyonce, taylor Swift cheer.
00:25:37.770 --> 00:25:49.538
You can write it, uh, for parents in our community.
00:25:49.538 --> 00:25:51.803
You can write it on a piece of paper, write it in your phone, send yourself an email, whatever it is.
