Transcript
WEBVTT
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Did you tell your father that you gave the bed away, or did you just say, hey, let's get a new bed.
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No, I didn't tell him.
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I love that I didn't tell him.
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I just said I'm going to get you a better bed.
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I'm going to get you a brand new bed.
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I call it the lie of love.
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Yes, it seems like you and I have been friends for longer than we knew, because you've been lying too.
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I've been lying, I've been lying to my mama so much.
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Actually, lying to my mama for her Alzheimer's informs my improv and my comedy a great deal, because I get used to making up so many stories for her that I'm able to create all kind of stories.
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When it's time to make a joke for the stage, I'm like, oh yeah, I could just add the end of that one and tack on that.
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Oh, you know what that sounds good and it's not really a lie.
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Karen, it's really sort of like it's a lie, Karen.
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It's okay, though A story to help the situation that you find yourself in.
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That sounds like my grandfather.
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My grandfather would say, yeah, it ain't always feasible to tell the truth.
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That's a good way to put it.
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Parenting Up caregiving adventures with comedian Jay 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 in anything with a heartbeat.
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Spoiler alert this shit is heavy.
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That's why I started doing comedy.
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So be ready for the jokes.
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Caregiver newbies, ogs and village members just willing to prop up a caregiver you are in the right place, hi, this is.
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Zeddy, I hope you enjoy my daughter's podcast, is that okay?
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Today's supporter shout out is from YouTube David Miller 1055.
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Thank you for your service and care for those who need it.
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Blessings to you and all the caregivers in the world.
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Heart emoji, party hat emoji and blushing cheeks emoji.
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You're very welcome, david, very, very welcome.
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If you want to receive the supporter shout out, please review on apple podcast.
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Yes, on apple podcast.
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I don't care if you don't like apple.
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If you're all down with android, I need you to go over to apple podcast and click, because that's where the people who give the money look.
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Also, instagram and YouTube.
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We like the love from all the people.
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Thank you.
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Today's episode successful caregiving without self-sacrifice.
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Parenting Up community.
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I don't even know why I deserve all the blessings and grace from the caregiver.
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Angels or divine nation I don't even know what it is, but I keep getting guests that just level up, level up, level up.
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They know more stuff than I do, they've been through more than I've been through and they can tell us stuff to help us make it one more day, one more hour, one more minute as a caregiver.
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And it has happened again.
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Welcome 2025.
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We have Karen Weaver.
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If Karen doesn't know it about caregiving.
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It hasn't happened.
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That's what that means.
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I've decided it.
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She might not agree with me, but who cares?
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It's my podcast, I can do what I want.
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Hey, karen, how you doing girl.
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Doing great.
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I'm just so happy to be here.
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Thank you for the invitation and the opportunity 100%.
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Now, before we get into all of the juicy juicy bits.
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I'm going to let them know that you view caregiving as a calling and you're an author and you've got a whole lot of other fancy stuff.
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But as it relates to the parenting up podcast, you say, hey, some stuff is just a calling.
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You have cared for more people that I could count.
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You have cared for more people that I could count.
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You have cared for more people than some people have had wives that may or may not have been a president in the United States that I may or may not have voted for.
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But let's just say you count.
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Not only you know your mother, your husband, your father.
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Those are direct one-to-one relationships where you were the caregiver.
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But even times where you have volunteered in hospitals, in times where you've helped in your church or with your neighbors, you take this caregiving thing very seriously and so for that, right up front, I want to say thank you.
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Thank you so very much.
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Wow, Now you've cared for a husband with a disability, who was disabled In a wheelchair, your father with Alzheimer's, your mom was all also sick.
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You tell me which one you would prefer to start with sick.
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You tell me which one you would prefer to start with.
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I don't want to just do it in chronological order, because maybe one meant more to you or one touched you, and I don't mean mean more from a loving standpoint, but as a caregiver one may have resonated more and I want to make sure that this parent but the parents in that community gets all the juicy bits that you have to tell.
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Okay, Well, I definitely would want to start with my husband.
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I mean, that was probably the biggest caregiving project of my journey.
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My husband had a massive stroke at 39, and that completely disrupted my way of life and what was normal for me.
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So I would definitely say that was the most impactful caregiving assignment that I had throughout my life, Because really I was taking care of my husband for like 27 years and he not only had a stroke which caused him not to be able to work, not to be able to drive, but then a few years later he lost kidney function and my oldest son gave him a kidney and then he lost kidney function again and he was able to survive dialysis for about four years before he passed away.
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So it was very heartfelt, for sure.
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I can't even add 39 and 27.
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And my first degree is in engineering.
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It sounds like forever.
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That's what 39 plus 27 sounds like Long time, a lot of love and a lot of long time.
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One of the things that stood out to me that kind of connects our journey, as you said, when your husband had the stroke, it was kind of the middle of the night.
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He was 29, excuse me, 39 years old and he had come home from work.
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I went to Howard University, shout out to the DMV, and so when you mentioned Safeway, I was like, oh, I went to Safeway all the time Grocery store.
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But you said you heard a thump or a thud or a loud noise on the floor and you thought he was playing around because he was a jokester.
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He was a jokester.
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That's the same thing that happened with my mom.
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Wow, um, she found my father.
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He had a massive heart attack and she found him on the couch and she thought that he was playing I don't know if anybody out there listen, who could do a study on the number of times that an African-American man who is known to be a clown may be in some type of medical distress but his wife or children are like, get up here.
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My mom told me before her Alzheimer's kicked in.
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She said, she looked at him and she said boy, boy.
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And she kind of hit him with a I don't know with a hand or elbow or something and said if you don't stop playing Jock Smith, I know something.
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Yes, when he didn't move.
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Yes, Absolutely.
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There was something to it, absolutely, absolutely.
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Because I remember going to that side of the bed and I was like, come on, it's too late to be playing around.
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You know, you just got home, you got to go back to work, you know, and he was literally trying to lift himself up.
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But every time he tried to lift himself up he would go back down, and when he wasn't able to speak, then I figured oh no, something's going on, something's wrong, I need to call for help.
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This is, this is not normal.
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So and at that time I didn't have as much awareness about what it meant when somebody had a stroke and the signs and things like that.
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I mean now I would be able to identify it probably almost immediately if I saw someone in that type of distress, if I saw someone in that type of distress.
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So but yes, Well, if some, you know, most of our listeners are in the dementia community.
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However, you know my mom, after maybe 11 years with dementia, she had a stroke.
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So, it's not to say that all of these ailments and diseases don't decide to play footies with one another.
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What would you say, are those signs that you now know so well?
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That means a stroke is coming.
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Well, when you see someone and they sort of one side of their face sort of goes limp, and when they can't use like one of their hands or they have difficulty walking, because usually the strokes actually attacks one side or the other side of the body and that really has to do with where it is in the brain, so that's probably the most can't speak, you know, starting to mumble words, you know, can't really get out of thought that has any type of coherency.
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So, yeah, I definitely think I would be able to notice that if I was in that situation.
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And yeah, unfortunately, well, my dad had Alzheimer's.
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Unfortunately, though, he never experienced any of those what I call the vascular type of diseases.
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On top of that, but that was a whole nother journey in itself.
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And you know, the funniest story I remember about my dad was going to his house and there was a frying pan in the backyard.
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And I said dad, why is the frying pan in the backyard?
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He says I don't know.
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I don't know how it got there.
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I didn't put it there, you know, I don't know how I got there.
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I didn't put it down, you know.
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Somebody's cooking grass.
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My grandfather called marijuana grass.
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I was like how do you know how to call it grass unless you've been using it?
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It was amazing.
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And when I went out there and the frying pan was obviously had been on fire and we are so fortunate that he didn't catch the house on fire while he was trying to go from the kitchen to the back door to throw the frying pan out the back door.
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So, and it still took me a while to kind of figure out, you know there's something wrong with my father.
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So eventually I told him he couldn't live at his house.
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He had to come live at my house because it was.
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I didn't think it was safe for him to't live at his house.
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He had to come live at my house because it was.
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I didn't think it was safe for him to actually be in his house.
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But those were some funny times for sure, just watching somebody with with having memory issues.
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So, if I'm, if I'm tracking this just to make sure that everyone listening and watching, and for everyone in the Parenting Up community, all of this is very carefully and warmly described in the book.
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I don't want to give too much of it away.
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The book is entitled Reaching Up for Comfort Caregiver Experiences Questions and Prayers.
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So for those of you who definitely lean into a Christian based lifestyle, Karen has added Bible verses that have helped her along the way with certain very specific questions, experiences and challenges, and she has reflections and questions for you, things that she thought helped her through when hindsight gave her an advantage, point of like, I don't know what, what the hell actually did help me get through this, but a unique thing is that, uh, your father came to live with you after your husband had a stroke and and you glossed over that so smooth like a little pat of butter you asked my dad to come live with me.
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You're not acknowledging, sister girl, that your husband had already experienced his medical event with the stroke that left him found in a wheelchair, because some people recover from a stroke and are able to walk again now, others lose their life.
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So you know there are many layers to this thing.
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So your father moved in with you.
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So then you're caring for two in your home dementia sufferer and then a stroke survivor who's wheelchair bound Right.
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Well, I don't even know where you want to start, honey.
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Well, my husband.
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he wasn't always wheelchair bound, though he there were some periods of time where he was walking and and and that was probably I don't know if it was good or bad, because he would drive the car half paralyzed.
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So he would do a lot of things that you shouldn't do if you don't have the use of the right side of your body.
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He would still try to cut the grass, but when he lost.
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I'm sorry.
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You said cut the grass.
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Yes, Was the grass zigzag like a zebra?
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How did the grass look?
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I'm going to tell you.
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You have one side of your body and you cut the grass.
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My husband could cut the grass.
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I mean he did it?
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Did the grass have stripes in it?
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No, the grass looked good, jay, I'm telling you he was an amazing person.
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He really could cut the grass, and so for the time that he could do what he could do, he really did it.
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I would come home and he would say I drove to my mother's house and I'm like you drove with a car to your mother's house, like you don't have any car insurance, you don't have a license.
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I mean, this could be an issue.
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So that was always a challenge with him because he never wanted to give up and when my dad, when I moved my dad in, my husband actually had gone back to dialysis.
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So that was why I was so trying, because we were dealing with the dialysis schedule and I was working with what was going on with my dad and his memory care issues, and then my dad ended up also having prostate cancer.
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So, um, yeah, no, wait, wait.
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Karen, you can't say so.
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Um, yeah, hold on, hold on now.
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When your father moved in your husband, your husband was able.
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Was he still sometimes driving?
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No, no, he wasn't.
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He wasn't trying to drive by that time.
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By that time we had really that was only early on in the game he was trying to drive.
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So by that, by the time my dad moved in, my husband had slowed down quite a bit.
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He was still able to walk, sometimes with the cane.
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Then there were some days he definitely had to do the wheelchair and so we just had to navigate the wheelchair.
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I usually had a wheelchair down on the bottom floor.
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I had a stair lift to go to the top floor, then I had a wheelchair at the top floor, you know, to help navigate upstairs.
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So yeah, you had the chairlift on the stairwell Mm-hmm.
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Now, which brand worked for you?
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I have heard horror stories about those chairlifts.
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Really, do you have a manufacturer that you can suggest?
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Oh, well, the company was called Stairlift and I had a very good experience with them because I had had a chair lift also installed in my parents' house.
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Okay difficulty with it not working or something.
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They were very prompt in coming out and I had a great experience.
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I told y'all.
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I told y'all she knew everything.
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I told y'all if Karen doesn't know it, then it hadn't happened.
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So you have a wheelchair on the first level and then a stair chair, climber, lifter thingy in a wheelchair upstairs.
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So that's what you call efficiency and redundancy people, okay, which what you didn't hear Karen say is that she carried a wheelchair upstairs every day, every night.
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So you have to figure out how to find, you know, utilize your medical insurance or various hospitals or nonprofits to get the resources you need so that you can have the things that are required in your home.
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So your father moves in.
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Mm-hmm.
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How much did he fight you Well?
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we tricked him.
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Oh, this is good.
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So we um, so he he favored my brother.
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So I used my brother to trick my father.
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So I told my dad that if he'd come to my house and my brother was going to come pick him up and take him golfing, come to my house and my brother was going to come pick him up and take him golfing.
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So my brother came, took my father golfing and while they were golfing I went and got everything else I needed to bring down to my dad's house.
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I had been bringing stuff down periodically, so I had been preparing his room and when he came back from golfing he said well, I need to go home and take a shower.
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And I said well, no, you can take a shower here.
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He said but I don't have any clothes.
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I said you know what?
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I have clothes upstairs.
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I got all your clothes upstairs.
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I had the clothes in the drawer, I had the clothes in the closet, I had everything he needed.
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And so he took a shower and he talked about it for a couple of days, but then he just kind of settled in, he just eased into it.
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He eased into it.
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My father was a very quiet person, okay, so he wasn't aggressive type of person.
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He was very passive, which was to my advantage Because if he got upset, there was something really, really, really, really bad going on.
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But, for the most part it was a pretty easy transition.
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I did kind of suffer a little bit because I got rid of his furniture out of his house too fast and he said to me I want my dad from my house and I had already given it away.
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So I was I felt a little bad about that.
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So I said you know what, dad?
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I think we're going to get you a new bed, a brand new bed.
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And so that was the way I kind of got through that little time I read that in your book and I laughed and I scratched my head and I held my heart because I know that conundrum.
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Right, you try, as a caregiver, you're trying to move on.
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You have, you know, all of a sudden plopped onto your lap all these extra responsibilities and you're trying to move on, to handle what feels to be the most pressing and the highest priority, which is everyone's living life.
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Like, what do we got to do, we got to eat, we got to take medicine, you know, we got to exercise, we got to go to bed, we got to take a shower.
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And so then, when you start thinking about mementos and memories and sentimental things, that doesn't always come to pass.
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But I saw in one of your chapters you made I don't want to give too much away, but it was one of the ones that I highlighted and you mentioned something and I paraphrased something like be careful, think about what you're saving or what you're doing, like that, hey, what's up?
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Parenting, up family, Guess what?
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Have you ever wanted to connect with other caregivers?
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Did you tell your father that you gave the bed away or did you just say, hey, let's get a new bed?
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no, I didn't tell him.
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I love that.
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I didn't tell him.
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I just said I'm gonna get you a better bed.
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I'm gonna get you a brand new bed.
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I call it the lie of love.
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Yes, it seems like you and I have been friends for longer than we knew, because you've been lying too.
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I've been lying.
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I've been lying to my mama so much actually lying to my mama, for her alzheimer's informs my improv and my comedy a great deal, because I get used to making up so many stories for her that I'm able to create all kinds of stories.
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When it's time to make a joke for the stage, I'm like oh yeah, I could just add the end of that one and tag on that oh, you know what that sounds good and it's not really a lie, karen it's really sort of like it's a lie, karen.
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It's okay, though a story to help the situation that you're you find yourself yeah, that sounds like my grandfather.
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My grandfather would say, yeah, it ain't always feasible to tell the truth.
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That's a good way to put it, because when he said, if it's not feasible to tell the truth, then it's not really a lie, and I was like, well, I don't know, I don't really know about that, but in any case, I agree with you and I do it.
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The same thing, whatever you want to call it.
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Yeah, I do it, and it is quite useful.
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Your father also endured prostate cancer after after his Alzheimer's diagnosis.
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I just need everybody who is listening and or viewing this podcast episode to understand the layering of things that Karen has experienced in her caregiving journey.
