Episode 5
Terry: Blending career and end of life care for Dad
Welcome!
In this episode we explore Terry's experience with her father who fell into poor health shortly after she relocated back home after living in Australia.
You know we love sticky topics, here are a few:
- Another female in the picture: girlfriend bails
- A morally supportive brother but can't (won't) provide hands on care
- Handling incontinence issues
- Lessons learned
Caveats:
- This is a judgement free zone
- There are no "shoulds" allowed, we live in curiosity
- Take what works well for you, leave the rest!
- If you are finding value in this podcast, please share and leave a review so others can find it too!
If you would like to dig deeper - check out my upcoming course and join the waitlist.
Rebecca
Disclaimer: The information presented on this podcast is solely for information purposes. We do not provide medical, legal, financial, or other professional advice through this podcast and we are not responsible for any errors or omissions. It is your responsibility to seek advice from a licensed professional. Any actions you take are done at your own risk.
Transcript
Um, okay, perfect.
Speaker:Okay.
Speaker:Um, well, and, and, uh, and you're at home right now, right?
Speaker:Am I?
Speaker:Yes, I worked up against the zinc.
Speaker:Perfect.
Speaker:Okay.
Speaker:Awesome.
Speaker:Yeah.
Speaker:All right.
Speaker:Um, so how much, uh, did Jaylen tell you about this?
Speaker:I wanna make sure that you know what you're getting into.
Speaker:So I understand that you have left your profession as a physician to
Speaker:take on this new venture of you.
Speaker:I, I guess you should tell me more about how you're framing it up.
Speaker:Sure.
Speaker:Um, so I am, uh, moving to more of a part-time clinical position because I
Speaker:really want to do a podcast and a course around supporting women who are navigating
Speaker:the challenges of aging parents.
Speaker:Um, and I, my spin on it, my specific interest.
Speaker:Is not so much in telling people what they should do or shouldn't do, it's allowing
Speaker:a conversation about boundaries, about, you know, constraints of, we only have so
Speaker:much time, so much money, so much energy.
Speaker:And how do women that are balancing a career and parents and maybe
Speaker:children or grandchildren, how are they making these decisions in 2023?
Speaker:Um, and so more of an exploratory, there's a lot of resources
Speaker:out there for caregiving.
Speaker:That sort of have this tone of, um, you have to, you should, you
Speaker:know, here's the maximum you can do.
Speaker:And, and they don't really have like a, I'm kind of the balance to
Speaker:that of hearing people's stories.
Speaker:Um, what did, uh, how did they make these decisions?
Speaker:How did they feel about it?
Speaker:Um, Uh, how is it if, if, if the, you know, support has passed?
Speaker:Um, how do you feel now?
Speaker:Um, and I've gotten some super interesting answers.
Speaker:I'm also an anthropologist by training.
Speaker:Um, wow.
Speaker:So half of it's more just that kind of anthropology approach of mm-hmm.
Speaker:You know, women in 2023 are very different than women in 1973.
Speaker:Um, and I wanna update sort of how the, the cultural and social
Speaker:understandings of how and when.
Speaker:Women are showing up for elderly persons in their life.
Speaker:So I know it's a long explanation.
Speaker:Um, but my, the gist of it's gonna be a podcast cuz that's how I consume
Speaker:most of my information right now.
Speaker:And, um, and it's gonna be me talking to women exploring, not, not fixing,
Speaker:not, you know, problem solving, um, but getting those stories out there
Speaker:so we can start to think about this.
Speaker:Like if women start talking about it, Then maybe we'll come up with
Speaker:something, a different construct than the current one, which is actually a
Speaker:lot of shame and a lot of, uh, other, other emotions wrapped up in what we
Speaker:can and can't do for other people.
Speaker:Um, so as a derivative of that, I will, I have a course I've already written.
Speaker:I haven't published it yet.
Speaker:Um, But the re, the way I wanna support my myself doing this is to have a, a podcast
Speaker:and then the people that wanna learn more, I'll have a whole course laid out.
Speaker:So anyway, that was a long explanation.
Speaker:Okay.
Speaker:I've been wanting to do this for a long time.
Speaker:Um, and I finally got the courage to, to basically cut my job back and start
Speaker:doing it for okay, so it, it's your dad.
Speaker:So tell me about that.
Speaker:So you said what year was it that you decided he needed more help?
Speaker:2016.
Speaker:So I came back from Australia in October of 2016.
Speaker:And, um, So I, I don't know.
Speaker:Okay.
Speaker:And so what was it about, what, what if you don't mind sharing,
Speaker:um, what was it about him?
Speaker:Did you hear something in his voice that you thought he needed help?
Speaker:Did a doctor tell you he needed help?
Speaker:Um, like what signaled to you, Hey, dad needs a little more support.
Speaker:What actually happened?
Speaker:So he had had a couple of falls.
Speaker:Okay.
Speaker:He, he, so he was going through this series of just falling, um, and had
Speaker:broken his leg at the time he was living with, and, and again, it was in, um,
Speaker:always in his home, my parents' home.
Speaker:But my mom passed away in 2007 and he had been living with his girlfriend.
Speaker:She had moved into the house.
Speaker:And, um, um, when I got there, um, He shared with me that, um, the two of
Speaker:them had decided to sell his house and move into something small, smaller, so
Speaker:that there wasn't so much to maintain.
Speaker:He had a very large yard, big garden, all that kind of stuff, and I was, I
Speaker:was very surprised, but very supportive.
Speaker:Right.
Speaker:If that, that's what they wanted to do, then great.
Speaker:And, and I, I remember this so very clearly how this transpired.
Speaker:I arrived late on a Monday.
Speaker:He told me that very first thing Tuesday morning, and on Wednesday she,
Speaker:this, the, the, the female friend, the girlfriend shared that she had purchased
Speaker:a home and was moving away from her.
Speaker:And yes, and.
Speaker:He, he, it's completely took him by surprise.
Speaker:So it was a breakup.
Speaker:Well, they ended up moving out together.
Speaker:So
Speaker:they train.
Speaker:So she moved out.
Speaker:He moved out shortly after that.
Speaker:He moved in with her.
Speaker:Shortly after that, my brother and I moved the furniture that he
Speaker:wanted and all that kind of stuff.
Speaker:And, um, I had decided that, um, I, I, I didn't really trust the situation really,
Speaker:what was going on, and I don't, I didn't really feel that he was in good health.
Speaker:Again, this whole falling thing, we didn't really know why he
Speaker:was falling and all of this.
Speaker:I just decided I was gonna stay, um, at least for a while, and that I would stay
Speaker:in the home, right in my parents' home.
Speaker:I would, that's where I would live since he had moved out and all of
Speaker:that, and within two weeks, Um, she broke up with him for real.
Speaker:Hmm.
Speaker:And he was back in the house.
Speaker:And again, it was very, it was very hard for him.
Speaker:He, even though he wasn't a, never was a big communicator.
Speaker:Right.
Speaker:He wasn't a, the kind of man that shared his feelings, but
Speaker:it was very hurtful for him.
Speaker:Sure.
Speaker:And, um, and so he moved back into the home and, um, and
Speaker:I, and it was just kind of a.
Speaker:Decision that, that I was staying and I was gonna take care of him.
Speaker:That just kind of happened, right?
Speaker:It wasn't really even something that was
Speaker:planned for or, um, you know.
Speaker:It just, it just was kind of what I was gonna do.
Speaker:Right?
Speaker:It was just, um, and it all happened with it in probably a,
Speaker:an eight week period of time.
Speaker:By the time I got there, the move out, the move back, all
Speaker:of that kind of thing happened.
Speaker:And I had also, because he was gonna sell the house and, you know, and
Speaker:all that kind of stuff and move out.
Speaker:I had started going through cleaning out closets and things.
Speaker:My parents.
Speaker:Lived in that house for more than 40 years.
Speaker:Right.
Speaker:So I had started the process of now going through closets and, you know, what are
Speaker:we gonna do for, you know, what are we keeping, you know, what are we gonna sell?
Speaker:Who, you know, what are we gonna do with all this other stuff?
Speaker:So then I started that long exercise of trying to clean out the house as well.
Speaker:So do you, do you have any, you, you mentioned a, do you have a, a sibling
Speaker:or how many siblings do you have?
Speaker:I have one younger brother.
Speaker:One younger brother.
Speaker:Does.
Speaker:He lives in this area as well.
Speaker:Yeah.
Speaker:And so how was it decided that you'd be the one to live there?
Speaker:Did the younger brother have something else?
Speaker:Or like, was that discussed?
Speaker:Is it just a assumed or how did that happen?
Speaker:It was kind of assumed.
Speaker:So he has a family, he has three kids.
Speaker:Okay.
Speaker:Right.
Speaker:And I don't have a family.
Speaker:And, um, You know, and I guess so I, I guess it kind of also deel
Speaker:defaults a bit to the woman, right?
Speaker:To the being the caregivers.
Speaker:Right.
Speaker:Jalen maybe shared a little bit about that with, in her situation as well.
Speaker:Right.
Speaker:Our brothers have both shared, thank God, uh, we had you because we
Speaker:couldn't have done what y'all did.
Speaker:Right.
Speaker:My, me, with my father.
Speaker:And, and she with, you know, with her mom.
Speaker:Um, So it was kind of that as well.
Speaker:Default, I'm the one that's available and I'm more of a caregiver.
Speaker:He wouldn't have been able to move in or any of those kinds of things.
Speaker:So, um, and he was very supportive, right?
Speaker:Um, he, he was very, he was hands off for sure, but if I needed anything,
Speaker:of course he was right there.
Speaker:Can we, can we unpack that a little bit?
Speaker:Because I'm really fascinated with, um, the family decision making for this,
Speaker:and a lot of times it's not overt.
Speaker:Like there's not a meeting where somebody says, you know, you're
Speaker:gonna move in and take care of dad.
Speaker:Mm-hmm.
Speaker:But when you say that your brother felt like he couldn't have done
Speaker:what you did, if we get really clear on the verbiage mm-hmm.
Speaker:Is it that he, he wasn't physically able to do it, he
Speaker:wasn't emotionally able to do it.
Speaker:Um, like, if you didn't exist, what, what do you think would've happened?
Speaker:That is a great question.
Speaker:If I didn't exist, what do I think would've happened?
Speaker:Um, I warned you about these second order questions, right?
Speaker:Yeah, yeah.
Speaker:That's, but it's good.
Speaker:So
Speaker:I, I guess if I had to.
Speaker:My expectation is that my dad would've lived alone.
Speaker:Um, and you know, my brother would've stopped in, right?
Speaker:And but my father's quality of life and his length of life would've been.
Speaker:Less.
Speaker:And again, I'm not saying that as a anything wrong, you know, that my brother
Speaker:would've done anything to harm him or, you know, anything like that or neglect him.
Speaker:But again, my brother would not have moved in.
Speaker:My father would've lived alone until, you know, he couldn't.
Speaker:And then he would've moved in probably into an assisted living situation, which
Speaker:ultimately happened with, with me as well.
Speaker:My dad got sick.
Speaker:Um, so maybe, so he, if, if your dad ended up in an assisted living,
Speaker:the timeline might have been a bit different, I guess, if your brother was
Speaker:in charge, if that's the right word.
Speaker:Yes.
Speaker:Um, so another thing, and this is actually a phenomenon that I, I noticed a lot, uh,
Speaker:in my clinical care, um, and I'm not sure if it, it applies in your case, but you
Speaker:moving back home to sort of assist with dad and the other female in the picture
Speaker:exiting is actually not super unusual.
Speaker:Um, for a lot of different reasons.
Speaker:But do you feel like the timing of the breakup just a few weeks later has
Speaker:anything to do with another sort of, I don't wanna use the word caretaker,
Speaker:but another person who can provide care showing up and then the other
Speaker:female sort of feeling, and maybe this is an unfair question, but I just see
Speaker:it so much, I don't know what to call it, but, um, there's sort of, some
Speaker:people end up staying together because there's this care dynamic and then,
Speaker:Another caregiver appears somehow, and then one of them leaves somehow.
Speaker:It just is a weird thing we always, we often see in, in the rehab world.
Speaker:I just wondered your thoughts on that or if it was just kind of, uh, a coincidence.
Speaker:I, I, I, I don't know that it's, so she told me she and
Speaker:I did not care for each other.
Speaker:Um, But she told me the reason that she had decided that she was
Speaker:going to move out even though.
Speaker:Whether it was my father's misunderstanding that he was going
Speaker:with her originally, or she had, they had discussed that they were gonna
Speaker:move out together into this smaller place or whatever happened there.
Speaker:I, I, I don't know, but she told me that she was leaving because
Speaker:she couldn't take care of him.
Speaker:Oh, he was too.
Speaker:And so, you know, again, even though she knew I was coming back
Speaker:to the United States, she did not know that I was staying in Boise.
Speaker:That was never discussed because that was not the plan.
Speaker:I was coming here, there, you know, for a week to vacation, see my dad,
Speaker:and then I was on my way again.
Speaker:So I don't know if she designed it to be like that or if
Speaker:that part was a coincidence.
Speaker:Um, But then her ultimate, you know, breakup, again, I don't know if that was
Speaker:part of the original design or then that became convenient because I was there.
Speaker:Right.
Speaker:Um, can you step us through sort of the timeline of once you
Speaker:arrived back in 2016 and just the arc of his function or decline?
Speaker:Like, uh, you know, did he in need increasing amounts of care?
Speaker:Did he have a new event, like a stroke or a.
Speaker:The progressive condition like Alzheimer's?
Speaker:Like what, what did that look like, I guess?
Speaker:Or is he still living, or did he pass away?
Speaker:Passed away.
Speaker:And what year was that?
Speaker:This, uh, uh, 2020.
Speaker:He did, he 20.
Speaker:20.
Speaker:Oh, okay.
Speaker:So there was a, a four year period then, uh, and there, what did that look like
Speaker:for you, like years one through four?
Speaker:Was it, um, kind of light the first two years and then
Speaker:suddenly got more demanding?
Speaker:Or what, what was that like?
Speaker:So, um, there were, there were definitely events.
Speaker:Again, the falling right?
Speaker:Mm-hmm.
Speaker:Did continue.
Speaker:Um, we, um, but he was in care and we knew what the problem was.
Speaker:We ultimately knew what the problem was and we were doing everything
Speaker:we could to kind of mitigate that.
Speaker:He did have an emergency appendectomy.
Speaker:Um, he did part one of his falls, broke his back.
Speaker:Mm-hmm.
Speaker:Um, and then January of 2020, um, he got sick.
Speaker:One, he, he, he told me, I, you know, I don't, I don't feel good.
Speaker:I wanna go to the emergency room.
Speaker:He couldn't really tell me what was the matter, but of course I took
Speaker:him that day to the emergency room.
Speaker:Um, He ended up having, um, a systemic blood infection, um, almost died.
Speaker:In that period of time in that it was like on a Friday morning,
Speaker:by Sunday he was almost dead.
Speaker:My, you know, they're, they're coming to my brother and I going, okay, what, you
Speaker:know, what, what, what's the plan here when he, you know, when he dies, right?
Speaker:We're, we're, we're trying to keep him alive right now, but we
Speaker:don't think it's gonna happen.
Speaker:So what's, what, what's the plan?
Speaker:And we were just like going, what do you mean?
Speaker:Anyway, so that was mid-January of 2020.
Speaker:He came out of that, thankfully.
Speaker:And I can add some additional detail here.
Speaker:As you know, a as well ended up of course, because he had
Speaker:been so sick in rehab, right.
Speaker:So he has the hundred days or whatever it is that Medicare mm-hmm.
Speaker:Will cover, um, uh, for rehab.
Speaker:And covid hit, right?
Speaker:Yeah.
Speaker:Well, he is in rehab, so we could no longer go see him.
Speaker:He's in this rehab situation.
Speaker:You know, COVID hits when he gets in, when he the, when he was in
Speaker:the ho several times over the years when he was in the hospital.
Speaker:Definitely when he broke his back and definitely when he had this situation,
Speaker:um, where he had this blood infection.
Speaker:He got, I can't remember exactly what the term of it is.
Speaker:It's, but it's kinda like hospital head where he gets dementia.
Speaker:Yeah.
Speaker:Like an encephalopathy.
Speaker:Doesn't know where he is at.
Speaker:He's Or delirium.
Speaker:Yeah, delirium fantasy world.
Speaker:And gets very combative.
Speaker:Right.
Speaker:And cuz he tries to escape.
Speaker:He's not combative because he is anger angering.
Speaker:He is trying to lash out, but he's just trying to escape all the time.
Speaker:So he is, gets in that so.
Speaker:He had still been a little bit in that confusion state,
Speaker:still early in rehab, right?
Speaker:When again, when Covid hit, didn't really understand what was happening,
Speaker:why, you know, so I, he had a window.
Speaker:I was just going to the window to communicate with him, whatever.
Speaker:He was in physical therapy, but he wasn't ma.
Speaker:So he got to a point where he is no longer making progress with physical therapy
Speaker:and able to walk and all of that, and.
Speaker:On a Thursday, they called me and said, okay, by Monday
Speaker:your dad has to be outta here.
Speaker:Hmm.
Speaker:And, um, because he's not making progress and Medicare's
Speaker:gonna, you know, kick him out.
Speaker:So I scrambled and found the assisted living place that would take him
Speaker:with the care level that he needed.
Speaker:If I remember correctly, it was a care level three or
Speaker:something along those lines.
Speaker:And, But again, COVID, nobody can visit.
Speaker:Nobody can come in, nobody can do anything.
Speaker:They gave my brother and I permission from the door to his apartment to bring in
Speaker:the furniture that we needed to bring in.
Speaker:Um, and then, you know, we had to leave.
Speaker:So here we bring him in to this environment.
Speaker:We're trying to explain to him what's happening.
Speaker:I think he conceptually understood, but it was like, that's not what he wanted.
Speaker:You know, why aren't we coming to see him?
Speaker:It was a very, very difficult time.
Speaker:And as I'm sure you know from everybody, right, everybody's got
Speaker:a s a story about covid and leaving their ones behind somewhere, right?
Speaker:And then in.
Speaker:Um, and then when we could go visit him, of course, when things broke a couple
Speaker:of different times we could go visit.
Speaker:Uh, but in October, well April, while he, while he is in rehab, he starts to
Speaker:get this spot on the top of his head.
Speaker:I had talked again on, on the phone cuz you can't go to, um, the.
Speaker:Rehab doctors about what's this thing on his head.
Speaker:At one point in time they were gonna send him to a dermatologist, but that
Speaker:didn't happen anyway, by the time I get him in a to um, get him out of
Speaker:rehab and into assisted living, and I see this thing on his head, I get
Speaker:permission to take him to a dermatologist.
Speaker:He's got a big cancer.
Speaker:Mm Oh wow.
Speaker:Big on the top of his head.
Speaker:And I had to have it.
Speaker:Um, you know, we had to have it surgically removed, and then of course he had to
Speaker:have radiation, and so I was taking him from assisted living to get these
Speaker:radiation treatments and all of that.
Speaker:At the same time, I was diagnosed with what ended up being lung
Speaker:cancer, so I had a surgery in June.
Speaker:Have part of my, I had a left low lobectomy, so my lower left, low, low,
Speaker:low, whatever that is, um, ended up with stage A one, uh, one lung cancer.
Speaker:Anyway, then, so I was going through, you know, so there's all that, and then in
Speaker:October he gets covid, oh my goodness.
Speaker:Ends up in the hospital.
Speaker:And he's still in the assisted living by October, still in assisted living.
Speaker:Right.
Speaker:And because he, I, I, I, I didn't think I could care for him because he was,
Speaker:He was in a wheelchair pretty much by this time.
Speaker:He wasn't walking, he wasn't stable and I didn't feel like I wanted
Speaker:to have him back at home cuz of the, you know, the risk factor.
Speaker:He was a very big man and, um, I just, we just didn't feel
Speaker:like I should bring him home.
Speaker:Now when you say we was that you and your father or you and your brother?
Speaker:Brother?
Speaker:Yes.
Speaker:You and your brother?
Speaker:Yes.
Speaker:And who, did either of you have the medical power of attorney?
Speaker:Yes.
Speaker:Yes.
Speaker:My brother has all of that.
Speaker:Had all of that.
Speaker:So he had the med, so he was making the medical decisions.
Speaker:We were making them together.
Speaker:But he was the one that was officially had the, the, you know,
Speaker:the signature rights to do all that.
Speaker:Do, do you know, uh, how it was determined it would be him and not you?
Speaker:Is it because you were out of the country a lot?
Speaker:Oh, I was gone.
Speaker:Or traveling.
Speaker:Always here.
Speaker:So yeah, so he was on the bank accounts and he was all that stuff, and that
Speaker:was stuff that my parents had set up years before and we had discussed
Speaker:it all and it made complete sense.
Speaker:Okay.
Speaker:Right.
Speaker:Okay.
Speaker:Yeah, because he's the one that I wasn't, did your brother, um, was, was he pretty
Speaker:agreeable to these care decisions?
Speaker:Like it, it sounds like when he went into the assisted living initially that
Speaker:wasn't at that point, the forever plan.
Speaker:It was just the rehab got cut short and he needed to go back there.
Speaker:Um, did you have a lot of con uh, like contentious conversations?
Speaker:Was there a difference in opinion or were you guys pretty much
Speaker:in agreement moving forward?
Speaker:Was there, did you feel a lot of pressure to, to do more, to try to take him home?
Speaker:So every decision that my brother and his name is David, that every decision that
Speaker:David and I made, We, we made it together.
Speaker:We talked about it sometimes.
Speaker:We talked about it, you know, a hundred times in a hundred different ways
Speaker:with a hundred different scenarios.
Speaker:And always landed where we did whatever the decision was, uh, together.
Speaker:So we didn't, didn't, we didn't cause any conflict in our relationship.
Speaker:We were always.
Speaker:You know, we were always pretty much on the same page.
Speaker:I think partially for, I'm, I'm gonna say kind of two reasons.
Speaker:I think part of it is because my brother knew that I was taking the
Speaker:bulk of the responsibility, right?
Speaker:And he wasn't going to probably argue much with me about what I
Speaker:thought the best decision was.
Speaker:Um, because he knew that I, again, he, I would either be me coming, he would
Speaker:be coming back with me, I would be going with him, whatever the case might be.
Speaker:But also because I, we are very much aligned in what we wanted to have.
Speaker:And what we knew my dad wanted, right?
Speaker:We knew my dad wanted to come home, right?
Speaker:But we also knew for his health, his best care, that that wasn't the right decision.
Speaker:So it wasn't like he was saying, oh, you need to take him home.
Speaker:And I was going, no, I don't wanna take him home.
Speaker:It wasn't that at all.
Speaker:How, how did you handle, yeah, yeah.
Speaker:How did you handle it when your dad, I, I'm sure at one point was like,
Speaker:Hey, I'm, I'm ready to go home.
Speaker:I want you to take me home.
Speaker:How did you, did you redirect the conversation?
Speaker:Did you tell him that was the safest place?
Speaker:Like what did that look like?
Speaker:It looked a couple of different ways.
Speaker:Uh, Rebecca, um,
Speaker:so, um,
Speaker:Deflection was definitely one.
Speaker:Or redirection, not deflection.
Speaker:Redirection was definitely one, you know, dad, you know, this
Speaker:is again where you need to be.
Speaker:This is the safest place for you to be.
Speaker:Um, and
Speaker:I guess the,
Speaker:the reason I get a little emotional sometimes, which I
Speaker:probably will through this, these.
Speaker:Conversations is, um, there were times when I was frustrated, right?
Speaker:And so I probably didn't redirect as well as I did other times, or maybe as
Speaker:well as I maybe should have, and I would get, you know, I'd get angry about it.
Speaker:Some level of anger, right?
Speaker:It wasn't mean or, or anything like that.
Speaker:But I would get snappy with him about, you know, what do you, what do you want?
Speaker:You know, I can't, you know, you know, we can't come visit, you know, you
Speaker:can't come home where, you know, you can't be in a wheelchair in your home.
Speaker:The, the, you can't even get down the hallway in a wheelchair in your home.
Speaker:You get to the bedroom, you know, the doors aren't wide enough,
Speaker:you know, things like that.
Speaker:So I would probably get a, there were, there were times when I was a
Speaker:little bit, Frustrated and cranky.
Speaker:Were you frustrated with him or were you frustrated with, just
Speaker:with the situation or yourself or wh where was that coming from?
Speaker:I'm gonna say maybe all, maybe all three?
Speaker:Yeah.
Speaker:Um, the time, uh, probably in 2019 maybe.
Speaker:I started to see a, uh, a therapist trying to unpack my emotions because even
Speaker:though it was, I, I, I never questioned what I was, what I was doing, that I'd
Speaker:made the decision to be there and to be, be there with my dad and I had.
Speaker:And I was fully transparent about that I was going to be
Speaker:there until the end, right?
Speaker:Mm-hmm.
Speaker:Until I wasn't needed there anymore.
Speaker:Um, but I didn't expect to be as unhappy about it as I was.
Speaker:Uh, so what do you mean about the, the physical demand or the.
Speaker:And again, if we need to take a breaker, this is too much, let me know.
Speaker:Th But this is why we're talking, right?
Speaker:Because I feel like this is right underneath all of these very first like,
Speaker:you know, superficial conversations.
Speaker:Yeah.
Speaker:Oh, it's so good of you to take care of your dad.
Speaker:Do you know what that means?
Speaker:Yeah.
Speaker:Do you have any clue?
Speaker:What that means.
Speaker:And it goes back to this decision matrix of I'm gonna be there and
Speaker:I'm gonna be there till the end.
Speaker:And a lot of people get there and it's out of love.
Speaker:It's out of all, you know, it's out of Well, we can, that's a whole other podcast
Speaker:too, but, but, um, I'm not sure that women quite know what they're committing to.
Speaker:Sometimes when they kind of step in and take this on, it can be an extremely
Speaker:disruptive and taxing thing to do.
Speaker:That doesn't mean you shouldn't, you can't do it, you won't do it.
Speaker:Um, I just wanna make sure we're telling each other what that looks
Speaker:like because, um, it is a big deal.
Speaker:So, um, when you say kind of processing, You know, so maybe some negative
Speaker:emotions about him living there.
Speaker:What was the crux of that?
Speaker:What were the, the thoughts that were the most distressing?
Speaker:I think it was, um, you know, the,
Speaker:one of the things that I, that I, that the therapist helped
Speaker:me come to is the fact that.
Speaker:Even though I, I, I, I didn't have to be happy about it.
Speaker:Right.
Speaker:It was okay not to be happy about the situation because again,
Speaker:the situation was hard, right.
Speaker:So it was so I felt, I prob, I, I felt trapped.
Speaker:Right?
Speaker:E every single, you know, it was.
Speaker:No.
Speaker:Even down to the point that every night we watch the exact same TV programs.
Speaker:Right.
Speaker:I've seen every gun smoke episode, you know.
Speaker:Um, and, you know, so it wasn't like I even at nighttime after work
Speaker:and after, you know, making sure he had it, you know, I cooked right.
Speaker:I never cooked for myself, but I c I cooked meals and if I was gonna
Speaker:have to travel for work, right?
Speaker:I had every, like, three meals a day in the freezer labeled on a list.
Speaker:So he knew exactly what he was gonna be eating for, you know, days, but, you
Speaker:know, so it wasn't even that I got to.
Speaker:Um, not cooked dinner one night.
Speaker:You know, we never had popcorn or scrambled eggs for dinner, which
Speaker:is what I would've fed myself.
Speaker:Right.
Speaker:Um, you know, or, you know, watch TD program that I wanted to watch or, um, you
Speaker:know, and, and I, and I, and when I say that out loud, I think it sounds petty,
Speaker:but when you're doing it month after month after month and year after year, it.
Speaker:Is it's, it's, it's taxing.
Speaker:I, and I, and I have told many people this along the way, I, I don't know
Speaker:how in the world women that live have to work outside the home, that have
Speaker:a husband and kids how they would ever, how they, how they ever do it.
Speaker:It is, it's an, it's, it's, it was, it was, it's hard.
Speaker:It is just hard.
Speaker:And then you've got the things like, You know, then we could,
Speaker:we could probably have a whole podcast on the incontinence aspect.
Speaker:Mm-hmm.
Speaker:Yep.
Speaker:Right.
Speaker:There's that and, you know, navigating that with your father.
Speaker:Right.
Speaker:Take, you know, clean cleaning, doing all the things that you do, right.
Speaker:That you have to do.
Speaker:Um, and there's, there's that, and I, going back to my comment about my, the.
Speaker:You know, Jaylen's brother and my brother going, we could
Speaker:never do what you girls did.
Speaker:Right.
Speaker:They could not have ever dealt with the incontinence aspect of it.
Speaker:Let, let alone anything else.
Speaker:Right.
Speaker:My brother, when you're saying wouldn't, sorry, go ahead.
Speaker:I was gonna say, my brother witnessed one time only I, there were so
Speaker:many times I didn't ever even tell him about because I didn't wanna.
Speaker:Maybe I didn't wanna talk about it.
Speaker:Maybe I didn't wanna, you know, impact my dad's dignity.
Speaker:Maybe I didn't, you know, my brother just didn't even maybe wanna know,
Speaker:but he had to witness me one time cleaning up, um, a situation.
Speaker:Uh, we had people at the house.
Speaker:My dad had had lost his bowel control and I'm doing this cleanup
Speaker:situation and my brother's just like going, oh my god, you know?
Speaker:You are so strong.
Speaker:I don't know how you're doing this.
Speaker:I don't know how you do it.
Speaker:I could never do it.
Speaker:Right.
Speaker:So being that intimate with my father, right.
Speaker:You know, I'm, you know, which is something that, you know, your
Speaker:parents are w that intimate with you when you're a baby, right?
Speaker:Yeah.
Speaker:But not something that you, that, that you think about that you
Speaker:have to be that intimate with your father when you were your.
Speaker:Can, this is a, a really common topic and I wanna see if, if we can
Speaker:dive a little bit deeper into your brother saying, I could never do that.
Speaker:Mm-hmm.
Speaker:Because it's not true.
Speaker:Is that true That they physically aren't able to do it, right?
Speaker:Correct.
Speaker:They have arms and legs and eyes and.
Speaker:Cleaning supplies.
Speaker:Right.
Speaker:And so I'm trying to, to dig down into, so they know, we know they can physically
Speaker:do it, they can cognitively do it.
Speaker:Usually what they mean is I can't emotionally perform
Speaker:that task for this person.
Speaker:Mm-hmm.
Speaker:And of course, the next thought is, but I'm so glad you will.
Speaker:Mm-hmm.
Speaker:Right.
Speaker:Mm-hmm.
Speaker:Mm-hmm.
Speaker:And.
Speaker:I want to get your, your, like if, if we just stepped away from this, um,
Speaker:you're, you're a career professional woman and just this dynamic and
Speaker:it sets up over and over again.
Speaker:You know, what are, if we can get above that and think about that kind of a
Speaker:sentiment and the acceptance of that, and I'm not saying, I'm not saying that there
Speaker:should be an argument or there is a, a right way, but I'm super interested in
Speaker:this dynamic and it sets up over and over again, which is there's an unsavory task.
Speaker:Right.
Speaker:Usually something involving manual labor, unpleasant sensory experiences, unpleasant
Speaker:emotional experiences, and women are extremely adept at, at handling those.
Speaker:And the language around that is, I'm so glad you're so strong, you can do that.
Speaker:But really, if you look at it a different way, it's that there are other
Speaker:individuals involved in the care of that person that are refusing to do so.
Speaker:For reasons that are understandable, it's emotionally uncomfortable.
Speaker:But how do we have this, this dynamic setting up over and over
Speaker:again with these unsavory caretaking tasks and that, like, how does
Speaker:your brain react to that statement?
Speaker:Um, I'm so glad you do this.
Speaker:You know, that would be really hard for me.
Speaker:There's no way I could possibly do that.
Speaker:Does your brain accept that statement as true?
Speaker:Does it say, you know what, I love my brother to you.
Speaker:So I'm doing this to protect my dad and my brother.
Speaker:Does your, does a, does a center part of your brain, the, the feminine part
Speaker:of your brain, say, wait a minute.
Speaker:You know what?
Speaker:This isn't pleasant for me.
Speaker:I like, can we just all agree that it's an unpleasant experience and like how
Speaker:do you, and again, I don't, I'm not saying there's a right answer, but I'm
Speaker:really interested because this sets up over and over again in these stories
Speaker:and I, I'd like to know how your brain processes that, that exact situation.
Speaker:I don't know if that, at least for me, that there's that much
Speaker:thought that goes into it.
Speaker:Right.
Speaker:So I would think it would probably be in the category of I.
Speaker:You know, trying to protect my father and my brother.
Speaker:Right.
Speaker:I'm here, I'll do it.
Speaker:Right.
Speaker:It's not, uh, you know, it's, it, it's totally unpleasant, but
Speaker:I've already been here, done this before, so it just makes sense that
Speaker:I'm here and I'm doing it again.
Speaker:Right.
Speaker:And so I think, but the other area of that would be is if I was going to,
Speaker:if I was there, And my brother was there and I needed, and I wanted to push the
Speaker:task off on him, that that would've just added more stress on me to have that, you
Speaker:know, conflict, whether it was a small conflict or a big conflict because it
Speaker:was already such an emotional situation.
Speaker:Sure.
Speaker:That I would just assume, skip it and just do it.
Speaker:So the conflict would've been with your brother saying, You mean
Speaker:just the handing off of the task?
Speaker:Like the how?
Speaker:Yeah.
Speaker:Hey, I'm not doing this this time.
Speaker:I've done it a bunch of times before.
Speaker:Here's the cleaning supplies.
Speaker:You go do it.
Speaker:And he'd go, I'm not doing it right.
Speaker:Oh yeah.
Speaker:So the conflict wouldn't be the how?
Speaker:It's the, I won't, yes, yes.
Speaker:The conflict wouldn't be Okay.
Speaker:I'd be happy to step in and do it.
Speaker:Can you teach me, which a person who's ostensibly a father and has cleaned
Speaker:up many, many toddler and baby messes in their life, maybe or any other
Speaker:messes, it's not rocket science.
Speaker:Right.
Speaker:So the conflict would've been, I'm not doing that.
Speaker:Yeah.
Speaker:Yeah.
Speaker:And so I, I, I think, so for myself, it would've been a protection and
Speaker:then an anav avoidance of any conflict to get it done by somebody else.
Speaker:And did you ever have a conversation with your dad?
Speaker:I don't know cognitively if he would be able to have that conversation
Speaker:about personal hygiene care?
Speaker:Was there ever a, the first time it happened, Hey dad, are you okay if
Speaker:I, you know, help you clean this up?
Speaker:Or was it, is it, like you said, just sort of you just.
Speaker:New thing, new challenges keep coming up and you just keep moving forward.
Speaker:And there wasn't really an, a discussion about that or he just knew
Speaker:he needed help or did, did y'all ever have kind of the privacy discussion?
Speaker:Never had the privacy discussion.
Speaker:Uh, the first time it happened we were in public and.
Speaker:So the first time it happened, it was, we were in public, but we were outside and
Speaker:then my father steps in it, and then he tries to clean it up and he is shaking.
Speaker:Oh no.
Speaker:And I, you know, and I, and I.
Speaker:I'm kind of like, it, it, and it's kind of happens kind of in a quick success.
Speaker:I was actually sitting in the car on a, on a work telephone and I'm witnessing this
Speaker:thing happen and I, you know, I closed my call and I jumped into action and I just
Speaker:said, you know, just stop, stop, stop.
Speaker:Right, because again, he's just trying, you know, it's just, it, it, it's just.
Speaker:It was just disas and then I, so I just said, just stop and
Speaker:let me just take care of it.
Speaker:And, um,
Speaker:and that, and that, and that was that time.
Speaker:Other times.
Speaker:And, uh, I could relive one situation that was just, I'm sure mortifying for him,
Speaker:but since he wasn't a big communicator.
Speaker:He, we never really, we never talked about it.
Speaker:Right.
Speaker:We never talked about it.
Speaker:The only time there was ever any conversation is
Speaker:he said, are you mad at me?
Speaker:And I said, I am absolutely not mad at you.
Speaker:But I said, it is a very stressful situation.
Speaker:Um, did you mean that in general or just about the incontinence?
Speaker:I think just, well, when he said it like that, it was, um, After We had had
Speaker:one of these in incontinent situations and I was, had been cleaning up and
Speaker:everything and he said, are you mad at me?
Speaker:And I said, absolutely not.
Speaker:I said, but it's, it's a specialist situation.
Speaker:But he never said, don't touch me.
Speaker:He never said, you know, anything.
Speaker:Right.
Speaker:And I never, and I don't recall ever asking if I could either.
Speaker:And j just to, just to overshare.
Speaker:So I have a, a similar, I have three brothers and one of them,
Speaker:uh, my dad has a heart condition.
Speaker:So we'll bring my dad to the hospital, call me on the way, and
Speaker:he'll leave the hospital immediately.
Speaker:And I finally interviewed him recently and I said, why do you
Speaker:always leave when I get there?
Speaker:And he said, I can't see my dad in a hospital gown.
Speaker:And I just kind of laughed.
Speaker:Of course this isn't my thing.
Speaker:And I was like, his dad, you can't.
Speaker:He's like, I can't see him in a hot, I said, of course you can.
Speaker:I mean, your eyeballs and your visual cortex can see our dad in a, and
Speaker:so it's just really fascinating.
Speaker:Uh, but in, anyway, so I have a couple other questions and I wanna be respectful.
Speaker:We have a stop in 12 minutes, is that right?
Speaker:You're gotta get back to work.
Speaker:Um, yeah.
Speaker:Yeah.
Speaker:In a, um, When you were growing up, and this seems to be a big interesting
Speaker:component to this as well, um, what was your relationship like with your dad?
Speaker:Did it, did it kind of run towards the side of he's my
Speaker:hero, I'll do anything for him?
Speaker:And that would give you fuel and energy through the most difficult times.
Speaker:And the other side of the spectrum is I couldn't stand him.
Speaker:Um, I really don't think he was there for me, but I'm the type of
Speaker:person that's gonna be there for him.
Speaker:Because I'm the daughter.
Speaker:Like what, where were you kind of in those, in that spectrum?
Speaker:I loved my dad.
Speaker:Um, I was my, you know, always adored my dad.
Speaker:Um, I always, you know, my mom and dad's relationship was not
Speaker:an easy one, and I always felt I was kind of, I tried to be his.
Speaker:Protector de his defender from my mom sometimes.
Speaker:Um, but I will tell you that one of the things that I, um, that was hard
Speaker:for me is that taking care of him, I'm gonna, I, I'm gonna say, changed that.
Speaker:Not that it changed my love for him, but it definitely changed.
Speaker:I, I, I think it changed our dynamic and that was very hard as well.
Speaker:How would, um, it, the, I call them like fueling thoughts.
Speaker:So what thoughts did you have that occurred to you that kept you
Speaker:going through the hardest times?
Speaker:Was it I love my dad or?
Speaker:I want to be a good daughter.
Speaker:Did you, did you even have time to recognize what the thoughts were, but
Speaker:what were your kind of like, usually we have a little toolbox with thoughts
Speaker:that, you know, keep us going and we try to avoid conflict or thoughts that
Speaker:might make us question what's happening.
Speaker:Did you have a couple of go-tos that just kept you engaged?
Speaker:I'm probably, I would say that,
Speaker:I guess I probably would have to fall into the,
Speaker:I'm trying to think here.
Speaker:I really, I, I guess it's really just about, I, I was committed.
Speaker:To taking care of him.
Speaker:I was, it was the commitment.
Speaker:Right.
Speaker:Um, you know, whether that's a good daughter, I love my dad.
Speaker:You know,
Speaker:there wasn't an option.
Speaker:I mean, I guess technically there was, but emotionally there
Speaker:wasn't an option for me to leave.
Speaker:Right.
Speaker:Walk out and leave him.
Speaker:Um, what would you have thought if you did?
Speaker:What would I have thought?
Speaker:Yeah.
Speaker:What, what would've been the emotional consequence of, you know what, this is
Speaker:too much for me, or, my job needs me.
Speaker:Um, I can't do this anymore.
Speaker:I would've failed.
Speaker:I, I, I would've thought I, I had, I would've failed that I wasn't, and,
Speaker:and, and probably the failure would've been on a few different levels.
Speaker:I wasn't strong enough.
Speaker:I wasn't
Speaker:that I would've failed in those, you know, in, would that have meant
Speaker:that I didn't love my dad enough?
Speaker:Um, and that there would've been a failure because I was impacting then
Speaker:my dad's life, because that would've meant that he would've had to go into
Speaker:some kind of a care situation, right?
Speaker:Because over those four years, you know, I've shared a few different,
Speaker:you know, episodes and so, you know, his health con continued and his
Speaker:mobility continued to decline, right?
Speaker:So, He would've, you know, I would've had, I would've failed him in enabling
Speaker:him to stay in his home as long as we did.
Speaker:I, I, I do think that I helped him stay alive and, um, again, in his home much
Speaker:longer than if I hadn't have been there.
Speaker:Did you feel like, uh, any pressure on yourself to modify the home,
Speaker:have a caretaker in the home?
Speaker:Did he bring that up?
Speaker:Did what?
Speaker:What made that option sort of untenable or unsafe or moving to a different
Speaker:type of home that something like that.
Speaker:We never discussed, never really even contemplated.
Speaker:I had bought a home, so even though I was living with my father, I did buy
Speaker:a home in Boise and, and I actually bought that home in, in early in 2017.
Speaker:And, um,
Speaker:Number one, I found the home that I loved and it's the home that I'm in now.
Speaker:And so even though I knew that it was gonna sit empty or I wasn't
Speaker:gonna live in it, I didn't really know how long that was gonna be.
Speaker:Right.
Speaker:So, um, um, But there wasn't, and, and I guess there was an opportunity, I guess
Speaker:I could have brought my dad into my home.
Speaker:Um, but there were stairs and some things that ended up probably so
Speaker:ended up not being a safe situation.
Speaker:So there wasn't really any conversation about us moving into a
Speaker:different home that would've enabled a wheelchair or things like that.
Speaker:Yeah.
Speaker:Um, never talked about.
Speaker:Bringing in a caregiver because there wasn't really, um, I don't
Speaker:really think that there was a situation for a caregiver, right.
Speaker:There was, other than, you know, I, I had a housekeeper, right?
Speaker:So I, I, I, probably, early on first eight months or something, I
Speaker:finally said, okay, I've gotta have somebody come and clean this house.
Speaker:I've gotta offload that anyway, right?
Speaker:Yeah.
Speaker:And so I had a housekeeper come.
Speaker:Um, but again, making meals or, you know, running him to the doctor, doing
Speaker:the grocery shopping or, you know, just being there with him wasn't something
Speaker:too offload really, in my opinion.
Speaker:So it didn't talk really about that.
Speaker:Now I do, I I do wanna add one thing here, and I know you, we've, since
Speaker:we've only got the last five minutes, I wanna go back to the end of his life.
Speaker:Right, because I'm, I'm not sure where we're gonna go from here, but I
Speaker:wanna go back to the end of his life.
Speaker:So I told you that in October he got covid, right?
Speaker:So starting in January between hospital rehab assistance, assisted
Speaker:living, and then back in October, um, back in the hospital with Covid,
Speaker:um, and again, couldn't go see him.
Speaker:He gets.
Speaker:He gets over Covid while he is in the hospital.
Speaker:He didn't die of Covid, he just died because of Covid.
Speaker:So he gets out of the, he gets out of I C U and he gets back into a
Speaker:general bed and they would, they allowed one of us to come every day.
Speaker:We couldn't have two people a day.
Speaker:One person could come every day.
Speaker:So my brother and I took turns in this whole dementia situation.
Speaker:That he would get into in the past, you know, even though it would be
Speaker:days and there were ti and he would get, um, you know what, when you can't
Speaker:swallow aspirate, he would aspirate.
Speaker:Yeah.
Speaker:And all these kind of things.
Speaker:Um, we could get him through that to a point that he could get healthy again.
Speaker:But in that timeframe, in October, we just couldn't get his mental health back to
Speaker:where he could participate in trying to.
Speaker:Um, eat without aspirating or physical therapy or any of those things.
Speaker:We put him on a feeding tube and trying to, again, give him the nourishment
Speaker:as we were trying to get his mind back to being in more reality so he
Speaker:could help participate in his care.
Speaker:And finally, the doctors and, um, Everyone, um, convinced my brother and
Speaker:I that we needed to move to hospice, but again, because of Covid, there
Speaker:wasn't an, you know, so trying to find, number one, a place for hospice, right?
Speaker:Finding a bed or a a, a place.
Speaker:And then we, even if we would've found one, we couldn't have gone to visit.
Speaker:I wasn't gonna wheel my father up to a door and push him
Speaker:inside and let him go die.
Speaker:So I brought him to my home.
Speaker:Oh, okay.
Speaker:And um, and we didn't know at that time how long it was gonna be.
Speaker:Right.
Speaker:Right.
Speaker:So my brother sat down and it would figure it out, okay, this
Speaker:is how much it's gonna cost.
Speaker:Cuz I did at that point in time, bring in 24 hour care because I was just, I, I,
Speaker:I just emotionally couldn't do hospice.
Speaker:Changing his diaper.
Speaker:Sure.
Speaker:All of that.
Speaker:I just, I, I just didn't wanna have to deal with all of that.
Speaker:So, you know, so we did have 24 hour care come in.
Speaker:Um, and so my brother and I figured out how we were gonna cover all
Speaker:the expenses with my dad's money and how long that was gonna last.
Speaker:And, you know, what do we do when the money runs out?
Speaker:Well, I guess we'll figure that out when the time comes.
Speaker:Right.
Speaker:So he, he didn't, he didn't last a week.
Speaker:Right.
Speaker:Okay.
Speaker:Once I brought him the house he had, he, he passed.
Speaker:Quickly.
Speaker:We thought it would be a while.
Speaker:But anyway, that was another time.
Speaker:My brother said, you can't take him.
Speaker:You can't take him home.
Speaker:I said, hell, if I can't take him home.
Speaker:Hmm.
Speaker:Right.
Speaker:Absolutely can take him home.
Speaker:I said, and you're coming with me.
Speaker:Right?
Speaker:So you need to be there.
Speaker:That was Thanksgiving.
Speaker:You came on a Tuesday before Thanksgiving and Yeah, my brother
Speaker:and his kids, and they came and you know, and they were there.
Speaker:And until that Monday after Thanksgiving that my dad, that my dad passed.
Speaker:Um, so we were there all together for that whole weekend.
Speaker:Um, Anyway, I just wanted you to have that piece of the story.
Speaker:No, I appreciate it.
Speaker:Yeah, thank you.
Speaker:And, um, these are such complex conversations.
Speaker:Sometimes we, we don't ever circle back and I appreciate you sharing that.
Speaker:And overall, I thank you so much for sharing with me.
Speaker:We've been through so many different topics in the short time and I think
Speaker:it really does help people and I just appreciate you being open and willing
Speaker:to talk about these really hard things.
Speaker:Um, and I hope other people can learn from them and carry on the conversation.
Speaker:I just really appreciate it.
Speaker:You're very welcome.
Speaker:Um, if you wanna have another conversation, um, I'm
Speaker:happy to just let me know.
Speaker:I do have another person that you, that may, you may be interested in talking
Speaker:about, but it's, uh, wasn't with her.
Speaker:It, it was a, a friend of mine and her father-in-law.
Speaker:Oh, sure.
Speaker:Yeah.
Speaker:Uh, it's any, mm-hmm.
Speaker:Any usually older person, not usually like a disabled child
Speaker:or something, but Yes, yes.
Speaker:Any older person.
Speaker:Yeah.
Speaker:Okay.
Speaker:All right, great.
Speaker:I'll send you her information.
Speaker:I'll talk to her first, but let's see if she's interested.
Speaker:Sure.
Speaker:And then we'll go, I'll send it to her, you, if she is Okay.
Speaker:And I'll send you the transcript too.
Speaker:Thank you so much.
Speaker:It was so nice to meet you.
Speaker:I appreciate it.
Speaker:Okay.
Speaker:All righty.
