Welcome And Why Caregivers Matter

Kevin 0:00

Welcome to our podcast, When Life Gives You Lovements. I'm Kevin.

Palmi 0:06

And I'm Palmy. We consider ourselves disability advocates and intend to highlight some disability issues and things we find interesting that we frequently encounter when we're out and about. Also, some history on disability that we find interesting. This year we're going to include more of the interviews of the people that the disability affects. We hope you enjoy it.

Kevin 0:32

Hello there. Today's episode will be about caregivers and the vital role they play in our lives.

Palmi 0:42

I'm Palmy.

Kevin 0:44

And I'm Kevin. And you're welcome to When Life Gives You Lemons podcast.

Palmi 0:50

A brief overview of today's theme. Some of us that are more severely impaired than others require the use of caregivers. It's not an option. Some people have adapted to their condition and don't require any further help getting whatever it is they need done done. Those of us that have a progressive condition all sudden get flustered when something else doesn't work and uh we need it at the bare minimum uh some emotional support in that moment. And it verify varies too because uh Kevin's been disabled for about 25 years, 28 years actually now. And in the very beginning, um, it did support learning how to get around the disability. Uh he went to mainly to get to and from doctor's appointments, physical therapy appointments, that kind of stuff. I was working a full-time job at that point, and so it became very impossible for me to work a full-time job, and that's where I ended up having to take uh quit adjust how we looked at. I still had to work because we were only getting one income. We went from two incomes to one income, but I chose to work from home. I created a position where I could work from home and still be available for specific things like taking him to and from doctor's appointments, but I didn't necessarily have to care for him as much as I am now. Um, so it has gone from minimal care driving because he wasn't able to drive, he wasn't able to take, but now he's not able to physically care for himself. So it progresses the how you're the disability person with disability needs the care from a caretaker. So it's sometimes you need minimal hair care, like driving to and from, and and it progresses

How Needs Change Over Time

Palmi 3:10

to where it's full-time care.

Kevin 3:13

And at this point, I'd like to interject that we need a shout out for my caretaker CC.

Palmi 3:22

And that is, um we'll talk about later about that. That is a caregiver um respice, is basically what she is. So that because I am here 24-7 for him, and in order for me to get some relief, um, to go do things that I have to do, and to give me a chance to get away and have take care of myself also, she allows me to do that without leaving him without any someone to care for him and be here for him in case he falls or something like that.

Kevin 3:53

Yeah, but forbid I get left here without adult supervision.

Palmi 3:58

Well, you you tend to do stupid things when you are alone.

Kevin 4:02

Yeah, well, yeah, you're alone, that's when stupid ideas come to you.

Palmi 4:08

Okay, so getting back to it, um some statistics, Kevin.

Kevin 4:14

Uh before I get to statistics, what I'm gonna say is from the disabled point of view, we're looking for you know maintaining our independence, our dignity, and our quality of life.

Palmi 4:30

And that's important for a caretaker to realize also. Yeah. And uh you don't want a mom.

Kevin 4:36

No, I don't want a mom.

Palmi 4:38

You already have one.

Kevin 4:40

It's easy comes in here, checks on me. Like uh after she first got the job, you went through the uh resuscitation device you have.

Palmi 4:53

Yeah.

Kevin 4:54

Where you place a basically a mask on my face.

Palmi 4:59

And well they have to know basic care um how to resuscitate.

Kevin 5:02

Oh, I know, but after that, she's so freaked out, it was like every time it costs, you're like, Are you all right?

Palmi 5:10

Well, because he chokes, he has a tendency to choke, and he can just choke on his own spit. I can just idea that's what's good. Special talent. So I showed her what happens, you know, she has to know these things, your specific needs. And so, and every per person that came in, I mean, and to CeCe's credit, she was not the first uh caretaker. We had multiple people come in here and they did not stay. She's the longest, she's been with us about a year and a half, and um there is a lot of stress, and I have to deal with that kind of stress on a 24 basis. I hear you choke now and I know when it's serious and I know when it's not. Um, but it is it's a lot of responsibility to have someone's life in your hands. And so she did. She was freaked out when I first showed her um what happens if you choke and you get something down in your windpipe and she has to get it back out and stuff like that. So yeah, it was real kind of freaked out. We probably have a interview with her when just uh for the caretaker's sake, that might be a good idea for this episode. But um a lot of you know, a lot of people deal with this on an ongoing basis.

Kevin 6:26

Yeah, everybody knows this, but yeah, you have to find that doctor for your primary care that's you're comfortable with, knows you, knows the history of your uh condition that you're dealing with, and you know things go along with it. You just have to get the right person. It takes a while to get the right person. Right. So there was many that did not qualify, did not stay. It's the same with uh caretakers.

Palmi 6:57

You're just stuck with me. Yeah.

What Caregivers Actually Do

Kevin 7:01

Get getting along with the uh statistics by me as for there are over 53 million Americans that provide unpaid care. And that's the spouse, the brother, the sister, the family member that's taking care of somebody. Usually it's either a family member or a close person.

Palmi 7:23

It's a thankless, it's a thankless job.

Kevin 7:26

Yeah. And even if you're paid, uh still not enough. I still don't think it's quite enough, but hey, it's good uh expansion for uh those in the uh medical field, if you will.

Palmi 7:47

And when you're paid, it's a job and you go and you do it and you go home. You don't have the responsibilities of like a spouse or a or a family member would do. When I took care of my dad, it was 24-7. It was and heart-wrenching too, because it was your your father you were taking care of. So you cared whether he was happy that you were how you're bathing him or how he was feeling, or you know, those things came into play also. So let's get down back to our podcast. Uh, what caretakers, caregivers uh actually do? And this is basic, basic stuff. Uh so basically personal care, bathing, dressing, feeding, medical support, uh, the medication, the appointments, the therapy, daily life management, transportation, shopping bills, advocate advocates, navigating systems and rights, um, emotional support, companionship and communications, real life examples and short um so real life examples would be like we talked about um personal care, bathing, um, minimal, like if you had paid somebody to come in, they would only bathe you once a week. Well, that's not typically, especially when you're disabled and you're um dealing with some, you know, some additional issues, that once a week may not be uh efficient. So on a normal basis, you'd most people bathe at least once or twice a week, or twice two to three times a week, you know. So um that's typically what we do uh at least two to three times a week, is what Kevin Bays. And it used to be harder for us because we didn't have handicapped, um, a fully handicapped uh bathroom, but now it's more he's more able to do more things because we had to remodel our bathroom. So it's made it easier for you to do it more of it on your own. Yeah. Nodding

Advocacy When Systems Fail

Palmi 9:55

doesn't they don't see the nodding cap.

Kevin 9:57

Well, uh, yeah. I I think a better example of what you're trying to uh of your um remark about advocacy and sometimes motional support is uh I can't recall the exact date how long this was a long time ago. And I'm not sure why, but I was getting like an x-ray. No, I know what it was. It was uh for uh when I had my first hip. What do they call that? I had a bone spur in my hip and it had to be removed because I wasn't able to move to the side at all without getting this bone on bone pressure, uh agony, pain is what it was. So they went ahead and x-rayed my left or my right hip, which was the wrong hip, it was on my left side, and they said, Of course, they just assumed I was dumb or something.

Palmi 11:27

That's the same story. It was an MRI, and they you they they MRI the wrong hip, and the woman thought you were mentally disabled because of the way you spoke. Right. And so in front of you she said, That's okay, we'll just re- we'll just bill the he has two insurances, we'll just bill the other insurance for the the wrong hip, and we'll send him for an MRI of the other hip.

Kevin 11:53

And and no bingo, just like that, it learned how to commit insurance fraud.

Palmi 11:59

Yeah. So she did that because she thought he couldn't and I wasn't there. That was the one thing where I one trip where I wouldn't was not in the office. Um, my sister had taken him, and so of course she didn't go in the appointment with her with him because she, you know, the HIPAA law and all that, she didn't feel comfortable being there with him. And uh she's she sat there in front of him and just committed um meta fraud or Medicaid fraud.

palmi 12:28

Insurance fraud, yes.

Kevin 12:30

Yeah, insurance fraud. Anyway, so uh the point being though they wouldn't have done that if an advocate had been there for him. Correct. Yeah, but when I got home, I told you about the the entire incident, and that wouldn't have happened without that uh feeling of trust in ability in your caretaker.

Palmi 12:55

And it it would because it's embarrassing. You were embarrassed that they thought you were mentally handicapped. Yeah. Yeah. Okay, so let's

Types Of Caregivers Explained

Kevin 13:05

go with the type of caregivers.

palmi 13:07

We talked kind of when I think um this is kind the words uh caregivers and caretakers might be uh interchangeable unless you're talking about specifical uh need based like uh I think we're gonna get into that shortly. So uh but I refer to CC as my caretaker, I refer to Palmi as my caretaker.

Palmi 13:43

Should be caregiver, though.

Kevin 13:44

All the uh research I've done is just giving me caregiver. So if we switch back and forth, you know, I'm asking forgiveness ahead of time. It's written caregivers nice, and that's for a reason. Family caregivers that is uh basically a the name of a program that's uh available through the VA and through Medicaid. It allows the you know those unpaid uh caregivers you're getting. So many people are getting out from their family, friends, or whatever it allows you to pay over their time. Well, these strictly are what they're talking about here is just um unpaid workers, uh like the families.

palmi 14:46

That's correct.

Palmi 14:47

These are not paid people yet. That's correct.

Kevin 14:51

And uh you're supposed to be on three. You did family giving caregiving.

palmi 14:58

Oh, so you're done with two, is what you're saying? Yeah, okay.

Kevin 15:01

So cut that out when you do the thing. You just did family caregivers, which is the backbone of U.S. caregiving.

palmi 15:08

Okay, right now I'm going on two types of caregivers.

Kevin 15:14

Correct.

Palmi 15:15

You have your family caregivers, and that is really the backbone, the vast majority of those that are giving care to you and pay care to you. Um yeah, personal care attendants, which are PCAs, they refer to as PCAs and are outline. That's a certi certificate uh um job.

Kevin 15:47

Well, I'm not so sure. Uh for example, let's uh talk about the the nursing profession. There's so many different Yeah.

Palmi 16:01

When I dad was in the nursing home, there was a PCA. All she could do was move him and then she could take his vitals, but that's all she could do. And and uh help him to the bathroom and back, but that's all she could do.

Kevin 16:14

Okay, so that's uh probably giving a nod to the fact that there are medical professionals that may have these credentials, but uh I am doubting whether CC has these. She may have similar training, but she's not a certified PCA.

Palmi 16:40

That's correct.

palmi 16:41

Uh I believe that would be something that you'd run across in the medical field.

Kevin 16:48

I think she's considered a home health aid, right? Which is the next one. Okay, or she might be the respite caregiver.

Palmi 16:56

Personal personal care aides, no home health aides, um, skilled nurses and respect caregivers. That's probably what CC is because she's not allowed to do any medications or anything like that. She's allowed to bathe you and help with bathing and stuff, put uh clothe you and stuff like that, but no medications, I don't believe. And then her others are just to keep the house tidy for you. And see, some of these rules overlap and and some differ as far as medication. She's not allowed to give you medication or anything like that. No, but uh part of her care for me, and that sounds odd, but uh when Pom is talking about some of the lighthouse work, she I was gonna say she doesn't mop the floors, but she does. Yeah, we have a steam cleaner kind of thing that she really likes to use. That's why she moss her floors. Ordinarily, I think she would not mop the floors, she was just keeping tiny vacuum or sweep. Right.

Kevin 18:20

I have a steam mop that she uh you don't really do a lot of mopping, you just steam it across the because we have hardwood floors and we have dogs, so it basically gets rid of any mess that they might poke we have on the floor, and it's it's more sanitary for the because for you, and it gets rid of the dust because you have tons of allergies. So and just for the record, I probably drop more stuff on the floor than the dogs do.

Palmi 18:47

Probably, but they clean it up afterwards, which is grosser.

How Caregivers Can Get Paid

Palmi 18:50

Yeah, sometimes. Okay. Can caregivers get paid? Um, yes. Um, the overview of payment path, um, Medicaid, um, consumer directed care. I know there's uh several um different uh things that you can apply for, insurance uh or um insurance things that you can apply for and become a caregiver through Medicaid, but your client and client has to be on Medicaid before you can even apply. So, and there's lots of restrictions. Um, my dad when he was on med um when he had a stroke, and my mom when she was alive, they could never qualify. And it wasn't that they had a lot of money, they just uh owned a home, and so that was a deterrent as far as um being on Medicaid. So they could could never they had to get rid of a lot of and they had um retirement and stuff like that. So you have to pretty much destitute destitute to be um on Medicare, it's very restrictive. Uh long-term care insurance. Um you can apply for that to get paid. Caregivers can get paid, but I'm not uh it's very expensive, and you have to plan that long ahead.

Kevin 20:15

Well, and your insurance insurance has to offer that is part of your coverage. That's really gonna depend on whatever company you in the US it's gonna depend on where you get your health insurance from.

Palmi 20:33

Right. Paid family leave. Uh, I do know that big bigger companies, but I in the in the in the in the past they have paid for that, but I I think in the near in the current um future, I don't think a lot of companies are are keeping that as part of the package deal. Uh the VA caregiver programs, we are fighting that program right now, trying to to see if we can qualify. And we are we've been turned down once already, and we're in it's being screen considered because of the change of situation with Kevin. Um, so uh who knows? It is a long and time-consuming process. Um and so let's go on to the challenges of are so many of the other V programs they offer.

Kevin 21:28

Yeah, be in it for long term.

Burnout Isolation And Physical Strain

Kevin 21:30

Yeah. So next one, Kevin, is number five. Okay, one of the things um the respite care that CC is so helpful with is it helps to uh you know we're gonna talk about the challenges caregivers face. Yeah, it's gonna help with the uh preventing burnout and emotional fatigue.

Palmi 21:58

Yeah, I what I do. I mean, I have to grocery shop those three, I get three days, four hours or three hours a day, three days a week. Um, and what I do is I grocery shop. I do go to my doctor's appointments, and I go work out at a health club to maintain my health also, because I have to stay healthy in order to be able to do all the stuff that I do to take care of Kevin. Um, and so that helps with the burnout and the emotional fatigue. Because we I've been dealing with this for 28 years. Um, when we first started, um it the prognosis was five years. So that causes a lot of emotional stress. Um, I we've gone from everything from when it first started, I had a two-year-old, you know, to raising a child through all this um dis disability challenges, Kevin's challenges, the child's um challenges of growing up, to uh basically being a sole supporter of the family for for income. To, you know, we eventually started our own business because we couldn't figure out a way of me working full-time and still being able to support Kevin in a way that was able to do everything he needed to have done. So there's a lot of emotional fatigue in that and handling the bills and everything else that has to be done by my by me, basically. So, and then go what's the next one, Kevin?

Kevin 23:43

Okay, the next category is uh isolation and lack of sport, which I think happens on both of us. I think that's for both of us. Yeah, but imagine if you uh I had a situation going on that I grew up with. I never married. I'm living on my own a caregiver, you know, would you know take away the need to at least you have human contact a few times a week, and uh it takes away that helpless feeling you have. Right. That comes with isolation.

Palmi 24:33

Yeah, if you didn't have family support.

Kevin 24:35

Oh, I can't go there and do this. Well, you still have that. I mean well I do, but it doesn't compare to somebody who's on their own. Right. And no family around exactly. Yeah.

palmi 24:50

Um for example, if you live in a very urban environment, a lot of bigger cities certainly have social programs like uh public transportation that are accommodating handicapped people, etc. Uh I live out here in the Bunis, so if I didn't have a caretaker to look after me and checking with me, I get the feeling of isolation real quick.

Kevin 25:29

Yeah, but this is for uh issues with caretakers. So that we're talking about uh what the caretaker is going through for isolation and lack of support. So other than your family is no is nowhere near you. So my family, luckily luckily enough, is well, my mom and dad pass, but my sister is still here. So what what's the next one? Physical strain.

palmi 25:57

Exactly, yeah.

Palmi 25:58

So we have that when you fall down on the floor or I and I can't get you up. That's why I have to go work out.

Kevin 26:06

Yeah, the problem that we have is when I fall over and somebody has to crate me off the floor, Palmi's nowhere near my size. Yeah. Well, now I've gotten closer. You're tall. Well, that's a bit of a I I weigh a lot more. We're about even now density wise.

Palmi 26:32

Yeah, well uh uh dead weight is just dead weight.

Kevin 26:38

Dead weight is uh very hard to move around. That's something you uh have to go with in the military, but you know it's really honestly it seems a bigger deal in the moment because there's all these oh my gosh thoughts running through your head. I'm fortunate in that I haven't really uh seriously injured myself yet.

Palmi 27:12

I'm knocking on wood.

Kevin 27:14

Yeah, I've been able to stay away from whacking my head on furniture and breaking limbs and things like that.

Palmi 27:23

You broke an arm. That was long enough.

Kevin 27:26

Yes, I had, but yeah.

Palmi 27:28

Balancing work, family, and caregiving. That's that's a challenge for caregivers. That's what we were just talking about.

Kevin 27:46

Yeah, actually, you don't have that difficult of time. Uh prior to CC coming along. There were still tons when you had to run to the store. But thankfully you kept them uh short. It's the late pond we took uh well weekend trips to New York or whatever. It's you know no, I I've never, in fact, my best friend and I have not seen each other in about 10 years. Um, due to the fact we used to uh we were able to go and do at least a girl's trip weekend somewhere, and we haven't seen each other in ten years up until my daughter's um engagement party. She ended up meeting me there, and uh, we hadn't seen each other in about 10 years. So it just can't do things that you would do previously. So you just make sacrifices.

Resources Through VA And Community

Kevin 28:45

So uh the next thing is support systems and roots resources, so age area agencies of aging. We have really not found every time we would go when and I'm just using Kevin or my dad as an example here because I we did find a few things for Kevin early on. He used some resources when you went to the uh martial arts. There was a martial arts group that you used for through a local a um agency, uh Sadie.

palmi 29:18

Um I can't remember what was which stands for the Southeast Missouri Alliance of Disabled Individuals.

Kevin 29:26

He took a class there to learn martial arts when he was trying to stay out of the wheelchair. We were told that if he used his muscles, he could um keep as much mobility as he was able to keep. And he was able to stay out of the wheelchair for about 10 years. Um, so we did use take advantage of that, but other than that, we have not used much of the uh support systems in the area. But with my dad, he had to, we had some. I used the agency of aging um and we received several grants for he we had to use diapers and um the medic or the um food he had at a feeding tube, and the two feeding the food he had was not covered by Medicare. Don't ask me why, but um, and so we got grants to cover those things. Um the VA has been pretty good about supplying Kevin with the chairs and any adaptive um stuff other than they've given us just bare bone stuff, they've given us wheelchairs.

palmi 30:39

They take care of my prescriptions, but not your closet pan. Uh they didn't help us with anything else we tried to get. He did was able to go to modeling the house, uh buying our adaptive vehicle.

Kevin 30:55

No, they know we had to do that on our own.

palmi 30:58

Yeah, that's a newer program.

Kevin 31:00

Yeah, that was only a year ago.

palmi 31:02

With our current uh fee secretary.

Kevin 31:06

Yeah. And you are you do get um compensation uh m money-wise, you do get a a pension.

palmi 31:14

So quick for a quick comparison of caregiver types, we're gonna use examples. Family caregiving, the family caregiver is trusted and long term.

Kevin 31:36

The home health home health aid is trained and has daily support.

palmi 31:42

So I I guess you can see the difference here is you know you have advantages and disadvantages with each different type. Whereas with the family caregiver, they're trusted and long term. Yeah, your family doesn't go away.

Kevin 32:05

The home health care aid is only uh it's not long term, it's only for a specific time if there's a um uh like if they've fallen down or they've been hospitalized for a little bit, they'll send them back in the house to give us a little bit of support until they're able to be have help have the home the family get enough help to get them back on their feet again.

palmi 32:30

Correct. And then the now the other one, uh the next one is the skilled nurse, which has some medical expertise that comes with that. But um the only time I've seen anybody have a medical nurse visit them in home with your dad.

Kevin 32:53

Right, after a stroke.

palmi 32:54

Yeah.

Kevin 32:54

And he it was only for a short time. He was on um not hospice, but he was on the one before that. Um can't remember what it's called now. But they would come in once a week and check to make sure that because he had a feeding tube and a pubic tube um for his um to empty his bowels, um, his liquids. And um so they would they had to make sure it stayed clean and and cleaned and and and make sure that I was feeding him his right medication and stuff like that. But it was only once a week. So I was responsible for 24-7, other than that. Um, he never got to hospice. He died just the week before, weekend before we were gonna put him on hospice. He uh had a massive stroke um the weekend before we were gonna we said we he should be put on hospice. So

Transportation Problems And Closing Thoughts

Kevin 33:50

closing thoughts. Caregivers are extremely important. I don't think um disability people would be able to survive without them. I know you wouldn't.

palmi 34:05

Well, I like I said at the very beginning, it depends a lot on the disabled person of and what what their disability is too. Correct. Some people have uh something that was discussed in here, a physical therapist that comes out periodically and make sure neglected muscles get stretched or used or or whatever. I know that with the with your dad, they made you goodly facility to uh be they started in home and then he graduated out of home and eventually had to go to the facility. Oh, is that how that works?

Kevin 34:54

He could get so much much time in home. Just with your same with your mom. She w started in the home and then she never got past the home part. He graduated out of the home and and was and went to the facility and we went did six months in the facility, and then he just couldn't do it no more. He kind of got where your mom was and got too weak. So I can tell you right now that caregivers are not recognized enough and they uh uh are the unthanked heroes of the disability world.

palmi 35:36

I think they are. I think uh if you honestly sit down and think about it, there's somebody in your life therefore that fills the caretaker need, helps you do things that are difficult or actually does them for you. I myself cannot drive, so uh we do have a uh more or less shuttle service that originally catered to disabled needs, but uh I think I think in this state it was uh via a court decision that if you're gonna haul people around, you can't discriminate and say, oh, we only haul around disabled people.

Kevin 36:32

Well, they were given a grant, and so they have to give so uh so many free uh not free but dis discounted uh rides to because you have to apply for them. They have so many um um rides that they give to disabled people a month. People call in for them the first of the month and get little chips. So but they're ineffective. Um there was a couple times you relied on it because I was working full-time and you never got to your appointment because they were so so late picking you up. Or I used it one time because we did not have a vehicle that was efficient to carry a wheelchair at that time for my dad, and we were I thought it'd be more efficient to use the shuttle, and we got stuck at the rehab for two hours in a very uncomfortable chair, and so that was not efficient.

palmi 37:30

Yeah, from what I hear, uh that situation still happens right today. Oh yeah.

Kevin 37:38

Yeah, it's all they only have so many vehicles that will accommodate a wheelchair and so and too large of an

Funniest Caregiver Story Challenge

Kevin 37:45

area. So all right, any housekeeping?

palmi 37:49

I think I have a little bit. We would really, really, really appreciate feedback. Um, and I'm gonna challenge you to send us either via email or uh show or uh the chat we have on our website where you can uh tell us your funniest caregiver story because if you think about it, everybody has one. It's something either embarrassing that you know it may not even be that big of a deal to other disabled people, but uh at the time you th may have thought, well, this is the end of the world. I mean, what is it I saw in a uh movie lately uh uh some lady slipped on the ice and just laid in her driveway and said, That's it, world, run over me now. Just do it, run me over, kill me now. That sort of situation I wouldn't have to involve a fall per se. But uh to wind things up, uh we're always looking for feedback, especially if you think uh we should either revisit some of the topics we've already talked about, or if you have a topic that we haven't covered, let us know what you're thinking of. That way we'll be able to uh put out stuff that's interesting and not yammer on about stuff you don't like.

Kevin 39:48

Speaking about yambering on.

palmi 39:51

Uh okay, that winds things up, folks. So remember what we always say when life gives you lemons, make lemonade. Kevin and Pommy out.