Dad's Dementia: Grieving the Living with Phil Hill

In this episode of The Caregiver Café with Roz Jones, Roz is joined by security expert and former family caregiver Phil Hill for an honest conversation about caring for a parent through cognitive decline, dementia, and the final years of life.

Phil shares how he first began noticing changes in his father, including confusion, difficulty navigating familiar places, changes in his appearance, and trouble managing responsibilities that had once been routine. Those early signs led to doctor visits, cognitive testing, difficult decisions about driving, and eventually moving his father into his home.

As the primary caregiver, Phil had to learn how to coordinate support among family members while also caring for his wife, his children, his business, and himself. He explains how even small contributions from relatives, such as taking his father to the barber shop, spending an afternoon with him, or providing companionship, gave him valuable moments of rest.

Roz and Phil also discuss the emotional side of caregiving. Watching a parent decline can bring grief long before the person passes away. Caregivers may lose sleep, experience exhaustion, make difficult safety decisions, and manage behaviors their loved one may not fully understand or remember.

Through it all, Phil relied on three things: prayer, patience, and love.

• Prayer helped him continue when caregiving became overwhelming.
• Patience helped him respond to confusion, frustration, sleepless nights, and difficult moments.
• Love reminded him why caring for his father mattered, even when the journey was painful.

Phil also shares why caregivers must make room for self-care and seek support from people who understand the caregiving journey. Whether that support comes from family members, professional caregivers, support groups, faith communities, or the stories of other caregivers, no one should try to carry the entire responsibility alone.

This episode is a heartfelt reminder that caregiving is about more than completing daily tasks. It is about protecting your loved one’s safety, honoring their life, adjusting as their needs change, and continuing to show up with compassion.

Thank you for listening. If this episode encouraged you, supported you, or gave you something to think about as a caregiver, be sure to stay connected with Roz Jones.

Visit Roz online for caregiver resources, blogs, books, speaking information, and support for families navigating the caregiving journey.

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Because caregiving is not meant to be carried alone.

Transcript

Intro 0:05

Is your aging loved one home alone? Forgetting to take medicine or pay bills? The Caregiver Cafe with Roz Jones has a menu of resources to serve your caregiver needs. As the caregiver, Roz understands your daily challenges. This podcast focuses on the unique and dynamic issues of caregiving.

Roz Jones 0:24

Once again, I'm Roz Jones and welcome back to the Caregiver Cafe. I am the CEO and owner of Jacksonville's Best Caregivers. Where we help expand the life of the loved one, why do I do it? I do it to help the caregiver to reduce that SOS on their journey, which is being stressed, overwhelmed, and providing safety and security when you can't do it all. You give us a call. And speaking of security, I have the United States most uh expert on security, Phil Hill out of Wisconsin. And so he today he has blessed me. He's a friend, and also he is one of the people that works with my company when it comes to security, not only for caregivers, but even if you are not a caregiver and you need security at your home, I'm gonna give him a shameless plug. He can tell you everything. You know, smoke detectors for your car, for your home, if you're a caregiver, he can help when I say when you can't do it all, give Phil a call when it comes to security. So, Phil, thank you so much for coming. And can you tell us um a little bit about how long you've been in security and then tell us when your father, when you started noticing about your father being sick. Go ahead, Phil.

Phil Hill 1:39

Good morning, Roz. Good to be here with you today. This is exciting. I'm I might it's this is my first, I think, maybe I think this could be one of my first podcasts. I I it's the first one I remember because it's with you and it's it's it's a really it's a really important topic to my heart. My name is Phil Hill, and I'm um I'm a 40-year security expert. Simple as that. Um I've been around electronic security, smart tech, tech before it got smart, um, for 40 years. And it's most of my adult life. Um I run a company that is uh 17 years old providing security systems, um, home, residential, um, industrial systems in the Midwest. And I also share these same things on the DIY basis for those that want to do it yourself. That is for home alarms, cameras, um, smart tech, smart home, and also tech and gear that helps people with taking care of their loved ones, because I use this same tech to take care of my father. So I'm happy to be here with you to share my journey and anything I can with you around um caregiving and looking after parents all the way through their golden years of their life.

Roz Jones 2:52

Phil, I want to start out when you started noticing a change in your dad. And when you noticed a change, did you and and and we're just gonna be transparent here, did you ignore it or did you sit down and have a conversation with him?

Phil Hill 3:10

Um I talked with him some, but my, you know, my dad was um so a little bit about my dad. My dad was uh uh educator, um uh lifelong um middle school, high school substitute teacher. Most of his life he only substituted. He just loved a different classroom every day. He substituted in three different school districts in Illinois and Wisconsin, and at the same time, through 30 years of that, he was a postal worker by day, by night, and uh in a mail handling role and teaching school in the day. Um and so later in his life, he was just down to the teaching, and it gave him a lot of energy. But I started to notice timing. He would just somehow get a little turned around getting from his home to church or to different places. I started noticing his clothes were not as neat as he used to be as a school teacher. Um, he was a little more disheveled. He lived 20 minutes from me in the next town over. My father is widowed twice, so he's um my mom passed away and then he married again for 17 years, had a wonderful life, but unexpectedly um my stepmom passed of a heart attack. So my dad had to figure twice now how to take care of himself, and he did very well with that. I often say my dad was like an OCD type of person that just everything had to be in a certain order. So he basically laid his life out for me to figure out as I noticed things were changing. And those were the first things, again, just not getting where he needed to be. Clothing, and I noticed also confusion. Um, he was very rattled when he had to now negotiate with um the cell phone company or the cable company or his accountant, things that he had done like clockwork. So I began to talk with him a little more about it, and he says he was fine, but he needed to call me many, many more times per day than normal. And I began to share with my brother, my one brother that I had left. And one brother was like, Well, you you deal with it. And so I did. Um, as time went on, I began going to more of his doctor's appointments with him to get the medical side of things figured out. And we progressed into specialists to figure out if he was having any cognitive um challenges, first by a basic exam from his general doctor, which led us into a specialist, I think a neuropsychological doctor, um, specifically to give him an extensive cognitive uh test. And that's how I began to put together more information tools to help me figure out how to care for him for the rest of his years, which at that point it was probably another five years of care.

Roz Jones 6:05

I want to ask you this question because a lot of times it it comes up more often than not about there are certain siblings that will help, and then there's other siblings that, you know, um just can't handle seeing their parents, you know, decline. And so when your brother either stepped in or didn't step in, how how how did that make you feel? And how did you deal with it?

Phil Hill 6:31

Um, I felt alone um in that my our our one and only other brother passed early in life, and if he were here, you know, one of those things, he would have been a good go-to. He was the oldest brother. So I felt alone, but at the same time, I knew that my brother needed, uh, as he was uh single and and um working hard 10 hours a day, six days a week, he needed to really focus on himself. So when he could give me those Saturdays to take my dad to the barber shop and out for a donut or a coffee, that's what I really counted on him for. And I and I appreciated him for that. Um I had some stepbrothers and sisters, a lot of them, but out of 10, I really only had two. One by phone out of town who was very supportive, and the other that was here who was awesome and supportive. And from there we used with what we had and we made it work. Um we didn't complain, I guess you could say. We we regrouped and figured out we gotta go with who we have. So it worked out.

Roz Jones 7:34

So as the um community of care kind of dwindled down to maybe, it sounds like maybe four, three to four people, how did you how did you say, okay, you take dad to get his hair cut, you know, uh you bring dad a sandwich, you take dad to the doctor. How did you coordinate the care?

Phil Hill 7:56

Well, um, my brother was the Saturday person, except when he had a he's an artist, so if he had an art show to go to, I hope I I asked him, please just let me know ahead of time so I can adjust. Because um self-care is important for the caregiver. And those Saturdays when he was gone, it gave me some self-care time or to deal with some of the things I needed to with my family. I had at the time. Um, you know, my wife, my long, long life wife, and my my kids, which were in high school and college, and they were part of my team. They were my everyday team. Um, but they needed my attention on things as well. So um as long as he kind of held up those Saturdays for me, that was good. My my my stepsister was kind of the Friday person. She uh was at work from home, and I knew that she was coming on Friday on a half a day of work in the afternoon. She'd come over and she'd sit with him and they talk about the old days, and she might run an errand with him, take him out. Those little respite of sorts with the family was important. But it was my wife and my kids that were the full-time. Um we probably at some point should have asked for or seeked out more help as his life progressed into more care needs, but um, but we made it work.

Roz Jones 9:14

Wow. As I'm listening to you, uh, you really weren't alone because you had um, you know, some of your stepbrothers and sisters, but then you really had great support from your wife and your, you said two daughters?

Phil Hill 9:27

Three. Three, three daughters. Two high schoolers and one college, yep. In college, she was she was near nearby in college. Even when she was at the dorm, she was still in town. So um, because caregiving for someone with cognitive issues, Alzheimer's, dementia, dementia, or however you may want to diagnose it, it requires 24-hour care. It wasn't always that way in the fit in the early year, I say five years of care that first year, when I began to notice those changes, he was in a condo two 20 minutes from me. He eventually stopped teaching. But as I began to get more info from the doctors, I began to understand the levels of care I needed to step up from um taking his driving abilities away from him to more phone costs from maybe 10 phone calls a day to 15, you know, or so. And and double checking on medicine and and things. And then the day that I had to take him in with me or send him to a facility, he came with me for four years. Um the the the day we the a big significant point of taking his driving away was a huge thing that I probably, though I my neuropsychological doctor says, you know, um, here's where he is on this full three-hour test. We'll test them a year from now and see how it compares. And we did that. But after that first test, she says, here's the number to a PhD driving senior citizen specialist. $300. You pay them, they come, they drive with your loved one, they do a couple interview time at the kitchen table with you, and then they give you their evaluation. And the evaluation was um, as of today, I I really suggest, John, my father, that you don't drive anymore. I immediately took the keys and the car away. And that changed his life. Because it changed my life because I immediately became driving Mr. Daisy in a w in a sense for a whole year.

Roz Jones 11:30

Yeah. As you talk about this, I see I still see the emotion in your face.

Phil Hill 11:37

It is. It is. Because there's a reality about this, Roz. The reality is you're watching the last years of your parents' life. A person with dementia doesn't live for um uh a ton more years. It could be another 10 or so. My father's with five. But the reality is, and if as you see it progress, whether right before your eyes or from the first year of the neuropsychological exam to the uh the year later, and you see the the cog chart and the graphs of the the progression, the pace, you realize that they're leaving you. Physically, they may start falling more. Physically, one day they may not remember you. And physically you may end up in hospice, and physically they're gonna end up you're gonna end up planning a funeral. But this is tough. And when they're in your own home, your living room, you and your family, that's and then they're gone. It's a whole nother thing. Um, it's something that the caregivers should prepare for, the full package, the full breadth of their life. And to remember that no matter where their phases are in it, even when they're glassy-eyed in those last days, I'm I have never been there. So I don't know how much they're that they they're really understanding or feeling, but can't even say it or express it. But they trust us, the loved one, the caregiver that that is taking the charge to love them, protect them, and care for them for the remainder of their life. And it it can be quite tasking and emotional.

Roz Jones 13:29

I feel as I listen to you, I'm I'm literally tearing up because I've I'm feeling what you're what you're saying. And as a caregiver, a lot of times people think that even for us as a private duty caregiver or a caregiver that comes into an agency that we don't connect with the patient. But even when my patient recently died, I broke down.

Phil Hill 13:53

I know.

Roz Jones 13:54

I broke I broke down. And it's it's hard. Um it's like you said, it's it's hard. When you know, when you first got 'em, you know, we were going everywhere. You know, we're going to the hairdresser, going to get our toes done, going to get the you know, the the bloody Mary, um, you know, just all kind of wonderful things.

Phil Hill 14:16

And then as they start to decline, as the steps get shorter, um, they can't do the things that you that they used to do. They can't they can't make it down in our yesterday, our Sunday school teacher said um I I miss some of the seniors, and he named my father and two others, that they were regularly at Sunday school when they drove themselves until the the kids brought them, and then came, he mentioned that Mr. John they called my dad. He couldn't make it down those basement stairs. Well, now we have Sunday school in the main sanctuary, main levels for the seniors that can't do stairs anymore. We make adjustments for them because we want to give them the best years of life, safely and caring, um, and not forget them. And so in my mind, it takes three things that you need to constantly think on. I call it prayer, patience, and love. Prayer for the Lord to help you get through and to help your new this relationship with them in this phase of their life, and and and only by the help of God and the family that believe in him also that can you can do this very well. Patience, because it's not easy. I think I say, folks, that for four years while in my home, I probably hardly ever slept a full night. I slept with one, not one eye open, but one ear. I could hear the walker, I could hear the bed squeak, I could hear the walker, I could tell what part of the house he was in by the tone of the walker on the wood floor. I could I could tell if he flushed the toilet, if he could tell if he was having a bad night or a good night. I could tell if I could tell if the my my my my plan of everything all around his life, uh I was off because I didn't get him in bed soon enough and the and the sun and the sundowners, the sundowners, I think, set in.

Roz Jones 16:17

Right.

Phil Hill 16:18

And and so I need patience because a bad night meant that I was gonna have a bad night, you know. Um and and patience because they might say or do some things to you or your family out of place, rude, inappropriate, that they may not realize what they're saying and doing. You gotta have patience. Um, and it's just progressing more and more. And then love that you remember that mother, father, or other sibling or sister, brother that cared for you, that that birthed you, that protected you, that gave you college education, that looked after you, that was at your ball games, that gave you every teaching and everything in your life, that the love for me, it was the father that got me and my brothers out of the west side of Chicago and brought us to Wisconsin for a better education and a safer life. And all those things, when I told my dad I want to go to school, I'm gonna go to the library and research with you and help you find the school. There was no internet back then.

Roz Jones 17:22

Right.

Phil Hill 17:22

And then you you turn it around and you share that love in this stage of the life. It's important because as you so much show love and care for your loved one through their last days or years, so as your children may do for you one day. So when my children sitting and caring with me and and sharing, I hope that if it ever comes to that point that I need that kind of care, that they will do that. And if I if if I ever made a mistake, that hopefully they won't repeat that, you know. Um some folks wonder why the kids toss them away in a home somewhere and treat them so bad is because they probably maybe have seen you do that to to your parents. So yeah, prayer, patience, and love is when when you when when I give you a funny one. Got my dad sat down at this standard little dinner in the dining room, and he had spent a little rehab time in a rehab nursing home place, and one of the ways that they would keep him happy through the night is he'd sit at the side of the nursing station in his wheelchair, and they put on the internet music loop um all of the James Brown classics.

Roz Jones 18:30

Oh my.

Phil Hill 18:31

And he loved some RB and some James Brown. And so when he got home, he stood at the table, I said, Dad, you gotta sit down and it's time to eat. And he just sat there and he was in that glassy days for a moment. And he sat there, and then my dad's from the west side of Chicago, so he's got, even though he's Roosevelt University educated, you know, he he got he got some Chicago in him.

Roz Jones 18:53

Okay.

Phil Hill 18:53

And he said to me, and after a couple of times repeating, and he just turned his head and he looked at me and he says, I heard you. And so he said, he said, I heard you. He said, You just you just talking loud and saying nothing.

Roz Jones 19:10

Ooh.

Phil Hill 19:11

And then my wife, for three, four steps in the other kitchen side, came over and just gently tugged me by the arm and says, I got this. And she took me into gone, gone, gone. She she just knew at that moment I'd never come get my husband. And just pull him aside, just gone by your video. Gone. Because uh I I looked at her and said, Did he just quote James Brown to me? And she said, and but it's prayer, patience, and love. My wife had a little bit of that as well at that time to take. So there's been a lot of stories like that, y'all. I I uh I'll give you another quick. I know we don't have all day, but no, that's okay.

Roz Jones 19:54

Are you are you okay?

Phil Hill 19:56

I'm good. I needed some self-care one time. Okay. And for those of you that know me, I ride Harley's. I love my motorcycle.

Roz Jones 20:03

And roll and roll a skateboard and all your boys skate.

Phil Hill 20:07

And rollers. You know, man, you know where I've been. Um, but but my boys gone off to motorcycle events, you know. So there was an event to go to in Springfield, Illinois. It's six, seven-hour run down to Springfield for a couple days, a little motorcycle rally. And I had made the best laid plans, laid out all the medicine, made that extra prep of instructions and who's got what. Because go go to the motorcycle rally. And one of the kids said that as I was getting the bike packed up, they said, Dad, you going to the motorcycle rally? And boy, my dad heard, motorcycle rally. I want to go. I normally I take them everywhere I go. I took them to national church conferences with me, order wheelchairs at the hotel, make the best late plans, vacations. That's travel with your loved ones in this time of life is a whole nother.

Roz Jones 21:05

Yes, it is. Right. Yes, it is.

Phil Hill 21:07

Yes, it is me. But this was my care time I needed. And I said, Dad, I gotta go. I got I I just need to go hang out for a minute, you know. Everybody's got you. But I don't want to go. Can't I think how do I get a sidecar on the side of this, Harley, or what? Oh my goodness and I said, Dad, they got you, they got you. I I really gotta go. And so got out in the garage, and when he heard that Harley fire up, I got loud, Harley. He heard that Harley fire up, I saw the curtains and the front window flop open. That was a tough one to continue to ride down that street as he watched me ride away.

Roz Jones 21:47

Wow.

Phil Hill 21:48

I got down there at the rally, and there was a vendor booth, and at this motorcycle rally, at the vendor booth was I think her name is Bernadette Stanzis. Thelma from the Good Times.

Roz Jones 22:04

Oh yeah, yeah, yeah, yeah.

Phil Hill 22:07

Thelma was there promoting her new book. Her new book was Her Last Years with Her Mom. My goodness with Alzheimer's. I walked up to the booth and I shared my story a little bit. This is some I'm coming down to this motorcycle rally, but here's a new book I need to read. Here's a person that you know from being from being from a kid in one of them projects in Chicago. You know, theirs was fictitious, mine was real.

Roz Jones 22:43

Right, right.

Phil Hill 22:44

You know, but but but the the you know um we talked a little bit, signed my book, um, took a picture, and she could relate to the story, you know, that it was a story was mine, watching her mom, you know, um go away by being there for her. So I found therapy from the motorcycle ride, but also at the event from another caregiver, loved one that had been through. My mom was past now, and this was her memoir.

Roz Jones 23:18

So go ahead. No, no, go ahead, finish.

Phil Hill 23:23

Always seek out, hear the Lord that guides you through this, but someone's story. Just by someone sharing their story in the grocery store or at the or at the Alzheimer's meetup. Those are valuable.

Roz Jones 23:38

Absolutely.

Phil Hill 23:39

It went to one, but I should have gone to more. You you you you get support. They're they're your support group and system, and um we need that.

Roz Jones 23:49

Once again, my name is Roz Jones. I am the CEO and owner of Jacksonville's Best Caregivers, where we help expand the life of your loved one. Why do we do it? We do it to help the caregiver to reduce that SOS on their journey, which is being stressed, overwhelmed, and providing safety and security. When you can't do it all, you give us a call. We look forward to seeing you on the next episode of the Caregiver Cafe.

Outro 24:14

Until your next visit to the Caregiver Cafe, connect with Raz on YouTube, LinkedIn, and her blog at the CaregiverCafe.net. Caregiver Cafe Podcast specializes in serving those who provide care and support to a sick or aging loved one. I'm the voice guy, but I'm one of you. So when Raz has on experts or frontline workers, I'm listening. We hope you've enjoyed the show. In the meantime, don't forget to connect with Raz on YouTube, LinkedIn, or at the blog at thecaregivercafe.net