THINKWELL
AGEWELL
Before Dementia Makes the Decision for You
AGEWELL
Before Dementia Makes the Decision for You
In this episode, I talk with Katie Powers about the conversations families often postpone until it is too late. Drawing from her professional work and her experience caring for a mother with frontotemporal dementia, Katie explains why advance care planning matters, how to choose the right healthcare agent, and what families should consider when navigating memory care, palliative care, and end-of-life decisions. We also explore how planning ahead can replace uncertainty with greater clarity, connection, and peace.
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Dr. Heather Sandison, ND (00:01.572)
Welcome back to this episode of the Think Well, Age Well Podcast. I’m your host, Dr. Heather Sandison. Today we’re talking about something that can feel difficult to approach, but that ultimately can be an incredible act of love. Making sure the people we love know how we want to be cared for if serious illness or cognitive decline changes our ability to speak for ourselves. We were originally going to be joined by Dr. Bob Uslander as well.
But in a very fitting reflection of the work that he does, Dr. Bob was called away to support a patient and their family at the end of life. We are sending our thoughts to them as they make challenging decisions today. I’m very grateful to be joined by Katie Powers, a healthcare strategist, educator, and advocate dedicated to helping individuals and families feel more informed and empowered as they navigate some of life’s most complicated healthcare decisions. Katie serves as program director.
Of the Empowered Endings Foundation and chair of the San Diego Dementia Consortium. She also comes to this work from a deeply personal place. Katie is the daughter of a mother living currently with frontotemporal dementia. So today we’re gonna talk not only about advanced care planning and dementia, but about what it is actually like to be the family member navigating those decisions and how having difficult conversations earlier.
Can ultimately create more clarity, connection, and peace for everyone involved. Katie, thank you for being here and welcome.
Katie Powers (01:35.576)
Thank you for having me.
Dr. Heather Sandison, ND (01:37.584)
So I wanna start talking about your mom. Can you tell us a little bit about your mom and her journey with frontotemporal dementia and what the first signs were that something wasn’t right and how this path what this path to the diagnosis and then now care for her has looked like for you and your family?
Katie Powers (01:54.841)
Sure. my mom was diagnosed about four years ago with dementia. And the first signs were pretty obvious to me because I worked in the healthcare field, but my dad was very reluctant to admit that there was anything wrong. I think the final straw was when it was during COVID and I was I had to go to the emergency room.
via ambulance because I was really sick and I was at Sharp Memorial. So I needed to be picked up and I didn’t have my phone with me. The only phone number I knew off the top of my head was my mom’s. And so I called her and I said, Mom, can you come get me from the hospital and bring me home? And she said, Sure. And then I’m sitting there waiting for the longest time in the parking structure because during COVID you
had to sit in this weird line. And so I call from the security guy’s phone again and I said, Mom, where are you? And she’s like, I’m in the parking structure. And turns out she was at Rady Children’s Hospital, just a few doors down, but I’m obviously not a child. And so I’m not quite sure what she was doing there. But shortly thereafter she had her license taken away. And
You know, from there it just kind of has been a steady decline.
Dr. Heather Sandison, ND (03:28.142)
And becoming the daughter of someone with dementia, the especially with the work you do professionally in this field, how did it change you?
Katie Powers (03:39.651)
Well, I think for the most part it really gave me a lot of empathy for other people that are living with dementia, Alzheimer’s, any type of cognitive impairment. It’s
one of those things where I di you don’t understand it, you can’t understand it until you actually are living with someone that you love that’s going through it. And seeing my mom losing her a little bit every day has been, you know, the hardest thing in the world for me. And and I have my sister, but she doesn’t live close. So, you know, it’s just one of those things where
You I see it every day, so it’s a little bit easier for me to handle her decline. my sister who sees her every couple months, it’s much harder. So I I try to do everything that I can to prepare her for what she’s gonna see, what to expect when she sees mom the next time. and that that just radiates through me in my in the work that I do.
because when I have one of our patients that has dementia, I might be doing the assessment with Dr. Bob and I’ll look around the home and I’ll notice that there’s a piano. And I immediately think to myself, hey, we need to bring in our music therapist because this would be really helpful for this patient.
Or, you know, if they have a beautiful garden full of, you know, roses or whatever flower they love, then maybe the next time we stop by or nurse visits, I’ll text the nurse and say, Hey, make sure you pick up a bundle of flowers for, you know, Mrs. Jones when you go out to see her next time. And so there’s little things that just kind of creep in that
Katie Powers (05:39.198)
I don’t think I would have noticed or I would have done before without the experience.
Dr. Heather Sandison, ND (05:45.958)
Were there things that you thought you understood professionally that felt really different once it was happening into your own family?
Katie Powers (05:56.123)
One hundred percent. I thought I knew just about everything about dementia. I’d been to all of the classes, I’d gone through all the workshops, I’ve gone through teepa snow. and my gosh, it was the biggest slap in the face when it actually happens to you. You all of a sudden forget everything that you’ve been taught and you r remember pieces of it, but
there’s just things that you have to go back and relearn because you now you’re actually having to do it. You know, the hand under hand method. And I I’m like, yeah, I know what that is, but I’ve never actually done it before.
Dr. Heather Sandison, ND (06:40.91)
And probably you haven’t done it when you’re cranky and tired and triggered and and
Katie Powers (06:44.862)
And and upset because mom’s not listening and she’s, you know, trying to like trying to get her in the shower is a challenge. And you hear about it, but then when you’re actually doing it yourself, so pretty much everything went out the window. I had to really relearn and re-immerse myself into everything dementia related so that I had a better understanding. I honestly
didn’t know how d dementia was even diagnosed, which is really sad. But I I thought it was just an MRI or something and it’s so much deeper than that. So yes, a lot changed. Yes.
Dr. Heather Sandison, ND (07:31.014)
Very, very complex. And are there conversations that in your family that you wish you had had earlier? I think this is one of those heartbreaking things about dementia. And as it creeps up, is that families often realize there were questions they wish they’d asked when their loved one was still very clearly cognizant and able to answer them. Did that happen in your family?
Katie Powers (07:56.353)
Absolutely. one of the things that came up probably around the time that we knew that my dad is gonna be 80 this year, my mom is 75. And so probably two years ago we started noticing that dad was no longer able to really care for her by himself.
And he started getting frustrated with her because of her incontinence. And I would be around them and I would overhear him yelling at her because she peed on the floor or, you know, had an accident or the bathroom was a mess. And I just said, Whoa, like we need to do something. So we had those conversations then, but there was nothing
In her advanced health care directive, there is nothing in her plan, nothing about what happens if mom gets dementia. There’s no direction whatsoever. So dad and I literally had to figure it out on our own and we had to guess as to what mom would want. Did she want to stay home with in-home caregivers? Did she want to move into a community, a memory care community?
Dr. Heather Sandison, ND (09:07.354)
Yeah.
Katie Powers (09:14.694)
And she eventually did have to move into a memory care facility here in Escondido. And it’s okay, but you know, I I toured just about every single one in San Diego County and I had my top five that I liked, but unless you
Dr. Heather Sandison, ND (09:36.091)
What were your criteria? I’m curious. And for other people who are looking or considering this, you know, I’m sure the answer for a lot of people is I would love to move into memory care if that reduces the burden on my loved ones, right? If that’s what’s going to be easiest for them, but only if it fits a set of criteria, right? Because there’s a spectrum of what that reality can look like, of what day-to-day life might look like in a place like that. So what what were your criteria? How did you decide?
Katie Powers (09:48.055)
Right.
Katie Powers (10:06.102)
Well, for me, even though before mom’s dementia, I had toured plenty of facilities, but never through the lens of a daughter looking for a place for mom. And so I had to go back and retour a lot of places. and I went specifically looking at their memory care units. And for me, it was the feeling that I got when I walked in.
I wanted to know what the residents were doing, how they looked, did they seem happy? Did they seem content? What kind of activities did they have going on? Was there were they just slumped over in wheelchairs, sitting there doing nothing, being force fed? You know, there was just so many things that I had seen in various situations and the
One thing that touched my heart the most was when I toured one facility and one of the residents came up to me and she just had a nice conversation with me and she didn’t know me, but she asked for my phone number and I told her that I was looking for my mom and she said, okay. She said, you know, if I call this number, can I talk to your mom?
And I said, well, if I’m with her, you can. And it was just the sweetest interaction. And it really touched my heart. And it made me feel like this this person is happy here. And so there for me it was more about the feeling and and you know also
Of course, the the regular criteria, how many caregivers per resident, you know, that type of thing. I wanted to make sure that there was enough staff and that they were trained in dementia, which surprisingly a lot of them are not.
Dr. Heather Sandison, ND (11:58.895)
Yeah, you so here in San Diego, staffing is challenging, right? It’s the it’s there’s a high cost of living. We certainly had Morama here in in Vista for a while, a memory care community. And that was one of our biggest challenges was finding adequate staff and then having them stick around long enough to train and have them have the skill set that they needed because it is a often an entry-level position. it’s a it’s very challenging, but yes, so many of the things that you
Katie Powers (12:22.924)
Mm-hmm.
Dr. Heather Sandison, ND (12:27.856)
talked about. I mean, I I’m bringing up these experiences of walking into places and it’s like what hits you immediately? That the culture, the smells, right? The what people are doing. Are they all watching TV? Are they all is is it sparse, right? Is everybody in their rooms isolated from each other watching TV? Or are they out engaged and interacting? And there is a spectrum out there.
Katie Powers (12:36.46)
Mm-hmm.
Katie Powers (12:46.306)
Mm-hmm.
Right.
Dr. Heather Sandison, ND (12:52.142)
And I’m sure day to day, right? There are days when people are more tired and there’s it’s hot, or you know, there are there are different people on staff and sometimes they’re more tired and sometimes they’re more jazzed. And yeah, so it’s it’s challenging, right? And it’s challenging to own and operate and and run a community like that. It is hard. But
Katie Powers (12:52.365)
Yeah.
Katie Powers (13:15.928)
Right.
Dr. Heather Sandison, ND (13:17.654)
There’s people who do it really, really well and some who, you know, where they’re it it’s not quite the place that feels right for mom. Yeah.
Katie Powers (13:25.548)
Yeah. I definitely have a pulse on which ones feel bright and are done right. And I wish I could put a list together of criteria for other people, but I think the biggest thing is just how how does it make you feel when you walk in there? And that it’s it’s mostly intuition and just sitting back and observing, looking, paying attention to details.
Dr. Heather Sandison, ND (13:43.627)
Gut punch. Yeah.
Katie Powers (13:55.777)
Spending as much time there as you can, I think is important too. If you can have a meal there, have a meal there.
Dr. Heather Sandison, ND (14:02.438)
But how how’s mom doing there?
Katie Powers (14:05.23)
She’s done pretty good. You know, she has her good days and her bad days, but her decline is happening, you know, day by day. And the facility she’s at, I would say, is pretty good. it’s not my number one choice, but my dad is the resistance and
refuses to move her because he spent all this money on furniture and blah blah blah and it’s it’s just a battle, so
Dr. Heather Sandison, ND (14:38.182)
And these are some of the very real dynamics that come up, right? I’ve certainly seen it from my perspective of, you know, we’ve got an a a spouse, a couple of adult children, maybe an in-law, and everyone’s got their opinion. And there’s the financial considerations, there’s logistical considerations of how far is it from me? So how often am I gonna get there if it’s another 15, 20 minutes out of the way, versus right around the corner?
Katie Powers (14:51.16)
Mm-hmm.
Katie Powers (15:04.374)
Right.
Dr. Heather Sandison, ND (15:06.378)
there’s I mean there’s that gut sense that you get when you walk in. There’s the friends, right? Like you you described this woman who came up to you and asked for your phone number, ask if she could call and talk to your mom. It’s like, this woman might be a friend to my mom. There might be a social connection here. Whereas another place, it might not feel like there’s that that potential. I know when my mom’s talked about it, she’s like, well, if there’s someone there I know, if I already have some community, maybe that helps.
Katie Powers (15:18.135)
Yeah.
Katie Powers (15:21.549)
Right.
Yeah,
Katie Powers (15:35.02)
Mm-mm.
Dr. Heather Sandison, ND (15:35.79)
And so then, you know, does it make sense for it to be a little bit further away? There’s just an endless number of things that that you could discuss. And then the complexity of the dynamics within a family, it’s a whole ‘nother level. How do you navigate it?
Katie Powers (15:50.368)
Right.
Well, one thing that was nice is I took my dad to an advanced health care planning seminar and he I was actually speaking on a panel at the same seminar, so he came to see me speak, but in the process I looped him into this advanced healthcare planning talk. So he and I sat there and and listened to this presentation by Doctor Mitz Tomita.
And it was great because when they were going through the advanced healthcare directive and healthcare agents and I elbowed him and I said, Dad, who’s your healthcare agent? And he’s like, Your mom. And I said, What? She doesn’t have capacity anymore. And so I said, Okay, write that down. Like you need to change that. And then
you know, I got all the documentation that I am my mom’s healthcare agent, so I can actually make decisions on her behalf. but, you know, it’s it’s been a battle and my parents are of that age, they’re baby boomers, that they went to the attorney and they got all the paperwork done ten years ago. And so that should be sufficient. And things have changed since then. And so now things need to be changed.
And that is what I’m constantly working on with my dad.
Dr. Heather Sandison, ND (17:20.422)
Yeah, an advanced care plan is particularly important when there’s either high risk or soon after someone receives a dementia diagnosis. When do you think families should start that conversation? And then as you just alluded to, like how often should we be checking in and updating them?
Katie Powers (17:40.931)
Well, one thing that we did at Empowered Endings recently was start a program called the Clarity Path. And it’s a six-week program that’s guided by Dr. Bob and takes people through an advanced healthcare directive from start to finish, but includes questions like what’s most important to you? What what thresholds, what are your thresholds? Do you want to
continue living if you no longer can feed yourself or you know I mean it’s very very in-depth and it takes you through so many things that I wish my mom had answered for me because now I just have to guess. So I’m doing mine I’m going through this first cohort of the the Clarity Path with Dr. Bob and 20 other people.
so that when I get done, I will have an advanced healthcare plan for my daughter. she’s fifteen now, so she’s not my healthcare agent, but down the road she’ll have a good idea of what I want and what honors my wishes. And that way she and my healthcare agents can know that they’re doing what I want.
And those decisions were made long before any cognitive decline took place. And they should be reviewed often. I would say every year would be ideal, but every couple of years, or if there’s any change of condition, would be a good time to review. Right.
Dr. Heather Sandison, ND (19:15.77)
Put this on the bucket with your taxes like that shore that nobody wants to have to go back to.
Katie Powers (19:22.774)
I mean, if you’re healthy and everything is going fine, th there’s probably no need to go back and and revise much. But I I would say the most important thing is making sure that your healthcare agents are identified and that you’ve spoken to them and you’ve had conversations with each of them and keep those conversations going. You might be friends with someone now, but maybe haven’t talked to them in five years when they have that they get a call.
and might have to make a decision on your behalf. So maintaining those relationships with your healthcare agents is crucial too. Yes.
Dr. Heather Sandison, ND (19:51.973)
Yeah.
Dr. Heather Sandison, ND (19:57.041)
Or updating them. Yeah. Cause I guess we’re kind of describing the risk of waiting, right? In your dad’s case, your mom is no longer able, right? She d no longer has the capacity to be his healthcare agent. So that needs to be updated. God forbid he ends up in the hospital, unable to make decisions for himself. You could not step in because legally you’re not that person.
Katie Powers (20:17.506)
Right. And I’m the only daughter that lives here. He has two daughters from a previous marriage. And so the three of us are healthcare agents for my dad now, but they both live in Utah. So I’m the only person that’s local for both mom and dad.
Dr. Heather Sandison, ND (20:29.912)
interesting. Right. Proximity is important. What should we actually have in place? So I think the like the advanced care planning, I know at least in my mind, it’s this alphabet soup of you like we talked about an agent. There’s the pulse form, there’s these legal documents. There’s I how do we make sense of this? And is there a checklist, especially in this this course that you and Dr. Bob are working on, working through?
Katie Powers (20:57.824)
Yes, absolutely. So you can either go through a course, which I would highly recommend. you can also get together with an estate planning attorney that has specialized in in this type of work. but you know, we offer it through the practice. Dr. Bob will sit down with anybody, we pull all the medical records, we find out exactly what what’s going on.
with conditions and maybe some pre precursors to something that might come up in the future. And Dr. Bob will actually sit down with a person or a couple and do a complete advanced healthcare directive with them, which includes all of the forms, all of the check boxes. And so you can either go through the clarity path with us with a group or you can sit down and do it one-on-one with Dr. Bob.
Dr. Heather Sandison, ND (21:55.241)
or an estate planning attorney if you’re not in San Diego.
Katie Powers (21:57.429)
An estate planning attorney. Mm-hmm. Yeah.
Dr. Heather Sandison, ND (21:59.857)
The difference between an advanced health care directive and a pulse form? I don’t even know that.
Katie Powers (22:04.782)
The puls form is the pink form that is basically the directions for what to do in case of an emergency. They’re usually on file with the hospital. And so it it covers the very basics of you know, DNR, do not resuscitate, you know, feeding tube, various, you know, but very simple kind of if you’re gonna save someone’s life or if you’re not.
Dr. Heather Sandison, ND (22:35.172)
Yeah, if you’re gonna make those heroic efforts. Yeah. And then choosing a healthcare agent. You’ve talked a bit about this, but I think many of us automatically name our spouse or the oldest child without really thinking carefully about what we’re asking that person to do.
Katie Powers (22:37.848)
Correct. Yeah.
Dr. Heather Sandison, ND (22:53.59)
And so like you mentioned, you’re in town, right? That’s an important consideration. Some people obviously you do this professionally as well. You’re deep in this, so you have a much more nuanced understanding than someone who, you know, works in sales and marketing or or something else, right? Entirely different. And so what should we consider when we’re choosing someone to make some of these most important decisions on our behalf? What are the qualities that we would look for?
Katie Powers (22:59.096)
Mm-hmm.
Katie Powers (23:08.024)
Correct. Yeah.
Dr. Heather Sandison, ND (23:21.946)
What are maybe some red flags that we would want to avoid, right?
Katie Powers (23:24.238)
Right. Well, for me, what I considered was number one, my I’m not married, so I’m a solo ager right now. And so I don’t have a spouse necessarily to name and and I don’t know that that would even be the best person
in the first place because a spouse is obviously gonna be very emotional, very frightened, very scared. They obviously love you and are gonna try to do everything they can to keep that person alive. And some of that sensibility of honoring a person’s wishes might not be in their in their space and their availability at that moment. So
Dr. Heather Sandison, ND (24:18.394)
You know, I also see just can I I wanna double click on the spouse conversation because I also see that people are often right, they’re married, they’re in the same age bracket, right? So they’re both in their late 70s. And the overwhelm of technology, of medical interventions, of the complexity of medical language, it it’s like they don’t even if they have cognitive capacity, the capacity required for this role.
Katie Powers (24:18.539)
It’s
Dr. Heather Sandison, ND (24:47.655)
is sometimes just outside of what what they can do.
Katie Powers (24:52.46)
Yeah. I think it needs to be someone that is that you’re close with that knows you and understands you, but can also take a step back and kind of remove themselves from the emotional part of this. yeah, I had a conversation with my sister about my
Dr. Heather Sandison, ND (25:08.26)
detachaby.
Katie Powers (25:13.408)
end of life wishes and I told her that if I end up with dementia like like mom has that I want to and it will be in my advanced healthcare directive that I elect to voluntarily voluntarily stop eating and drinking and when I get to a certain threshold. And I said, as my healthcare agent, you know, Jen, can you do that? And she said, I don’t know. I don’t think so.
And that was heartbreaking for me to hear, but I mean that’s my only sister. And she said, Well, maybe I could do it, but can you put somebody else on there? So that
Dr. Heather Sandison, ND (25:52.495)
And how nice to get an honest answer from her, right? ‘Cause the last thing you wanna do to her is have her in that imp that what feels like an impossible position, right?
Katie Powers (25:55.551)
Yeah. Yeah. So
Katie Powers (26:03.178)
It is an impossible position, especially voluntary stopping eating and drinking. It takes seven to ten days for a person to pass. And that’s a long time and a lot of waiting for the the family. fortunately, the patient, if it’s done properly with the right medical care, it’s painless you know, for the patient, but it’s very painful for the family.
So I elected to have one of our death doulas that works with us as my healthcare agent because she knows me, she knows the industry, she knows the lingo, she knows how to advocate, she knows exactly what needs to be done. If I’m in a memory care facility, she knows to pull me out, bring me somewhere home so that I can go through the process that I need to go through. And
You know, the same thing goes for, you know, if I end up with an uncurable cancer or disease that I have less than six months to live, I would like to elect to go through medical aid in dying and die with dignity on my own terms, surrounded by my family, surrounded by love, in the environment that I want to be in. Don’t want to die in a hospital, don’t want to die in a skilled nursing facility. So
It will all be outlined but yes, the right person is is very important.
Dr. Heather Sandison, ND (27:29.23)
You know, I had two deaths per s close to me personally in the past year and one was my sister-in-law who was only thirty-eight and was diagnosed with bowel cancer on September fifteenth and she passed away in ICU on September thirtieth. It was just absolutely unbelievably heartbreaking, left behind her her two boys. and the you know, the it was tragic and she was in the right place for what was happening, I think.
Katie Powers (27:37.349)
no.
Katie Powers (27:44.557)
Well.
Dr. Heather Sandison, ND (27:59.365)
Right. But because she was so young, nobody saw that coming in two weeks. Right. But she didn’t have a chance to say, No, I’d rather be at home. I’d rather not be hooked up, you know, and they were so wonderful in the ICU. They they took everything off and they allowed the boys came in and were able to say goodbye to their mom. emotional. Talk about it. but just the contrast with
Katie Powers (28:04.172)
Right.
Katie Powers (28:09.079)
Right.
Katie Powers (28:19.149)
Mm-hmm.
Dr. Heather Sandison, ND (28:24.943)
My one of my best friends lost her father recently and he had pancreatic cancer and chose the medically medical aid in dying. And his grandkids were there doing a puzzle next to him. He drank, he was able to drink the juice, and you know he signed some paperwork right before to make sure his wife and kids were all taken care of and that there was there were no question marks and they they had flowers everywhere and he felt very celebrated and it was this very peaceful place.
Katie Powers (28:37.174)
Okay.
Katie Powers (28:45.517)
Yeah.
Katie Powers (28:50.434)
Mm-hmm.
Dr. Heather Sandison, ND (28:54.471)
process. It felt chosen. And the the juxtaposition between the two was so striking for me. And then, you know, of course in our world we hear about sort of the the you know all the chaos that can come with resisting death. And so I I’m curious how you document what actually matters to you. so that people
Katie Powers (28:55.715)
Right.
Dr. Heather Sandison, ND (29:24.379)
people know so that everyone knows so there there isn’t tension in the family. and what what pieces are most important about what we communicate and how we communicate it?
Katie Powers (29:37.027)
Well, the clarity path that I’m going through right now documents we have a platform online where it has two different questions and then you can literally click a button and start talking and it’ll type in your answer, which I love because otherwise I’d be typing away. and I can actually express my true feelings and then
I can go back and edit it later, of course, but it gets how I’m actually feeling in that moment when I’ve been asked that question out on paper. So the most important thing is I think to have it written down. And it can be something as simple as writing a letter to your family. some people have recorded a video. there’s different ways that you can do it, but there’s nothing that has to be
legally documented except for the voluntary stopping eating and drinking that has to be documented prior to cognitive decline.
Dr. Heather Sandison, ND (30:45.475)
So these this might be an opportunity like through a video or a letter where you might describe things like what does dignity mean for me? What how how important is independence? What gives my Okay, awesome, amazing. So you have a list of questions, like things that come up for me as I was kind of preparing for this conversation. It’s like we talk a lot about meaning and purpose and what what gives us joy at different stages of life often will change.
Katie Powers (30:53.475)
Mm-hmm.
Yeah. We go through that in the clarity path. Yeah.
Dr. Heather Sandison, ND (31:14.545)
So what would an acceptable quality of life, what amount of purpose, dignity, meaning, joy would look like quality versus I’m ready to go? How how do we give our families enough of that? I mean, can you ever so that they can make a decision for a scenario that we maybe didn’t anticipate?
Katie Powers (31:14.709)
Mm-hmm.
Katie Powers (31:25.633)
Right.
Katie Powers (31:39.853)
I don’t think you can ever come up with every possible scenario out there because like you just mentioned with your sister in law had this, you know, very tragic illness come on suddenly and a very quick death afterwards. So and I’m sure that someone at that age probably didn’t have a whole lot of planning done.
I think it comes later in life that we start thinking about it. And for me, I think mine is gonna outline a lot about dementia because of my mom. But I also understand that that is the one piece of this that if I do want to elect to
Dr. Heather Sandison, ND (32:20.166)
Your experience?
Katie Powers (32:29.106)
die with dignity on my own terms, whether through voluntary stopping eating and drinking or through medical aid and dying, I have to have that documented prior to any cognitive decline. So that will be in mine very clearly. But I think that there are lots of questions. There’s lots of guided questions that you can go through
the clarity path I think is going to be a really beautiful thing for people to go through and experience because it does bring up a lot of those questions. What brings joy? And it there’s different adjectives that you can pull from a list and things that describe you, and then you kind of pick your top five and then talk about what does that look like for you? And bin or compassion.
Dr. Heather Sandison, ND (33:06.435)
Sounds neat. Yeah.
Katie Powers (33:26.494)
love, you know, a couple others, but what does compassion mean to me? And what does love mean to me? And you know, caring for others, which is a huge thing for me. So I would want those things honored and r remembered about who I am.
Dr. Heather Sandison, ND (33:27.942)
Yeah.
Dr. Heather Sandison, ND (33:53.286)
This I mean you’re the Clarity Path. I I wanna sign up. I wanna do it. I’m sure a lot of people listening do I c let’s share right now how do people find out more about this Clarity Path program?
Katie Powers (33:58.028)
Yeah.
Katie Powers (34:05.362)
you can go to the website. It is www dot the clarity path believe dot com.
Dr. Heather Sandison, ND (34:15.705)
Okay, we’ll put it in the show notes so that everybody can find it. And I think the way what you’re describing, I mean, I’m sort of addicted to personal growth anyways, but it just sounds like a really neat opportunity to get to go through this with a group and like take the time to be intentional about this, which for me is kind of a carrot. But I think for some people they might be like, yeah, no, not gonna take the time to do that. And so I do want to bring up the stick here. The what if if you don’t.
Do these things if you don’t have a clear path? If you don’t have this documented, what happens when siblings or other family members are disagreeing about what their loved one would have wanted? What do we do when there’s all this burden and conflict, financial, emotional, logistical, like you know, caregiving, as you well know, watching your dad go through it, being a bit thick in it with your mom? There is
Ripe room for conflict and disagreement. So what happens? What happens when we don’t have it written down?
Katie Powers (35:14.876)
yeah.
Katie Powers (35:19.86)
Well, when you don’t have it written down, then the basically what happens is if there’s an emergency, you go into the ER and the their job is to save your life unless they’re told otherwise. They are going to intervene, they’re going to crack your chest open, they’re going to put you on feeding tubes and ventilators.
paddles on your chest. There’s that’s what their job is to do. And so they do that and they then send you on to the next stage, which is either home or to you know, a specialist, refer you to a specialist, and then from there it’s treat, treat, treat until there is no more treatment.
Dr. Heather Sandison, ND (36:14.641)
Yeah, the it’s so that can be a painful slog through a lot of medical intervention that not everyone is interested in getting. It’s expensive, it’s time consuming, it’s all all consuming. and for the for the right person, it’s the right thing, but it’s not the right thing for everyone. And so making sure that that’s spelled out is important. I’m
Katie Powers (36:28.397)
Right.
Katie Powers (36:35.575)
Right.
Dr. Heather Sandison, ND (36:40.515)
Want people to understand palliative care and hospice from you, you being so in it with Dr. Bob. So I think that we should just start with like a definition. Like, what is palliative care and hospice? Because I think so many people in their mind, it means we’re giving up. It means we’re preparing for death. And it’s more nuanced than that. So what do you wish families understood? And can you just give us like what is palliative care? What is hospice?
Katie Powers (37:07.756)
Sure. well, the definition of palliate means to relieve symptoms. So you know, my best way of defining palliative care is it it’s a place for people that the traditional hospital system has kind of done their thing, they have tried everything, they might still be trying.
But you’re passed from one specialist to another, to another, to another. It you know, you could have dementia, but you might also have stage four cancer. And so the neurologist and the oncologist are kind of back and forth, and maybe they’re not talking to each other. So a good palliative care physician comes in to kind of help bridge those gaps. And then it acts as a bridge to give patients really good high quality care where they
have a doctor who they have his cell phone number, which we experienced earlier, and is on call and you can call them at any time. So if you’re not sure if you should go to the emergency room, you can call the doctor if you need to be seen. Instead of having to go out to a doctor’s office, the palliative care physician, at least in our model, comes into your home or wherever you’re at.
I know for like my mom with dementia, it’s really hard to get her to the doctor’s office for something as simple as a UTI, which happens quite frequently. So having a doctor that can actually go into the facility or send a nurse, if we assume it’s a UTI, send a nurse, get the sample, you know, start her on a broad spectrum antibiotic, and then once we get the culture back, then we figure out what needs to be done next.
Dr. Heather Sandison, ND (38:56.357)
Right, without having to amplify her disorientation and dehydration and all the other things by dis
Katie Powers (39:00.118)
Right. Or or lose her at the hospital, which my dad has done.
Dr. Heather Sandison, ND (39:03.847)
yeah, right. Loser where she literally is so disoriented she’s lost, doesn’t know how to get back from the bathroom. Or the is or have her get an infection, right, where that she succumbs to because the hospital is the easy place for that to happen. Yeah, yes.
Katie Powers (39:18.424)
Right.
Katie Powers (39:23.446)
Right. And then hospice is, you know, really geared more towards somebody who is less than six months to live. And it is Medicare covered. Palliative care like in our model is not covered by insurance, it’s private pay. and then hospice is covered by Medicare. So they come in and typically you have you know maybe
a nurse visit a couple times a week, LVNs a couple times a week, and they provide like the hospital bed, the commode, you know, all of the equipment that you might need for the, you know, kind of end of life stage. And hospice when it’s done well is amazing.
Dr. Heather Sandison, ND (40:12.247)
Yeah. Yeah. And we’re lucky here in San Diego. You guys are palliative care, not hospice. So is there a hospice company here that you recommend working with or?
Katie Powers (40:23.49)
You know, I really love a couple. one of them is Seacoast Hospice and Comfort and Peace has been really good.
Dr. Heather Sandison, ND (40:31.623)
Yeah, yeah, agreed. You know, your personal story here, I think it it’s so much of what defines you at this stage in your career, even, and it brings that compassion, that thoughtfulness. And there’s a lot of ambiguity, I think, that comes up with dementia that I’d like to give voice to. because you’re often grieving changes in someone.
While they’re still physically there, and I’m curious what you’ve learned about, you know, like loving your mom through these chapters and your dad.
Katie Powers (41:02.347)
Right.
Katie Powers (41:09.504)
Yeah, loving him has been a little harder than loving mom to be honest. but you know, I think there’s there’s a term called
Gosh, what is it?
Grief, anticipatory grief. And you know, there’s there is something so real about that because you are literally losing somebody every single day. It’s not like something sudden like a car accident and someone’s just gone.
Dr. Heather Sandison, ND (41:30.171)
Yeah.
Katie Powers (41:47.167)
it’s every single day you’re feeling that loss and I got my first few gray hairs and I didn’t know what to do and I just wanted to go color my hair and so I got a box of like really dark brown hair color and somebody was like, Wow you look really harsh and said I didn’t know who to ask like I didn’t have my mom there.
Dr. Heather Sandison, ND (42:11.621)
Well that’s
Katie Powers (42:13.458)
And so there’s times when you just really miss her and and I miss her every day. And I call her every day. I put an Alexa in her room so I can just drop in and that way she doesn’t have to worry about trying to dial on her phone or anything, ’cause that rarely happens. Or if it does, it’s at like two AM or something random. And then with dad, I think I just have to r remind myself every day to
be compassionate because he’s also grieving the loss of the wife that he’s known and had for four years. And they got married when I was five or six. And so, you know, it’s it’s challenging, but I think just leading with love, not being quick to be upset or judge or
Dr. Heather Sandison, ND (43:08.763)
Yeah.
Katie Powers (43:09.292)
Try to put yourself in the other person’s shoes.
Dr. Heather Sandison, ND (43:12.859)
Well, maybe you’re answering this question already, but is there a practical thing that families can do today and maybe every day?
Katie Powers (43:25.528)
practical thing to do every day. I think for me, the most important thing is for me to be in communication with both my mom and my dad and my sister every day because that’s that’s the family, that’s the core family that we have left.
And and also my daughter, you know, she’s she’s not doing as well with this whole thing with my mom’s dementia. It’s really hard for her. But it you know, at the same time I don’t push it with her because she’s grieving the loss of her grandmother. So everyone’s grieving and we have to just understand and you know, check in, check in with people. I check in with my dad every day.
Dr. Heather Sandison, ND (44:01.104)
Yeah.
Dr. Heather Sandison, ND (44:10.843)
Be there in the way of
Katie Powers (44:11.248)
Yeah, even if it’s just a text message or something.
Dr. Heather Sandison, ND (44:14.181)
Yeah, yeah, and that was something that surprised me about my sister-in-law’s death is that everyone in the family processed it really differently, right? Her grandma lost her daughter, the girl’s dad lost their sister, there was everyone there of course her boys lost their mom and everyone’s going through it in a different way. Everyone’s got their grief and it’s not just about grieving on your own, it’s about showing up for the people who are still there.
Katie Powers (44:43.266)
Right.
Dr. Heather Sandison, ND (44:44.081)
Yeah, and and and acknowledging and I think being considerate of their process and that they’re gonna go through it a little differently. I wanna flip 180 degrees here. You do spend so I want to acknowledge you spend so much of your personal and professional life thinking about dementia, caregiving, a serious illness, and life’s hardest transitions, including the end of life. But what brings you joy right now?
Katie Powers (44:53.089)
Yeah.
Okay.
Katie Powers (45:10.286)
that is such a loaded question.
Dr. Heather Sandison, ND (45:14.427)
Well, you’ve been thinking about it with this clarity path process, all right? So I feel like I feel like you have a little leg up on most people.
Katie Powers (45:17.375)
I know, I know.
I think right now what brings me the most joy is getting out and connecting with people face to face, not just, you know, sitting spending too much time in front of my computer. and like to do meetings outside coffee shops and go to lunch or even go take a walk on the beach with someone and just chat with them while we’re walking down the beach. And so I try to just
keep it as normal as possible, but at the same time remember to take care of myself and my phone automatically shuts off from ten to seven in the morning for a reason. So I have yeah there’s the only people that can override it are my dad and my sister.
Dr. Heather Sandison, ND (46:09.583)
And don’t override.
Katie Powers (46:18.816)
Not even Dr. Bob.
Dr. Heather Sandison, ND (46:22.439)
Katie, thank you for being here and especially for being willing to share not only what you know and have learned professionally, but your experience as a daughter in this. One of the things I really hope that people take away from this conversation is that advanced care planning isn’t about death. It’s really about love. It’s about knowing someone well enough to understand what makes life worth living for them.
Katie Powers (46:44.0)
It is
Dr. Heather Sandison, ND (46:51.173)
And then caring enough about those people we may someday leave in charge of these difficult decisions that we don’t make them guess, that we don’t make them argue. And dementia makes these conversations just particularly think precious because we don’t always know how long we’re gonna have the ability to clearly express our wishes.
Katie Powers (47:01.59)
Right. Right.
Katie Powers (47:15.011)
Right.
Dr. Heather Sandison, ND (47:16.335)
I think and please jump in and correct this if I didn’t get it quite right, but the invitation from today’s conversation is do not wait for a crisis. Do not wait for the moment you think you need this. Ask the questions, tell people you love what matters to you, write it down, make a video, write a letter, and then revisit the conversation as life changes.
Katie Powers (47:40.366)
Correct.
Dr. Heather Sandison, ND (47:42.215)
Katie, I am so grateful to you for the work that you’re doing for families navigating dementia and the end of life and serious illness, and also for the way that you are honoring your own family’s experience and making this path a little clearer for those that will come behind you. I your work is so important and I know not always easy, but I couldn’t be more grateful that you’re here in our San Diego community doing this, offering these services, and making it really hard.
Katie Powers (48:09.24)
Yeah.
Dr. Heather Sandison, ND (48:11.879)
hard part of life a little easier for people.
Katie Powers (48:15.534)
Thank you. It’s a labor of love.
Dr. Heather Sandison, ND (48:18.639)
I can tell. So to everyone listening, please share this episode for someone you think needs to hear it so they can open up those conversations and reduce the suffering associated with end of life. Until next time, keep taking good care of your brain, your body, and those you love. Be well.
Katie Powers (48:38.605)
And the website.
