Why you should start early with end of life wishes and details with Susan Papiri

Susan Papiri, Community Relations Director for Dignity Memorial. She discusses involving loved ones earlier regarding their wishes, preferences and religious traditions. These conversations can give honor to their legacy and reduce family stress.

If you are in the Orange County/San Diego area and wish to learn more about services offered, you can call their toll-free number at (949)-622-7171

Transcript

Copy Transcript Copied

Intro 00:06

From the University of California, Irvine, this is UCI minds, spotlight on care, the podcast where we share stories, experiences, tips and advice on caring for loved ones affected by Alzheimer's and other dementias.

Virginia  00:22

Welcome to spotlight on care. I'm Virginia Naeve. And I'm here with my co host, Mr. Steve O'Leary. Our listeners to this podcast know that when a loved one is diagnosed with dementia, life takes a tough turn. And it's easy to see why funeral planning or the end of life service planning slips as a priority. There are just too many other things that need our focus and attention. We've had a podcast informing our listeners about the necessary legal documents to have prepared when someone gets diagnosed. Today, we are taking that a step further. And we will talk about end of life preparations and what you should think about. Our guest today is going to help us with the topic of preparing for that end time. Her tips and advice can help all of us whether or not we're caring for a loved one with Alzheimer's or other dementia. Our guest is Susan Papiri. She has over 30 years experience in business development and marketing in the senior care industry, including skilled nursing and nonprofits. Susan currently serves as Community Relations Director, Orange County and North San Diego markets for Dignity Memorial. She's going to talk about embracing your loved ones legacy, she will introduce the subject of what you envision the celebration of life, memorial service, funeral, etc. To look like and how to make that happen. Susan's goal is to ensure that no one has to say, Oh, I wish I would have known that when she believes that there is no greater honor than helping to remember a life well lived. welcome Susan. Steven and I are glad you're here.

Susan  02:24

Oh, thank you so much. I'm really happy to be here. 

Virginia  02:27

Good. Steve. And I like to make short comments in the beginning of the podcast about what we went through with our loved ones concerning our guests topic, Steve, when when did you become aware that planning the service for the end of Patty's life would probably be helpful and necessary?

Steve  02:51

Yeah, I think that that's something that you're so busy, as the caregiver that what can slide by is what happens after end of life, you know, and when that moment hits, it's difficult to kind of scurry, if you haven't made sure. In our case, Patti, and I had talked at length about what her expectations were, as she had cared for her parents and her sister had already passed away. So we'd been through some examples. And I think that's just something you can draw upon. You know, he's like, Well, I went to this or I went to that, what do you think? And she wanted to be cremated. So that course made things easier. But I believe that a lot of us just don't take the time to talk about it early enough and to get it scheduled.

Virginia  03:38

I don't think you and I've ever even talked about that. Have we?

Steve  03:42

Kind of one of those things you let pass? Yeah, yeah. 

Virginia  03:47

In my experience, I think my brothers and I assumed that since our parents had advanced directives, and they were active in their church, mom's pastor would basically take charge, because we didn't want to think about the topic of death preparations. I don't even think we thought about her funeral service planning. I certainly don't remember asking her anything about what she would have wanted during a service. But since she had Alzheimer's, it would have had to have been in the beginning, or at least the beginning of the middle of her disease, or she really, I don't think she could have answered it very well. Well, we'll find out let's let's talk to Susan, let's get started. Susan, tell us how you got involved in the senior care industry. And what experience do you have regarding cognitive issues in your work and personal life?

Susan  04:43

Well, I actually started loving seniors when I was a very young girl and a lady by the name of Mrs. Kressel, who lived down the block used to love to have all the young kids come down she'd pay us like a quarter an hour and we do little household things for her yard work, whatever. She taught me how to make homemade Chex Mix, she taught me that the best way to clean windows was was with newspaper and vinegar and water. But she had a husband who I didn't realize at the time had probably had a stroke or some type of very traumatic type of disease or injury, and was bedridden. And so one of the things that she always had us kids do was to go in and say hi, and kind of just talked to him for a little bit, when we'd go down to help him. So at a very young age, without me even knowing it, I was being conditioned to be there for seniors, and I just loved them. And I didn't have my grandparents here in California, they were back East. So she was kind of an adopted grandma. And it just led to me going into senior care, and then nonprofit work. And then my dad ended up with stroke related dementia. And my sister and I were dealing with that. And as you both know, and many of our listeners know, sometimes it's, if they were stubborn before they had it, they're even more stubborn after they're diagnosed, and it can be a battle. So, you know, we knew what he wanted. But, you know, he was under different impressions of what things were as far as what His funeral was going to be. And he had forgotten some of the plans that my mom had made. She had passed in 95. But she had made some plans, thank God. And so we just, we kind of knew. But what we didn't know, because I wasn't in this business at the time, was how much it would have been beneficial to have planned and paid for things back when.

Virginia  07:02

So how old was he, when he had that stroke? 

07:06

He was in his he was in his early 80s, when he had the first one. And then he had a lot of little TIAs. And then he had a fall which probably was due to a TIA and you know, and it just it started presenting very much like an Alzheimer's type dementia, but it wasn't specifically that type. But same type of symptoms and sure.

Virginia  07:30

I want to ask you, we've spoken before and you mentioned the importance of legacy. Can you clarify that for me? What do you mean by the importance of legacy when discussing funeral plans,

Susan  07:45

I think that a lot of us forget that, that that kind of planning and discussion is really part of what we leave our family, just like an inheritance. Just like the lives we touch, we can touch lives in this way, in a positive way. You can help your family in so many different ways, by sitting down with either your spouse or with them and just having the discussion first and foremost of hey, you know, did I ever tell you about the time when I was younger, and this happened, you know, to start telling stories about yourself, make sure they know you fully. If you're not that kind of person, maybe you could write it down. Many, many funeral service homes and and mortuaries have guides that will help you and have sections that will kind of guide you through to put down information that needs to be put down to lists, stories, you know, that type of thing. But it also by saying your wishes, it will actually help that family not argue so much when the time comes. And that is a huge thing when people really aren't sure what you wanted. And all these different relationships happen. And there are tensions because of dementia and what happened during that process. Yes, then this can be a very, very difficult time made more difficult, because nobody knew what was going on. And those emotions get really high.

Virginia  09:27

Yes, I have seen a lot of families that basically the siblings get along until someone has dementia. And then all these different opinions start flying through the air.

Susan  09:39

Yeah, yeah, it's true. So to to give that legacy to your loved ones have have peace and planning and to not leave them at that time of grief with feelings of more anxiety than grief already. Gives you and feelings of anger. I mean, you know, you're going to go through the grief process regardless. But there are so many things that you can help your family not have to deal with. If you sit down and say, No, this is what I want. And so you're taking care of them emotionally, yes. But the other half of that, too, is financially. I know, my parents wanted to make sure that things were set financially, so that when they left us that we wouldn't have to pull things out of our pockets, to do what we needed to do. So if you were to sit down and plan and put your wishes together, and everybody's clear, and then actually pay for it, and you can pay all at once, or you can actually do payments. And you know that maybe death is not imminent, it's down the road a bit. What you pay for today is at today's prices, and I know that might sound a little mercenary to some people, but it's really a loving thing to do. It's part of your financial plan. If you made a trust, if you made a will, if you made a financial plan, this should have been part of it. And if it wasn't, then that plan is not fully executed. Really . Yeah. Because you can pay today's price, you don't have to pay 20 years price from now. And leave your family with that kind of bill. And we've seen that, unfortunately,

Steve  11:34

a follow up question. So you're really talking about this, from the person who's passing, and they're a desire to get ahead and take care of these things. So there's not a problem, let's assume for the sake of discussion, that they're already suffering from dementia of some form or another, what's the caregivers role? And you know, let's talk about that a little bit from the perspective of, okay, I'm the caregiver, and Patti, in my case, we've talked about it, but we need to make sure we iron a couple of things, that's gonna be hard when you say if that person is really ill. So what would you recommend they do start a lot sooner than or,

Susan  12:14

you know, quite honestly, it's really never too soon to start, and this is irregardless of, of a disease process, or what if you're a young couple and you have kids, you should make sure that you start paying for your funeral plan now. I mean, it's really something that we should all do instead of waiting for the end. But most of us do wait later. And so you know, about the time people turn 60 is when it seems to start hitting those people who think about things like that. So you have somebody who is an Alzheimer's or dementia sufferer, and they've just been diagnosed, I'm just going to make up a scenario here, they've just been diagnosed. And so what you want to do is, while you still have more good days than bad, you want to make sure that that person maintains as much control over their own life as possible, because much is going to be taken from them. And so let's respect them sit down, and try and have this discussion as much as possible. As for the caregiver, if that had time has passed, then all that caregiver can do is, hopefully know what their loved one would have wanted. And they can make that plan. Now they don't have to wait till their loved one passes, which again, is going to be very traumatic, they're going to be exhausted, I know, half the time, they're already exhausted at whatever point they may be at, right. So what we want to do is we want to shortcut and short circuit, that anxiety, that exhaustion, you know, when you pre plan, you actually are able to cost compare with other places, if you had two different places you were thinking of going. Whenever you walk in to any type of funeral home, the legal part of things says that they have to give you a price list. So you can actually take that price list and compare apples to apples, because one property may be down near the beach, and it's going to be more expensive because land is more expensive. The other one might be inland and not be quite as expensive because land is not as expensive. I mean, these are considerations you might not realize. 

Virginia  14:45

Nobody likes to talk about the cost of funeral services, but it's a reality. 

Susan  14:50

You know, the average national cost of funerals is a little more than $9,000. Okay. And that's a very simple funeral and only goes up from there. Now, if you're looking at cremation, it can be less, you know, any detail. It's it's just going to be different relation  religion will play into that some religions do not account for cremation they do not accept that type of thing. Therefore a casketed service is going to cost more. So you want to plan for that, when you know that that happens, you know, there's just all different. So if you go to, if you have never fixed anything in your life, and your car breaks down, you're not going to sit out in the driveway and try and fix it yourself. Hopefully, even with YouTube, you're gonna go to a professional, you're not going to assume you know, all of these different things about all of these different things. Right. So that's what we would hope that people will start knowing to do is, let's go to a professional, let's really find out what's true, and what's not true. So we can get the right information to make the right decisions. Now, while we can still talk about it, hopefully

Virginia  16:09

none of this was fun. The legal documents aren't fun either. But they've got to be done. The advanced directives, financial power, medical power, those things have to be done. They're not fun, but they've really got to be done. So you're talking about the importance of getting the very, very final service. In order before we panic. I was I was thinking about all this since we've gotten into this topic. And, and one of the things I thought maybe a caregiver could do at one point, this is not business related. But one of the things is when the person with dementia is sitting with you, and you want to do something fun, go through photo albums, from their past, from when their grandkids were little, find wonderful photos, find the ones that they love, set them aside. I know because I did the photo montage for my mom's service. And of course, I had very little time to get it all together. But you know, you'd like to put music with it, and you and you want it to be full of wonderful photos when they had a great life. And that's something that can be started early. 

Susan  17:30

can be and also with with certain companies that do these things, they have a lot of help. With things like that. They can help you put together a video they can, they can put together a life story table where you just bring in a few pictures. And you don't have to do that montage yourself. Take all those photos out, get glue on the back of them, then try and figure out where they go back into your photo albums. I mean, there's this a lot of different things that can happen. Once you talk to that professional and start seeing what is available. Yes, you know, because you can do things as simple. Most places now have online obituaries. To do an obituary in a paper, depending on what you do. It can be upwards of $1,000. Most people don't realize that. And most people are fine with just an online obituary. Right? Most people don't know that you can go into your funeral director and talk to them and say, Look, this is my budget. And see that can happen when you're not grief stricken. Okay? You go in and say this is my budget, what can we do? Why would you not do that you do that with almost everything else you buy, you go into a car dealership and say, This is my budget, this is what I'm going to spend on my car. Same thing. And again, I I'm I'm wanting to break this down to practicality. There's a lot of emotion involved. And that's good. And that is another reason to pre plan like I said, because you can talk about all that. But the practicality too, is you know, when you break it down, it's it is what it is. We're all going to get there.

Virginia  19:17

We're all gonna get there. What do you do when there are huge family disagreements right in front of you? 

Susan  19:27

Well, that's really difficult. And you know, the only thing we can do at that point is try and deescalate and keep trying to bring that family around to the focus which is honoring that person's life. And sometimes it just gets ugly. You know it there's just nothing that you can do and people storm out and yeah, and like I said, there's so much you can do to short circuit that if you pre plan If you haven't had a chance to pre plan, you know, something just happens and it happens. Communication is always key. But I see I liked your suggestion of going through the photo albums, talking about the stories, writing down some of the stories that then can be shared at the memorial. That's lovely. And even if you're, my husband doesn't like to talk about this. And, you know, I'm like, we're gonna talk about it. And some people, you know, it's cultural. Some people say, if I talk about this, then it's going to happen. And to which I say it is eventually Yes, but not necessarily right now. So talking about it, not talking about it, that doesn't mean it's going to happen tomorrow. But eventually, we're all going to deal with

Virginia  20:50

that's, that's right. Tell tell us about the religious considerations or cultural considerations that are facing your industry when it comes to these services?

Susan  21:02

Well, you know, my company is very well versed in handling all all of the major religions. And it's important to know, for instance, with, like the Greek Orthodox, Jewish, Muslim, those religions do not allow for cremation. I think I mentioned that earlier. So of course, cost wise, you need to make that in your plan. Other religions are fine with cremation and therefore financially might be more desirable. You have things like spurting ashes at sea, or you have something like a niche where you can put a nice urn, or there's cremation gardens, where they're beautiful, they have a stream flowing through them. And they have these like, they're kind of fake rocks. And you can actually put a little plaque in them. And the cremains go below that. It's beautiful. And so and then you have the the traditional types of funerals. And then you have Hindu, Buddhist, Muslim, there's all kinds of different things that must happen with those particular religions as far as their burial and traditions go. So, you know, you want to find a place that understands you and your culture and your traditions.

Steve  22:23

You might say, you might say that's a good criteria that you might take into consideration is thinking about what are some of the religious connections or requirements that you're in terms of looking for, you know, a funeral planning organization company, is what knowledge do they have about that particular religion? 

Susan  22:42

Right? And do they, we live in a very trench transient world, right, we don't necessarily live near our loved ones so much anymore, we tend to move around a lot, maybe it's because of a job, maybe it's because now you have grandkids and you want to move closer to them. If there is a concern for anyone listening, that there may be a move, maybe once you know your loved one has passed, you might want to move to where your kids are, you know, type of thing. Well, you can still make arrangements. Now, with a company as long as you have research to make sure that they are a company that handles national that has national locations, because then you can transfer what you paid for, to that new place. So if you made arrangements in California, and then you move to Nashville, then you can transfer what you planned to that company's property in Nashville. It doesn't work if it's a small independent because they they usually don't have those kinds of agreements. But you can ask, again, that's the great thing about planning.

Virginia  23:58

Exactly, exactly. What mistakes should be avoided? Are there mistakes that you automatically think oh, we need? We need to get

Susan  24:11

would say assuming things, okay, just assuming that ABC is true, and XYZ is not and you know, again, talking to a professional so that you will not be assuming things. Another really common thing for those of you who may be veterans or whose loved one is a veteran. A common mistake or misconception is thinking I'm going to be buried for free. I don't have to worry about any of this. I'm a vet, the VA is going to take care of it. So that's only half true. What happens is the VA cemeteries will give a free plot, a plot liner, a marker, a very brief ceremony and a flag Okay.

Virginia  25:03

Okay,

Susan  25:04

what didnt I talk about there? The body? There are no mortuary services for these VA burials. That's just the cemetery.

Steve  25:16

So embalming? 

Susan  25:18

No, no, no. So whatever you're going to do with that body, whether it's a casket thing, whether it's cremation, whatever you're going to do, the VA does not do that. So it's not free. Really, people assume it is they assume it is because that part of it is and so they're transferring in their mind that it's all free. And so I'm here to tell you please don't do that to yourself, or your loved ones. Understand you still need to do some planning. Yes.

Virginia  25:50

Okay, we're heading toward the end of our podcast. Steve, would you like to add anything here?

Steve  25:55

Yeah, I think just given this topic, which is a tough topic, that's for sure. One of the things that's important to consider is, especially for someone who is suffering from dementia, or Alzheimer's is the power of the legacy that they can give by donating their brain.  It turns out that UCI mind happens to be one of the larger brain donor organizations in the world and ships, brain tissue all over. And so donating your brain can be a powerful way to leave a legacy of, you know, additional research that can be done and things like that. So I just wanted to mention that it's not a pleasant topic, because, hey, I'm not sure I want to do that. But it's something to think about, and certainly something that would be powerful for, for finding a cure.

Susan  26:50

That would be an amazing gift. Yes,

Virginia  26:52

it would be. Yes, it would be. I was just wondering if there's anything else you would like to add here, I would like to know what you think would be your best advice to caregivers of people with Alzheimer's or other dementia concerning end of life planning?

Susan  27:13

Well, I know plan is a four letter word, but it's not one of the bad ones. You know, with all my heart, I just really want the message to be, whenever possible. Sit down with your loved one, start talking about this, start writing things down and talk to a professional. It may not be the place you end up going to but at least start the process. Have your community of supporters around you, if you need a neighbor, a friend, your child, your brother, your sister, whoever, you know, if you can't go with your dementia sufferer, or maybe you just go with yourself and a friend or whatever. Because sometimes it's not appropriate, depending on what stage we're talking about, for them to accompany you. It might be too confusing or upsetting. So my, my message is, please do yourself a favor, plan as much as you can. I know, it may seem overwhelming, but just take one step at a time.

Steve  28:26

You know, that's really good. I was just thinking, you know, might be easy for a spouse to start thinking about that. But the hard part might be for kids, and we find that more and more adult children are starting to be the primary caregiver for their parents. And so this is, I think, a really important message for them to say, Okay, try and bring up a topic, you know, especially as this is going on early enough that you can get that feedback from your loved one from your parent, or your grandparent or your aunt or your uncle what might be because waiting till the end and hoping you remember what they might have said, Because spouse to spouse I think maybe more gets accomplished in that area. But adult children Yeah, maybe not.

Virginia  29:14

I never even thought about asking my mother what she would have wanted in her service. I think we nailed it. I feel when I look back on her service. I'm I'm very, very happy with it. And my brothers are as well  and we're lucky. Yeah. See? Yeah. Would have been smarter to do a little planning. Well,

Susan  29:35

I think to that, as much as the the children can be involved, it helps them start accepting things. But also, sometimes it helps the adult accept it when the child will come to them and say, you know, Mom, you said you don't care what happens to you, you're going to be gone. It doesn't matter, but it matters to me. And, and and it's really going to be hard for me To sit there when I'm grieving you, and trying to figure out what you would have wanted, can you please have this discussion and like I said, go to a funeral home, get a guide, they all have guides, some some way, shape, or form, and just start filling things out. You know, some people don't even know, what was your mom's maiden name? What was your grandparents name, you know, these things that you're going to need for the death certificate, which the funeral home will help you get. But it's so nice if you've got these things ready, beforehand. And then like I said, and sit down and let mom feeling control. Her her husband is leading her little by little, she's lost control of that. Maybe this would be therapeutic.

Steve  30:51

Oh, that's a great place to end.

Virginia  30:52

Absolutely true. Thank you so much, Susan. You gave us such good information.

Susan  30:57

Oh, thank you. I you know, I have a passion for this. 

Virginia  31:01

Well, and for our listeners today, please join us again soon for another episode of spotlight on care. And we thank you for listening.

Outro 31:13

Spotlight on care is produced by the University of California Irvine Institute on memory impairments and neurological disorders. UCI mind interviews focus on personal caregiving journeys, and may not represent the views of UCI mind. individuals concerned about cognitive disorders, prevention or treatment should seek expert diagnosis and care. Please subscribe to the spotlight on care podcast wherever you listen. For more information, visit mind.uci.edu