Hospice is one of the most misunderstood words in health care, and that confusion can leave dementia caregivers carrying fear and guilt they never needed to hold. We’re joined by Matt Wolf, hospice chaplain at Lightways Hospice and Serious Illness in Joliet, Illinois, for a real conversation about what chaplains actually do when families hit the hardest moments. Matt explains his guiding principle in plain terms: he doesn’t do as much as he “be,” showing up with calm, attention, and support when the right words don’t exist.
We talk about spirituality and end-of-life care without forcing neat answers. Matt shares why existential questions (Why is this happening? Why doesn’t faith erase fear?) are often a sign of honesty, not weakness, and why many patients open up more easily to someone outside the family. From there, we dig into the emotions caregivers know too well: anger that’s often rooted in fear, and guilt that shows up around starting hospice or not being present at the exact moment of death. We also touch on what families sometimes observe near the end of life, and how simple choices, like music and a peaceful room, can bring comfort.
Along the way, we clear up hospice misconceptions, including the idea that hospice means “tomorrow,” and we come back to what matters most: you should not have to walk through grief, dementia, and caregiving alone. If this conversation helps, subscribe, share it with someone who needs support, and leave a review so more caregivers can find Patty’s Place.
Welcome To Patty’s Place
SPEAKER_00
0:10
Welcome to Patty's Place, a place where we're going to talk about grief, dementia, and caregiving. I started this podcast in honor of my mom, Pat, who passed away from dementia about two and a half years ago. I'm your host, Lisa. So I want this to be a place where you can come and know that you are not alone. So grab your cup of tea, your cup of coffee. If you're having a really bad day, a glass of wine, come join us today. I'm very excited about our guest today. Our guest is Matt Wolf. He is the chaplain, the hospice chaplain at Lightways Hospice in Serious Illness here in Joliet, Illinois. So welcome, Matt.
SPEAKER_02
0:42
Thank you. And I am a chaplain. Oh, a chaplain. I'm the chaplain. We do have, I think Seth.
SPEAKER_00
0:48
Oh, okay.
How Matt Found Hospice Work
SPEAKER_00
0:49
Set. Well, so how did you become a hospice chaplain?
SPEAKER_02
0:55
I wish it was an exciting story, but the bottom line is I was working at at Riverside Hospital down in um in Kankiki. I still do some part-time work there. And my time with them had ended. They didn't have any full-time positions. So I I was looking and I just happened to find one of the chaplains who works here. I just happened to see him at, I think it was a church event. And he said, Hey, have you ever considered hospice? I said, Yeah, not real interested. But he pushed a little bit and said, They happen to be hiring. So if you want to make a call, I can set something up. So I did, and I did a little research, and here we are four years later.
SPEAKER_00
1:41
Okay. So for people who don't know, what does a hospice chaplain, what's their role?
What A Hospice Chaplain Does
SPEAKER_02
1:50
The role I always tell people it's to, if nothing else, to provide an extra layer of support. Now, what does that look like? It can look like many different things. Some people want some spiritual guidance. Some people like to ask the existential questions. You know, why does a loving God allow my mother to go through dementia? Some people just simply want company. I there was a guy I visited the other day, and he has ALS, and unfortunately, he can't verbalize. He just wanted someone to come and watch a few innings of the White Sox game. I didn't learn that in seminary, but that's something you do because that that's what we call just being present, being with the person. So a very short answer is I don't do as much as I be. Does that make sense?
SPEAKER_00
2:45
Yes. Yes. And and really the chaplain, too, isn't just for the person who has the illness. They're also for the caregiver as well. Yeah.
SPEAKER_02
2:56
I would think probably I would say probably more than the other disciplines, whether it's the nurse or the CNA, social worker, music, massage. I think the chaplain probably works more with family than they realize. It's because I'm not medical. I can't change a foliage. I can't really give you a great answer about medication and how to turn your loved one over if they have bed sores. Uh, you know, I can certainly give the information to the right person. But the fact of the matter is, and and I would, you know, like right before we started here, I'm I'm at our inpatient unit and Juliet, and I just happened to run into a family in the kitchen. And all I told them was, you know, one of the things we want to make sure of, no matter what our role here is, is to make sure that you are not walking through this alone. Period. And if if that's the only thing they remember from a chaplain visit, okay.
SPEAKER_00
3:56
Well, yeah, because you do feel very much alone when you're a caregiver, even when you're with other people. You it it is a very lonely road to walk with it.
SPEAKER_02
4:05
It is. And one thing I need to remember, and I have to remind myself is I can walk away from someone's home or wherever their facility is, and I go about my day. But and you know this, you don't. You you're you go about your day, which is the same thing it was before I walked in, and that's caring for, in your case, your mom.
SPEAKER_00
4:28
Right. Yeah.
Fear, Trust, And Being Heard
SPEAKER_00
4:30
And I'm sure as you mentioned before, like that you obviously you get that spirituality question all the time. But let's talk a little bit about spirituality and dying. So with let's start with the patient. Like, what how do you guide them, especially, you know, if they're they're scared or you know, I'm sure, like you said, you get all those existential questions.
SPEAKER_02
4:52
A lot of existential questions. And those are those are the best, those are my favorite kind of visits because that that but that that tells me that the patient is thinking and they're not trying to put on a front, like, oh, everything's fine. I got this. Well, no, everything's not fine, you know, and everything's not fine with the family, and that's okay. But I think for me, the number one rule is when I'm asked the next question, I just I can't answer it. And I'm not gonna pretend, you know, in other words, if someone says, Well, why does a loving God allow allow someone to die who didn't do anything wrong? It wouldn't be right for me to say, well, that's because your mom's still candy in third grade. You know, right, that's just not how it works. And what I have found more than anything else is that nine times out of ten, people are not looking for answers, they're just looking for someone to ask the question to. They're looking to talk with, not to. And I I affirm every question I get. Someone's I I had an initial visit with someone the other uh the other day, and I forget exactly what her diagnosis is. It's not dementia. She was very much with it. And the first thing she said to me was, Chapman, I'm I'm afraid of the future. That's what she said. That wasn't a question, but it was.
SPEAKER_00
6:14
Right. Right.
SPEAKER_02
6:16
So I so what I did, I just repeated her. I said, You're afraid of the future. I said, I am too, at times. It's scary to live in the unknown. And no, you know, I didn't give her an actual response, but she knew that I was listening and she knew that I cared about what she said. And that because that was at the beginning of the visit, the rest of the visit was very smooth. And it is you establish trust that way.
SPEAKER_00
6:41
Yeah, like you said, because sometimes they just want because I I would think it's probably um you probably see a lot of different family dynamics, and sometimes the person who's ill can't have those conversations with family members sometimes.
SPEAKER_02
6:57
Exactly, or they just don't want to. Right. It it's kind of like the the kid in school is gonna give the teacher a much different answer than they would give their parent. Because it's there's a different level of trust. And I understand that. Listen, if I were if I were in a situation where I was terminally ill or seriously ill, I would feel much better, much more comfortable talking to someone who was not in my direct family about life, death, dying, pain, isolation, meaning than I would my daughter or my wife.
SPEAKER_01
7:32
You know, they've got they got enough to worry about. Right.
Anger As Grief In Disguise
SPEAKER_00
7:41
I'm sure you have to sometimes anger comes up, whether it's with the patient or the caregiver. So how are some ways that people can deal with that anger? It could be towards God, towards life, the universe, but you know all of the above.
SPEAKER_02
8:00
Yes, and and you know, anger, anger in and of itself is not an awful thing. It it's a secondary emotion, and it's always, and I look, I get angry about things too. We all do, but what's behind the anger? Is it shame? Is it guilt? Is it sadness? Is it just fear? And a lot of anger is fear-based and kind of goes back to what I said earlier. A lot of people are afraid of the unknown. Even if we're staunch Christian, staunch believers, or whatever your background is, and our faith tells us, well, we're gonna go to a better place, that that's all well and good, but it doesn't always take away the fear in the here and now. So to answer your question, I don't I will never try to stifle someone's anger. You know, I'll affirm it, I'll validate it. Now, obviously, if it gets to the point where it's it can get a little violent or people are starting to drop four-letter words or screaming at other, you know, about other team members, okay, maybe we need to come to some sort of a solution. But as far as questioning God and saying this isn't fair, no, it's not fair. It's not fair that your mom had dementia. It's not fair that the person I saw today is you know in their 50s and has stage four pancreatic. It's not fair.
SPEAKER_00
9:20
No, it is, it isn't. It isn't. And you know, it doesn't, I know people mean well when they're like, well, you know, that means that they accomplished everything and you know, God's calling them home and all that. It doesn't really give the family member the comfort that you think it does because you think you're just like, but they're not here, you know, why them?
SPEAKER_02
9:40
Yeah, yeah, exactly. And and you're right, people do mean well. It it's I I understand that, and you know, I've said things I probably shouldn't have said too in those situations, but do they always bring real comfort to a family? Probably not, and and that's why sometimes less is more. And as as one, a lot of chaplains, if not most of them, are former church ministers or at least speakers somewhere, and you know, we're taught to just to speak, to preach, to flesh out scripture and to get up there in the pulpit and talk for 25 to 45 minutes. But now it completely turns. It's about listening and respecting your pulpit, not pretending that I'm the expert.
SPEAKER_00
10:25
What would you would you give that advice to some if you were giving advice to family members to really to step out of their grief in that moment and try to listen to the person who's who's who's dying?
SPEAKER_02
10:40
Yeah, I mean, yeah, I I don't I try not to advise as much as well, right softly suggest.
SPEAKER_00
10:46
There you go, softly suggest.
SPEAKER_02
10:48
Well, I but sometimes people do ask. And I mean not not all the time. And and again, a lot of that has to do with trust, and that's why it's important if I can and if the family wants to get into their into their uh either their house or their facility multiple times just so you can learn how to read the room. You can learn a little bit about the family. But I more times than not, the family members are angrier or have a more vitriolic reaction than the patient themselves. Yes. I'll I will never forget that there's a guy in his 40s, relatively young guy, and uh he he was dying, he knew he was dying, and he had a he had a wife and two relatively young kids, and and he just said to me, He's like, Listen, I I have the easy part. And I was thinking, like, well, and then it made sense. He's like, Listen, I'm gonna go, I'm not gonna have to deal with pain anymore. But they are that's a hundred percent right. Yeah, which is why, as we were talking about before we started, the bereavement aspect is so important.
SPEAKER_00
11:58
Yes.
Spirituality, Community, And Grief
SPEAKER_00
11:59
And speaking of that, uh w what kind of role does spirituality play in grief, would you say?
SPEAKER_02
12:07
In grief? I think I think our relationship rather than religion, our relationship with whatever our higher power is for me, it's God. As if I can be open, if if I'm grieving, or you're grieving, if we can be open with God, if we can shake our fists, so to speak, and not fear any retribution, I think that's good. I think that's healthy in grief, because as you know and many know, there's really no right way to grieve. Right. And there's there's ups, there's downs. And some days you feel awesome, and other days you turn on the radio and you you'll hear a song that reminds you of mom, and then it's you're not gonna have a great moment there. And that's okay too. But for for me, as far as the spiritual aspect, spirituality is it can be communal. And some people rely on their church family or synagogue family or or mosque family, and that can be really, really helpful. But even not, even if you do not belong to an organized religion, if you want to call it that, there's always people in your path. There's always people that God puts in your path, I believe, at the right time for the right reason. And whether that's while you are going through the anticipatory grief before your loved one dies, or maybe afterwards, there's always people, I think. There's going to be people that God puts in our lives to help help soften the blow and just to be someone to talk to.
SPEAKER_00
13:46
I would agree with that. And that you have to you have to be you have to be open to it. You know, you might not realize at the time, but if you can be open to it, then you can kind of get that help a little bit. Or like you said, sometimes it's just a conversation somebody you have with somebody and it just made you feel better in that moment.
SPEAKER_02
14:05
Yeah, and especially if it's someone who has been through what you've been through, and and not to say that they're because every situation is different. We could have 10 people who have lost mothers to dementia or children, heaven forbid, with cancer, but they're all gonna grieve differently, and the situation and the context are gonna be different. So to say I know how you feel, that that's not helpful. But to say, hey, I've been through this too, I can talk to you if you want, or I can listen to you better yet, if you want. I think uh there there is a certain power in numbers when it comes to grief, because grieving alone is hard. Going through any type of of illness alone, I can't imagine life is hard enough when you're healthy going through it alone. So we we need we need support, all of us.
SPEAKER_00
14:59
Oh, definitely. Um, and I've said before, like hospice not only helped my mom, but helped me as well, too, with all the services and stuff. I still go, you know, as a matter of fact, um Lightways has a parent loss group that I was at last night, which is just it it's very nice. It's a very, you know, it's just nice it in any of the events too that uh lightways has, you just don't feel alone when you go there. It is crazy as it sounds, you feel better when you leave because you you you bond with knowing that, yeah, they they have the same feelings that you do, even if the situations are different with it.
SPEAKER_02
15:38
Yeah, you know, loss is the great equalizer. You know, we we can all put on a front, but we we're all in other words, no no one no one's gonna walk out of here without grieving.
SPEAKER_00
15:47
Right.
SPEAKER_02
15:48
It's it's not possible.
SPEAKER_00
15:50
No, it isn't.
Signs Near The End Of Life
SPEAKER_00
15:52
Then out of curiosity, have you um ever seen or experienced any stories of like people when they are dying? Like, do they see angels or family members or things like that?
SPEAKER_02
16:04
But someone asked me that same question yesterday. Did they no, she did. I mean, but this is a this is a patient of a of a loved one, and she's saying, What's gonna happen? And I don't know if she was again, this goes back to her point. I don't know if she was looking for an answer. Right. She said, Hey, when how am I gonna know when mom is dying? Are there gonna be angels in the room that come get her? And then again, I don't know the answer. However, right, it's very real that maybe her mom or whoever the patient is will experience something in the room that I don't or you don't. That I would never discount. Yeah, when when patients are are are at the end, or kind of at the end of their time, yes, you see them reaching out a lot, at least I do. And I wholeheartedly believe that their reality is a little bit different from ours, and it's different than it was a couple years ago for them when they were healthy. And I think it's totally normal. And it's very, especially in hospice. Now, this is much different than if someone is gets caught in a horrible accident and is dying in front of you. But in hospice, you know, if we're doing our job, then the person who is dying is comfortable, and it's a very peaceful death, and there's no struggle. And that to me is very spiritual because everybody, you know, we we in America we hate to talk about death and dying, it's just not fun dinner conversation.
SPEAKER_00
17:34
Yes, yes, we do. But we're all gonna die.
SPEAKER_02
17:36
And why not, if you have the opportunity, why not do it peacefully? And to me, uh, it gives the family so much so much peace, knowing that, hey, yes, it's awful. I just lost my loved one. But she went peacefully, and I I can live with myself the rest of my life knowing that she did not suffer in the last hours, minutes of her life.
SPEAKER_00
18:04
And I will say, for me, my mom did, she said, you know, she she thought she saw her brother, she thought she saw her mom. And I swear, I think that she saw some of our dogs because she kept like going like this, like she was batting. And I was like, who's there? You know, like and I just went with her, you know. So I think I think that's why she showed me that more. I I can't say if she did if my dad noticed that or not, but I was kind of open to it with it, and that actually did bring me peace because I was like, I I knew she was seeing them, and I completely believe she did, you know.
SPEAKER_02
18:44
I I would totally can yeah, I can't confirm it. If I would affirm it, I think that makes total sense, and you know, none of us are gonna know for sure until we're in that exactly, but but that that gives me peace, you know, and and right now my my family for the most part is not ill, they're pretty healthy. But if and when it gets to the point where they're nearing the end, okay, I I will firmly believe that yes, they're they're experiencing some peace that we've seen here.
SPEAKER_00
19:14
Yeah, I mean, because it and it is hard though to see it. So, like uh from a caregiver point of view, again, that becomes something to be open and to be able to give that person who's dying that that space, that opportunity to to do that in front of you, you know, because I think they sense you know, yeah, and and as I think we've discussed before, the you know, your mom, for instance, knew you were in the room at that time.
SPEAKER_02
19:48
And and I I I I believe this also, if if I am in someone's room as they're dying, but also their family members are, they can kind of differentiate. Okay, this guy's voice is not the same as theirs, his aura is not the same as and in other words, hearing as we say is the last scene to go. I I fully believe that uh the man or woman who is dying is fully aware of who is in that room.
SPEAKER_00
20:18
Well, that can give me comfort.
SPEAKER_02
20:20
So I I yeah, absolutely.
SPEAKER_00
20:23
You know, and as a matter of fact, I uh well, my mom picked out all her songs for her service way before she got sick, you know.
SPEAKER_01
20:31
Sure, remember?
SPEAKER_00
20:33
Yes, her her bury manilow and her Barbara Streisand and all that. Her burying manilow, you know. So I played a lot of that music that I knew she liked, you know, during that last week because I thought, well, that could bring her comfort too, because she loved it, you know, with that.
SPEAKER_02
20:48
Music is a huge, I mean, this is a different podcast altogether, but music is a huge, huge conduit for those who are experienced near death and to those who are dead and and or dying, and and it's such a spiritual, there's so much spirituality in music, in music therapy. Um, again, that that's not the point of this particular chat, but it's it's there's a reason that we have music therapists and also oh yeah, yeah.
SPEAKER_00
21:17
I mean it really is, it's amazing what it does.
Caregiver Self-Care That Counts
SPEAKER_00
21:20
So what kind of advice would you give a caregiver like to help ease and make it more peaceful, not just for the patient, but for themselves too?
SPEAKER_02
21:32
Self-care, you know. I I I'm never gonna tell someone you need to do this, you need to go outside and get a sandwich, you need to go walk around. But, you know, try try to reframe it in a way that, hey, listen, you know, every caregiver needs a caregiver. And if you're not taking and it again, it's easier said than done. Yeah, you know that. Right. But if if if if you're not taking care of yourself, you're not really gonna be much help for your loved one. And even if that means, you know what, find someone to watch mom or dad or whoever just for a half hour, go outside, get some exercise, drive around, I don't know, take a nap, which is why we we do have volunteers here at lightways. But it that that to me is the number one thing. And the number two is probably always I always try to remind people do not judge your emotions. That actually might be number one. Because as you know, there's there's gonna be plenty of emotions. And when we're not sleeping, it messes with our physical well-being, our emotional well-being, our mental well-being. And that whole piece, that that whole puzzle comes together in pieces that are not great for our loved one if we're not if we're not at least a little bit taking care of ourselves. I'm not saying, you know, go on a diet and eat only salads, but you know, just be aware that you're this is a physical grind. And most people know. Most people know that they just it's almost like they just need someone who they don't really know to get permission.
SPEAKER_00
23:15
Yeah. Oh, okay.
SPEAKER_02
23:17
Chaplan said it's okay. I'm gonna go do that.
SPEAKER_00
23:21
Well, um the other thing that comes up besides anger, too, I would say, is probably guilt.
Guilt, Hospice, And Letting Go
SPEAKER_02
23:27
Yeah.
SPEAKER_00
23:28
Yeah. So what can a caregiver, you know, when they just they feel guilty, like maybe they didn't do enough, they didn't take care of their loved one enough.
SPEAKER_02
23:38
Well, it's interesting when every now and again I'll go on um an admission visit, which is what it sounds like. I'm sure you had to be on one when mom was um admitted into our services. You know, for for me, it's almost like when the the POA or whoever in the family is at that meeting and they sign a piece of paper saying, Okay, I'm giving you consent to begin hospice. Not that it's a binding contract or anything, but once you once you put your your name down, it's like, oh my, what did I just do? And am I giving up on my loved one? And I know, you know, the answer, you're not giving up, you're letting go. There is a big difference. But again, like with any other emotion, I I will validate it. I I don't agree that you should feel guilty, but I also don't want to tell you how to feel. In other words, if that's how you feel, okay, let's work with that. And furthermore, the the other guilt I actually see or hear about more than that is oh my goodness, I wasn't there when mom died. How can I forgive myself? Well, you know, maybe mom didn't want you there when she died, and I don't mean it negatively, but it's very possible that, and we see it here in the impatient unit a lot. Sometimes people just want to be alone. Other times they don't, and honestly, we don't always have that answer. But um, yeah, you know, there was a guy who who who I remember he was always with his, I think it was his mom, always. And I think she died when he had to go to the restroom, and that was it in that 30 seconds or whatever. And you know, he still beats himself up about it. And that's a shame. It is.
SPEAKER_00
25:24
Well, I know that uh, I mean, I was there with my mom. However, uh sometimes a couple people have asked me, like, did I know the exact time? I don't because I she I her breathing was starting to go, you know, I could tell it was changing and everything. And I like had woke up and I I could still hear her. And then I could close my eyes for a little bit again, and then like the next time when I woke up and I was literally like right there, I didn't hear I didn't hear her. And then, you know, I had to go get the nurse because she was in memory care and everything. Right. But in the back of my mind, I thought she didn't want me to hear her last breath. I I just I could see that of my mom, you know.
SPEAKER_02
26:07
I could know that and I that totally makes sense.
SPEAKER_00
26:11
You know, I could see her sparing me that because she I remember her telling me about when my grandma, her mom, she had pancreatic cancer, and she always would talk about like the death rattle and that kind of stuff. And um, and she would tell me that my grandma smelled roses before she went to the diabetic coma. And when the one day my my mom said she smelled roses one day, and she and I was like, uh-oh. I was like, because I remember that. I was like, oh, okay, you know, association. Yeah.
SPEAKER_02
26:43
But it's but but getting back to your original question about feeling guilt in the just by placing someone on hospice, that's why it's important to have a good team to help educate the caregivers, whether it's the chaplain, the social worker, the nurse, CNA. You know, we we've seen this so many times. We've had so many patients, and you are not the first person to sign a consent form, you're not gonna be the last.
SPEAKER_00
27:14
I think there's so many misconceptions about hospice.
Hospice Myths And Living Fully
SPEAKER_00
27:18
You know, yeah, so many people think, oh, well, you well, my mom used to always say it used to make her so mad. She used to say that when people, you know, were sick or they had cancer and it was, you know, towards the end, she used to say that they didn't give up, their body gave out, that there's a difference in with that uh you know give up, body gave out.
SPEAKER_02
27:39
Yeah, I like that.
SPEAKER_00
27:40
Yeah, and you're not bringing hospices, you're not giving up, and it doesn't mean it's right at the end. You know, I was amazed at all the services um that are out there for it. Um Right.
SPEAKER_02
27:55
It's letting letting go is not the same as giving up. Giving up kind of points to, well, I'm quitting or I'm not following through on something. Listen, if if a medical doctor who knows what they're doing tells you, listen, there's nothing we can do at this point.
SPEAKER_00
28:11
Right.
SPEAKER_02
28:11
Well then all that of your core you can't, you're not giving up at that point. You say, okay.
unknown
28:16
Right.
SPEAKER_02
28:17
Let's let's focus on quality. And the whole quality versus quantity debate, that's that's also valid, but you know, so many people, by the time you start your hospice journey, okay. How can I make how can I find meaning, value, and joy in however much time I have left? Which, by the way, is a good exercise for any of us. True. We're ill or not. How do I find meaning and value? And that's another that's another duty of a hospice chaplain, in my opinion. And and it's challenging because if someone's sitting in a bed all day and they can't really move, their conception of joy and value can be a lot different than it was five years ago.
SPEAKER_00
28:59
Oh, right.
SPEAKER_02
29:00
So how do we reach how do we reframe that? How do we change, how do we move the goalposts, so to speak? And um, you know, I'm here for that, I'm here to help.
SPEAKER_00
29:09
Well, yeah, you know, and if there's some things that they still want to do or say or that, and it becomes so hard with all you know, different family dynamics and that with it.
SPEAKER_02
29:18
That's another story altogether. Yeah, absolutely. Yeah, it it a serious illness can really bring out it can bring out the best, it can bring out the worst in families, and we've seen plenty of examples of both.
SPEAKER_00
29:33
Oh, I'm sure you have.
SPEAKER_02
29:37
Yeah, I'll just leave it at least.
SPEAKER_00
29:39
Yeah, I mean, it's just so it's just not easy with it.
SPEAKER_02
29:45
No, it's absolutely not easy.
SPEAKER_00
29:47
Yeah, so so what other misconceptions would you say people have about hospice then?
SPEAKER_02
29:55
We're the death squad.
SPEAKER_00
29:58
Okay.
SPEAKER_02
29:59
If you ever want to if you if you ever really want to freak someone out, go to a hospital ER and announce yourself as a chaplain, but that's another story. Um that's not hospice.
SPEAKER_00
30:11
But yeah.
SPEAKER_02
30:11
I think that the yeah, the mis the misconception, and and this is why I struggle a little bit when when people are given, well, uh an exact number. Like, well, mom has anywhere between seven and nine days left. Right.
SPEAKER_00
30:28
Right.
SPEAKER_02
30:28
Now, for Medicare purposes, we we've got to assume that it's six months or less. Now right. We have to. I I've got I've had plenty, I don't remember the exact uh amount of time that mom was with us. I think it was more than six months, right?
SPEAKER_00
30:40
So no, actually, it was she came in in September and she passed the beginning of January.
SPEAKER_02
30:46
Really? It was only four months. Okay. Right. Well then some examples look, I I've had people in in our care since I started in 2022. You just you never know.
SPEAKER_00
30:58
Right, you don't know.
SPEAKER_02
30:59
So I think anyway, to to your question, one of the misconceptions is okay, I just started hospice, that means they're gonna die tomorrow. And and you could still, we don't see it a whole lot, but some people, if they're if they're well enough while they're under our care, can go, they can leave, they can go to Wisconsin and go visit their friends. I had someone go to Mardi Gras. And now we had to we had to contact one of the hospice places in New Orleans just to make sure. But you can do that. I had another patient go to a concert at Soldier Field. Obviously, it's not the same as it was before, but it's still you're still living, you're still able to, at least in part, live your life. And that goes back to the meaning, value, and joy.
SPEAKER_00
31:48
Yes, yes, with it all. Um well, I would definitely I I tell everybody that if if you get to that point, you should bring hospice in because you have so many uh resources, not just for the patient, but for the caregiver. And you always forget as a caregiver that you do need help too with it.
SPEAKER_02
32:08
Yeah, you know, there's that every time I drive home on 80, there's that big billboard that says it's okay not to be okay. I don't know if you've seen that. And um, it's a good reminder. Right. You know, it and and and I I don't know if I said this earlier or or maybe I said it to someone else today, but I I I worry a lot more about the caregivers who pre who tell me that everything's fine, there's nothing wrong, than the ones who say, I am really struggling, I'm having a terrible day, I'm pulling my hair out. At least you're being honest.
unknown
32:40
Yeah.
SPEAKER_02
32:41
You can respect that.
SPEAKER_00
32:42
Yeah, it it's okay to not be okay. It's hard. It's hard, but absolutely.
SPEAKER_02
32:47
And sometimes, look, sometimes you you do need to kind of reach down and be maybe a little stronger. I don't like to use that word, then maybe you want to be, even if it's just in that moment, if there's other people in your family who are really breaking down, maybe you need to kind of at that time become a little bit more firm or just a little bit more stoic for lack of a better. That doesn't mean you don't break down later. You know, as long again, as long as you give yourself time to experience all the emotions, that's all you can do.
SPEAKER_00
33:22
Yeah, I I just think that yeah, I think that's very important that we need to feel the feelings because you're not gonna run away from them even if you think that you are.
SPEAKER_02
33:34
Well, you can run away from them, but you're not gonna hide from them.
SPEAKER_00
33:37
That's right. You won't hide from them at all.
SPEAKER_02
33:40
Yeah, so someone someone told me once if you don't if you don't respect your feelings, they're gonna come out sideways. And that's when you get to anger, and that's another story altogether.
SPEAKER_00
33:52
Yeah, that's when it gets really crazy. Yeah, yes, yes. But um, yeah, I mean I I well, and you did my mom's service too, so that was it was very much her, and I was very happy with that before it.
SPEAKER_02
34:08
Yeah, that was um that was one of the coldest days I can remember. Yes, it was. I'm guessing it was sometime in January.
SPEAKER_00
34:15
It was January, yeah.
SPEAKER_02
34:16
Yeah, um, yes, and you you and dad and everybody else involved did a did a great job just really remembering, celebrating her life, and yeah, you know, that's you and and and many others, you know, really yeah it's not not that you want hospice as part of your life, but you embraced it. You embraced the fact that okay, mom's not coming back from this. It stinks, it's unfortunate, it's not fair. So what do we do to honor her life the best we can in these last four months? And you did that.
SPEAKER_00
34:54
Yeah. You know, well, I just wanted to do what was best for her, which is hard, you know. I just want her to have peace.
SPEAKER_02
35:03
It's really hard with someone uh with dementia or Alzheimer's or any of the cerebrovascular diseases because unless you talked about this way ahead of time, you're not 100% sure what is right because you're not getting that validation from mom.
SPEAKER_00
35:19
Well, you know, my mom told me long before she got sick what she wanted for her service and for all of that.
Planning Goodbyes With Humor
SPEAKER_00
35:25
Okay. Oh, yeah. Well, she she used to say that she was gonna be it was gonna be by invitation only.
SPEAKER_02
35:30
By invitation.
SPEAKER_00
35:32
She used to say, because if they didn't talk to me and didn't like me when I was alive, they don't they shouldn't be coming to see me when I'm dead. That's what she's saying.
SPEAKER_01
35:41
You tell them that. That's right.
SPEAKER_00
35:43
And I was like, Mom, what am I supposed to do if they're not on the list? She's like, Well, I don't care because I'll be dead.
SPEAKER_02
35:48
She was like, Yeah, she's not gonna have much of a say in that.
SPEAKER_00
35:52
Yeah, and then she was like, Don't you dare have an open casket. I don't want anyone looking at me. That's why I I was very careful about what pictures we had with it. Oh, yeah, okay, because then she decided she was gonna be cremated because why spend all that money on the casket and all that? So she's like, do that.
SPEAKER_02
36:09
And then I had to be careful, it isn't it's not cheap.
SPEAKER_00
36:13
No, so she I had to be careful with the pictures that I chose because she didn't like her picture taken either. So she excellent, yeah. So well, thank you so much for joining us, Matt.
SPEAKER_02
36:26
Amen.
SPEAKER_00
36:27
Yes, so we'll tell people Yeah, thank you.
SPEAKER_02
36:30
Thanks for having me. I your your show is great, and I wish you continued success.
SPEAKER_00
36:35
Well, thank you. Thank you very much. So I hope everyone has enjoyed this episode of Patty's Place. Hope you enjoyed your cup of coffee, your cup of tea, or if you're having that really bad day, that glass of wine. And just remember, you are not alone right here. And make sure you subscribe to our YouTube channel, leave us a review, and we will catch you next time on another edition of Patty's
You’re Not Alone, Closing Notes
SPEAKER_00
36:55
Place.
