The Long Goodbye: 15 Years of Loving My Husband Through Dementia

Mary: 0:00

We knew that this was the end, and this is what we told

our kids: 0:02

it's time to spend some time with Dad. We're probably in our last week, everybody feeling very comfortable to come in and sit on Dan's bed, to pray, to talk, to have their own time. It was absolutely the best, but looking at Dan and seeing a tear come down from his eye, I just knew that Dan is, was it's hard to even talk. It was so hard to see him with dementia, and I knew he was going home, and I knew all of us were gonna find peace.

Barbara Hament: 0:46

Hello, and welcome to Season Four of Dementia Discussions. I would really like to take a moment to thank the guests who were on this past year, and to thank you, the listener. I really could not do this show without you, and over the past couple of years, some of you have called me, so I am encouraging more of you to pick up the phone and call me. I'm accessible, and I'm so eager to hear your story. I'm at 310-362-8232 or you can email me at Dementia discussions.net So again, thank you. I'm grateful for you, and so looking forward to another year of us being together. Hello, and welcome to Dementia Discussions, the podcast for and about caregivers. Today on my show, my guest is such a lovely woman. I'm so pleased to have her, Mary from my Dementia with Lewy body support group through the UCLA Mary S Easton Center is here to talk, and I'm so glad. Mary, welcome to the show. It's great to have you.

Unknown: 2:08

Thank you, Barbara. It's been a long time waiting for this podcast to work with me and my schedule, and now we're finally here.

Barbara Hament: 2:18

We're finally here. So, thank you for that. I appreciate you making time. So, you've been in group now for at least three years, and you've been coming faithfully, and have really bonded with the other members in the group. And I never met your husband, I never met Dan. So, maybe tell us a little bit about Dan. Well, what I can say about Dan, that I was caregiving for, we were married for just short of 45 years, but I need to give the little history of how our family grew from seven to 22 grandchildren. Oh my gosh,

Unknown: 3:00

we both had a daughter and a son from a previous 10 year marriage, but with Dan, I fell in love with his funny, funny sense of humor. I loved his stories. I loved how he saw everything in a funny way, because my brain doesn't do that. So, you were both divorced from your first marriages, we were both divorced, and then we had two more boys, and ultimately when our older children left home for college and marriage, there were extra bedrooms, and so I just love being a stay-at-home mom, and we did foster care, so our first placement was a baby boy, fetal drug and alcohol, left abandoned at the hospital, and we named David almost a year later, his sister, a two year old, living on the streets and the valley was placed with us the following year. We got a call, birth mom had another baby abandoned at the hospital. We picked him up in hopes to keep them all together, and I remember looking at Den and said, Do you feel okay? And he said, I think you'll want to keep all these kids. We had yours, mine, ours, and theirs. So we adopted David, and because with special needs, he can never live alone. He lives with me, and he's 33 My daughter adopted his brother and sister.

Barbara Hament: 4:46

Oh my gosh,

Unknown: 4:47

so we got to keep them all together, just a family within a family.

Barbara Hament: 4:53

That's unbelievable. Wow, I don't think I knew that whole story.

Unknown: 4:57

I don't think I usually talk about it, because there's so. Should talk about on

Barbara Hament: 5:01

so much to unpack there,

Unknown: 5:03

you're getting precious time, and just letting everybody share,

Barbara Hament: 5:08

yeah, in group that we don't get into individual stories like that. Wow, okay, so you, so how old are your kids, your sons together? When David comes into your family,

Unknown: 5:20

they were just 10 and 11, now they're 43 and 44

Barbara Hament: 5:26

So all of these children in your life, and they grow up. Dennis sounds like a successful businessman, and you're able to stay home, stay at home mom. And then then

Unknown: 5:39

it comes where his diagnosis came, and Den had mixed dementia, but it took many years to get a diagnosis, and in 2021 Den was diagnosed with vascular dementia. In 23 he was diagnosed with Lewy body dementia, and 25 he exhibited FTD, frontal temporal dementia.

Barbara Hament: 6:13

Really,

Unknown: 6:15

yeah, I'll get it.

Barbara Hament: 6:16

So, what was happening before all of these diagnoses? Like, what sorts of behaviors.

Unknown: 6:21

The first time I remember seeing Den's behavior was different is when Den, David, and I went to Hawaii together in 2010 Maybe because we were away from home, it was more evident to me, but he had fluctuations of moods. He got real mean, and then he'd be back to being den, and then when we were out on the beach, he fell three times on the rocks, and I was down by the water helping David get on a body board, and a stranger had to help Den get up from the rocks, and I'm going, what is wrong? Why couldn't he get up? Den is very strong and able-bodied, but this was one, is like, okay, a fall, but two and three, some something I did, I didn't understand, so but then we get to 2011 and we were at Catalina Island again, David Den and I, and again Den had this fluctuation of moods, he'd get real mean, and he'd go right back to being den, and that's when I decided this would be the last trip the three of us would take again, and it was. I never did that in 2015 Our son Michael, after college, worked for his dad. He said he wouldn't work for him any longer, as time he saw Den's fluctuation of moods, and so Michael bought Den's business in October that year. Den wasn't really ready to give up, but neither of them could work together, so Den just retired and let him buy it,

Barbara Hament: 8:07

and so, like, short-tempered, really irritable,

Unknown: 8:12

they would disagree, because Michael has a different business mind, it's the mind of today, we are, he works, he makes websites that he created back in 2015 when they weren't really popular, and he would make it for his dad's business. He knew the computer; his dad didn't really use the computer much. He was the paper - everything had to be copied in piles of paper, type of thing. And Michael says, 'Oh my gosh, he sits there and does absolutely nothing really during the day, shuffling papers. And then they had their disagreements, and because Dan was the owner, he would tell Michael to go home. Think about it, because Michael just said,'I have a family to feed. I'm not gonna sit around and wait for me to be fired. So he offered to buy it, but then that led Den into just being at home. He would sit and watch news 24/7 on the couch, and he had no outside interest, no matter what I could ask him, because I had my family still running, I had, you know, like the boys, although they were older now, and college, I still had David, and David, with all of his needs of being homeschooled part of the day and going to school,

Barbara Hament: 9:40

and then part of the day schooled elsewhere.

Unknown: 9:43

Yes, and he would, he would get tutoring, and then I would go back home and homeschool him with what he was tutored, but school was for social. So, anyways, it goes to the point that my family finally got done to see a neurologist, and he got an. MRI and cognitive testing, and he said that Den had arteriosclerosis of the brain. So we walked out the office that day. I said nothing as we drove home. Then Den broke the silence. He said the doctor didn't say I had dementia. You want me to have dementia? Den never went back to that neurologist, and for the net, you know, from 21 to 23 which I'll talk about, there was no neurologist, no medication, it was just escalating what was going on with him, that his moods and meanness was, he didn't exhibit that usually with me, and it was there with no filter anymore, and it was towards David. Is that right? Add me, both of us, we were both the target, so I would protect David in a way that I would just say, David, walk away, you know. Right now, it's best we don't argue with Dad. That's what we have to do. But David never understood dementia, and as I was doing the homework, and I started my research, I used to do that with David when I had to learn about his seizures and his disability and how to get him to the highest level as an adult, so it was easy for me to go online and just start searching, and that brought the challenges that I could really speak to probably three of them right now with the time we have. What I found was never told to me by a doctor. Interesting, Dan firmly believed there was nothing wrong with him. So, I found in doing my homework research, it's called Anna Sinosa. Am I saying that right?

Barbara Hament: 11:52

I think so. That's as good as I can say

Unknown: 11:55

it. It's being that neurological disorder which a person with dementia is unaware of their own cognitive decline, physical or mental,

Barbara Hament: 12:06

and we hear it all the time in group, right? Don't we hear about that? Yes, so common

Unknown: 12:13

it is more common than I found. It said 10% but I think it's way, way, way higher. So it was hard for me, these challenges, but how I dealt with them is I would just have to remain calm, that's my personality anyways, and peaceful. So I would walk away from Denzieger to avoid getting a pressure headache from him. I never had headaches, but boy, I thought, how do I get out of these? I'm living with these headaches that are good for me, because I know I'll go down with it.

Barbara Hament: 12:49

And was he yelling at, like, what was there triggers for his anger?

Unknown: 12:55

No, it didn't really actually take a trigger. I think it was the overall part that he was not able to do the bills, and he thought I was taking away his power by helping him, and eventually he crashed his computer twice. I didn't want him on my computer, and that was making him mad, because David might go on and look at something, and I would let David, because he knew things that he would look at his schedule, what's coming up with this program, or something, but that made Den mad, and I said, Den, I can't have you on my computer, you know, I got him an iPad, but he couldn't operate that, he couldn't figure it out, how to even do the TV, because it takes a couple of clicks here to get to the program he wanted to see, his world was falling apart, but he, again, he didn't think anything's wrong with him, he just thought you are going to take away everything I had, all my power that I gladly let him do the bills, I had to learn that. Thank goodness I did, but he didn't like the way that I started taking charge of the bills and putting them on my computer, so I could follow him, because I'd get a bill and it's overdue, and I said, Dan, this is a bill that came to you, and it wasn't paid, and he looked at it, and he's confused. He says,'We don't owe those HOA bills, they don't do anything for us. Oh my goodness, so again his escalating anger with me was growing. My protection of David he resented, and anyways, in the summer of 2023 Den fell down the entire flight of stairs at a front. Saturday night dinner, we were having. Nobody saw it, but we heard the crash. He landed upside down with his head down at the bottom of the stairs, his feet up, and he was seizing and unconscious.

Barbara Hament: 15:13

Oh my goodness.

Unknown: 15:15

Luckily, he's strong, and he just had some broken or cracked ribs, fractured eye, whatever. He was very tolerant of pain, so thank goodness. But I found a neurologist again, because I had to follow that up, and he really liked this neurologist, and so we started seeing him, and he had a dementia care clinic, so that's how we became really in sync of help that Den accepted listening to him. So it came to the time that after that fall he no longer drove, and that was a problem because he was fine. He didn't say anything wrong, and I'm sure you know that he could have gotten in the car and taken off and decided to go where he was used to, just taking in and running his errands, and so I hid the keys. Well, more resentment and more anger. There was a big digression after that fall, huge when that happened. So in 2023 that was in the summer. What the fall? This was now December. Den was again sent to get now a PET scan, and the neurologist explained to us that he has Lewy body, and he sat Dan down in the office and showed him all the Lewy bodies that are in his brain, and that didn't make any sense to Den, and he's tried to tell him where the white and the black areas are, and the Louis bodies, and what's happening, but then walked out of there, thinking I'm fine, you know, Lewy body doesn't mean anything to him,

Barbara Hament: 17:11

right? He didn't say dementia, did he say dementia, Lewy body dementia,

Unknown: 17:16

he doesn't use the word dementia, they know that's a trigger, but anyways, Sten would just be stable for weeks and sometimes months, and then a decline, a step down.

Barbara Hament: 17:32

Oh, so not as much anger at this point.

Unknown: 17:34

Oh no, the anger was there.

Barbara Hament: 17:36

It was

Unknown: 17:37

stable as far as his digression of his ability to do things was just the anger was always there, it just kind of escalated at different times, these fluctuations of moods, and then he'd go back to, you know, being kind of den, but never the den that I knew before 2010 when I saw the first ink lane of fluctuations of moods, he never, never was my den again.

Barbara Hament: 18:08

That's a long time, 2010 till a diagnosis in 2021 that's 11 years.

Unknown: 18:15

Yeah, and then 23 the PET scan, and the fall, and it was really, really hard to watch him in this way, but then now the hallucinations, because I had done my homework again, my research to know everything I could about Lewy body, and I have to say that it was in doing that intense understanding and work, it gave me the power to understand where all this was coming from, and never to argue, never to remain calm, to remain peaceful with him, and it wasn't easy, but if I was going to see this through, and this he was really strong at the time, still, but the hallucinations and the delusions would happen where he'd say, I want to go home, and he was adamant, he'd look across the lake, and those aren't our people we know, that where did they come from, and they were been our neighbors for since the early 80s, and we've always looked across, but now he doesn't recognize his home, and something inside him was just saying the home we're in is not his home. So one day I took a drive with him. We went to the two homes we had prior, and thinking that that might kind of help him. There was one home that may trigger his memory, because that home burned down in a house fire. It had electrical issue during the night and got. We got out of there with our lives. I was eight and a half months pregnant with Josh, one of our boys at that time, and I'm just like, and Wendy and Jake got out of the house, that would have come down on them. All this was very vivid for Dan, and he would never forget that it was though we were driving and out for a drive, he had nothing that hit his mind of anything that looked familiar, so

Barbara Hament: 20:31

no memory of the fire.

Unknown: 20:33

No, no. I tried to say,"Oh, that was the house right there, that's it. And then he, well, when we returned home, now he was really mad. He says to me, Why are you taking me back here? Because we just left the place. Those

Barbara Hament: 20:48

are here. You thought this would jog his memory, and in fact, or help him, right?

Unknown: 20:54

Yeah, I wanted to

Barbara Hament: 20:55

reorient him somehow, and he was madder when you got home.

Unknown: 21:00

Yeah, really mad, and I'd even left the caregiver, Maria, who I loved, and he loved at home, to say I'm just going to take a drive with him to these houses and give her a break. Anyways, the delusions are difficult to work with, and over time, eventually I just started putting baby monitors in every room because I couldn't keep going up and down the stairs to look at where he was, what he was doing, if he was safe, even if it wasn't even in the house. So, anyways, then the next thing that came during all this time was, as you said, it was not the wandering out, it was doing my homework and finding out there's a word for it, elopement, and I go, what is elopement? He had a purpose and he had a goal in mind, and he, he was still really thinking clearly in some of those things that he wanted his independence, and that's one of the things he could do. He doesn't tell me, he walks out the door and

Barbara Hament: 22:09

soft, so

Unknown: 22:10

if he just walked out the door, it was so hard for me to keep an eye on him. People that would drive by and see him would call me. Hey, do you know Dent's down there by the tennis club? No. Okay, so at least I know where he's at, but I don't bother to go get him, because that didn't work. That escalated things if I went to follow him. So, anyways, another time the he eloped and it got really bad, was, and I had to call 911 Josh had already picked him up, brought him back home, and he took off again. So this time Josh had to get back to work and start doing his work, and I said, "Dad's gone again. He says, "Just call 911. And so I said, "Please don't bring sirens and fire trucks and things, but they do bring fire trucks, and they do bring the police and the

Barbara Hament: 23:08

sirens. Yes,

Unknown: 23:09

yes,

Barbara Hament: 23:10

and

Unknown: 23:11

I'm following behind, telling 911 where Den is, because if he darts somewhere, I have to be able to say where to find him, but I see way behind, and he, he was approached by the firemen first, and they, he talked to them, and then he walked away from them, and then the police pull up next to him, and they talked to him, and he's going to walk away. Well, Josh had pulled up at that time, so they helped Josh get him in the car, and it was a fight to get him in the car, but they said, "You got to take him to the hospital, you know, we can't do this anymore, you can't depend on us to do this. And so I met him at the hospital, Josh there, and he said, "Oh boy, Dad was screaming at him the whole way. He was so angry with him, but when I got there, you know, he seemed calm. And then Josh left. We sat there for four hours in the hospital waiting room. They had done a blood test on him, but nothing else. And people are coming in and out, and it's getting closer to the afternoon, where the crazies are starting to come in, that they don't do well in the afternoon, and I said, "Den, we do need to get out of here. I don't like what we're sitting here with. So I told them, "If you can't, Dr. Can't see us, we're leaving. They didn't have a plan. I just walked out with Den, and that's how that ended.

Barbara Hament: 24:44

Is you just went home,

Unknown: 24:45

we just went, but during

Barbara Hament: 24:46

all of this, were you thinking, like, first of all, about medications for him to calm him down?

Unknown: 24:52

Oh, he's been on medications, he's been

Barbara Hament: 24:54

on meds,

Unknown: 24:55

so much medication, and he had. So much because there was nothing wrong with them that he wouldn't take the medication, I hide it in his food on like five different medications, and it was,

Barbara Hament: 25:14

it wasn't working.

Unknown: 25:15

No, they kept giving more, you know, try this, try a little more of that, and you know, although I realized probably it was helping, but it didn't seem like Den was any calmer, because when the his delusions were coming more often, and so that was there

Barbara Hament: 25:38

ever a time when you were thinking I can't take care of him at home,

Unknown: 25:42

that's exactly what happened. After the police told me this, I said I have to have a plan, and if I'm going to have a plan in case I can't take him from the hospital, and they, you know, it's really bad, so I decided I'll go look at the board and care homes. Well, that wasn't workable because they only have alarms and he could elope. So then I went to the memory care placement that didn't work because they were so low functioning there, and Dan was not like that, he did not fit that, that placement, and it was a really nice one here in West, like that. I thought, oh, it's close, I could, you know, go and visit him if I had to. They had the best of things for him to stay active with things on the wall that he could type it, they would type in the like Lake Powell, and he could be looking like he's at Lake Powell, and but then the people sitting around in the at the tables and chairs, their loved ones were sitting with them, beating them, and and I go, oh, she's den would look around and this would, if I walked away from that, they said they, oh, they keep him medicated, you know, until he calms, and you know, instead. Well, he could be a zombie sitting there. No, I didn't want that for him. And they said, well, if we couldn't, then he'd have to go to a psych ward. I just

Barbara Hament: 27:15

seem like he fit any, in any of these, you know, in any of these places. No,

Unknown: 27:20

so now his alcohol that he was drinking was becoming the problem with all his medications,

Barbara Hament: 27:30

and so all this time over these years he's drinking also.

Unknown: 27:34

Oh, when I met him, he would drink two glasses of wine. Well, I wasn't a wine drinker, but I could have one, you know, maybe one day, and maybe another day, but then eventually I said,"No, I'm not even having one, I'm not even going to sit down with you after work, because I don't want the wine kind of visit, I don't think it's good. And then he started to go as he retired to three and four glasses, and although the doctor was concerned because of the medication, he went along with it. He also knew that there's a choice that I had made to still let him drink, you know, while he was nice. If he was mean, then it would be a different one, but he would be nice, and then he'd go up and sleep, and that was fine. Good, if he'll sleep. So eventually he would sit out by the lake in the backyard and start drinking straight from the bottle, and I'm going, "Oh my gosh, this is so embarrassing. He'd sit there and, you know, wave to people, and no shirt on, just drinking terrible. Oh goodness, then, and I said, oh my goodness, Den's telling me now we got to go to the grocery store and get more wine. I said, Den, we have like eight bottles in there, no worry, I will get some, but you know we're not going. I would never take them to the grocery store because I did not want him picking up wine anyways. He started yelling at me to tell me to get out of the house. He said just leave and get out of here, you know. So I called my son Michael, and I told him what was going on, and he says, "Mom, he said, "Let him drink as much as he wants, as long as he's not physical with you and David. He says, "I don't care if he drinks$1,000 a month, it's better that you pay that than putting him in a facility that's going to cost 12 to 15,000 a month and I knew Michael was right and so he texted me this and it was always stayed words that I treasure he said mom try to put peace ahead of. All that you do, if he says something nasty, say nothing, or something from love in return. If he does anything that you don't agree with, do not question, do not argue, just let it go. It's probably hard to imagine, but this is all as difficult on Dad as it is on us. He can't help it, and I knew he was right. I went back out the door, and I went to the grocery store without Dan. I picked up the cheapest wine I could find on the shelf. I bought 18 bottles home, and when I came through the door, Jen looked at me, and I put them all the boxes down by his wine cabinet, and I said, Den, look at this great wine bottle, saying this with the most cheerful attitude, because I was just filling the wine. My whole attitude changed when I came back through the door with all this. I knew that this is what I needed to do, and so did you

Barbara Hament: 31:16

ever think, like, maybe I should get non-alcoholic wine and fill the bottles with that?

Unknown: 31:21

Well, at Bluey Body Zoom, I got all that from my, and I brought home the non-alcoholic that, for some reason, as he could still kind of read what I tried to hide it, put it back into the bottle, quite working, and I thought, if I'm going through all this, because I had to take this wine and fill this cabinet, and I told him, I said, Den, if you don't want to taste this wine, because I really like this bottle of wine, it's I had some really cool label, and it says Made in America, and I said, so why don't you have somebody? Goes no, and I took, I said, well, I'm going to take it over to Mom's and let her taste it, it was okay, but brought it back, and I said, oh, she loved it, put it back, I said, here it is. It's open, you can have some, and so with that I found such peace in my heart. I just never had a problem with Den drinking after that. The neurologists, the dementia care clinic knew that I was giving Den the wine that he wanted. They, yeah, what did they say about that? They thanked me for being honest. They said a lot of people won't even talk about it. They said it can have problems with the medication. The medication could be less effective, it could worsen side effects or toxic reactions. To me, that was insignificant on trying to get family peace, so my group, as we talked about giving me all the ideas, I came back one day and told them, hey, you know, I put in Arnold Palmer, and I don't know what it was about the Arnold Palmer, which half iced tea and half lemonade, but he drank it. I put it in one of his wine bottle, regular wine bottles, and and he was fine. He thought

Barbara Hament: 33:30

it was so he liked it. He thought it was wine.

Unknown: 33:34

Well, it was in the right bottle. So I, so over time, I, I thought, if this works, I don't have to hide it when he's not in the room. Oh, I just started filling it right in front of Michael. Oh, Dad, I need to wash out that bottle, and here I'm gonna put some in. And he didn't care. It never, he never complained after that.

Barbara Hament: 33:57

Now, did his mood start? So, once he's not drinking, were his moods starting to stabilize a little bit, like where there was there less volatility? Yeah, you still so angry. Yeah,

Unknown: 34:08

it was because he was digressing, and, and that I just got the angry, you know, kind of Lewy body. Not everybody gets that. Some some husbands are very appreciative, or wives are very appreciative of their ever be spouse, but den, not den, not dead, no, and den was den was a hard one to do, and I knew that he could go on and on like this, and I would just have to just do what I'm doing, and so 2025 came, and the FTD started showing up, and he started making sexual behaviors advances to Maria, my the caregiver, and. And I'm going, oh my gosh, Sten would never ever have done that, so when I talked to the neurologist, he just said, yeah, this is what he has, I guess they don't have a test, but the behaviors are enough to tell you this is not okay, but I just told Maria, walk away from it when he's

Barbara Hament: 35:22

trying to grope her, he's trying to kiss her, hug her.

Unknown: 35:26

Yes, so it turned. It's

Barbara Hament: 35:29

amazing she didn't quit.

Unknown: 35:30

She stopped coming for two weeks. I wasn't sure when she left. I said I don't think she's coming back, and that's when I got guide in to try to help me too, but there

Barbara Hament: 35:42

you're talking about the Medicare, the guide program through Medicare,

Unknown: 35:46

yeah, that they have through UCLA, but they wouldn't come back, they, they said no, we're not sending anybody out, so with that I got to the point that I said, you know, prior to 2010 Jen was just crazy in love with me. He was always just, you know, so in love, and you know, he just couldn't stop telling me how much he loved me. But it all changed when this dementia hit. So now, 15 years of this next dementia, David would often say to me, Mom, I want my old dad back.

Barbara Hament: 36:30

Yeah,

Unknown: 36:31

I said, Dave, I want your old dad back too. I want him, but it's not going to come back. We have to just do our best not to argue, not to get, take this. He didn't understand dementia, and it, it was really hard on him. And, in fact, I think it was really kind of abusive in a way to live in a house like this with him, because I could walk away. That's how I dealt with it. I just walked away from Den. I didn't want any of the pressure headaches that Den would give me. I never had headaches, so I said, "Dave, just walk away anyhow. And it kind of takes your mind off of all this stuff. You're not like trying to figure a lot of things out, because I had to spread my time with David and take him to his programs and try to figure out, well, Jen's gonna be safe when I just go drive off anyways. In November of 2025 Den stopped drinking, so we had to bring hospice in to our home.

Barbara Hament: 37:36

It sounds like he was kind of imminent. Would you say he was dying, like his things had really turned a corner, and so, in terms of his health,

Unknown: 37:47

yes, we knew that when they stopped, you know, you're got, you're not eating and drinking

Barbara Hament: 37:53

right,

Unknown: 37:53

and, and it was just, just that you offer it to him, it's there, no, any, he stopped being argumentative at that time, too. He just looked at it, and he goes, "No, no. And so that was okay. The food was there, he could drink if he wanted anything, but it was his body knowing

Barbara Hament: 38:17

what to

Unknown: 38:17

do, and us trying to do what he was,

Barbara Hament: 38:21

you thought was right, you know, offering food and water,

Unknown: 38:25

and, and you don't force it, so, so

Barbara Hament: 38:28

Dan, at this point, is sleeping downstairs, not eating, not drinking, is that right? Yeah,

Unknown: 38:36

well, he wasn't eating or drinking,

Barbara Hament: 38:38

yeah, he wasn't eating or drinking, he's still really like restless and agitated, and then an hospice is involved,

Unknown: 38:47

so I knew then that we are needing, you know, we had gotten the wheelchair and he needed to be strapped in, because there's no way that he understands getting up out of that wheelchair, which he still could, because he was still strong, but he grew weaker and weaker until he got to a point that he was not so combative, he was maybe agitated from time to time, and then we could, you know, you know, the medicine, I think, helped that we were still helping with that little that agitation, but we knew that this was the end, and this is what we

told our kids: 39:29

it's time to spend some time with Dad. We're probably in our last week, and I said, 'Get back. Well, thank goodness they all got back on that Friday because the hospice person told us, you know, if you keep talking to him, you will make it through to hear them, but now we were all together talking with him. People had their own individual time with him. It was. Probably the most peaceful, blessed time that God gave us for enjoying that time with Den, everybody feeling very comfortable to come in and sit on Den's bed to pray, to talk, to have their own time, but it was absolutely the best. Well, his eyes stayed shut, and I loved the one picture I got of he was - he smiled, and before his eyes actually shut in his wheelchair, one a couple days before with my mom, and I got the last smile that I saw on his face. After that, his eyes never opened, and that night at midnight everybody, you know, went in their different directions, and they had just walked out the door. So the hospice lady, as nice as she could be, told us all, you just have to now let his body take what turns, but by now he was on the morphing. We could choose to give it to him or not to give it to him, but looking at Dan and seeing a tear come down his, his from his eye, I just knew that Dan is, was it's hard to even talk. It was so hard to see him with dementia, and I knew he was going home, and I knew all of us were gonna find peace. So, at 230 I woke up, and I looked at the clock, and it said I had 19 minutes of sleep before we had to get up at the 3o'clock time, and so I said, okay, I'll go back to sleep. I went to hold his hand, and it felt different, and I looked up at Dan. I go, he's gone. I didn't even have to do anything, he was just.. he was gone. I knew he was gone. I touched his face, and it was just kind of cool. And I jumped out of bed, and I yelled to Josh, he's gone, Josh, he's gone. So he went and got Becky upstairs and Steve on the couch, and we called Michael from.. he didn't want to come back, he just said I saw Dad, and that's what I want to remember. And Wendy got on the phone, and we all sat around on the bed, and we all talked for an hour and a half, that the hospice person said, "You don't need to call me, you take as much time as you want. It could be an hour, two hours, because what happens, she says, is then we call the mortuary, so take your time, and we talked, and we talked for that hour and a half, and we laughed, and we, we just enjoyed the fact that we were still all together, and we still know that we couldn't have done this journey any, any better.

Barbara Hament: 42:57

When you think about it, what a beautiful way to die with everybody

Unknown: 43:02

there,

Barbara Hament: 43:03

with everybody there, with your whole, you know, with most of your family around you. How beautiful, how lovely is that? Wouldn't we all want to die that way?

Unknown: 43:12

We would, and at home, but some, you know, I just felt blessed that I could keep them home this long, and through all the things that I had a such a supportive family that I had made a booklet for Dan, it was his mass booklet that with pictures, and I had showed it to him because I had worked on it for for a while now, and he didn't even understand, of course, what I had been working on it, what it was, but I wanted him to just still know that all the pictures of the family and all that were in it, and so at the end of the booklet I found what is called like you, it's the long goodbye, so I will read it, because the words I put in this booklet, people commented on the fact that my kids didn't want me to talk about dementia, then so they stayed very positive in the eulogy about the den he was, you know, was the dad and all, but I said dementia for the last 15 years was my, our walk, my walk, and, and it was very, very hard. So I want people to know, to know this. So it's, it says it's often said that with dementia, there's three deaths that we experience. The initial diagnose, God is giving us a cross to carry, a journey of which we do not know what lies ahead. This is our initial goodbye, for we know that each day that follows, it will be another step closer to the end. The second part. Word is the journey through dementia. Jesus taught us to have everlasting life, and we must pick up our cross and carry it. This is where we earn our graces and giving grace to others. Some days are easy, and some days are hard. Each day it's own story, and the third was the final passing from this life to the next. It is this day we cry our tears for both sadness and joy. Sadness for we will miss den, but joy that den is no longer in pain. He is free from his cross, and his soul has returned to the Father. This journey I walked with den all 15 years was one that was not possible without my faith, my family, friends, and all of you, thank you, Dan. I am forever grateful for having the opportunity to love you and be loved by you. We have shared so many memories together. You are an amazing man, husband, and father. Until we meet again, all my love, Mary. And one last thing that I could share that I think is so important are these words said by the cancer doctor to my friend Anna, and I pass them on, are the words that go be positive, be strong, and pray, and faith is the biggest, and, and I know that, and I asked everybody to just walk wherever their faith is, whatever their religion, walk that close, because that is what we have to do, we cannot walk this alone.

Barbara Hament: 47:04

No, we cannot. Your road was very hard. Hearing about it in group, we all were so happy you had your faith. I'm crying too. Yeah, your family and your faith really carried you,

Unknown: 47:22

it carried me in the storm, because I know my faith is where I found my peace,

Barbara Hament: 47:30

right?

Unknown: 47:31

And for me, I go to mass every day. Well, that was the way I found it. It's how I dealt with it, but I just tell people, go back wherever you felt that peace and that walk that faith and stay close to that strength that you get, because this is going to take anybody down,

Barbara Hament: 47:55

and I don't, cannot do it alone. Yeah,

Unknown: 47:57

I don't. Why, you know, I got such joy at the end. I had since then has passed. People say, how you doing? I go, oh my gosh, I'm can't tell you, I'm so doing great. David is doing great. He is amazing. How he, he just says, you know, Mom, it's just me and you, Dad's in heaven, and I said, "You're right, and so,

Barbara Hament: 48:26

yeah, it's a huge weight lifted off of you. Yeah, it was Mary. I really, I want to thank you for coming here today, and talking about your journey, your 15 year journey, which has been so difficult, so hard for you and for your family, and you are a warrior. You really are. You have showed your strength through this like no one I've seen. You have really stuck by den through thin and through thick, I mean through it all, and so I just applaud you. I applaud your strength. I applaud your, your spirituality. It has carried you, and it carries our group. You really, your words carry our group. So, thank you for that.

Unknown: 49:19

Thank you. I'm so happy to to share every dirty laundry that we had, your bigger ones, but you've

Barbara Hament: 49:31

been very open with your story, and so it's, it's remarkable, it's courageous, and it's helpful. Thank you,

Unknown: 49:40

thank you.

Barbara Hament: 49:46

Thank you for joining us today on another episode of Dementia Discussions. If you're a caregiver or know someone who's a caregiver that would like to be a guest on the show, please call me at 310 362 282 32 or go to Dementia discussions.net forward slash contact, and let me know. I would love to have you remember that you can follow Dementia Discussions on Apple Podcasts, Spotify, Google Podcasts, and many more. If you listen on Apple Podcasts, it would mean a lot if you would leave me a review for any other information about this podcast, please visit me at Dementia discussions.net and please share this podcast with someone you know if you think it may help. Thanks again for listening, and I'll see you here again next time on Dementia Discussions.