When Your Loved One Dies from Dementia

What happens when we lose our loved one after years of living with dementia? How did writing about living with dementia help Melissa Geiser to deal with her grief? What can be learned from years of watching a loved one die from dementia?


Melissa Geiser is a blogger and the only child of her mother Pat. At the end of 2013, Pat’s friends started calling Melissa when they became worried about Pat. Pat had been living in the same house for over 30 years, but suddenly she would ask her friends to lead her home after she finished working out at the gym. 

Melissa had just started back to college and her marriage was struggling, so this situation with her mother couldn’t have come at a worse time. In the end, Melissa felt she had to move her mother to Oklahoma to be near her. 

Melissa has written a blog to help others who were also experiencing loving someone with dementia entitled “Departure from Logic.” She is planning on using her blog to write a book to help others living with loved ones who are suffering from dementia. Today’s show is “When Your Loved One Dies from Dementia” and our Guest Host is Nancy Jensen.

Transcript

Melissa Geiser: 0:00

You've got to just keep going, but you can't. You're a human being with needs. And no matter how small, showing yourself the same kindness and grace that you extend to other people is hard to do. But it's so important because you deserve that as a caretaker as well.

Nancy Jensen: 0:26

What happens when we lose our loved one after years of living with dementia? How did writing about living with dementia help a daughter to deal with her grief? What can be learned from years of watching a loved one die from dementia? Welcome friends to "Bereaved But Still Me". Our purpose is to empower members of our community. I am Nancy Jensen. Our host Michael Liben is recovering from surgery so I'll be your guest host today. I'm a mother of four children, Justin, Jessica, Brandon, Austin, and wife to my wonderful husband Carl. My daughter Jessica passed away from complications after dealing with numerous congenital heart defects and many other health issues for over 20 years. That loss is what has brought me here to be the producer of this program, and your guest host today. Our guest today is Melissa Geiser. Melissa Geiser is a blogger and the only child of her mother Pat. At the end of 2013, Pat's friends started calling Melissa when they became worried about Pat. Pat had been living in the same house for over 30 years. But suddenly, she would ask her friends to lead her home after she finished working out at the gym. Melissa had just started back to college and was facing several life hurdles, so the situation with her mother couldn't have come at a worst time. In the end, Melissa felt she had to move her mother to Oklahoma to be near her. Melissa has written a blog to help others experiencing loving someone with dementia feel less alone. Her blog is entitled, "Departure From Logic". She is planning on using her blog to write a book to help others living with loved ones who are suffering from dementia. Today's show is "When Your Loved One Dies From Dementia". Thank you for coming on "Bereaved But Still Me" Melissa.

Melissa Geiser: 2:20

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

Nancy Jensen: 2:23

Tell us how your husband played a role in determining your mother's health condition.

Melissa Geiser: 2:29

My mom had spent every Christmas with us since my father passed away in 1995. So that was about 18 years of her always being here. As you mentioned, I am her only child. My two children were her only grandchildren. Christmas was with family, it was great for her to be able to come here. She called a couple of days before she was supposed to arrive and said that she wouldn't be coming. And first I thought it had to be something incredibly serious, and I asked her why. And she said, "My stomach is bothering me". And have you been to a doctor, what's going on? And she goes, "Oh, it's just little, it's just something's bothering me". And I had a sinking feeling with that. And I told my husband and he's like,"No, something's wrong and we need to go". It was like, yeah, are you sure? Yes, yeah, we need to go. So we left the day after Christmas. I told her we're going to bring your gifts to you, we're going to have the second Christmas. And I had told her when we were going to be leaving. And when our arrival time would be -- it's about a nine hour drive from here to Illinois. And the calls started coming in. She started calling and saying when are you going to arrive? And I would tell her, and I said I'll call you 30 minutes before we get there. And then she would call again. And then she was having her friends call asking the same question. And I remember asking my husband, I was like, "What is going on?" And he goes, "There's something terrible happening". And yeah, I didn't want to absorb that yet. But he was the one that I think knew what we were walking into.

Nancy Jensen: 4:05

He could see what was going on?

Melissa Geiser: 4:07

Yeah, because I think he was a little bit more removed than I was. So I think that kind of helped.

Nancy Jensen: 4:13

And was this a surprise to you?

Melissa Geiser: 4:16

No, looking back, no, he's the logical one. He's the calm one. He's the less emotional one. So when I'm the spinning tornado, he'll sit down and let's talk about this for a second. Of course he has flaws. He could see through the weeds when I couldn't or didn't want to, frankly.

Nancy Jensen: 4:34

Sure that's a difficult thing to face. Melissa, talk to us about the experience of moving your mom from Illinois to Oklahoma. How did this affect your everyday life?

Melissa Geiser: 4:46

It affected it, in the moment, a lot. We only had a limited amount of time to get to her and get a power of attorney which was the first thing I really needed to do in order to take care of her business. It was so frustrating until one of her friends stepped up and said, "Oh, I have a brother who's an attorney. I'm going to take care of this right now for you, and he will draw the papers up, we'll get a notary, they'll have it here. As long as your mom knows her name, her birthdate, what today's date is, we're good to go, and I'll take care of this". And it was such a relief, one of the many times I remember just sobbing, because this weight, it wasn't a gradual weight on my shoulders. It was all of it all at once, which was an out of body experience, really. And what surprised me about moving her here is how she was not resistant to it. And she was relieved to give the executive parts of her life over to me. And it was a lot. But then it was also something that I could do for her. And I tried to frame it in that way, as I'm helping her yes, this is huge. And there was so much going on; I was going back to school, I'm recovering from major surgery, I had a major car accident, it was just adding to the pile.

Nancy Jensen: 6:20

I remember when we did the power of attorney for my husband, and his parents, it was a lot. And here, you needed it right away. What a godsend to have that friend's husband be able to step in and take care of it so quickly for you. The ones that's wonderful. So how did having her so close change your daily life?

Melissa Geiser: 6:47

I had about a 20 minute drive. And through a lot of visits to different facilities, I found one where it was nice, most of them are nice-ish. But the people that work there, I felt a real connection with and I felt that they cared about me. I'm not a public crier, but at this point, as soon as I mentioned that my mom has dementia, and I need to move her here, tears. And I found a place where the director was patient, she understood, I felt a sense of relief, knowing that I could take care of her now. And I was only 20 minutes away.

Nancy Jensen: 7:26

Oh, that's wonderful. That would be a huge relief. We're going to learn more about your blog in the next segment. But before we get to that, can you tell us what kind of support you had during this huge transition in your life?

Melissa Geiser: 7:42

I think one of my flaws is not asking for help. I'm still not good at it, I tend to fold in and my world gets small. But I am very lucky that I have a supportive partner. And when I didn't know what to do, he could pick up the slack for me. Also my children, they were young adults at that time. This was eight years ago, and the way they supported me just in their kindness and their showing up and just being there and going with me to visit her, that was my support. I did tell a couple of friends and my best friend, but it was more of a they wanted to tell me how they would handle it, which is good. But I didn't need that right away. So I tended to not talk about it really with anyone. Eventually a therapist, I did get one of those. And that was sort out some feelings, because there's just times that you have to ask for help. And I was put into a position where even though I don't like it, I needed to get that support.

Nancy Jensen: 8:56

You had mentioned in the pre interview that your mom's friends were very supportive.

Melissa Geiser: 9:01

They were lovely. They called and checked on her. They checked on me. They wrote letters. They were so concerned about her and wanted her to be happy, which made me so glad to know that she had been surrounded with love. And one of her my dad's best friends from when my dad was in Vietnam, their names are Ron and Harriet, she hadn't seen them in so long. And she had told me, "I don't want them to be here" and it's too bad because they're here. And I took her to the room where we were going to meet them and her face just lit up when she saw them. She knew who they were. And we were able to talk about all the places that they had been stationed together and me being a kid and that friendship turned out to be one of the greatest gifts. I still am in contact with Harriet and Ron.

Anna Jaworski: 9:50

You're listening to "Bereaved But Still Me". If you have a question or comment that you would like addressed on our program, please send an email to Michael Liben at michael@bereavedbutstillme.com. That's michael@bereavedbutstillme.com. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. The opinions expressed in the podcast are not those of "Hearts Unite the Globe", but of the hosts and guests, and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement.

Nancy Jensen: 10:28

Melissa, can you tell us about your blog?

Melissa Geiser: 10:29

I started writing it mostly for me, I wanted to put down the memories I had of my mother and who she was, before I forgot some of those subtleties. I also started writing it because I had a lot of feelings about what was going on, and I felt lost a lot of the times. And as I learned along the way, I shared websites, I shared books that helped me, I shared some stuff about Medicare, because I got a very quick crash course on how Medicare works. My dad was retired military, so I learned all about TRICARE. That's why I wrote it, it was to help me put my thoughts out of my head and onto paper, so to speak. And also, I hadn't planned on publishing it, but when I did, I want people to remember my mom as I remembered her as well, just a little bit, that she was a person too. That she was young, she did the same things that we do. Dementia didn't define who she was.

Nancy Jensen: 11:33

That's beautiful. My father-in-law had been a professor of biochemistry at the U of A. And my kids didn't get to know that grandpa, because he had Alzheimer's for so long, but he was still a beautiful person. And I love that you have all of that about your mom on your blog.

Melissa Geiser: 11:56

I do.

Nancy Jensen: 11:56

So tell us how creative writing played a role in your own mental health.

Melissa Geiser: 12:02

It helped me sort out feelings that anybody would be unfamiliar with. It helped me put my thoughts, my feelings, my experiences, in a place where I could read them back, I could see where my mistakes were, I could see where I was knitting this quilt together to figure out what my new role was, what my new life is, because this was going to be a huge part of it.

Nancy Jensen: 12:34

That's a beautiful way of putting that knitting this quilt, putting your life together, seeing how it's all coming together.That's beautiful. So tell us about your piece,"More Than a Job", and how this philosophy impacted your care of your mother.

Melissa Geiser: 12:53

This was one of my favorites to write. I had seen a lot of the same people that were there at my mom's facility the entire time, from licensed practical nurses and nursing assistants, all the way to the director. They were constants. I also saw the abuse that they take, and a lot of racial slurs, maybe a little violence. Mealtimes were awful, it wasn't a fun thing to witness. So what I wanted to know is, what makes you stay? What is the thing that has you wake up every day, and come in, and expend so much energy in taking care of others? And, her name is Erika in the posts, we had to not use her real name. But she had told me it really comes from a place of love. And the more she understood what was happening with them, the more she learned what to say to them if they would say, "Erica, are you pregnant? You look pregnant?"--and she's my age. And she would say, "Well, but why would you ask that?" And she would get a story out of it. Or she would sit and hold their hands and they could tell her whatever they need it to be, and she would be in that time with them. And she said those experiences for her, were what kept her coming back because she got a glimpse of the person that was inside.

Nancy Jensen: 14:22

Oh, that's beautiful. That's beautiful. Yeah, I went to visit at a nursing home and was visiting a friend there and they had all these people in this community area. And one of the people that work there came by and I could see everybody involved with each other and it looked like a wonderful place. And I said something to the effect that, wow, it must be great working here and she goes, "Not really sometimes it's really hard". And I'm like, "What do you mean?" And then she told me just what she told me that some of them are verbally abusive, and sometimes they have meltdowns. So yeah, that must be difficult. But I love that she got a glimpse into who they really are, and that's just beautiful. Thank you for sharing that. Melissa, we know you're thinking about using your blog to help you write a book. What would be the purpose of your book? And who would it be written for?

Melissa Geiser: 15:24

Firstly, one of the purposes is to let people know my mom was here. And she was a mom, a wife, a sister, as I had mentioned. And for others, I wanted them to know, in their hearts, that they are not alone in feeling frustrated or overwhelmed, or when they can't stop crying. That is normal, and it's what so many of us have gone through, when you feel incredibly alone, even if you have a great support system. I don't think there's enough support to take that feeling away. As I found practical advice along the way, I wanted to share that, because I had to look for it, I had to dig for it, I had to make phone calls. Some of them weren't very pleasant, some of them weren't helpful. And I found that when I told people on the phone, I'm so sorry, this is my first time, I don't know what I'm doing, I'm trying to take care of my mom, so please be patient with me. And that's okay to ask customer service. Because I am not an expert in Medicare. I am not an expert in having a power of attorney and dealing with banking, or transferring money from one state to another. I don't know what I'm doing. And I found that just admitting, where you're hung up, or where you don't know where to turn next, a lot of times people will be more patient, and it takes some of that frustration away. And I also found that when I said, this is all so new to me, and this is what I'm dealing with, please be patient with me. The care and concern sometimes that I got, they'd be like, "Oh, honey, okay, I'm so sorry, let's get this taken care of for you". The tears of relief, again, crying, but the tears of relief and knowing that there were people out there that were willing to help, I just had to get over some of the hurdles.

Nancy Jensen: 17:30

Oh, I understand. When Jessica was born, and had so many issues, and I had to deal with so many insurance, and just different doctors, and just trying to learn all the things that were wrong with her. And I found the same thing. If I let them know that I'm new to this, I don't know what to do. Please help me or please have patience with me. They would turn around and go, "Oh, I'll help you do this". Not always. But a lot of times, and I think that's really important. Also I think that I am going to be reading your entire blog since my mom has dementia. I know we went through it with my father-in -law, but you probably have a lot of things in there that maybe we didn't experience. But I think it's wonderful that you've got that out there for so many people. Have a lot of people reached out to you, from your blog?

Melissa Geiser: 18:27

I did. I had more people than I thought. I thought I was just putting it out there that somebody could stumble across it. And of course, I did on my Facebook page --here's a blog, here's my blog post, you might go there. And people that I didn't know, they were the ones that found me and said, "This is just what I needed to hear right now because I am in these trenches with you. And now I don't feel like I'm all by myself". And I've made some wonderful friends that I've never met. But these people showed up, and I might have been a source of some help for them, but I got that back 20 fold just by knowing that they're out there too. And maybe I can do something that lessens their load even by a little bit, helped me.

Nancy Jensen: 19:22

That's wonderful. That's wonderful. One thing that we've learned from this podcast is that it's possible to survive a trauma and grief of losing a loved one. And to even grow from that experience. Can you tell us how you've grown or changed since your mother passed?

Melissa Geiser: 19:40

It's been a lot. I feel like there was the person in the before times, and then there's the person now that I am. I think the biggest lesson I learned was to appreciate and accept help when it's offered, even though my first inclination is to say no thank you. I've also learned that small acts of kindness can change a person's day. I've learned that even as an adult, it's okay to take a step back, if you have to just stop. We're not machines, we have to refuel, and if refueling means taking a nap, reading a chapter of a book, whatever that is, it's okay. And being a martyr is thankless. And it really only hurts the person who is trying to carry on as we do. So that's pretty much what I learned, and it was an important lesson for me to just ask for help and appreciate the small acts of kindnesses.

Nancy Jensen: 20:42

Yeah, it took me many years to figure that out. A therapist said that what you have to do is you have to fill your own cup. And when it spills over, that's what you give the world because you can't give from an empty cup.

Melissa Geiser: 21:02

Yeah, I love that. Back in the 80s I was a flight attendant. And I know everybody has heard this, put your own mask on first before you help others, and it's absolutely true. Because if you're suffering and you're depleted, how can you give more when you're scraping the bottom of the barrel?

Nancy Jensen: 21:19

Absolutely.

Melissa Geiser: 21:20

I also learned that it's okay if my children want to support me and sit with me and hold my hand. I don't have to be their mom all the time, they are adults. And I saw a side of them that I'm so glad I did.

Michael Liben: 21:38

If you've enjoyed listening to this program, please visit our website, heartsunitetheglobe.org and make a contribution. This program is a presentation of "Hearts Unite the Globe" and is part of the HUG Podcast Network. "Hearts Unite the Globe" is a nonprofit organization devoted to providing resources to the congenital heart defect community to educate, empower, and enrich the lives of our community members. If you would like access to free resources pertaining to the CHD community, please visit our website at congenitalheartdefects.com For information about CHD, hospitals that treat CHD survivors, summer camps for CHD families, and much, much more.

Nancy Jensen: 22:18

So you were just telling us a little bit about what you've learned, dealing with someone suffering from dementia. What words of advice would you have for others who are currently living with someone suffering from dementia or loving someone, like you were, that's in a care facility, that has dementia.

Melissa Geiser: 22:38

The number one word of advice would be to take care of yourself. And it seems so obvious. But when you're in it, it seems so needless, that you've got to just keep going, but you can't. You're a human being with needs. And no matter how small, showing yourself the same kindness and grace that you extend to other people is hard to do. But it's so important because you deserve that as a caretaker as well. And it seems so easy to say, but to put that into practice, and to make that a habit, there was a steep learning curve for me. And there were days where it wasn't so easy. If I needed to not go to see mom on a Wednesday, Thursday is fine. It's okay to say I can't do it today, or I won't be my best self when I show up today, but I'll be better tomorrow. There's so many people going through this at the same time. Just knowing and reminding yourself that you matter. And how you feel matters is so important.

Nancy Jensen: 23:51

Oh, that's true. That's beautiful. Sometimes when you're in the middle of it, you're just trying to get by one moment at a time. And you forget to be kind to yourself. So, I really appreciate you saying that. Is there anything that you wish you had known?

Melissa Geiser: 24:10

In the beginning, I wish I had known some of the things that I observed, which I was grateful to observe, such as other family members saying to their loved ones, don't you remember? Oh, this is Bob, don't you remember him? Or we were here yesterday, don't you remember? And I could see the struggle with them trying to remember. And if my mom felt that she had just seen her parents, they had come by for lunch. They did? So what did you talk about? There's no need for me to tell her that her parents are gone, and then have to remind her again. Nobody wants to be told that their spouse has died over and over. And I think trying to put myself in her world for a moment-- as an example, when one of her dearest friends, that they were connected at the hip, that friend passed away. And mom would still talk about her. She would still say, oh, Phyllis is going to be here. Or she would say, Phyllis, what do you think about what my daughter has on? Or it was always Phyllis. And even when she no longer knew me, Phyllis was there. And I was more than happy to keep Phyllis alive in her life, because that was her anchor. It wasn't me anymore. She didn't know who I was. But to let her have that I felt was one of the more important gifts that I could give her at the end of her life, because that was the person that she asked for in the hospital was Phyllis. And I told her Phyllis was here. That's who she needed. And yeah, you did what was best for her. I did. And I will say also, I mentioned the hospital. It's very hard, as you well know. And mom was on hospice for four days and nights. And the time that I had, there was her just her and I together in the quiet of the middle of the night, and me being able to hold her hand even though she wouldn't have known me. And we didn't talk, she wasn't able to talk at that point. There's nothing I would take for those days and nights that I had, as hard as it was, that was special. And having my family be able to be around and her great granddaughter, it made something sad, have moments of joy. And I think trying to find moments of joy, even if it's somebody coming in and saying can I get some water for you? There's little pockets of good even in a bad situation. Sometimes you have to dig deep to find. But there's pockets of good.

Nancy Jensen: 26:54

Yeah, I'm glad that you're able to see those and remember those and hold on to those. Before we go Melissa, can you please give us your blog's URL?

Melissa Geiser: 27:06

Sure, it's very easy. It's departurefromlogic.com, all one word, no spaces, and it'll be there. And in some of the blog posts, I tried to find lyrics from music that apply to what I'm feeling at that time. So I'll just use a little lyric in there sometimes, and it was fun for some of my friends to figure out; oh so this is what this refers to. And all the pictures in there, I took myself, it's another child to me at this point.

Nancy Jensen: 27:37

Oh, that's awesome. Melissa, it's been wonderful having you on our podcast. Thank you so much for coming.

Melissa Geiser: 27:44

Thank you so much, Nancy, this was such a pleasure.

Nancy Jensen: 27:47

We'll include the link to your blog in our show notes. That concludes our episode of "Bereaved But Still Me". I've enjoyed being your guest host. Please join us at the beginning of the month with a brand new podcast with your regular host Michael Liben. Remember my friends, moving forward is not moving away.

Anna Jaworski: 28:07

Thank you for joining us, we help you have felt supported in your grief journey. "Bereaved But Still Me" is a monthly podcast and a new episode is released on the first Thursday of each month. You can hear our podcast anywhere you normally listen to podcasts at any time. Join us again next month for a brand new episode of"Bereaved But Still Me".