You are currently viewing Grief and Loss During COVID (Part 2): Forced to Grieve Without a Funeral

Grief and Loss During COVID (Part 2): Forced to Grieve Without a Funeral

Episode #06April 29, 2020

Lauren Dykovitz was sitting vigil by her mom’s bedside while she was on hospice with end stage Alzheimer’s Disease during COVID. Lauren would imagine people lining up out the door at her mom’s funeral and her biggest fear was that her mom would die during COVID and wouldn’t get the funeral she and her family had dreamed of … she was right.

I’ve created this two-part series on grief to give public affirmation and acknowledgement that there are many of you out there who are grieving. Today’s podcast is my way of honoring you and your loved ones. And to make sure that nobody is alone with grief and bereavement during COVID.

In today’s podcast to help us understand grief during COVID, I have the privilege of interviewing Lauren Dykovitz. If you’ve been following me for a while, you’ll remember that I interviewed Lauren for my Caring for Aging Parents Show on January 15, 2020. Lauren’s mom sadly passed away at the beginning of April due to complications of Alzheimer’s disease, during the Coronavirus pandemic.

Today Lauren has been gracious enough to share with us her experience of grieving her mom in the midst of COVID.

Here’s a look inside my interview with Lauren Dykovitz

  • [02:27] Every culture has a way of publicly and socially mourning their loved ones who have died. COVID is depriving us of the opportunity to grieve socially, thereby increasing the risk for disenfranchised grief.
  • [08:03] Lauren shares a little about her caregiving journey
  • [11:11] The final moments with her mom were not what Lauren had envisioned. Little did she know that her mom had other plans.
  • [15:52] Lauren shares what it was like when she got the call.
  • [22:24] Lauren’s mom, Jerie, was always a loving and generous mom. Even in her death and dying process, she gave a gift to Lauren.
  • [26:35] During COVID, viewings and funerals are limited to 10 people. Lauren describes the challenges and touching moments of her mom’s non-traditional service.
  • [36:09] Lauren shares about her relationship with her dad in the context of grief.
  • [41:01] Grieving the loss of a loved one with dementia is different from grieving the loss of them after death, Lauren opens up about her experience with each of these losses.

By the end of this episode, you’ll feel less alone in your grief during COVID, you’ll have more courage to face the losses in your life, and a little bit of support along the way.

 

Please share this video with your friends who are grieving during COVID. Nobody should have to grieve alone.

To help you navigate grief and bereavement during COVID, I created a blog article that answers some of the most frequently asked questions I get about grief and I share online support resources for grief and bereavement learn more here.

 


Lauren Dykovitz is a blogger and author. She lives with her husband and two black labs. Her mom, Jerie, was diagnosed with Alzheimer’s disease in 2010 at age 62. Lauren was only 25 years old at the time. Jerie passed away in April 2020 due to complications of Alzheimer’s Disease. Lauren writes about her experience on her blog, Life, Love, and Alzheimer’s. She has also been a contributing writer for several other Alzheimer’s blogs and websites. Lauren self-published her first book, Learning to Weather the Storm: A Story of Life, Love, and Alzheimer’s. She is also a member of AlzAuthors, a group of authors who have written books about Alzheimer’s and dementia. Please visit lifeloveandalzheimers.com to read more about Lauren’s journey.

 

 


Links mentioned in this episode:

Lauren Dykovitz
My mom always wanted Amazing Grace played on the bagpipes. That was like the only thing she ever told us she wanted at her funeral. And, um, I was a police officer, and I know a lot of former police officers who play the bagpipes for funerals and things. And so I had a few friends to reach out to, and one of them was available. His name's Frank, and he came and played Amazing Grace at the at the graveside service and so grateful that we were allowed to do that because my mom has lost so much over the last 10 years. This disease has taken away so much from her already so much from all of us and to have to lose. Her funeral to was just devastating and heartbreaking. And we were after the 10 years that she went through in this battle that she went through, we wanted to honor that and to honor her and not being able to do that was devastating to us. So I am grateful that we were able to do what we were able to do and pretty much kept with all of her plans and her wishes just on a much smaller scale, but no lunch. And afterwards, no getting together to share memories about her or to talk. My sister has two small kids. They have not seen anyone in weeks. So after the funeral service, they went home and my, um, husband and I were with my dad and his sister and we went back to my dad's house and then his sister left, and that's it.

Dr. Regina Koepp
I'm Dr Regina Koepp. I'm a board certified clinical psychologist, and I specialize with older adults and families. I created the Psychology of Aging podcast to answer some of the most common questions I get about aging questions about mental health and wellness changes in the brain, like with dementia, relationships and sex care giving and even end of life. Like I say in my therapy groups, no topic is off topic. We just have to have a healthy way of talking about it. So if you're an older adult or caring for one, you're in the right place. Let's get started.

In part two of my grieving during COVID. I'll be talking about grief and bereavement. Bereavement is a period of mourning after a loss especially after the death of a loved one. So if you missed part one of my grief during COVID, go back and listen in Part one, I explore anticipatory grief and ambiguous loss. Today, like I said, I'm going to talk about bereavement. One healthy way to move through bereavement is actually to share our grief. In fact, grief is way too big to hold all on your own, and this is why every society and culture has a tradition for bereavement and morning, and these traditions typically include rituals and community and family. But during the Coronavirus Pandemic we're not able to grieve and mourn with our typical traditions. And when people aren't able to grieve and mourn with their natural and typical traditions or rituals, it might keep them from actually engaging in their bereavement and mourning process. And it has the risk of creating what's called disenfranchised grief. I want to share with you a little bit about disenfranchised grief, so to disenfranchise means to deprive someone of a privilege or a right disenfranchised grief is to deny someone of a privilege or their right to grieve. And here's how it's playing out during the Coronavirus pandemic. People can't mourn publicly the ceremony where we come together and remember the person until stories in a community and how they influenced our lives that that's been taken away from us. And when we withhold our acknowledgement and when we aren't able to affirm that somebody is grieving or honor the memory of the person or the relationship, or how significant the loss is... when we're unable to do that, the needs of the person who's grieving don't get met. And so they're denied or deprived the privilege of grieving their denied the privilege of mourning. And that is disenfranchisement, that is, disenfranchised grief. And I don't want you to experience disenfranchised grief because when you do the risk of mental health concerns like depression, anxiety or substance use increases. And that adds to the suffering. And this is exactly why I've created this two part series on grief during COVID because I want to honor you and your love ones in your bereavement process. I want to create a public affirmation and acknowledgement that there are many of you out there who are grieving, and so my two part series on grief is a way that I a little piece, a little bit that I can do to honor you and your loved ones. So I've created this two part grief series and I've also created a blog post to accompany this series all about grief. So I answer some of the most frequently asked questions I get about grief and also where you can get support for grief and bereavement safely and online during the Corona virus pandemic. So I'll link to this blog post in my show notes, or you can go straight there by going to www.drreginakoepp.com/blog/grief.

In today's podcast to help us understand grief during COVID, I have the privilege of interviewing Lauren Dykovitz. If you've been following me for a while, I interviewed Lauren for my Caring for Aging Parents Show on January 15th of this year. That's 2020. Lauren's mom sadly passed away at the beginning of April. That was just a couple weeks ago, due to complications of Alzheimer's disease, and this happened during the Coronavirus pandemic, and today Lauren has been gracious enough to share with us. Her experience of grieving her mom in the midst of COVID.

Dr. Regina Koepp
I just can't imagine what you're going through with. Your mom was on hospice during cove it Then she passed during COVID and you moved into a new house. That's so much. How are you?

Lauren Dykovitz
I'm doing okay right now, And I say right now, because it kind of changes every few minutes or so throughout the day. It's like an emotional rollercoaster. Um, but knowing that I had something to do today actually helps a little bit, you know, to keep your mind off of it

Dr. Regina Koepp
just to refresh listener's memories. Will you remind us of how old you were when your mom was diagnosed with dementia? How long you were caring for her?

Lauren Dykovitz
My mom was diagnosed when I was 25. That was in July of 2010 and she was 62 at the time. And about three years into her diagnosis, I quit my full time job and kind of since then. So the last seven years, I've been off and on part time caregiver. I moved away a couple of times for my husband's job, so I wasn't necessarily hands on day to day caregiving, but still the long distance aspect of the caregiving. And when I would go home to visit my family at certain times, I would try to take over for my dad. And then we did hire in home caregivers three years ago, So I had more of a daughter role at that point. But still, I guess you could say, a care partner, someone who's still contributing to the care management. But I wasn't in it day to day. So I did that up until recently, I moved. I was living in Florida and I moved back up in the Northeast. Um, and then three weeks later, my mom took a decline and lead to the end. Um and so I had been of the daughter, really, at that point, but still still very much helping my dad manage her care and and what everyone everyone was doing for her. And what's the next step? And how are we gonna change and transition her care and things like that? So I've been doing it off and on for about seven years. My mom was diagnosed for 10.

Dr. Regina Koepp
I don't wanna underestimate or minimize the care that goes into loving somebody with dementia even if you're not doing the hands on work.

Lauren Dykovitz
Yes, that's a whole job in itself because it changes your relationship with your mom Or, you know, your dad or husband wife, whoever the person is. And you really have to learn this new relationship with this person and how to still make them feel loved and secure and happy. And I've never been in a position where I'm bathing my mom or I'm changing my mom. But I've been very much involved in her care, and it takes a toll on you whether you're there every day or not or you're just on the phone. I mean, every different role of caregiving takes its own toll, has its own unique challenges. I've kind of done a little bit of it all at this point.

Dr. Regina Koepp
want to ask you some questions and whatever you're not comfortable with, I will respect your privacy and your limit. You just be honest with me about what you're comfortable answering and what you're not comfortable answering. Okay? And I will respect your needs and wishes with that.

Lauren Dykovitz
Okay.

Dr. Regina Koepp
Will you share a little bit about your last visit with your mom?

Lauren Dykovitz
Yes. So, I had been in... since I moved back to New Jersey. My parents are in Delaware, and we had been looking for a house. Um, so we have finally ready to settle on this house, ready to close on it and move into it. And I knew, I knew that I was going to have a few days where I would not be able to go visit my mom because of moving in, moving out of the rental house and all those things that go along with moving. So it was going to be five days that I wasn't going to see her, and I just thought, I can't do that. I can't go five days but five days or someone at the end of their life and stage Alzheimer's Five days is a long time. And I kind of said to my husband, I can't go five days without seeing my mom. How about the day the movers come to our storage unit to actually move everything into the house? I'm gonna go see my mom instead. So I'm not gonna go with you and deal with all the movers and the boxes. And and he said, OK, which was a lot on him. And I so appreciate him stepping up to take care of all of that so that I could go be with her. Uh, and I knew that it was nearing the end of her journey the end of her life. But I truly had no idea that it was coming that soon. My mom did not go through the typical, um, week or so of not eating or drinking anything. She would maybe eat or drink. I mean, toward the end, she was on a pureed diet. She was eating mostly. It was just baby food, and her beverages had ticket in them. So she wasn't really drinking that much because of the consistency and everything. Um, so she would maybe have a few bites a day and a few sips, and maybe the next day she wouldn't have anything at all. But then the next day, she might eat a lot. So is very normal for her to go a day without eating or drinking all day. And then the next day, she would I was obsessed with keeping track of this. I made the caregivers write down in a notebook How much she was eating a drinking when they were there so that we could keep track because I really wanted to know. Okay, we have two or three days in a row where she hasn't eaten or drinking anything. Uh, she hasn't eaten her or had anything to drink. Then that's different. That changes things. So I was waiting for that tow happen, waiting for that tow happen, reading about the signs of active dying and looking for the signs of active dying every time I was with her, My last visit with her was on a Thursday and I looked for everything that I knew to look for. I didn't see anything and I thought, OK, I've just got to get through the weekend and I'm gonna be here on Monday and I will see her on Monday. So Thursday, when I went to visit, it was a normal visit. Just sitting, listening to music with her, holding her hands, just watching shows, and just just being with her, just holding space with her in that moment and letting her know him by her side. And every time I visited her toward the end, I would always take a few minutes to tell her how much she meant to me. What a great moment she is. I would say we're going to be OK. I would tell her we're going to be really sad and we're gonna miss you a lot. But we're all gonna be okay. And it's okay for you to go to rest now on. I made it a point of saying that every visit because I never knew when the end would come. So I know. I told her that on that day on that last visit and when I went to leave, just like every other visit, I kissed her on the forehead and I squeezed her little hand one more time. And I said, I love you, Mom. And I said, I'll see you later, Alligator and I left. I did not see her the next day because of the move. And then I got the call very early Saturday morning that she had that she had passed. So my last visit was two days, I guess before.

Dr. Regina Koepp
What was it like for you when you got the call?

Lauren Dykovitz
Devastating. I'm probably going to get emotional, so I apologize if you can't understand what I'm saying. But, um, so Friday we moved into, um, our new house and we have this nice big backyard. I have two dogs, and I couldn't wait for them to see their yard. So when they went out to run in their new yard, I took a video of it and I sent it to my dad. And, um he told me that you showed it to my mom that night. And I thought, you know, she she was waiting for us to move into our house. Oh, she saw that video and she knew that we were We had moved into our house and that we were somewhat settled. Not really. But I thought to myself she was waiting because he showed her the video that night. They went to bed. He... my dad is a saint for everything that he's done for my family and everything he's done for my mom. And he refused overnight care up until the end. I can do it. I can handle this. I could take care of her. I don't want anybody there at night. I just want to be, you know, with my wife. And so he would wake up every couple of hours overnight to turn her, um, so she wouldn't get bed sores and things like that? So the last time that he woke up to turn her was about three o'clock, and he said he would just not really touch her, but more so touch the draw sheet to pull her and turn her over. And so he didn't notice anything, he went back to sleep. And at six o'clock, he thought about getting up to turn her again. But he thought I'll wait another hour because the caregiver was coming a little bit later that morning. So he woke up just before seven, um, and and called me immediately. I was, um I know I'm jumping all around, but I was in our new house. I had just gotten up. Um, a little 6 15 6 30 or so It's sitting on our couch in our new family room having a cup of coffee, thinking about where do I start with unpacking and this and that. And I think I was scrolling through Facebook, and suddenly my screen flashed up. Dad was calling and my heart stopped seven o'clock in the morning on a Saturday morning. It's not normal for him to be calling. Something's wrong, and I think I was still not wanting not wanting to go there. And I just thought, Oh, something's wrong, Like this isn't normal for him to be calling. And I answered the phone and he told me that he had just gotten up to check her in the morning and that she was cold and it was just It's really a blur because it was just shocked. What? What do you mean, like No, I'm supposed to get the call that she's not doing well. Come be by her side. Come, hold her hand. The end is coming. I'm supposed to be there for the end. I'm soup and I immediately yelled for my husband and just started running around looking for clothes to put on out of a box in our bedroom because we moved into our house the day before. So I didn't even know where anything was at that point. And my dad said that she was cold but seemed very sort of unsure if it was really - Is this what is happening? Is this the big thing that's happening? So I ended up calling, um, my cousin, who she is amazing. She's in a nurse. She works in labor and delivery, and she lives maybe five minutes away. And I knew it was going to take me almost on our to drive to their house. My sister has little kids. It was going to take her a while before she could get to their house. And I called my cousin and told her as if you have to go over there, he cannot sit alone for an hour, not knowing. So we're scrambling and getting ready. Um, we get in the car and we're on the way down there. And I told my dad I said, I don't know if she's not gone yet. Just just sit there and just hold her hand and just tell her that you love her. Um, and I didn't hear back from him. I didn't hear back from him, so I called him again and I said, It's Julie there yet He said yes. She just got here and I said, Okay, well, what what what's happened? He said she passed and um, it was it was a sense of shock because the end was not what I had always pictured it to be. I thought we would have days where we knew what was coming, and we're sitting with her and holding her hand and waiting for her to take her last breath. But it didn't happen that way, and I was very upset because I kept saying I was supposed to be there. I was supposed to be there and my dad felt that way. My dad was sleeping in the bed next to hers and he missed it and he felt that way. And so I think for all of us, it was just this sort of sense of shock that, you know, this is coming, you know that it's going toe happen. But the way that it happened and when it happened, none of us were prepared for that and moving into a new house since the first morning in the new house having a cup of coffee and I get that phone call. Never in a million years did I expect that. So that was that was really difficult.

Dr. Regina Koepp
All the planning and preparation that you did and then it at all..It all happened in a different way.

Lauren Dykovitz
Yeah.

Dr. Regina Koepp
Will you say more about the significance of your mom waiting for you to get settled in this home?

Lauren Dykovitz
Yeah. I mean, so my mom was the type of mom, the type of wife that did everything for her family. And it doesn't surprise me at all that that she did this for her family. Because the initial feelings for me of being angry that I wasn't there and I missed it. And I just saw her. How could I not have known this was coming? Um, you know that it still comes up. I still feel that a little bit that I wanted to be there, but I just think that my mom was sparing us all by doing it in the middle of the night when everyone was asleep. And my dad wouldn't know until the morning when everyone was home and everyone was awake. And it wouldn't be that call in the middle of the night and rushing to get there in the middle of the night. And I feel like she planned, like someone told me recently when she was transitioning to end of life. They said, You know, your mom has a plan for how this is going to go. It's not up to you. You can't control it. It has nothing to do with you. She is a plan for how she wants this to go. And I truly feel that this was her plan. In the last three months since I moved back up to the Northeast to be closer, a family. My husband and I have been looking at houses, and every time I would see my mom, I would tell her we saw this house. You did this, You know this is going on. Once we were under contract on the house we bought, I showed her pictures of it. I showed her paint colors that we picked out toe, have painted a shoulder, the cart that we picked out. I showed her and told her everything along the way. And she knew when we were doing what we were doing, what the timeline was and what was happening. Um, and she knew when I left on Thursday. Okay, Mom, we're moving into the house tomorrow. I'm moving into my new house and I'll be here on Monday, and I just think that she was waiting for that moment waiting for it to happen. Okay, She's in her new house. She settled. Now I can go. And the fact like I said that, that she did it in the middle of the night when everyone was sleeping on a day when she knew everyone would be home any. Even in this quarantine, my husband and my brother in law are both still working. So Saturday she knew they would be not at work. They would be home. We would all be together, and I feel like that was her last act of motherly love, not her last act, but her last act on earth as she's if she's living because I still feel that she's she's gonna take care of us. But her less act here on Earth was to spare us from that week of sitting at her bedside, waiting for it to happen, watching her struggling to breathe, knowing that she wasn't eating or drinking anything. And, you know, being there all day, all night for that long and just doing this at a time when, when no one was with her to see what happened. I mean, we've all seen enough, and I think that was her way of protecting us and waiting for me to be settled into my house. And someone had mentioned that my new houses is my new chapter and that my mom didn't want me to have those two hard memories and the painful memories while I'm living in this new house and that that was her way of setting me free into this new chapter of my life and this new home in my life.

Dr. Regina Koepp
What thank you for sharing so much of this with me. It's really very special. So intimate and tender... We have as a culture our rituals around grieving. We have services, and we have funerals that we have ways to memorialize the people we love and to remember them with a community. And that's like really important to our grieving processes to mourn publicly. And right now there's COVID restrictions, and so we can't more and publicly as a community together. I'm wondering for you. How have you engaged in your mourning process?

Lauren Dykovitz
It's crazy because just a few weeks before she passed, I started becoming really concerned that she wants it gonna have a funeral. And I actually wrote an article for her view from home that I think the title was I'm worried my mom won't have a funeral, and my dad just kept saying, I just I really just hope that she hangs on until this is all over so that we don't have to rework our plans or every know, figure out how we're gonna do this and what we're going to do. Are we gonna wait to have the service or are we going to just do it? And I knew there was no way that she was going toe toe Hang on that long and in a way that that selfish for us, right to feel that way because she's suffering and she had no quality of life, and I didn't want to prolong that for her just so that we could have the comfort of having her funeral. But it's it's a tough situation to be in. It's unprecedented. I never, never in the 10 years of this journey did I ever think it would end this way and not being able to have a funeral, and I was really, really concerned about that. And you know that that happened. She, um, passed during this pandemic. Um, the restrictions are 10 people,. and we were fortunate that the funeral home did allow us toe have a small viewing. Um, with it was 10 person limit. I've heard a lot of places aren't even allowing a visitation at all. So that was important to us for the closure of it. Um, so we were able to do that Limits. It's a 10 people. They did allow our...we have a family friend, long time hair stylist to Bonnie. She's the best. And for the last three years, she's been coming to my mom's house to do her hair. She did it in, Ah, you know, chair in a wheelchair in her bed. She came and she did her hair every every other week or something. So it was always our intention to have her do my mounts hair one last time, and they allowed us to do that, which I was very grateful. My mom would not want anyone else to touch her hair sides Molony and we were allowed to have a 10 person private viewing and a 10 person graveside general service, Um, which was that was hard. Ah, it caused issues in the family being limited to the 10 people. Um, we have a smaller family and that I guess lucky. If you want to say that it's lucky. But these people with these huge families, how do you pick who can come and who can't come? That's 10 people. And we had heard from the funeral director that certain cemeteries were counting cars at the gate and making people turn around and leave. And we didn't want to deal with any of that on her funeral day. So it was very difficult to to figure out what to do. And we had all decided prior to her passing that we wanted to keep her wishes of being buried. And we don't want to prolong this. We wanna do it now. She's been suffering for 10 years, and we just want her to be at rest. We want her to be in her final resting place now. We don't want to keep her at the funeral home, you know, in a in a freezer for a month until this is over with and who knows when this is going to be over with. We don't want to put her through that. We want her to be at rest now. So we continued pretty much with all of the plans that we had had just on a much smaller scale. My mom always wanted Amazing Grace played on the bagpipes. That was like the only thing she ever told us she wanted at her funeral. And, um, I was a police officer, and I know a lot of former police officers who play the bagpipes for funerals and things. And so I had a few friends to reach out to, and one of them was available. His name's Frank, and he came and played Amazing Grace at the at the graveside service and so grateful that we were allowed to do that because my mom has lost so much over the last 10 years. This disease has taken away so much from her already so much from all of us and toe have to lose. Her funeral to was just devastating and heartbreaking, and we after the 10 years that she went through in this battle that she went through, we wanted to honor that, and to honor her and not being able to do that was devastating to us. So I am grateful that we were able to do what we were able to do and pretty much kept with all of her plans and her wishes just on a much smaller scale. Um, but no lunch. And afterwards, no getting together to share memories about her or to talk. My sister has two small kids. They have not seen anyone in weeks. So after the funeral service, they went home. And my, um, husband and I were with my dad and his sister and we went back to my dad's house and then his sister left, and that's it. Not anything that we had ever imagined. Or anything that we have ever pictured having. Um, so we did decide to do the drive by visitation. Um, which I kind of got the idea from all these things you've been seeing on the news like the parades for birthdays and things. And I said, I wonder if people would do this. I wonder if they would join in and participate and just kind of have them drive past and pay their respects in that way, and we had a great turnout for that, and I talked to my dad. My dad's been retired for a few years, but his good friend Phil still works for the company, and I mean, he must have brought, like, 15 cars or something. And they put signs on their cars and black ribbon on their cars. And my dad was really touched by that and tears in his eyes and people that I went to grade school with showed up. And family members, um, just people that you would never expect to show up came and then, you know, people who who were close family and friends and things, and so it was really nice toe have something to honor her. And I think that really, I know that really meant a lot to my dad. He kept telling me how nice that was, and he said, You know, it's almost better this way because the people that came and got to drive by some of them pulled over and talked from the road. And he said, You know, it's almost better this way that we got to do that and I don't know that it would have that it would have meant that much if it was just the regular visitation public visitation and we. The one thing that bothered me about that was I always pictured my mom's viewing with, like, a line out the door. I just knew people were gonna come and I I never thought it would be any any other way. And to not have that for her to not have the honor for her and just to honor my dad and and what he's done for her and our family. I mean, it's unbelievable what he has sacrificed on what he has been through in keeping my mom home, which in the end of this turned out to be major because if she was in a nursing home, we wouldn't have seen her for who knows how long. And we would have just gotten the call your mom passed in her sleep last night, and that would be it. Her being at home made all the difference. I mean, I could just go on and on about so many things that I have realized in this pandemic that I never saw coming. Nobody ever saw coming, but tying in with the end of my mom's life and just how her being at home made all the difference in us being able to be with her, you know, until the end.

Dr. Regina Koepp
How is your dad now?

Lauren Dykovitz
I would say that he has his moments. Um, and I'd say the same for myself. It's in the first week. There's a lot to do and even though we didn't have a a big traditional funeral service, there were still things to do. We had to meet with the funeral director. We had to get her close together. I wrote the obituary. We got pictures to get there, something to do every day. And then the service was over and we had the drive by visitation was the next day and then that was over. And I would say, Up until then everybody was kind of doing okay. Like my sister and I. Wow, that's you went better than I thought he would like. He seems like he's going to be OK, Um, but it's gotten harder since one thing that I have worried about the most with him. It is him being lonely because in this full time caregiver care manager position that he's been in at his home. He was never home alone. There's always someone there, whether it was just my mom or in the morning a caregiver would show up. There would be nurses there. Hospice nurses, different caregivers. Caregiver's coming at night. Uh, even overnight. My mom was there and there were, you know, people coming to visit and see her and spent time of her, and that's all gone. Now he's by himself in this house, and there's really nowhere to go and nothing to Dio and no one to see. And I was worried about that before this grown a virus pandemic. But being in this and not, he can't even go see his grandkids. And I have been seeing him and my husband, but nobody else you know can come visit. Um, my dad has his own health problems, so we worry about him being around too many people and all that, um and so he's just in this house by himself and surrounded by memories of my mom, memories of her care, memories of things she's lost. And I think it's gotten tougher now because eventually the cards stopped coming in the flower stopped coming and nobody's bringing meals anymore, dropping meals off at your house and nobody can visit right now. And there's nowhere to go and nothing to do... and the weight of the silence. And you have no choice but to start thinking about it and your sadness. And, you know, I think he's been struggling more in the last week or two than he was in the first week. Um, Saturday it will be three weeks. And so the first week was a lot of things to do, and then after that, it's kind of dying down. And I talked to him this morning and he sounded a little bit better. But the last couple of times before that that I talked to him. He just seems really sad, really down. Yeah, he's just we're trying our best to be there for him and and also to give him his time to just he said. And grief, because you do need that. You do need to cry, and you do need to acknowledge the feelings and the memories and the loss, so it's kind of hard to know when to leave him alone, because I don't want him to be alone. But it's hard right now with everything going on. I mean, there's not much you can do.

Dr. Regina Koepp
Do you ask him?

Lauren Dykovitz
I do. I probably annoy him because, uh, my sister also because she has been calling him like before, eight o'clock every day. And he was like, You know, she called me. It's at, like 7 45 this morning and you know, he's so I'm glad that we're all checking on him and just trying to keep him talking and things, and I do ask him how he's doing. And sometimes he opens up more than others, you know? But I don't want to push him. It's it's his brief and his journey, and I just want to be there for him. But I don't want to push him if he's not comfortable yet talking about things, but he has opened up and said, you know a lot that I never I wouldn't have expected him to share.

Dr. Regina Koepp
So your relationship with your mom changed over the years and so did your relationship with your dad?

Lauren Dykovitz
Yes.

Dr. Regina Koepp
How is grieving after your mom passed different than grieving through the stages of dementia?

Lauren Dykovitz
Yeah, I feel like I'm an expert on grief at this point because our journey has been so long and I have been breathing for so long. And when someone is suffering from Alzheimer's, you lose them slowly and a little bit at a time, and it's very slow change, small changes over a long period of time and you're grieving those losses all along the way. And for the last 10 years, you know, I've been grieving those. She can't, um, order for herself at the restaurant anymore. And now she can't dress herself. Now she needs help going to the bathroom. Oh, now she can't walk. And now she can't talk anymore. She's lost over and just all I mean things that you wouldn't even think of that your that you lose over the years and you grieve that. But you don't really have time to grieve it because you're in it and you're dealing with it and you're losing things and you're sad about it. But it's okay. Well, what's next? What do we have to do now? OK, this she's lost this ability. Now we have to transition her care and change things and come up with a new routine and and you're just cost. You're just in it and you don't have time to really sit and like, But the emotions hit you. And truthfully, I had no idea how it was going to feel when my mom died. I kind of thought I might not be that upset about it, because I've been grieving her for so long, and I know that that this is coming. I know that she's gonna die soon, and you feel like you might be prepared for it or you might be ready for it. And you're waiting for the end of this journey the end of this long, difficult road that you're on. And you almost think I almost thought that maybe I won't be that sad, because I I've been doing this for so long, and I'm prepared for it. But the I was wrong just dead wrong about that? Because there's nothing that can prepare you for losing your mom. The fact that that it's so final that she's gone, that I go to my parents house now and it's not my parents house anymore. It's just my dad. My dad's there. My mom's not there. I can't go see her anymore when I would be sad before and I would miss her before I could still go physically, see her and sit with her and hold her hand, even though she had changed so much over the years, she was still here for me to be with and now that's gone. And so where do I go when I'm missing her? What do I do? How do I How do I feel? You know, how do I process those feelings and just be with her again? And it's almost like, now that she's gone and there's no care anymore, there's no nothing to figure out. There's no decisions to be made and slow down like life is still right now, and everything over the last 10 years is hitting me now at once, and I'm grieving my mom from three weeks ago, but I'm grieving her from a year ago, 2, 3 years ago, grieving her from eight years ago. I'm grieving her from before she was diagnosed with the illness. It's just all of the different versions of my mom over the years, on all of the different things that we've done together and memories that we had before she got sick. It's just that everything hits you all at once, and you have nothing but time to process it now, especially right now, because everything is shut down and it's a lot harder than I thought it was going to bay. It's a different kind of grief because it's it's just so final and just knowing that she's she's gone now and there's, you know, where do I go when I'm missing her? Where do I go when I want to feel close to her? It's just a totally different type of grief, and a lot of people have said, You know, you you don't know what it's like to lose a parent until you've been through it and I always kind of felt like, well, basically already lost my mom because of this disease and how much she's lost over the years and how much it's changed her. But it's different. It's just so different and it just changes. Your whole life changes you as a person, and I'm still in the very beginning of that grief and processing that. But I can already can already see how it's changed me forever, and it's just it It's just a totally different type of grief.

Dr. Regina Koepp
Thank you for sharing that. What's been the most helpful way that people have supported you with your grieving process?

Lauren Dykovitz
I think for other people doing things for me was coming to the drive by visitation and showing up. Uh, people have sent cards, some flowers, meals, uh, cupcakes, cookies, you know, things that that they've ordered online and had sent to the house because, you know, maybe they don't feel comfortable bringing something themselves, or dropping it off. Just I really appreciate what people check in, even if it's just a quick text. To just say I'm thinking about you or how are you doing and things like that. Um, I made a good friend through my block. Her name is Janine and her mom passed away at last February, and she kind of consider her like my coach because she's kind of like helped coach me through the end of this mess and things that she learned the things that she realized and how to look for signs of my mom and things like that. And she she's been great with me, kind of sharing those things and supporting that and accepting it and telling me stories about what she went through, uh, and sending me quotes that she thinks I would like or that would fit my situation. And so I mean, those are the things that just, ah, simple taxed or a simple card in the mail, or, I mean, that really means a lot goes a long way.

Dr. Regina Koepp
Lauren, thank you so much for sharing so much of your journey with us. It's so valuable that you have been so honest and open and vulnerable so often. I hear from people that there's nothing you can do with a person with dementia that they're gone. I think what you did in your 10 years of loving your mom with dementia is you included your mom in your life, and you shared your adventures and your new beginnings, like buying a house even when your mom was on hospice bed bound, unable to communicate, you were including her every step of the way in your life. And I think that honors who she is. And I am sure that your mom was so proud of you and was so just proud of the woman that you have become and the woman that you were as a caregiver and a daughter. I really have a lot of admiration for how you cared for your mom and loved your mom.

Lauren Dykovitz
Thank you

Dr. Regina Koepp
I want to give a heart felt thank you, toe Lauren, for being so open and vulnerable about the end of life journey with her mom and her bereavement process following her mom's death. I'll link to Lauren's website and blog in the show notes and you can follow her there. My hope ,and I know Lauren's hope as well, with sharing Lauren story is to make sure that nobody is alone in this caregiving journey with dementia and that nobody is alone with bereavement during COVID.

If you'd like to learn more about grief, I've created a blog article with frequently asked questions about grief and bereavement, and I also share where you can get support online for grief and bereavement. Take a minute and head on over to that blog post to learn more. You can do that by simply going to the show notes and linking to the blog there or going straight to the blog at www.drreginakoepp.com/blog/grief

If you liked this episode, be sure to subscribe, so you'll be the first to know when my episodes air released and then leave a review. Subscriptions and reviews actually help people to find this show and wrapping up. It's important to share that. The ideas I express on my podcast are mine and mine alone and that information shared does not take the place of licensed medical or mental health care off you. Next week. Same time, Same place for a story of love after loss. It's a story of hope and new beginnings. So lots of love to you and your family. I'll see you next week. Bye for now.

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