This page is intended for people who have cared for and lost a loved one with dementia with Lewy bodies. The information we share was developed from the results of the PACE-DLB study, a research study led by Dr. Melissa Armstrong. DLB caregivers who lost a loved one during the study completed interviews. A team of researchers read through the interview transcripts and used a qualitative research process to organize information into themes. This page outlines the most important themes from the interviews, covering prolonged grief experiences former caregivers have in common, what has helped them, and their hopes for the future. We know that no two grief experiences are the same. We hope you’ll find useful tips and encouragement from the experiences of others who have lost a loved one to Lewy.
If you would like to view this content as a PDF booklet, please email DLB-Support@neurology.ufl.edu.
Contents
- What you may be experiencing
- Anger
- Relief
- Recovering from caregiving
- Anticipatory grief
- Others not understanding
- Comparing your grief to others’
- Guilt and regret
- Missing your loved one before Lewy
- Grieving a lost future and unfulfilled plan
- Ups and down
- Haziness and difficulty concentration
- Feeling stuck and disconnected
- Shifting identity and purpose
- What might help
- Being with people who understand
- Emotional support from others
- Socializing and doing things with other people
- Getting back to old hobbies and activities
- Trying new things and travelling
- Exercise and getting outside
- Self-acceptance and giving yourself permission
- Remembering the good times
- Memorial practices
- Spiritual practices and connecting with a faith community
- Therapy and counseling
- Hope for the future
- This is a new season of life, a new chapter
- Letting go of regrets
- Grief can get easier and lighter
- Finding meaning by giving back
- Embracing being alone
- Connectedness and compassion for others
About the PACE-DLB study
The PACE-DLB Study enrolled pairs: a person with moderate to advanced dementia with Lewy bodies and their main caregiver. After the death of the person with Lewy, we continued to follow-up with the caregiver for up to a year. Former caregivers completed survey questions and an interview about their grief experience 6 months and 12 months after their loved one’s death. A total of 58 former caregivers participated in these interviews, completing 41 interviews at 6 months and 51 interviews at 12 months after the death.
About the LBD Life Lab
The LBD Life Lab is an interdisciplinary group of researchers and clinicians devoted to improving the lived experiences for those with Lewy body diseases and their loved ones. The LBD Life Lab is a part of the University of Florida Department of Neurology/Norman Fixel Institute for Neurological Diseases.
Additional Voices
We sought input from people with experience in grieving and post-grief care to develop this resource. Throughout, you will see their perspectives integrated. We hope you find encouragement from their insights. Our thanks go out to the contributors:
Clinical Associate Professor,
UF Counseling and Wellness Center
Manager of Pastoral Care and Pastoral Education,
UF Health Department of Pastoral Services
What you may be experiencing
Every grief experience is unique. What you feel after the death of the person you cared for will likely look different from the grief others experience. Grief is influenced by many things: your relationship to the person (spouse, child, or friend), what kind of relationship you had, what their illness was like, how much support you had during the difficult days, and many others. Despite these differences, we noticed former caregivers often expressed similar experiences in their interviews. We have summarized some of these experiences here. You might find themes in this section that you identify with. You may also notice themes that don’t apply to you. Either way, we hope what you read helps you better understand what you’re going through and know you’re not alone.
Anger
It is hard to watch a loved one suffer. You saw firsthand the changes your loved one experienced physically and mentally. You might be feeling anger as you continue to make sense of what they went through with Lewy. You might also feel angry that they’re no longer here.
Wife, 12 months post-death
“The one thing that I think has been the hardest is the anger that he is missing out on so much. So many things. You know? It’s not fair that he was taken so quickly.”
Relief
Many former caregivers we spoke with expressed relief that their loved one was no longer suffering:
Daughter, 6 months post-death
“She had such an undignified end and she didn’t want to live like that. Mostly I felt relief. Grief, of course, but relief has been very prominent.”
Caregiving can get more demanding as people approach the end of life. Many former caregivers also expressed relief to no longer be caregiving:
Wife, 12 months post-death
“Caregiving had gotten so intense, and so difficult, and, um, that when he died — but the, the overriding emotion was relief. I mean, there were lots of other ones, but I just was so relieved not to be caregiving.”
Recovering from caregiving
Caregiving is physical and emotional labor. Some former caregivers needed time to recover from these demands after their loved one’s death and attend to neglected health issues:
Wife, 6 months post-death
“My body kinda was shot taking care of him.”
Wife, 12 months post-death
“I had hurt my back when he fell on me and my knee. I had surgery on my knee and all these different things. So [after his death] that was time that I had to take care of myself. … It was good for me just to get involved in taking care of myself finally.”
You might be feeling worn down and burned out. Prioritizing rest will help you to physically and mentally recover. Now is a great time to attend to your own health that might’ve gotten overlooked while you were caregiving.
Anticipatory grief
As you were caregiving and watching your loved one decline, you may have already been grieving them before they died. This is a process called “anticipatory grief” or “dementia grief.” Many former caregivers felt anticipatory grief:
Brother, 12 months post-death
“My brother, the kid I grew up with. That person was gone before he was gone.”
Sometimes the anticipatory grief helped former caregivers feel less pain after the death or find closure more quickly:
Brother, 12 months post-death
“It makes it easier to accept what’s happening during the process of caring for someone with dementia and also in the grieving process because you have already accepted gradual losses as you go along.”
However, anticipatory grief does not always make grief easier, as was the experience for a different former caregiver:
Wife, 12 months post-death
“I’ve been grieving watching him, get worse and worse. And I was surprised at how hard his death hit me. It was like a whole different level of grief. And I thought I was done with [it] because I’d already grieved, but I wasn’t.”
Others not understanding
Being a caregiver is a unique experience. People you know who were not involved with your loved one’s Lewy journey might have a hard time understanding what you’re going through after their death. People might expect you to feel things you don’t feel:
Wife, 6 months post-death
“There was one person, I think she was upset because I wasn’t more upset [after his death]. And I understood what she was saying, but I just was feeling relieved, you know, just—tremendous relief and, and freedom.”
People might also say unhelpful things:
Wife, 6 months post-death
“People impose their ideas and their thoughts like they’re trying to be, uh, wellmeaning
but at times it’s not that helpful.”
Comparing your grief to others’
You might find yourself comparing your own grief to others’ grief who have lost loved ones in different ways. This former caregiver’s husband declined over a long period of time. When he passed, she felt like his death was expected and that she had time to prepare. Her friend had a different experience:
Wife, 12 months post-death
“I noticed my friend whose husband died very suddenly. That was just a totally
different thing [from Lewy body] you know? And she struggles a lot more now, but
it’s hard to avoid that when you weren’t prepared.”
A different caregiver felt peace that it was her mother’s “time” to go, compared to other kinds of loss that she had seen:
Daughter, 6 months post-death
“She was older and sick for a long time, and I think that’s a different kind of sadness and grief trajectory for most people compared to, you know, I see little kids who have terrible injuries or young adults and kind [of ] really awful circumstances. So mom was ready and all that. … I can put it in perspective a little bit easier.”
Not all deaths for those with advanced dementia are anticipated. Sometimes they can be sudden after a fall, infection, or other medical issue. If your loved one’s death was unexpected or you didn’t feel prepared, your grief might look different from others’.
Guilt and regret
Some former caregivers shared that they replayed difficult moments from caregiving in their mind, trying to figure out what they should have done differently. This former caregiver describes her experience with lingering guilt or regret:
Wife, 12 months post-death
“I still feel guilt at times thinking, oh, was I short with him at certain times or, you know, did I begrudge doing some things?”
Caregiving is hard. If you’re tired and overwhelmed, you might not have behaved exactly how you wanted to. Many former caregivers feel guilty about how they acted in difficult moments. Remember: you were doing the best you could at the time.
Missing your loved one before Lewy
As you grieve your loved one, you may miss the life you had together and who they were before Lewy body.
Wife, 12 months post-death
“I miss him. I miss his wit and his humor. Of course, I didn’t have that for, you know, the last couple of years of his life. … I get overwhelming feelings of missing him and what we had together.”
Grieving a lost future and unfulfilled plans
The sense of loss after the death isn’t always just for your loved one. You may feel a sense of loss for the things you had planned to do together and the future you had envisioned:
Wife, 6 months post-death
“We didn’t have a chance to retire and enjoy [life].”
Ups and downs
Some days you might feel “OK” or feel like you’re managing well. Other days might be more difficult. Many former caregivers expressed that their grief comes in waves, with big ups and downs:
Wife, 6 months post-death
“My emotions have been all over the place… Sometimes I think, oh, this is okay. I’m, I’m doing okay and then something will come up or, I don’t know. And then you fall backwards.”
These ups and downs might be related to important days and milestones like the first wedding anniversary without your loved one, or the anniversary of their death.
Haziness and difficulty concentrating
Grief can have impacts beyond the emotional. You might feel mentally hazy or have difficulty concentrating:
Wife, 6 months post-death
“Widow’s fog is a thing and I forget things a lot.”
If you’ve felt this way, try giving yourself more time to complete complicated tasks, and resting before and after activities that require effort and coordination.
Feeling stuck and disconnected
Some former caregivers expressed that they feel stuck, or disconnected from life:
Daughter, 12 months post-death
“I’ve just kinda felt stuck and disconnected to myself like my joy, my emotions, the things that I normally would do, my habits.”
After loss, it can take time to get back to yourself, your normal habits, and what you like to do. Try being patient with yourself if you feel like you’re in a rut. If the difficulty persists, resources like therapy and counseling can help you move forward again.
Shifting identity and purpose
You might also be experiencing a shift of identity and purpose. Caregiving can take over your life. When it is complete, you may be wondering who you are and what you want to do next:
Daughter, 12 months post-death
“I’m kinda wondering where I’m gonna go now. I’ve reconnected with all my friends, and my family. But, um, now it’s kinda like, okay. Now where,– where am I now, you know? Where am I going now? What do I wanna do now?”
There are many new possibilities open to you in the future. This might feel overwhelming, exciting, or a mixture of both.
What might help
We asked former caregivers what they found helpful during their grieving process, and what sources of support they have relied on. Everyone’s experiences and personality are different. You might find strategies here that you have already tried that don’t work for you. You may also find some new ideas to try in the future.
Being with people who understand
Many former caregivers immediately identified being with people who understand what they’re going through as a source of support:
Wife, 6 months post-death
“You need to be able to talk to people that have gone through the same thing. I talk to my friends who haven’t lost a husband too. But they haven’t gone through it, and they don’t know exactly what you’re feeling. Whereas the people who did do the caregiving and have lost their husbands, they know what you’re feeling. They understand. So being able to talk to them really helps.”
This might happen organically with friends who have experienced loss. Or, you may have to seek out people with similar experiences through participating in a grief support group. Joining a grief group might be a little bit outside of your comfort zone, but many caregivers found these groups helpful. This former caregiver was hesitant to join a grief group at first, but eventually was glad she did:
Wife, 12 months post-death
“[At first] I didn’t want to go because I didn’t want to hear everybody else’s sad story. I already had enough sad. But, um, the way that it helped me wasn’t hearing everybody else’s sad story, it was hearing how people got through the issues and the problems that I was facing as well, and the– hearing other people talk about the emotions that they had gone through and the things that they had gone through and realizing, oh, so that is normal. I’m not quite crazy.”
Some former caregivers who joined grief groups did not find much in common with the other members, or felt like the group sessions brought their mood down. Others did not try grief support groups at all, but kept attending the caregivers support groups they participated in when their loved one was alive. Regardless of where the connection comes from (grief group, support group, or friend), former caregivers overwhelmingly agreed that being with others who understood caregiving and loss was helpful.
Emotional support from others
Former caregivers also shared that relying on emotional support from friends and family was helpful. For some people, this involved saying “yes” to those who offered to help, or responding to those who checked in. For others, this involved being intentionally honest about how they were doing and reaching out to others when they were having a rough time:
Wife, 12 months post-death
“It used to be that, you know, I really didn’t say anything when I was feeling a little sad and now it’s kind of like, you know, I kind of give a heads up to the kids that, hey, I think this is a difficult week coming up and they all know, you know, but I put it in words. So that’s helpful.”
It may be difficult to find people you feel comfortable opening up to. Or it might be difficult to ask for help from the people you know. If this is your experience, online grief forums or grief pages might be a good option for finding support.
Socializing and doing things with other people
Support from other people doesn’t always have to involve sharing your feelings or talking through your grief. Many former caregivers found that just getting out of the house and doing things with other people was helpful:
Wife, 12 months post-death
“I have needs to be distracted, um, like a friend always goes to the theater, oh, you know, and always gets tickets for me. Um, she’s very active. And I just go along with her.”
Getting back to old hobbies and activities
Many former caregivers found it helpful to get back to previous hobbies they were unable to do while caregiving:
Daughter, 6 months post-death
“The thing that’s been helping me the most is, um, getting back to my, um, activities that I used to do prior, um, like, for instance, softball. So, I’m back to playing softball three days a week. So, I’m with — engaging with other people, my friends again.”
Trying new things and traveling
Some former caregivers found that trying new activities and getting out of their comfort zone was helpful:
Wife, 12 months post-death
“I’m not saying no to anything. If things come up, I’ll — I always will agree to do it and check it out unless, you know, something crazy.”
Chaplain Dr. Debra Lee-Hepburn on activities and trying new things:
“When you come out of the caregiving environment, you have to look for something different. You have to find a different expression that is meaningful to you. Maybe you do not have the money to jump on a cruise, but you can learn how to resource for yourself and for your spirit in ways that still bring you life. Pay attention to what makes your spirit feel alive. There is so much in the world that does not cost money.”
Exercise and getting outside
Exercise was frequently used as a source of support for former caregivers’ mental and physical health:
Wife, 12 months post-death
“I was a big walker before. Now I walk four to eight miles a day. Um, I walk everywhere. Sometimes it’s, you know, out, I get out, I go to the forest to do a walk, but a lot of times it’s just, I walk to the grocery store, I walk to wherever I need to go. And, um, exercise really helps, um, with the grief process.”
Sometimes the benefit of exercise is not just the activity, but getting outside and appreciating nature. The outdoors were a mood booster for this former caregiver:
Wife, 12 months post-death
“If I’m in a low mood, if I go for a walk, the endorphins or whatever, are in my body pumping me up. And they just make all the worries and sadness and everything go away because there’s so much natural beauty that how can you get all tangled up in sadness?”
Self-acceptance and giving yourself permission
The many ups and downs of grief can make it hard to muster the energy to do the things that might be helpful. Many former caregivers expressed feeling this way. This former caregiver shared her strategy for working through the harder moments with self-compassion and acceptance:
Wife, 6 months post-death
“I just try to be very kind to myself, and I don’t push myself to do things if I’m not in the mood or I’m tired or just try to be kind to myself as much as possible. You know, like, when I–, if I have something going on, I try to focus on only one thing at a time so I don’t get overwhelmed with things. That’s–, I guess that’s the biggest thing. That’s just to focus on the moment and try to, um, not put a lot of pressure on myself.”
Remembering the good times
As you’re grieving your loved one after Lewy body, it might be hard to remember the better times before their illness and the good memories you had with them. Some former caregivers expressed that they found it helpful to take time to reminisce and look at old photographs:
Wife, 12 months post-death
“Going through [pictures of ] him reminds you, this is what your life was. Your life wasn’t just during that illness. Your life was all these years. The illness was a small portion of your entire life. And so you look at the pictures, and you have these good memories, you know. I started looking at pictures and said, Oh, yeah. I remember that. Oh, that was fun. Remembering, you know, good times.”
If your relationship with the person you cared for was difficult throughout your life, there may be few or no warm memories to look back on. Know you’re not alone if the feelings described here don’t apply to your experience. Perhaps instead of looking back at memories, you can focus on making new ones for yourself.
Memorial practices
One way to focus on who your loved one was before Lewy and remember the good times is to celebrate their life and who they were. Perhaps you already had a funeral or celebration of life. These practices can continue in small ways beyond that event. Some former caregivers had regular get togethers with loved ones where they shared favorite memories of the person. Other former caregivers put up small memorials around their home, like a painted stone for the garden or a photo shelf. These small practices helped caregivers remember and cherish the better days.
Faith and spirituality
Many former caregivers found comfort and community by connecting with their local places of faith. The support from others in a faith community can help you navigate grief and find a new purpose. Perhaps there is a faith community you’re already connected to. If not, many local places of faith eagerly welcome newcomers. You might also find meaning in individual spiritual practices like meditation, gratefulness, and yoga.
Chaplain Dr. Debra Lee-Hepburn on faith and spirituality as a support:
“If you have a community of faith or a spiritual practice that is meaningful to you, then you already have something you can draw strength from. Stay with it. Do not allow grief to disconnect you from your spiritual self. Even in your sorrow, remain rooted in the practices that have sustained you.”
Therapy and counseling
If you feel stuck or don’t feel like you have the support you need, individual therapy and counseling is an option that many former caregivers found helpful:
Wife, 6 months post-death
“I talk to a counselor every two weeks and it’s been very helpful… As far as having a–not detached– but an observation, you know, what was going on, what my feelings were, what I was up against, what was working, what wasn’t working, that kind of thing.”
If you’re not ready to talk to someone, journaling can be a helpful step. Expressing your difficult thoughts and feelings, even if they aren’t directed to a person, can be a good tool for coping with grief.
Dr. Phillip Daniels on therapy and counseling:
“You might find yourself in some moments where it’s really difficult to make decisions, and to decide if you need help right now. That’s the point of therapy and counseling. You don’t have to be sure what you need, you can just talk. You don’t have to go back if you don’t want to. I think of it like a dentist. If you don’t have a dentist and have a dental emergency, it’s really hard to find someone last minute while you’re struggling. But, if you find a dentist and set up an appointment, even if you go just the one time, at least you know who to call if you have a need in the future. Try it out and talk it out.”
Hope for the future
Despite the challenges of grief, we noticed many former caregivers expressed positive experiences during their grief and hopefulness. Maybe you have already had positive experiences during this time, or have found reasons to look forward to the future. Maybe you feel like you’re struggling and can’t imagine a future with anything good in it. Wherever you are in your journey, we hope you take comfort from the hopefulness of others, knowing these same positive experiences can be possible for you.
This is a new season of life, a new chapter
Many former caregivers expressed that they chose to see this time after loss as a new chapter or new season in life:
Wife, 12 months post-death
“I don’t think of it as ending, but it’s like a new chapter. And I feel very grateful for what…for the number, amount of time, the length of time I had with him.”
Focusing on the new possibilities that were open to them helped some former caregivers approach the future with hopefulness:
Wife, 12 months post-death
“I never in a million years would believe where I am now compared to where I had been because I was so overwhelmed with his illness and, um, trying to keep things normal, and it’s tremendous. I feel I am a monarch butterfly coming out of their cocoon. I can really exhale.”
Letting go of regrets
Feeling guilt and regret after a loved one’s death is common. However, we found that several former caregivers expressed the opposite: They worked hard to accept that they had done everything within their power for their loved one. Intentionally thinking in that way did seem to help some former caregivers find peace:
Wife, 12 months post-death
“I think the overall thing after [my husband] passed away and, and the dust settled and everything, the thing I feel is almost like a sense of, um, I saw [de-identified] to the end. I tried to make sure he was as safe and as comfortable and, and, and, and that he knew he was loved and all of that. So I kinda feel like my mission, my job, I completed and I take a great deal of satisfaction in knowing that.”
Another former caregiver expressed struggling with guilt and regret before resolving those issues with a counselor.
Grief can get easier and lighter
The passage of time can play a role in easing intense emotions. Several former caregivers described how with time, their grief became lighter and easier to manage:
Wife, 12 months post-death
“It’s gotten a little bit much easier over the last, you know, six months, as I said before, you know, time changes things. … I can forget about things and, and she’s not on my mind constantly like she was for, for three months.”
Time may not get rid of grief, but knowing that grief can feel less heavy in the future might help you in the difficult moments when it feels overwhelming.
Finding meaning by giving back
Several former caregivers shared how they had found meaning and purpose by volunteering and giving back to their communities. This former caregiver met that need by volunteering with a community organization:
Wife, 6 months post-death
“I’ve gone back to volunteering at Habitat for Humanity one day a week… I feel better volunteering again and giving back.”
Other former caregivers found it meaningful to offer support to others who were still caregiving:
Wife, 6 months post-death
“That’s another thing that they [support group members] call on me for is when somebody –their husband is kinda newly diagnosed with Lewy or newly diagnosed with dementia and having trouble with it, she’ll get me in contact with them so that, so that I can talk with them because I’ve been through the Lewy situation. … So that’s the support with this particular disease that we can give each other is our experiences with Lewy.”
There were some mixed experiences among former caregivers who supported others who were still caregiving. One person found that helping caregivers brought back bad memories from her loved one’s illness. Another person felt that she needed to take a step back from trying to help others through Lewy in order to take care of herself and find peace after her husband’s death. Finding ways to support those who are still caregiving could be a source of hope and meaning for you, but it may become a burden. Whatever opportunities you explore, we encourage you to pay attention to how you’re being affected.
Embracing being alone
Losing a loved one is an adjustment. Perhaps your loved one died at home and you feel their absence. Maybe they had moved to a facility prior to their passing, so you had time to get used to the empty house. Either way, learning to navigate life without them can be daunting. Many former caregivers we spoke to expressed that they had to learn how to be alone. Even in this learning process, several former caregivers found that they have begun to enjoy their independence and alone time:
Wife, 12 months post-death
“I’m comfortable by myself, and if I’m bored, I can take myself to a movie or to entertainment or up to dinner. Um, I, I can and I do those things.”
Wife, 12 months post-death
“I enjoy doing things by myself. I love walking on the beach. It clears my head, and it gives me time to start my day.”
You may not enjoy alone time right now, but there may be things about being alone that you can cherish, or activities you can build into that time to make it more manageable.
Connectedness and compassion for others
Some former caregivers described that they felt a heightened sense of connection and compassion for other people who had experienced loss, despite dealing with the day-today challenges of their own grief:
Wife, 6 months post-death
“My husband’s death] made me a more resilient person, more empathetic, more, I guess in tune with people and loss.”
A different former caregiver was grateful for her own experiences and felt that they enabled her to be more present with other people:
Wife, 6 months post-death
“It was a wonderful growth experience as a human being [caregiving and losing loved one]. It was truly in the — in the most extreme sense– experience in life, which is not all ups. … If you never experienced hard times, how can you really relate to someone? How can you sit next to them and be present with them and their tragedy, if you have no concept of what that is? So, it’s good to have — to have the whole range of life experiences so that you have a better understanding and you know what truly matters.”
Caregiving and losing a loved one to Lewy body is a profoundly impactful experience, and one that need not be isolating. From what former caregivers expressed to us, the depth of their own pain allowed them to connect with other people on a level that was not possible before.
Chaplain Dr. Debra Lee-Hepburn on how grief connects us:
“You have been given a gift, even in your grief, to make the world a better place. When you become part of a community of people who have survived what you have survived, it strengthens all of us and deepens our capacity for love and compassion. You will carry what you have lived through for the rest of your life, and you will draw from those lessons. Others will find their way to you. And when they do, you will be able to sit with them, speak with them, and help guide them through what you already understand.”
Special thanks to the following for their help developing this resource:
Hannah F. Jury, MPH
Noheli Bedenfield, MHA
Melissa Armstrong, MD
Susan Bluck, PhD
Philip Daniels, PhD
Debra A. Hepburn, DMin