[00:00:02] Speaker A: Those living with dementia, those caring for people with dementia. This whole anticipatory grief is huge, right? Because you're essentially grieving every single day. The person is still living. But you have to function, you have to keep moving because life doesn't stop.
[00:00:34] Speaker B: Welcome to the Age of Aging, a show about living well with an aging brain. Produced by the Penn Memory center and the Michael Nadoff Communications Hub. I'm Jake Johnson.
Loss is a common theme for those impacted by dementia.
The neurodegenerative diseases that cause dementia, like Alzheimer's, frontal, temporal and Lewy body disease often rob a person of their memory, their orientation in the world, and their sense of identity.
Loss for the loved ones of those with the condition can be less straightforward and confusing, but nonetheless devastating.
Today's episode is about the complex sense of loss and grief that dementia brings into our lives. Straight from the family members who have experienced it firsthand, we will hear the story of Eileen Ware, whose husband's early onset Alzheimer's diagnosis flipped the lives of her and her two kids upside down.
Then Dr. Cindy Weinstein reflects on the decades of grief she has worked through in the wake of her father's Alzheimer's. But we'll start this episode with a poem from Dr. Jason Karlewish titled Ambiguous Loss. Ambiguous loss is a term we've discussed on the show before, and it refers to a kind of loss that is unresolved or lacks closure.
Social scientist Dr. Pauline Boss developed the term in the 1970s around the families of soldiers missing in action during the Vietnam War.
These people were physically absent, but their loved ones lacked psychological closure. Dr. Boss eventually expanded the theory to the loved ones of people with dementia whose friend or family member is physically present, but there's a psychological or emotional absence. Now Dr. Karlowish will first read his poem, and then he and Terence Casey will follow the reading with a short discussion.
Before we jump into the show, a word from our sponsor.
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That's R-O-T-H-K-O-F-F L A W.com ambiguous loss she'd sensed something was missing. Memories were landscapes to a blind eye, a symphony to the death, a feeling of unremembered pleasure.
He, the engineer, became the artist. Notes on the refrigerator. Bathroom mirror. The back door. Close. Me, take your pills. Leash the dog. Small paintings, signs asking for help.
Time became recomposed. Two sonatas played asynchronously, following different tempos. A disharmony on a theme about consciousness.
[00:03:38] Speaker B: They say home is best.
[00:03:39] Speaker C: It's where the heart is. So when he told her, I want to go home, she wondered, what has he lost, his heart or his mind?
[00:03:47] Speaker B: They ask, what's it like?
[00:03:50] Speaker C: It is beating without a pulse, breathing without a breath. The feel of not to feel it and not. But it is moments of pleasant pain.
He gives her that look, exhales, and asks, how you doing?
And then apologizes.
The last of the ambiguities came with hospice. They gave her a kit, a little box of drugs to sedate, to obliterate what remained of his mind.
She kept it in the refrigerator beside the jams and jellies. This, they instructed her, was not to keep it cold, like milk and eggs, but to remember where to find it.
[00:04:29] Speaker D: Thanks for sharing that, Jason.
[00:04:31] Speaker C: You're welcome, Terry.
[00:04:32] Speaker D: I think for a lot of listeners to the show, maybe people who haven't known yet as well as we have, they might be surprised that a physician, a researcher, and a prose writer would tackle a topic like this through a poem. Why? Why a poem?
[00:04:46] Speaker C: Yes, I am now officially. Well, actually, this is my second published poem.
The first was so many years ago, I don't even care to try to count. It was done in medical school.
[00:04:56] Speaker B: Why a poem?
[00:04:57] Speaker C: You know, because in a poem, every word counts.
And so this was a real opportunity to convey, as precisely as I could, this big, enormous experience called ambiguous loss and the ambiguities that surround what it's like to live with or care for someone who's living with dementia.
[00:05:17] Speaker D: And one of the carlocisms, as we call them in the office that I caught in this was the line of, I want to go home. I've heard you talk about this many times over the years, that home can mean many different things to many different people, particularly those with a damaged mind.
What were you envisioning in this, in this piece? What did home mean in this context?
[00:05:38] Speaker C: Home is best. It's where the heart is. And he says, I want to go home. So, I mean, what I was getting at is among the many ambiguities, contradictions, things that don't quite seem to make sense. With dementia is, you know, when someone says, I want to go home, is it because they don't recognize the place that they are in that is their home? Is it because they have this feeling of home that's no longer being satisfied by the place they're in? Or have they completely lost their mind and have no perception of home or the feeling of home or something else? No.
[00:06:10] Speaker D: And word choice matters in poetry, as you said. But even in 2000 word pieces, I know you and I will sometimes get into a fit of spars about word choice.
[00:06:20] Speaker C: Civil war kills.
[00:06:21] Speaker D: It's why I was so surprised that you had used the word obliterate. I don't think that I have heard you use that word or seen you write that word much in the context of a damaged mind.
You talked about, is that a kit of drugs to sedate, to obliterate what remained of his mind? Is that your perspective as a clinician, or is that the caregiver's perspective or a patient's perspective?
[00:06:43] Speaker C: Well, yeah, obliterate was a strong word. I tend to use punchy language, I admit. And it was intended to relay this idea that, you know, the drugs in a hospice kit for dementia include morphine and Anivan and Haloperidol. And at the right doses, those drugs will obliterate your mind.
Yeah. You know, yeah.
[00:07:09] Speaker D: Then just as quickly, we'd pivot to talking about the jams and jellies in the fridge. Uh, I. I found that amusing. I. I don't think of my. My own fridge as containing medicine, but I think that was also the point. In here, it's not to refrigerate and keep it cold, but because it was easily accessible. Is that an actual strategy that. That you recommend to patients and caregivers?
[00:07:31] Speaker C: Um, yeah. This. That. That line that you picked up on as well, as many of the lines in this actually come from my clinical experience. Is this poem, like. Frankly, much of what I write is a good example of, you know, my patients are my best teacher.
They and their caregivers are some of my best stories.
And, you know, you. You play with the facts a bit sometimes just to hide identifying information or whatnot. Usually that's the reason. But, yeah, this, that. That particular thing comes from. I remember a. A caregiver whose wife had been enrolled in hospice or was enrolled in hospice, and I. I really connected with him on a number of levels. And one of them was he had a. Despite it all, he had a wit. And I remember him telling me, you know, while she's in hospice and they gave me this kid, it's got Haldol and morphine and Ativan, and they told me to keep it in the refrigerator. Not because it needs to be kept cold, but that's a good way to remember where it is.
And I think he picked up on sort of like the ambiguities and ironies of dementia, which is, you know, you're doing something that actually is kind of absurd, but there's a reason for it. Well, put it there. Not because it needs to be cold, but you don't want to forget where it is.
[00:08:42] Speaker B: Sure.
[00:08:43] Speaker C: And I mean, that's what underlies this entire poem is, you know, he, the engineer became the artist. So he was an engineer, but now he's an artist painting little signs to remind him to do things, you know, leash the dog, et cetera. By the way, that comes from Dan Gibbs.
He talked about that, that their life is like all dyads, at least a duet, a symphony. And yet now they're literally becoming two sonatas, separate music being played in different tempos and so on. I mean, throughout the poem, I'm trying to point out the inherent almost contradictions you're forced to live with when you're living with dementia.
[00:09:22] Speaker D: That concept of two sonatas being played at once, is that. Is that a Carlos or is that. Had you heard something like that from a patient or caregiver as well?
[00:09:33] Speaker C: I can't say I have. I will say that. That probably, but. So that's me interpreting. But there's no question that one of the experiences of ambiguous loss that family members report is the difficulty of understanding what it's like to be the relative.
And it's a. It's a sad moment in the course of. Of caring for someone when the answer to the question, you know, what is it like to be, you know, your relative?
I mean, it's a question of third person mind perception, when the answer to that is I really don't know. And in some sense what's happening there is that the prior duet that was played of a two minds and kind of a harmony and synchronous harmony, if you will, are now asynchronous. Yours is doing what you do, mine is doing what I do. And that feeling of connection, of harmony has been lost. Different tempos, if you will, et cetera. Yeah. A disharmony, if you will. Sure.
[00:10:24] Speaker D: Now, you mentioned that you often are drawing from your. Your clinical experience in, in writing not just poetry, but essays for various publications is obviously, as a writer, you. You benefit from, from these experiences. But as a clinician, do you benefit from writing about your patients as well?
[00:10:45] Speaker C: Oh, yeah. Yeah. It very much helps me make sense of what's going on.
There's no question that it's one way to sort of put together what is it that I've witnessed and heard is to write about it. And indeed, when I write my chart notes, I'm often writing them with the idea that I need to get this down as a writer as opposed to this document for billing purposes. I mean, there's no question. So my chart cuts are very glib and just bullet points. But there's moments where it's like, I gotta get this down just the way I've heard it, because it matters a lot for me to understand what's going on so that the world of the writer and the doctor, in that sense are very commingled.
[00:11:20] Speaker D: Excellent. Well, I appreciate you sharing both your poem today and your insight with the age of aging.
[00:11:25] Speaker C: Yeah, you're welcome. It's a pleasure.
[00:11:33] Speaker B: Thanks to Dr. Carlos for his poem Ambiguous Loss, which was published in the March 4 edition of Jamaica. We'll link that in the show notes.
We turn now to two personal stories that show the unique and tragic relationship between dementia and grief.
Our first story is from Eileen Ware, whose husband Steve's diagnosis of early onset Alzheimer's at 54 completely reshaped the world of her and her two kids, Cole and Jacob.
[00:12:02] Speaker A: Steve and I met in 2004.
At the time, he was a detective in the Salem prosecutor's office. And I had just moved back probably two years prior from Miami. And my twin sister had always done this run from Philadelphia to Washington, D.C. for fallen police officers. And she had invited me, and unbeknownst to me, I met Steve at the fundraiser for that in 2003. And that year he had done the run with us. But it was there that we realized how competitive we all were, even my sister, myself and Steve.
And so about six months after that, we were engaged.
And six months later, we were married. And then a year later had our son Jake.
[00:12:51] Speaker B: In 2017, at age 49, Ware said Steve was fortunate enough to retire early from the police force and spend more time with the kids.
[00:13:01] Speaker A: He went on to become a school resource officer around here, which allowed him the freedom to have summers off to be with the boys. He was there, their first soccer coaches, their first flag football coaches. Very, very involved. And, yeah, he was just an amazing guy.
[00:13:18] Speaker B: Like many caregivers, Ware said that looking back, there were certainly some early signs that she recognized as only in retrospect Steve's mood changed. He seemed a bit depressed, she thought, but attributed it to the transition of retirement.
Then Covid hit, and with everyone home, Ware was able to notice more changes than Steve.
He would repeatedly forget things she asked him to do or get in the car with nowhere to go.
[00:13:46] Speaker A: He would put the car in drive to go into reverse. And I was like, oh. And it wasn't in a nice way, where I was like, something's wrong. I was like, what are you doing? You think about it retrospectively, and you never think about, wow, something could be really wrong with him.
[00:14:04] Speaker B: Ware said she never would have considered at the time that Steve had dementia because of how young he was.
However, Steve's father had died of als, so they decided to get a few tests done at their local neurologist.
[00:14:17] Speaker A: It was there where he had that three short question test, remember three words. He couldn't remember them. Draw a clock. He drew a circle, and all the numbers were on the outside.
And my heart just sank. I was like, something is really wrong. And the doctor said, you need to get to Penn Memory.
[00:14:39] Speaker B: In spring of 2021, they were able to see Dr. Carlo Ashwer said, who diagnosed Steve with early onset Alzheimer's with the potential for Lewy Body Disease.
[00:14:49] Speaker A: You start grieving in that moment. You may not know it's grief, but the life that you thought you were gonna have is flipped upside down, and you move towards living in the moment and figuring out what you had to do. I had to go from part of a team, because we always saw ourselves as a team, to the single parent of two young boys, now a caregiver of a disease that I had no idea about, and continue to work full time and run the household.
Those living with dementia, those caring for people with dementia, this whole anticipatory grief is huge, right? Because you're essentially grieving every single day. The person is still living, but you have to function, you have to keep moving, because life doesn't stop and you find moments to grieve.
I would. It would be in my car for me.
It would be in my closet because I didn't want the boys to worry about me. They saw me cry, they saw us all cry. But I think that's also healthy, right? So you shouldn't have to hide your emotions, but you have to keep going. And that's what I would always say, because I knew Steve would want them to keep going.
[00:16:10] Speaker B: Ware said it was watching Steve's relationship with their sons change that brought up the most intense feelings of loss for her.
[00:16:18] Speaker A: He would get really upset about the boys. And I know even though he couldn't verbalize it, his emotions would show. He was worried about them and I kept reassuring him. And that was heartbreaking to me. To watch someone who was always their biggest cheerleader doing drills in the backyard with them or lifting weights or coaching them, watching that go away was heartbreaking.
You think about kids who are or boys 10 and 14, they're at those most crucial time where you need your dad, need your dad in your life.
[00:16:54] Speaker B: Steve lived another four and a half years following his diagnosis. And towards the end of his life, Ware said he began experiencing some hallucinations, which are commonly associated with Lewy Body Disease.
Fortunately, she said he had as peaceful a death as she could have hoped.
[00:17:11] Speaker A: I never thought that it was going to be that quick. Part of me is grateful that it was because for those who have never had to watch someone lose their abilities when they were once so fit and strong, it's devastating.
And I think when you have kids, it adds to it.
[00:17:32] Speaker B: It's been a little over a year since Steve's death and where is staying involved in dementia advocacy.
She recently started her own podcast and website called Surviving the Now with a friend she met the Alzheimer's gala in Philadelphia.
We'll link to that in the show notes.
She said currently she has good days and bad days and continues to grieve.
[00:17:54] Speaker A: I don't think I felt the exhaustion, both emotional and physical, till probably around six months after because I was went right back to work. I didn't take time off for myself, which probably is a not a smart thing, but I wanted to go back right into work and because that was my purpose. But I'm at this point now and two weeks ago I lost my mom. So I'm on a whole new level of grief that I am taking time for myself right now because it's what I need.
It's what I need to become a better version of myself. It's what I need to rest and recharge. I've decided over the past year, through advocacy and helping other people and making sure the boys are okay, that you can have grief and joy and happiness all in the same moment, all in the same day. And you just have to learn how to live like that because grief can take you down. Grief is not linear.
You know, you have a lot of people who tell you how you should feel, what you should be doing, and you get to this point where you know people are going to judge you, and that's okay. But you know what You've walked through, you know what you've endured, and it's okay to lose people who don't suit your life anymore. And the people who you thought were going to be there may not be. And that's okay. Everyone's busy. And I said this earlier, life goes on even when your world feels like it's stopped completely. So it's just a learning process, learning how to live with joy, with grief. Feel those moments when it feels sad and. And then get up, though. That's the big thing. Feel it for a short time, but keep going.
And the boys. The boys keep me going. They're incredible humans, and I'm blessed to be their mom.
[00:19:56] Speaker B: Thanks so much to Eileen Ware for sharing her story.
Our next story is about dementia and loss in a different context. It's about a daughter's loss of her father and a grief she has been working through for decades.
Here's Dr. Cindy Weinstein, professor of English at the California Institute of Technology.
[00:20:17] Speaker E: My most recent book was a memoir with Dr. Bruce Miller at UCSF called Finding the Right A Story of Literature. Grief in the Brain.
I was always very, very close to my father. When I was in my mid-20s, I was a graduate student at Berkeley in the English department.
And my dad started changing mood.
He seemed depressed. He was much less interested in having conversations over the phone. That was unusual. We chalked it up to the fact that he was retiring.
You know, there's always, like, a reason why someone's mood changes. At least in the 1980s, when my dad was getting sick, like, one didn't automatically, like, go to Alzheimer's. And then I remember my boyfriend, now husband, went with me to New Jersey to visit my dad. And I remember saying to Jim, this isn't my dad. I don't know what's going on. But he seemed very depressed. And then finally, my third year in graduate school, my mom called and said dad had a diagnosis of Alzheimer's. And in those days, there wasn't precision diagnosis, so everything was Alzheimer's.
[00:21:40] Speaker B: Dr. Weinstein's father lived for 15 years following his diagnosis.
She said the duration of the disease and living on the other side of the country complicated the loss she felt for him.
[00:21:52] Speaker E: For many people, it's the duration of the dementia that, at least for me, makes the grief so complicated because at a certain point, I forgot my dad was dying.
It just went on for so long that I forgot what was happening or denied what was happening. I'm not exactly sure.
And so when my brother called and said, come to Florida this Is it? I was, like, hearing it for the first time.
It was so strange.
[00:22:23] Speaker B: Another complicating factor for her own grief, Dr. Weinstein said, was a decision her mother made as the primary caregiver.
[00:22:31] Speaker E: My mother didn't want my dad to know what was wrong with him.
My mother was sure that my dad would kill himself if he knew. And he had said things along the way, like in his 40s and 50s, never attached to. We didn't even know the word Alzheimer's. But there was this sense that if something terrible happened to him health wise, like, he would just want to end it sooner rather than later.
So we were not allowed, as it were, to tell him what was wrong. But I just remember him knowing something was wrong and me not being able to be honest with him. And that was excruciating.
My mother absolutely did the best she could. No, no two ways about it.
I don't think she could have anticipated what it might do to each of the children not to be able to have that moment with dad where you can cry with him, you can talk to him, you know, how do you want to live out your days, Right? Like all those very hard conversations that I wish I had had. But my mother was the primary caregiver. I would soup in, you know, from California, stay as long as I could. But her wishes needed to be honored.
[00:24:01] Speaker B: Dr. Weinstein said that on top of the duration of the dementia and the denial of the disease to her father, her academic instinct intellectualized the disease to herself and numbed her to the grief for many years.
[00:24:14] Speaker E: I write in the book about basically giving myself an anesthetic that would put out a elephant. It lasted a really, really long time. And then when it wore out, and that was about maybe nine months after my dad died, I was in terrible shape. And I didn't know. I didn't even know, like, what I was experiencing was grief, you know, for such a smarty pants. I didn't know. I also didn't know that I might consider myself a caregiver. You know, I always thought my mom was primary caregiver, which is true. But as we know, caregiving can take a lot of different forms, and there's a lot of collateral damage to the secondary caregivers, as it were.
[00:25:02] Speaker B: Dr. Weinstein explained that the memoir she would eventually write about her father began first as an essay she wrote about a time during the course of his disease when he and her mother visited her in Berkeley.
[00:25:14] Speaker E: Dad wanted something on his salad, and we went to the supermarket and had a heartbreaking experience. In the aisles of the supermarket, where my dad just couldn't come up with a word. And then finally he saw what he wanted and it was croutons.
And so I wrote an essay about that experience of being in the supermarket with my dad and trying to help him find a word and just how devastating that was. And I think that this word finding issue was so deep, I think, for everyone.
For me, it had the added component of me studying words for a living. I was becoming an English professor, getting my Ph.D. and kind of vacuuming up words and books as fast as I could. And hear my dad, words were like going through a colander.
[00:26:13] Speaker B: She said as much as she loved words, it was as though she didn't have the right words to conceptualize her father's dementia. Dr. Weinstein said when she began to write her memoir, she knew she wanted a neurologist to be a part of it, to help explain some of the science.
Ultimately, she connected with Dr. Bruce Miller, Director of the Memory and Aging center at ucsf, the founding director of the Global Brain Health Institute, and a key part of our season four finale, A Disease's Final Kiss.
[00:26:42] Speaker E: I was describing to Bruce Miller, the co author of the book, some of my father's symptoms, and he said, do you have any PET scans or MRIs? I said, no. He said, that's okay. I know what your dad had. He had early onset Alzheimer's with the logopenic variant. And that blew my mind, having such a coherent diagnosis. And then in between trying not to cry, we unpacked that together.
And early onset meant my dad was younger than 65. He was in his 50s. And the logopenic variant, from what I understand, is kind of a rare variant and word finding. And the specifics of word finding that I was describing to Bruce indicated for Bruce that that was the variant that he had. I think about the world in terms of books, for better or for worse. You know, I read Moby Dick when I was 16. I'm 65 now. I've never recovered. I love the Scarlet Letter. You know, it helped me to read about other people's grief, you know, imagined or. Or not. But what the science did for me was it helped position the experience my family had from the point of view of my father. So the science was about my father's brain. It wasn't about mine. And frankly, I was sick of mine.
And so what the science did was it was like your dad drove 50 miles to the supermarket that was a mile away, and the spatial circuitry in his brain wasn't working.
And that's why that happened.
[00:28:34] Speaker B: Dr. Weinstein's memoir features the split in language with sections from both herself and Dr. Miller. The final chapter, memories, explores the positive memories she regained in the process of writing and grieving.
[00:28:47] Speaker E: In the course of writing a book, I remembered all these things about my dad that I loved, that I had not been able to fully look at because it hurt so much to think about all these happy things.
And it was as if my relationship had started from the time of his diagnosis, which wasn't true. You know, I'd had all these years before that, a good 25 years before that.
So it was weird because I discovered that this disease that takes people's memory away had kind of taken mine away. And getting, getting those memories back was really wonderful.
[00:29:32] Speaker B: Following the release of her book, Dr. Weinstein became focused on outreach and advocacy for early onset Alzheimer's, telling her story at Alzheimer's Disease Research Centers, senior residences, and health humanities groups.
For the past year, she has run an early onset Alzheimer's grief support group.
[00:29:53] Speaker E: I try to kind of stay in the background, but one thing I did share that I thought was helpful was that I will never get over what happened to my dad.
[00:30:06] Speaker A: Never.
[00:30:06] Speaker E: They're, they're just, they said, I hope I don't.
I hope I remember that there are too many hard things, too many sad things, and to say that those will be gone in some way. No. And, and that's okay. To sound so corny, give myself permission, you know, to know that, like, the grief will just carry on.
I think it's especially the case in Western cultures and especially the case in the US where we think that, you know, there are these steps to getting over grief and we're all looking at our stopwatch and giving ourselves a certain amount of time to get over it. And that's just not how it works for most people.
[00:31:03] Speaker B: Thanks so much to Dr. Cindy Weinstein. If you would like to learn more about her memoir and her work in general, links will be in the show. NOTES let's turn now to my conversation with the director of Social Work at the Penn Memory Center, Alison Lynn, where we reflect on these stories, Dr. Karlowich's poem and her own experience running a grief support group at pmc.
[00:31:24] Speaker E: Foreign.
[00:31:32] Speaker B: Thanks for coming on the show.
[00:31:34] Speaker F: Thanks for having me again. I love joining you guys.
[00:31:37] Speaker B: I know that in addition to a lot of the things you do at the Penn Memory center, you run a caregiving support group and a grief support group. So, yeah. Do you mind just talking a little bit about Those what those look like?
[00:31:50] Speaker F: Sure. So our whole team, we have a team of social workers, and all of them run at least one monthly caregiver support group. And those support groups focus on working with people who are actively providing care for someone.
And then in addition to that, I've recently restarted our grief group. So for caregivers who have lost their loved ones both in body and spirit, their loved ones have died. And I'm co facilitating that with two social workers from the Movement Disorder center at Pennsylvania Hospital.
And so everyone who's in that group was caring for someone with some type of neurodegenerative disease. There are folks who were caring for someone with dementia in that group, also people who were caring for someone with Parkinson's disease or als, but all of whom experienced often a very slow decline of their loved one. Both of them are over Zoom. They used to be in person, and then we went to Zoom during the pandemic lockdowns and never quite went back because it makes it so much more accessible for family caregivers who are still actively providing care.
And as you know, we have patients and families come from all over the area, and so this makes everything more accessible for them.
[00:32:59] Speaker B: So we started this episode with a poem from Dr. Jason Karlewish, and the title is Ambiguous Loss.
Is that a term that you use?
[00:33:08] Speaker F: Yes, I use that term all the time. It's probably the most frequently used term in my work in general, as a social worker at the Memory Center.
[00:33:17] Speaker A: And.
[00:33:18] Speaker F: And often when you explain the concept of ambiguous loss to family caregivers, you can see the gears turning in their mind, and you can kind of see the aha moment as we put language to an experience they're already intimately familiar with, but often feel sort of crazy for having.
And when we can put language and a label on it, it can validate these experiences, and it helps people feel less isolated to know that it's actually a common experience.
And in my general caregiver support group, we talk about ambiguous loss a lot more just because their loved ones are still alive.
And so they are very much caring for someone while grieving them at the same time.
In my grief group, we do talk about ambiguous loss in the sense that everyone in that room has experienced ambiguous loss in the past and has now also experienced a very finite loss of death.
But the experience of having lived through that ambiguous loss over the course of five to ten years for some of these people informs often the experience they have of the finite loss or the grief.
[00:34:27] Speaker B: You say that it informs the experience of the Finite loss. What does that usually look like?
[00:34:33] Speaker F: So for people who've been caring for someone for such an extended period of time, when that person does die, they've often done a lot of grieving already.
Grieving all kinds of losses. Losses of the past, losses of the present, losses of the future.
And a common experience or reaction to death from someone who's been through that is relief. Relief that they're not suffering, relief that the person they're caring for is not suffering.
And relief from the tension of sort of existing in the limbo. That is ambiguous loss.
There is certainty, there is finality. We know what happened, and they can start to rebuild their lives. I mean, I will say, on the other hand, I work with plenty of people who say, even though I'm relieved that this person isn't suffering or struggling anymore, I don't feel relief at their loss.
You know, even when they didn't seem like themselves or they didn't seem like the version of my mom or my husband that I knew, I still had, you know, a body to hug. I still had a person in the house with me, and I'm still grieving very intensively. So the relief does not cancel out the intense grief necessarily. It just kind of changes its. Its flavor in a way.
[00:35:51] Speaker B: Yeah. So Eileen Ware's story was. Is unique in some ways in that she was very young, her husband was very young when he was diagnosed.
And she talks about, you know, they were raising a family together, they had two kids.
And when her husband was diagnosed, she went from being a part of a partnership, being a part of a team, to now being kind of a solo parent and a caregiver and somebody that's working all the time.
Do you encounter this situation in your. In your groups and your work, and do you have any kind of advice for people that have to take on this kind of tremendous responsibility?
[00:36:33] Speaker F: I don't know if I have advice, but this is becoming more common as we see more folks diagnosed with early onset disease, like Eileen's husband, Steven.
And I will say that, at least for me personally, these are some of the saddest and hardest cases for me to work on, especially when there's young children involved. It really is a tragedy in the fullest sense of the word.
Not that it's not sad when someone gets Alzheimer's disease in their 80s or 90s, but it's more what we as humans expect in terms of the cyclical nature of life. It's very unnatural for someone in their late 40s, 50s, who's still raising young Children or teenagers or even young adults in their early 20s to get this disease.
And the point you made about Eileen becoming a single parent in a way that is kind of an ambiguous loss.
It's not just the loss of her husband. It's also the loss of partnership. It's the loss of being able to split household duties. It's the loss of his role as a father to their children.
It's her loss of seeing him connect to their children and watching him grow up with their children.
So there's all kinds of mini losses that play into that big loss of her husband over time.
And that really is what ambiguous loss is all about. The tiny little losses along the way that really add up and up and up.
[00:38:05] Speaker B: Yeah, one moment in the story, she talks about, you know, having little moments to herself where she is grieving in the car, in her room.
And she says that, you know, sometimes she would try and do it away from her kids, but often she would try and not hide it from them. Do you have any sort of guidelines for how to approach this experience with. With kids in the house?
[00:38:33] Speaker F: Yeah, absolutely. So it's healthy for kids to see adults exhibiting and experiencing their grief, especially if they can see them using coping mechanisms to keep themselves calm and to address their emotions. But emotional expression is not pathological, it's healthy. We don't need to hide kids from it.
Often in our effort to hide that from kids.
Kids are really smart and really intuitive. And even if they don't understand exactly what's going on, their sort of spidey sense, if you will, that something is up or something is off is very strong and intuitive.
And if we don't give them the information about what's going on, they will fill in the gaps with information they make up in their mind.
And that's when we hear stories of kids who think it was, for example, their fault that their dad died or their fault that their dad got sick because we've given them incomplete information.
So in my experience, it's best to have an age appropriate discussion with a child about the basic facts of what's happened and to be open and honest about how you, the adult, are feeling.
I would say that to an extent it's healthy for kids to see an adult cry or express emotion. And I emphasize to an extent that because many people when they're grieving, need to scream and rip things and throw things, and that's probably not the kind of display that we want to do in front of a child, that might be kind of frightening to them, but Certainly sitting down and modeling to them how you might think about memories of that person and how that might make you sad, but also happy at the same time, and give them kind of a little bit more of an emotional education about what it's like to grieve and that it's okay to grieve and that it's okay to be sad and that it's okay to talk about this person and to talk about this experience. It doesn't have to be a big secret.
[00:40:37] Speaker B: Yeah. One of the things that comes up in both stories is this idea of grief not being linear. You know, we hear that classic the stages of grief that is kind of repeated over and over again.
What do you think about that? And how do you talk about grief in your individual groups?
[00:40:57] Speaker F: So that stages of grief model, I would say if it's helpful to people, then they should use what's helpful to them, and I support them in that.
I don't personally subscribe to the stages of grief model, and it was never intended to describe the experience of someone who's grieving anyway.
So that model of grief was coined by a woman named Elisabeth Kubler Ross.
And Kubler Ross never intended for it to be used for people who are grieving. She intended it to be used for people who are dying.
So people who are aware of the fact that they are in their last months to weeks to days.
What I have found about working with people who are grieving, particularly people who are experiencing ambiguous loss, is that grief comes and goes in waves.
[00:41:47] Speaker A: It.
[00:41:47] Speaker F: It crops up at unexpected times, and grief is never over. You're never done grieving. And I heard that a number of times in the podcast episode, which I would agree with. The way that I like to explain grief to families I'm working with is through something called a dual process model. And the dual process model requires us to hold two competing things at the same time, which people who've cared for someone with dementia are actually experts at, because that's what ambiguous loss requires of us as well, to say, this is terrible, I wish it would be over. And also, I don't want to lose the person I'm caring for.
But after death, that dual process model means balancing two opposing forces. One is grief related activities.
Crying, screaming, reminiscing, doing something physical with your body to move that grief through your body, doing something spiritual or religious or customary to your culture.
And on the other side of that are, they're called restoration oriented activities.
So things like starting a new chapter of your life, making new friends, maybe forming a New relationship, going back to work, picking up a hobby that you put aside. So restarting life after loss. And what we know about, quote, unquote, healthy grief is that people flip flop back and forth between those two poles all the time. And that's healthy and normal.
[00:43:15] Speaker B: So in the second story, Dr. Cindy Weinstein, something that struck me was just how long her father's dementia was. And she talks about that being very complicated for her sense of grief because she almost forgot that he had this condition.
Is that something that you hear in your grief groups?
[00:43:38] Speaker F: I think one thing that I hear a lot in my grief group is that while someone's alive, it's hard to remember often what they were like before they got sick.
And that once someone actually dies is when some of those memories of them 10, 20, 30, 40 years ago, depending on how long the relationship was, start flooding back and people start kind of forgetting about the more traumatic experience of caregiving and the traumatic experience of having someone sick with, with Alzheimer's disease or with dementia. I don't know if I've heard people necessarily say that they forgot that person was sick, but the memories of the sort of happier times, if you will, start to become more accessible, start to gain color again and start to, for some people, override the more sad memories. I do think if you're not living with the person that you're caring for, perhaps you're a long distance caregiver, you're an adult child, for example, which is the story you're talking about here, and you're not seeing daily mounting evidence of this person's decline.
Sometimes it is easy to forget that they're sick.
[00:44:48] Speaker B: And that seems very in line with the story as well that Dr. Weinstein shares, where she talks about how she kind of had to rediscover all of these positive memories that she had of her father that were dormant for so long because he was sick for so long.
[00:45:04] Speaker F: I will say the other thing about providing hands on care full time to someone with dementia is it is an extremely intensive job.
And a lot of people I work with say, yeah, I feel really sad. I know that there's like a deep well of grief inside of my body somewhere, but as a survival mechanism so that I can just get through my day and do everything that I need to do to care for, let's say my husband, maybe to do my job, maybe to care for my kids, to do everything that needs to be done to run a life. I have to compartmentalize and push aside that sadness and that grief. Because if I Touch it. A, I'm worried I won't be able to put it back in the box and I won't be able to function in the way that I need to function.
And B, I just am scared of even feeling the depth of feeling that I know is in there somewhere.
So people often kind of put these feelings to the side, go on autopilot, get through their day, and then when they have time to revisit the feelings, often it's not until after that person has died and they're hit with this sort of wave in the enormity of emotion that they've had to compartmentalize and push down for quite a long time.
[00:46:18] Speaker B: So, Dr. Weinstein, she's talking about her father very much in the past. Is that surprising to you, to have somebody talking about the grief of a loved one with dementia so far in the past and so many decades away?
[00:46:35] Speaker F: Not at all.
Having someone that you love suffer from dementia is going to change you for the rest of your life in both negative and positive ways. So often we focus so much on the negative that that experience gives to people, and that is very important.
We don't often leave a lot of room for the meaning that people can make out of this experience or the positive growth that they can have after this experience.
So, for example, both of these women that you interviewed in the podcast went on to do advocacy work, went on to support other people and publish their story in pursuit of helping other people make sense of this experience.
I think once you have this experience, it's always going to live within you. You're never going to forget about it.
It's going to inform the rest of your life in both positive and negative ways.
[00:47:29] Speaker B: What do you think is so important about groups like a grief group for dealing with loss?
[00:47:37] Speaker F: I think a lot of the time I have experiences where people will come to me when I'm working with them one on one in our clinic and say, I'm so embarrassed to say this, or I know this makes me a terrible person, or I know it's not about me. And then we'll proceed to say something that I hear probably five, ten times a day, but because they haven't spoken to someone else who's in this life position, they think there's something wrong with them for feeling that way.
When we bring that person into a group and they can hear other family caregivers expressing similar feelings, that normalizes the feeling. It helps them feel like they're in community and less isolated. And some of these experiences, thoughts and feelings that people have they don't feel comfortable trying to explain or trying to talk about with people who have not been caregivers, who have not lost a loved one to a neurodegenerative disease because it's such a specific experience.
The other thing is that people are often doing this for the long haul. We often say it's a marathon and not a sprint. So I'm thinking of one woman in one of my support groups who said, you know, I do have a really amazing support network of family and friends. They're always checking on me, they're always asking me how I'm doing.
But it's been seven years now, and I sense that people are growing tired of me talking about this. You know, whether or not that's in line with reality is not for us to judge. But the point is that when you're supporting a friend through something hard, usually it's for a short, finite time, not this kind of open ended, long experience. And so often caregivers start to feel self conscious about how long and how often they need to rely on their support system.
And so they need a space where they can talk about that freely without being worried about upsetting other people.
And that is very much a caregiver support group and it's a place to make friends.
So over the decade that I've run this one caregiver support group, many, many, many of my caregivers have connected offline in various capacities, have become close friends, have provided respite care for each other while their loved ones were still alive, have gone to activities, dementia focused activities, together with their loved ones, help plan memorial services, give people rides, drop meals off. So it's a network of people who really understand what you're going through, who can be supportive of you, and who you can be open and honest with.
[00:50:02] Speaker B: Is your grief group open to, to people?
[00:50:06] Speaker F: Yes.
Our grief group is open to anyone who was caring for someone with a neurodegenerative disease who was cared for at Penn. So if someone is looking for a group, they can go to our
[email protected] and click Programs and Services and then scroll down to support groups. And all of our different groups are listed there.
[00:50:26] Speaker B: Well, thank you so much, Allison. This has been super helpful and I really appreciate you sharing all of your expertise.
Thanks for listening to this episode of the Age of Aging. The show is made possible by generous support from the Michael Nadoff Communications Hub Fund and our sponsor, Rothkoff Law Group. The Age of Aging is a Penn Memory center production hosted by myself. And co host Terrence Casey. Contributors include Daliel Said, Jason Karlewish, Emily Largent, and Allison Lynn. Special thanks this episode to Dr. Jason Karlewish and Allison Lynn, as well as eileen Ware and Dr. Cindy Weinstein for sharing their stories.
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