Patty's Place
A place to talk about grief, dementia and caregiving. A place to find comfort when you are going through a difficult time.
A place to know you are not alone as you go through this difficult time.
Patty's Place
Shopping With Ghosts: Finding Joy in Anticipatory Grief
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Grief doesn't wait for goodbye. It weaves through every moment of the dementia caregiving journey, creating a complex emotional landscape that few discuss openly.
When your loved one sits across from you—looking the same but fundamentally changed—you experience what experts call "anticipatory grief." You mourn what's already lost while simultaneously dreading future losses. The shopping trips you can no longer take together. The recipes they once taught you but now cannot remember. The phone calls that might someday stop coming.
This episode explores the profound reality that dementia creates two different people: who they were before diagnosis and who they are now. We delve into the heartbreaking contradiction of seeing someone physically present yet cognitively altered, and how caregivers must navigate this strange in-between space. The conversation touches on role reversal, dignity preservation, and finding moments to acknowledge your grief even while actively caregiving.
Whether you're currently caring for someone with dementia or supporting someone who is, this candid discussion offers validation and gentle guidance. The emotional weight of watching someone you love gradually change is immense, yet understanding that grief accompanies every stage of caregiving can help you be kinder to yourself throughout the journey.
Grab your beverage of choice—coffee, tea, or perhaps wine on the difficult days—and join us at Patty's Place, where difficult conversations happen with compassion and no one needs to face these challenges alone. Share your own experiences with anticipatory grief or connect with others walking a similar path by reaching out through our website or social media channels.
Welcome to Patty's Place, a place where we will talk about grief, dementia and caregiving. I'm your host, lisa, so grab a cup of tea, a cup of coffee or, if you're really having a rough day, a glass of wine and let's dive into these difficult topics of time. Today, I thought we might talk about grief and caregiving, you know, because we always tend to think that grief is just what happens after, but really grief is what happens before, during and after, especially with dementia. We go through grief in many different ways with it, but we do go through it as we are caregiving for our loved one with it. I think probably the first one that we go through is what's called anticipatory grief, that's, I mean, basically what it is is that we know this is not going to end good. You know, we know what the final outcome of it is, and so we anticipate these things. We also know that the person's never going to be the same as before this illness. After this illness even if it isn't dementia, you know, if it's a different type of serious illness we know that they're never going to quite be the same. And so you anticipate that grief that you know that you're going to feel, but you're also feeling it. In that moment.
Speaker 1:You think about all the things that you used to be able to do and now you can't Like something as simple as with my mom. Her and I used to. We would shop all the time and I think about that and it's it was a loss even when she was still alive, because I couldn't take her shopping anymore. The last time her and I went shopping, usually her and I would go to the store and we would usually separate and she'd go look for things for herself and I would look for me. But the last time we went I we said we were going to go. You know she'd go look for her. I turned around and there she was and I realized that she needed to know where I was because she was confused and she didn't know where she was. So I think about that all the time when we did. You know that last time that we went shopping and I didn't realize how much I miss being there with her and shopping and what a good time we had and talking and everything.
Speaker 1:So when you're going through the caregiving, you do anticipate you know that at some point it's going to be the end and you also grieve not only that person but in a way, you grieve the purpose that you have while you're caregiving, because caregiving becomes your life, gets centered around caregiving. For me, my weekends are the ones that are so hard, because I used to always spend so much of my weekends with my mom with it, and it's also hard. That grief that you're going through during caregiving is you have to begin to accept that this person is different, especially when you're dealing with dementia. With dementia, it is that there are two different people. They're the person that they were before they got dementia and then they're the person that they are with dementia. And it's so hard because you keep thinking about how they were before and you see what they can no longer do, what they can no longer handle, and you have to accept that you have to deal with them in a different way. And yet you're looking at this person and you're like but she's still my mom. I see her and I think about her and she's my mom and I still want to go to her. I still want that comfort. I still want her to tell me it'll be okay.
Speaker 1:And yet there were times when she would say those things to me. She would say it'll be okay, or she'd be like are you okay? You know, and she still knew something might not be right. I really do believe and this is just my experience but I really do believe. Even when dementia patients don't know you like they can't tell you by name, they, you know.
Speaker 1:My mom didn't know I was her daughter anymore. She thought I was just this nice girl. I really do believe, though, deep down inside she still knew me. She still knew I was somebody she could trust, somebody that she was close to with it, even though she didn't know my name. It was the same thing with my dad she didn't know his name anymore and she kept looking for him. With my dad, she didn't know his name anymore and she kept looking for him when he was younger. But she knew, she felt safe, she knew that we were somebody that she could trust, even though she didn't really know who we were with it.
Speaker 1:And it's so hard, as you're trying to care, give and, and you realize the roles change and you have to almost you do. You have to parent them. If you're dealing with your parents with it, you have to take care of her, you know, like I had to. You know we would do her our nails together. I'd be like mom, let me cut your nails and stuff where she used to do that when I was little, or let me do your hair for as long as she would.
Speaker 1:And another example of my mom we had a phone for her and it was a very, very simple phone and I had dialed in or programmed all the numbers that she would need. You know who she could call and she would sometimes call I'm not even exaggerating 30 times a day and it would be a lot. You know, my phone would ring all the time, and not just me. She would do that to my dad and that. And people would always say you know, you don't have to answer the phone every time she calls. And for the most part I would. You know, obviously, if I was at work and I was in a meeting or something and I, I couldn't answer, but in the back of my mind I always answered, even when it was hard and it was rough and she was upset or I had to calm her down because I knew in the back of my mind there was going to come a night, come a day where she wasn't going to be able to use the phone anymore and I was going to miss those calls. So that's a good example of anticipatory grief. And the day did come when she couldn't use the phone anymore, and I do miss seeing, you know, her name pop up on my phone. Luckily, I, for some reason, I just had a feeling that I should save a couple of her voicemails, because she didn't leave voicemails very often, so at least I still have her voice that I saved.
Speaker 1:So those are things too, with the anticipatory grief as you're going through in your caregiving, you think about the things that you have lost and the things that you know you're going to lose with it. And I also thought about the things that she had lost as she was going through it, the things that she would not have wanted to be like. And it's so hard because it was so not her, but yet it was her. As I looked at her, you know, and I knew yeah, you know, there is no cure for dementia. So I thought about things of what I would miss when she wasn't there anymore. And that was hard too, because I was trying to be in that moment with her. And I think that we feel that way because, as we're trying to be in that moment and we're trying to take care of our loved one and we're trying to be in that moment and we're trying to take care of our loved one and we're trying to do what's right and we're trying to figure out doctors and medicines and what do we do? We're also grieving what was in that moment. As we're trying to take care of that person, we're grieving those little things like being able to pick up the phone and just talk and be like hey, did you see this TV show that was on? Or just have a cup of tea with my mom, you know? Or talk about whatever She'd be like. Oh, let me tell you what happened today, you know. Or she'd come over and she'd show me how to do something.
Speaker 1:When I would come over by my mom, sometimes there was always this one recipe. My mom was a really good cook and but as she got older she decided that she wasn't going to. If the recipe was too long, she wasn't going to do it anymore. So if it was like over five ingredients, she said forget it, and she didn't like to roll things out. So she ended up giving me her rolling pin. But I would come over and periodically she there was this recipe she wanted to make. It was for a meatball pie, but she would always wait for me because she's like you roll out the dough and we would make it. And I miss those things. You know, my mom taught me how to bake and she taught me how to cook, and I miss being able to go, you know, over to her and share recipes and things like that. And as I took care of her, I could see that was something she could no longer do. When she lived with me for a while, I had to take all of the knobs off the stove because that would have put her in danger with it.
Speaker 1:So you grieve what was how they were before? And you realize they're never going to be that way again and it's a way of life, a relationship. And you're grieving as you're looking at them and they're still alive and you think, how can I be grieving? But you are because you're thinking about what you lost and what will never be again and what is gone forever, what you lost and what will never be again and what is gone forever. And you're also grieving knowing that at some point this person won't be here anymore. And then you think, oh, that's terrible, I shouldn't be thinking those things. But you know, especially with dementia, that there is no way out. You know it's only going to get worse depending on where they're at and as they progress on the dementia.
Speaker 1:And it's hard because no two people follow the same progression with dementia. Yes, there are different stages and there are different timelines. Well, it's not even timelines. There's different things, that symptoms or signs. I guess you know that people go through, but everybody goes through it at a different rate. So you really don't have anything. So you're feeling very lost in this maze because you don't know what's coming next with it.
Speaker 1:And you think about how this person was and then how they are now and you're trying to figure out how do you do this, how do you work through all this? And you're trying to put that person first and yet you're grieving what you're losing and what used to be, especially if that person was like my mom. She was my person, she would have been the one I would have went to to be like how do I get through this? And there she was. And so you think about all these different things, all these silly things. As you're taking care of your loved one, you think about what you're going to lose what you already lost and you wonder just how, how do I get through all this? Because it's hard, it's really hard and I never thought about it as anticipatory grief, but that's what it is. You're grieving what you know you're going to lose, but you're also grieving what you already lost and what you're losing in that moment. You know, and it's so hard with dementia because you look at the person and, as I said, they look the same but they're not the same. So you grieve for that person as they're still alive, because you think about, maybe, how alive they were or how funny they were or the different things they used to do, and they can no longer do it, whether it's physically or mentally longer do it, whether it's physically or mentally.
Speaker 1:My mom was unusual because she was highly mobile. For a severe stage of dementia that she was in, she was still very mobile and that was highly unusual. A lot of times the physical symptoms may come into play where they have trouble walking or things like that. With my mom that didn't happen till the end, which was highly unusual for her. But there were different things that I know she never would have wanted to be, you know, when she lost control, you know, with incontinence and things like that. My mom would never have wanted to be like that. I mean, nobody does, but those were things that that was something that would hurt.
Speaker 1:Every time I would see that or that we'd have to, I'd have to try to get her to change her pants, you know, cause there was a stain on them. It's just. It would break my heart because that's just not my mom. And my mom would say things to me like, well, who cares, don't look, stain on the pants. I'd be like, but, mom, you know, we got to change your pants and she'd be like so what? Oh, don't look, or stop looking at it, or who cares? That's what she'd say and it was so not like my mom, you know.
Speaker 1:And it would break my heart because I sometimes couldn't get her to change and then I'd have to ask the caregivers to help me and I would be like that is so not my mom, you know. Or I couldn't get her to change clothes sometimes with it, and it would. You know, I'd feel like so helpless that I couldn't help her and I knew this wasn't who she was. But yet this is who was the person that was in front of me now, and it's so hard because you just think about who they are as a person and who they are now, and then you think about how the illness has robbed the person of so much and yet you still want to give them dignity, you still want to treat them with respect because you still I mean, you love them, you know.
Speaker 1:And it's just hard because there's all these emotions and maybe you're angry which is part of grief as well too and maybe you come home and you cry your eyes out because you're like how can this be and all of it's okay, like how can this be and all of it's okay. It really is. You have to get those feelings out. You have to get the anger out and the crying, the sadness, whatever it is, so that you can kind of take care of yourself and acknowledge that, yes, I am grieving. You know, I grieved for my mom way before she died, because I saw things, even before we were able to get her diagnosed, that I knew were not. They were not my mom. So those are things that you have to think about and things that you feel, and I think it's important that you feel what you feel in that moment and maybe you can't express it when you're with your loved one in that moment, but you have to give yourself that moment, even if it's just going in the bathroom and crying or screaming.
Speaker 1:You have to give yourself that and acknowledge that you are grieving, because dealing with dementia is very, very hard. It is not an easy thing for the person who has it and for the person who's taking care of your loved one with dementia. It's hard and you grieve because you see what they're losing. You can see it in everything that they do and it does make you angry, it makes you want to fight. But there's such. There's nothing to fight with dementia. You know there there is no cure. There's nothing except all you could do is try to give them the best help that you can, make sure they're safe which is most important and do the best you can taking care of them. You know it's hard because you know sundowners comes around and sometimes they get agitated and it's hard sometimes to calm them down. And it's okay, as you're grieving through caregiving. It's also okay. You're going to make mistakes we all do, you know. So you have to be not so hard on yourself to know that it's all right, but acknowledge that you are grieving even when you're taking care of your loved one. It doesn't make the grief at the end any easier, but you do grieve while you're caregiving Like I said, especially with dementia because you grieve for the person who used to be and the person who you're dealing with and sometimes they are completely different.
Speaker 1:People Like you may find yourself saying I don't recognize this person at all and that's okay because they're not the same, and that's okay because they're not the same. And I think one of the best things you can do for yourself as a caregiver is to find knowledge Like I said, the Alzheimer's website is a really good website or to find other people. Support groups can help too, so that you don't feel like you're crazy and you're alone because it's hard. Support groups can help too, so that you don't feel like you're crazy and you're alone Because it's hard. Caring for a loved one with dementia is hard and you do grieve.
Speaker 1:You grieve all the way through the caregiving process.
Speaker 1:You don't just grieve at the very end and it's really hard accepting that this person is no longer who they used to be.
Speaker 1:And yet you know deep down inside there are moments that they are still there and I do think that they are still in there. It just gets sometimes harder and harder to find them and it's hard. If some days you don't reach them, it is, it's okay, you know, it just is, and so understanding grief is one of the ways you can try to be a little bit kinder to yourself as you're going through this process and we'll talk more about grief and caregiving, and caregiving and dementia as we continue on here at Patty's Place. Hopefully, like I said, you find this a place of comfort for yourself, a place that you know at least you don't feel like you're alone for it, and that's what my mom would always want. She'd want people to feel comforted and not feel alone. So I hope you were able to get a nice cup of tea, cup of coffee or some wine, and please join us next time right here on Patty's Place. Yeah, yeah, yeah, no-transcript.