The death of a loved one is difficult for anyone. It is a special challenge when someone in the family has dementia. Family members are challenged to know how and when to tell the person with dementia about the death of a loved one.
Diane Carbo: Hi, this is Diane Carbo and today, I have Tracey Lawrence joining me who is our dementia care specialist. Tracy has decided to talk about guilt and other useless gyration and Tracey. First of all, I say, thank you for coming on today. I appreciate it.
Tracey Lawrence: My pleasure!
Diane Carbo: Guilt and other useless gyrations. We’ve both been caregivers. We’ve helped hundreds of caregivers. And if there’s one thing we knew though, is our emotions take the better part of a . And we go through useless vibrations. So let’s talk about that. Especially the guilt. Let’s start with that.
Tracey Lawrence: Guilt is one of my favorites because I’m a Jewish kid and had a Jewish mom and guilt is something that my Jewish mom was very adept at applying. And so it’s something that I always been familiar with from the time I was a little kid But I became acutely aware as a caregiver that, a lot of us experience guilt over really silly things. Things that really should not be so concerning to us because we have a tendency. We operate out of a place of loving compassion. And there were times when we just second guess, or. We wonder if, we made the right choice or if we actually, God, for folk, we find somebody who can actually fill in for us and give us a little bit of respite. We’re worried that other person couldn’t possibly do as good a job as I do. And so I feel. Guilty for having subjected my loved one to the lack of my care.
Tracey Lawrence: And it’s ridiculous, but we do it to ourselves and I see it again and again. And I go on these Facebook groups because, I know that you’re going to see people who are tying themselves up in not, second guessing themselves and feeling like they just didn’t do enough. And. My line on that is, guilt is for people who know what the right thing is and choose to do the easy thing. Instead, . Aren’t those people caregivers know what the right thing is and they choose to do that very hard thing. That happens to be the right thing. So caregivers, should I say this all the time, they get a get out of jail free card.
Diane Carbo: I tell my caregivers that it’s a useless and wasted emotion that negates absolutely every positive thing we do.
Tracey Lawrence: Totally agree.
Diane Carbo: And you know what? It can be a motivator for positive change, but boy, if something goes wrong, we feel bad about it. We really beat ourselves up and then it causes.
Tracey Lawrence: Yeah. And and let’s face it. Caregiving is a stress free activity, we don’t need to go putting more stress on ourselves. Why should we do that? It really is. It’s hard enough. We should be celebrating. Or achievements rather than making ourselves feel bad for some perceived sufficiency or slight or oversight or something that we think maybe we could have done better. Or maybe because. Some Monday morning quarterback is second guessing us and feeding us ideas. Maybe you should’ve done this. I love that. there are people out there who think they can tell you how to do something better than you did. Yeah. When we become caregivers, it would be great if we had a caregiver manual, but no, one’s put one out yet, but I know.
Diane Carbo: You’re right. I love to get out of jail free card for the guilt. I love it. And one of the things that I’ve learned about guilt is that it’s keeping you from being the best possible person. It’s keeping you from experiencing joy because here’s a perfect example. A caregiver finally get someone to stay with their loved one and they go out. And just, as you said, they’re feeling anxious and the whole time they’re gone, that whoever’s, there is not taking care of their loved one, as good as they could, and that they’re suffering and somehow some way, and it’s just really, we’re silliness on our parts. And it’s an ego thing for us, God, nobody can do anything as good as, or better than I can.
Tracey Lawrence: Absolutely.
Diane Carbo: But it also keeps us from living in the moment and enjoying, because one of the things caregivers do is caregiving, very isolating if they can, if they don’t continue the relationship side of their caregiving, they lose those relationships.
Tracey Lawrence: The thing is that when we have relationships with people, who’ve never been caregivers, it’s extremely difficult to articulate to them what you’re going through. They really have no idea. And there’s just no way to articulate it in a way that they’ll understand. And very often they’ll try to offer you like a tidbit of advice based on absolutely nothing, but they feel like they have to say something. They’ll say maybe you could take a bubble bath, and all good intentions of course, but, it’s just it’s very hard. And after a while, you don’t even want to say anything to them anymore, and you get tired of hearing the sound of your own voice complaints.
Diane Carbo: And then you get into, I feel guilty because I’ve shared my pain with them. I feel guilty. I know I’m embarrassed. And that negatively impact your outside relationships.
Tracey Lawrence: Yes. I, and it just, you don’t, you wind up not saying anything, Just like to say, so how was your weekend? And he’s oh we went and we saw the kids and then we went to a show and then we went, yeah. And you’re like, you’re listening to all this. And you’re like, gee, I remember when I used to be able to do stuff like that. And , you don’t want to say that because you don’t want to make them feel bad. Compassion fatigue is real and it really does force us if we’re at all in that space and we’re, self-aware, we really just, we keep to ourselves when we aren’t caregiving and that can be dangerous. We’re not built to be alone all the time. And to just be left to our own devices. We need socialization. We need other people we need to be able to see beyond this caregiving world that we’ve built for ourselves. and live for the day that we’ll be able to have our own version of that again,
Diane Carbo: I do like to point out that one of the things about guilt for caregivers is and it goes into what you’re saying is they feel like they don’t have a choice. That everything revolves all the care and everything about that person. They’re caring for revolves around just them providing the care.
Tracey Lawrence: Yes.
Diane Carbo: And caregiver say, but I don’t have a choice. You do. And some of them get really angry at me when I say that. I don’t know why they get into a victim mode, which is another negative emotion.
Tracey Lawrence: Yes. I think a lot of caregivers do have a mortar complex. Yeah. And if you ask them to take the cross off their shoulders, they actually get annoyed.
Diane Carbo: They do. And it’s sad because they become so ingrained in caring for somebody else that they let the isolation get bad. They let their friendship drop off. Here’s a true story. I actually had a 75 year old woman call me and she wanted me to help place her 104 year old mom in assisted living.
Tracey Lawrence: Oh my God.
Diane Carbo: She has been providing care for her mom for over 30 years. So here she is. She’s and this is harassing now at 75. He just decided no. That she needs to have her own life because her mom may outlive her.
Tracey Lawrence: It’s so true. I had a client family that hired me and this was particularly tragic. There was a 94 year old grandma. 74 year old daughter taken care of for the 94 year old had dementia. She’d had a stroke as developed dementia from the stroke. And when she was like in her sixties, I believe. And and her daughter who’s now in, in her seventies. Has been caring for her all this time. Now there’s the daughter also has a husband in his eighties and she was reporting to me symptoms that made it pretty clear that the husband was in cognitive decline as well. Then there was a granddaughter in her late forties, married. With two kids. One was a teenager and one was a pubescent. All right. So we got the four generations here.
Diane Carbo: Wow.
Tracey Lawrence: So the granddaughter in her forties brought me into the situation I met with the mom. And the stress on this woman was, you could feel it when you walked into the room.
Diane Carbo: Yes. I seen it.
Tracey Lawrence: I realize at the time was that she had already started developing dementia. Oh, it was awful. And, and I took the grands order aside and I said, your mom is under a great deal of stress. I concerned about her. And I’m concerned with what she’s reporting about your dad or your grandfather, her dad’s w it sounds to me like, he’s probably got dementia also, so we’re going to have to work pretty quickly and, and triaged what’s going on with your mom and your dad as she was like okay, great. Okay, great. And then the 74 year old snapped. And got all nasty on me and I couldn’t break through and her daughter, the one who brought me in was parroting the things that she was saying. So there I had already, I grew up my care manager and we’d been having a conversation and it blew up and later I said to her, oh my God. I wonder if it’s if the mom has dementia and she’s yeah, I know. I didn’t get it, but she’d been under so much pressure for such a long time. It made perfect sense. And that’s one of the things that she’s saying to me. We’re so caustic and toxic and not really based in any reality.
Tracey Lawrence: Yeah, that’s the reality that I could win, but I felt terrible. And it was, I had to back out of the situation. Works for the wise, anyone who makes that choice to stick with caregiving with no respite for years on end. Is asking for illness or death of their own, because it was no way to live.
Diane Carbo: Every year and I tell this story often, but every year we lose several caregivers in our support groups who death or serious illness. And the sad part is it’s due to the stress and no rest thinking that. They are the only ones that can provide the care and thinking that there is no other choice. And caregivers, stress kills and people, they also don’t understand that caregiving can be as long as 20 or 30 years now.
Tracey Lawrence: Yeah. And the other thing that caregivers to not do it. See doctors for themselves, see their own doctors. That’s a really big problem. Cause on top of the stress, they’re spending so much time taking their loved one in for care with their doctors and their procedures and their treatment. They’re completely forgetting to do their own and listen, I get it. There have been times when I really, after you’ve been to like, five doctors and procedures for your loved one in the same week. Do you really want to go for a mammogram?
Tracey Lawrence: Yeah, but you have to. You owe it to yourself and you owe it to everyone who relies upon you to take care of yourself.
Diane Carbo: Yes, I had a caregiver. Her name was Star, and one of my groups, she’s just one of many that I can give you an example of. But Star has the most overbearing narcissistic mom in the world. Her mom prevented her from getting jobs. You have no idea how brutal. Star did everything she could possibly do to keep her mom at home. And she developed a cough and four years later, she decides I’m not feeling good, after four years goes to the hospital, the doctors where they admit her immediately, and she dies a few days later. And it turns out she had stage four lung cancer that had metastasized to her whole body would not do anything to take care of herself. So if people don’t understand that it’s guilt leads to shame, and it leads you to a place of isolation. Where you don’t have any choice in the matter of anything. And trust me, there’s always choice no matter what is always choice. And we, as caregivers need to stop judging ourselves. So harshly, we have to remember that we’re human.
Tracey Lawrence: Yes. And another thing I like to point out, especially people who are caregivers to their parents think of your childhood for a second. Do you know anybody who had an ideal childhood ? I know there were a lot of things I would have liked my parents to do differently. Does that make them, bad people? No, but think of that when you’re judging yourself, because each of us is doing the best we can with what we have at the time that we’re doing. And so you got to cook yourself a break, we, and everyone is doing the best that they can. And you always have to keep that in mind. It’s could I have done it better maybe, but circumstances I would tools that I had and the knowledge that I had at the time that it happened. I did the very best of it.
Diane Carbo: Exactly and that means being able to forgive yourself for being human. Forgiving those who try to make us feel guilty. you’ve got the uninvolved siblings, the other family members who are there just swiftly judge and make comments to bring us down to further beat us down where we don’t need that. So sometimes we even have to practice forgiving them and we need to learn to let go of the family dynamics. We have to let go of things that people have done to hurt us. And we have to learn, I think, to learn to practice mindfulness and in many ways living in the moment.
Tracey Lawrence: Yes. I learned to trust ourselves. To have confidence. What you know about your loved one has a great deal of value and that what you’re doing is special, it is important. And that you should celebrate your ability to do that at the same time. I, one thing that I say with caregivers. Think of people who you can ask to give you respite, if somebody starts harassing you about, things that they think you could do better, turn it around on them and say, what would be great if you could take mom for the weekend?
Tracey Lawrence: And see what we like. And I think it would be really good for you to reconnect with her and get her to reconnect with you. And then I can go and put my feet up for a couple of days and maybe get my hair done.
Diane Carbo: Hey, wouldn’t it be nice so many would feel like they can take a bubble bath.
Tracey Lawrence: Hey, whatever you can do, it has value, but putting those, the, those naysayers those Monday morning quarterbacks those people who second guess you on the spot. Yeah. And get them to sub for you it’s a great message. Because nothing is going to change their tune faster than spinning time and seeing, seeing what exactly.
Tracey Lawrence: So many of the opinions that these outsiders are based on how your loved one was 20 years ago.
Diane Carbo: Exactly
Tracey Lawrence: Right now. It’s really important and it’s serves so many purposes. So if you can manage to turn the tables on them and get them to agree, that little deal thing might creep in with you, but take more satisfaction and knowing that once you come back, they’re going to be so grateful.
Diane Carbo: Yes, they may never help you again, but you will feel better because you stood up to them and made them provide care to see what it’s like to walk in your shoes. And I think that’s important
Tracey Lawrence: And they’ll think twice before second guessing you will.
Diane Carbo: Yes. And some of the family dynamic is there. They’re trying to shame you so that you feel guilty so that you feel no where your self esteem. When people have caregivers have to realize these are irrational thoughts and beliefs that we fuel ourselves. We think, we have to have everybody’s approval. We have to be perfect, oh my God. If we make a mistake, we must be the worst person in the world. And , caregivers think, oh my God, everybody can see my fault. And I’m just a worst. Person, and that’s just not the way it should be at all. They should first of all, be giving themselves boys or pass on the back at how amazing they are to provide this care on a regular basis.
Tracey Lawrence: Yes
Diane Carbo: they’re dependable. They’re responsible and that’s pretty awesome. And they don’t get acknowledged for it.
Tracey Lawrence: No, you’re doing a job that nobody else wants to do. Certainly not as fun provider. And that’s what so many of us do, right? It’s so it’s important to what caregivers need to be better advocates for themselves.
Diane Carbo: I agree. A hundred percent. And they need to be able to identify how people use guilt trips to manipulate them.
Tracey Lawrence: Yes, absolutely.
Diane Carbo: I was going to say one thing that they also have to stop doing is apologizing and saying, they’re sorry for every little thing, I feel so bad because women, especially we’re always, oh, I’m sorry. I’m sorry. Stop. What’s there to be sorry for you are, first of all, you’re working, you’re giving up your life to care for somebody . So many caregivers nowadays are retired. They’re may have kids that are still in college. There’s so much going on and then there’s trying to provide for parents, the, maybe in their eighties, nineties, or getting close to a hundred.
Tracey Lawrence: I was going to add, a lot of caregivers are in careers while they’re caregivers and that’s really hard too every which way? Being an independent entrepreneur, I’ve done it while having a job. I’ve done it while not having a job, and, however you do it, it’s challenging. It’s, you really have to give yourself some credit and give yourself some time off. Give yourself some love. Give yourself is the opportunity to unplug and unwind and have some fun, because if you don’t it, life is going to pass you by and you might wind up very old. And still caring for somebody who’s ancient.
Diane Carbo: My 70 year old was 104 year old mother. Yes,
Tracey Lawrence: Absolutely. I can’t even imagine what that must be like that. I feel so blessed Diane because there were times when I was caring for my mother, especially towards the end, when she was on hospice and I’d been caregiving her for five years. And, in the hospice nurse said to me, she’s got a week, days, maybe weeks and eight months went by and she was still with us. And I was just like, I can’t believe she’s still alive. And I was never going to go. And I know to people who aren’t from this realm, you hear somebody say something like that, and you’re horrified, but absolutely. And it’s not yes. It, of course in part it’s for our benefit, we want to be free of this obligation, but it’s also for your loved one because you know that their quality of life is not what they would want it to be.
Diane Carbo: Exactly.
Tracey Lawrence: And I’ve heard lots of stories. It seems that most people hang on for a reason. In my mind, I could not fathom why she was still hanging on until it started to come together the day before she died. When I got the statement from her long-term care insurance saying, this is the last of the money in her bed.
Diane Carbo: Oh, God bless.
Tracey Lawrence: And it’s been tied to her memory care rent, and then had exhausted her policy. And I realized then the reason my mom’s been around this is still around is my father was not going to let her cross over. Until she exhausted that policy cause he wanted done,
Diane Carbo: you know what, in another time in my life, I would have thought you were crazy, but having been at the deathbed at the bedside of many people who have died, I can tell you that is not an outrageous statement is probably more true than you even that others would even imagine.
Tracey Lawrence: Oh, Diane. I had complete confirmation because my mother died on her wedding anniversary. Okay. It would have been her 64th wedding anniversary and the night she was dying, my husband and I went to a Chinese restaurant, a place where we had taken her many times and on a nice meal and we toasted her. And when the waiter brought the that the bill to us with the fortune cookie on top of the fleece, I opened the fortune cookie. And I swear to you as God as my witness, the fortune said want to make sure I put this correctly all of your trouble will be gone tonight.
Diane Carbo: Oh, my apathetic..
Tracey Lawrence: Yeah. And it was, and I looked at it and I was like, how’d you guys do this? And so 2:00 PM, I got the call from my mom’s home that she had actually passed. And I. From one of the aides that she can send you on until one of my nephews came by to say goodbye to her. Yeah. And once he left, that was it. That, that’s when she that’s, when she turned to.
Diane Carbo: Tracy, the same thing happened with my father. He had pancreatic cancer and he was on his death bed and he had just gone into a coma the day before. And he knew my brother, Paul was in Florida where we were living in Pittsburgh at the time. And he was on his way home. Paul made it there, he was driving back. He made it back. My dad was waiting for him. Paul walks in the door within an hour after Paul visits with my dad. Transitions and it, to this day, we know that my dad was waiting for him called to be there to say goodbye.
Tracey Lawrence: Yup. And I really do believe that they know that there is, whatever point of existence there they’re parked at, when they’re waiting to transition, there were certain loosens they have to tie up. And I’ve seen it a multitude of times at this point I have to. Yeah, I know. No, it’s true. And a lot of people think all this stuff is woo.
Diane Carbo: I don’t anymore. I’ve been a nurse for 50 years. I don’t believe that’s who stuff anymore. I don’t, it’s not really. It’s very real.
Tracey Lawrence: Yes, it is. It is. And we don’t want, to believe it. , we believe that’s a little too far fetched until we’re actually confronted with it. . And I really I felt so blessed because all of those signs were very clear to me and I felt like it was my parents’ way of saying to me, you did good kid. I feel blessed that I could see that, that it was so clear to me. I didn’t even question it, as it was an unfolding. And after all the months of watching my mother deteriorate, and then it was painful to have to do that. But the resolution. Was just, it was, there was a beauty to it and I have learned that, having the privilege of giving someone you love a good death is a gift that it’s a very, it’s a precious gift to be able to do that.
Diane Carbo: It is priceless and that’s the sacrifice many of our caregivers make , in order to keep somebody at home, they may not have somebody that will ever take care of them and give them that opportunity to have that life. One of the things I’d like to tell caregivers is they have to look at life and say, what have you done to change? For the better in your life or somebody else’s life and caregivers can say they can positively answer. I’m doing great things at great cost to my own life to provide care and the other thing, I want them to make sure that they ask themselves when they’re 30 to feel guilty and feel shameful or even anger and resentment is what have they done now that you can feel positive about and grateful about at that moment. And I think that, I do like to tell caregivers, you just started a gratitude journal.
Tracey Lawrence: Yes. I think everyone should have a gratitude.
Diane Carbo: I do too, but you know what a lot of them say, oh, we don’t have time or whatever. Hey just say I’m grateful for even if it’s one or two words. Yes. Every day.
Tracey Lawrence: Yeah. This whole idea of not having time. I learned a while ago, I read this great book which had this piece of advice. And getting back to your your statement that we all have choice. We have choice in how we spend our time as well. Everything that we decide to take on is a choice and exactly what we do with our time is a choice. Now, there are times when things come up where you have to act. You don’t and yes, absolutely. Those things happen. But most of our lives, most of the time that we spend is not time that we choose to spend. It’s just time that we go through and we’re not really thinking about it. We’re just doing the things that we do. Yeah. So the whole idea of being mine. Really well, when you go to do something, think about, is that, what is that the best use of my time right now? And when people start looking at how they actually spend their time, they’re going to realize that they have a lot more time than they think they do better choices with what to do with the time that they have. And so it’s a matter of prioritizing things that are meaningful. So if we become more mindful and look at how, looking at how you spend your day, how much time during the day do you spend like observing social media? Most of us, we were, oh we’ll blush . When we hear that, because we tend to spend entirely too much time just. Looking at people taking pictures of their dessert. Yeah. So if we become a little more mindful and say, you know what, today I’m not going to be on Facebook. I’m not doing it. I’m just gonna, I instead, I’m gonna I’m going to pull out a piece of paper and I’m going to count my blessings. I’m going to write down things that I’m grateful for. That I usually don’t think about being grateful for things that I take for granted that if they weren’t there, I would have a very different life and not in a good way. And I think if people start coming from that perspective, that you will find time if you make the time. And more than anything, I just say, prioritize yourself, prioritize what you need.
Diane Carbo: Break down and ask for help as hard as it is, break down in and ask for help.
Tracey Lawrence: Yeah. . You’d be surprised at how many people will say yes, I I I was thinking about this story a woman told That I met through networking and she worked, she had an operations job that, had to do with with security. She had this job on nine 11, 2001. She and her husband had just broken up and she had two jobs. And she has custody of these two kids. the morning of nine 11, she got a call to go into the sensor, her operation center and her kids school was closed. So she was in a very difficult situation. She needed to go to her job, which was critical on that very often. She couldn’t just leave her kids. She had recently moved to a new neighborhood, so she didn’t even know her neighbors yet. She called her husband from whom she had just divorced. So they weren’t on the best of terms, but she said, listen, this is what’s happening. I really need to go to work. Can you take the kids? And he said, of course, it was such an epiphany to her. , that’s something that we all have to think about. Cause there were tough times. There were times when we have to make an ask of somebody who we don’t want to make the ask because our survival depends on it and we’ll really do need to take it that seriously. And Vaughn it because it does.
Diane Carbo: Yes. I’m going to end today’s series with with you Tracy and say thank you again for being here to my caregivers out there. Remember you were the most important part of the caregiving equation without you. It falls apart. So practice self care. Be gentle with yourself. Forgive yourself for being human and practice self-care every day because you are worth it. Thanks, Tracy. And we’ll talk next week.
Diane Carbo: Okay, Diane. Thanks so much. Talk to you later. Bye.