Grief before loss - How my dad's dementia took him from us slowly

Well, hey everybody, and welcome back to Qualified, the place where incredible people share their stories of overcoming great adversity and loss to inspire you and give you hope. I'm Michelle Heaton. Grief is the natural result of loss. We'll all experience grief at some point in our lives, but most people don't want to talk about it or think about it in advance. When we find ourselves in that place, we'll have no choice but to process those emotions. But what will that look like for us? Well, most of us don't know, because we don't want to talk about it or think about it in advance. But if you're listening today, you have most likely experienced a loss and your grief might be overwhelming you. You might feel stuck or you might feel angry. You might not feel like other people can relate to what you're going through, because what happened to you hasn't happened to them and maybe you don't want to burden them with your sorrow. So what do you do? Well, some people make an effort to hide their emotions. They keep themselves busy with the things of life and project a sense of confidence and control to those around them. They put on an outward appearance, a mask, so others won't know how they feel inside. Well, my guest today fully understands the concept of hiding behind a mask, as well as the freedom that comes from removing it. She has a diverse background that affords her both personal and professional experience on this and other topics related to grief and loss. She earned her BA in journalism from the University of Iowa, then accepted a position in the television industry. She eventually left TV to serve as executive director of a youth center on Chicago's South Side, and while there she earned her master's degree in social work from the University of Chicago and then a master's in theological studies from McCormick Theological Seminary. Today she's an ordained minister and the founder of Faith on the Journey Counseling. She's the author of the book Breaking the Power of the Mask and a master facilitator with the Trauma Healing Institute. Her name is Jocelyn Jones, and it's my great honor and privilege to have her as my guest on the show today. Welcome to qualified Reverend Jocelyn. Thank you.

Thank you, Michelle, so much for having me, of course.

Well, we started off by talking about how people choose to process adversity and grief, and you told me you had your own unique experience when you lost your dad just a few years ago. Can you begin by telling us a little about your dad and the impact of his illness on his life and yours, and then how his passing impacted you?

Well, Michelle, I like to describe my dad's passing as the slow kiss g oodbye. M y dad, who was a superhero to me was a 10th degree black belt and so he was well recognized in the community, especially in the African American community, and he was a constant, very supportive, even though he worked a lot. He was there and he was always known for being extremely sharp. When he retired, they replaced him with three people in his corporate position, and so that man was holding it down right. He actually retired because he noticed that he was having difficulty remembering things, going from someone who balanced his checkbook down to the penny and would call the bill people when they were off, by some cents that type of sharp, to having difficulties with things that normally wouldn't be a challenge for him. And so he decided to retire and still went on to do incredible things like write a book, and he challenged himself completely with that type of driven individual. But my brother and I noticed that there were certain things that he struggled with. We would tell him like, hey, dad, this is how you use the computer or this is how you use this program, and we would have to repeat ourselves, and we didn't realize that my dad was actually struggling with cognitive disorder, which eventually developed into a mild cognitive disorder, and that was a mild version of dementia, like a precursor, if you will, to all timers.

Well, I can see why you referred to him as your superhero. He was a man of many gifts and talents for sure, and I know you adored him and looked up to him and I'm sure it was so difficult for you to see a decline in his cognitive ability. You said the doctors called it a mild cognitive disorder and then he was eventually diagnosed with Alzheimer's. Can you talk about that time, those next several years, and how you felt about seeing these changes in your dad?

When he first got that diagnosis, we were really concerned. Obviously, we're trying to look into different natural ways to help him to combat this illness, but unfortunately, things got progressively worse and fast forward to 2020, we remember 2020 being a year that was just out of control, with the pandemic and everything. At this time, my dad was in his last years. I didn't realize it at the time, but it was so difficult because I could not visit him because of you know, the staying shut-in rules and everything, and so during that period he was declining and it was a struggle for him, first of all, because my dad was an extrovert. So you're keeping him inside. Oh yeah, we had to take away his car keys because he couldn't. It wasn't safe for him to drive. He was trying to break into the car. It was one time in which he literally broke in and drove down the street. It was a whole situation right, so aggraved, but for him he was struggling with the loss of his independence and telling him he needed to stay indoors and also I mean accepting that reality was challenging. But I remember talking to him over the phone during the pandemic and he sounded like he was drunk. He couldn't put words together and when I got off the phone with him, I actually rushed the conversation because I got overwhelmed with emotion. I just broke down in tears Because I was like, oh my god, what was that? And that's when the reality really set in. I was in denial for some time, but that was like, ok, my dad is not doing well and I had to make the decision even though it was advised that you stay away from the elders to go visit as much as I could and just try to make memories with him. And I remember talking to someone on my podcast about this and she talked about how, even though our loved ones who are struggling with dementia Alzheimer's or something like that, they might not be able to remember the moments, but you can remember the moments as it relates to those things that you're doing with them. And so I had to really focus in on that, because you know, my dad might not remember what happened two minutes ago, but for us, our family, we were trying to still create memories In the present. My dad could still feel the joy, and so it was a long journey until his passing.

I'm so sorry, Jocelyn. I'm sure that was so hard and my heart goes out to you and to anyone who's experienced having to see a loved one change in this way and to realize that things will most likely not improve for them. In fact, I understand they can seem to get better at times and then decline again, which would be difficult emotionally for the family right?

Yeah, yeah it was. My dad was very charismatic and so he knew how to hide sometimes the fact that he could have remember. Like sometimes people will call him on the phone and he wouldn't necessarily remember their name, but he'd be like hello guy, hey, how you doing you know, playing it off. And so it was a roller coaster ride. But at the end of the day, it's this anticipatory grief that you experience when you know, okay, time is limited and the dad that I used to know is not here, and so accepting my dad and his current condition was very difficult, and so I didn't realize why I would start breaking down in tears consistently at different points while he was still living. But I was grieving, I was experiencing this anticipatory grief, and it was very difficult.

Oh, I'm sure. And yeah, anticipatory grief, that process of actually mourning the loss of something or someone that is still here, is hard to get our brains around. So here you are, trying to hang on to all the good memories and capture any new ones you can. While he's still with you, knowing that his condition was worsening, can you talk about those final months of his life and what losing him was like for you?

Yeah, and so my dad continued to fall. His coordination suffered and when he fell I think one of the times in which he had an accident it led to him getting an infection and he was taken to the hospital and they said this is critical, this is serious, and at that point he really couldn't talk. He was in pain and we had a hard time engaging him and my brother and I were in the hospital and we were trying to do everything. We were showing him pictures, we were trying to get him to watch TV and videos, and nothing really worked, except my brother had the best idea to try to play one of my father's favorite songs Family Reunion by the OJs and we played that song for him and he lit up, he started singing. He wasn't talking to us at all before him, but he started singing the song and the nurses came in the room like Mr Jones oh, my goodness, look at you. He started playing that and starting to play some other oldies that just resonated with him and that was a joyful moment in a very sad time and it just it showed me the power of music and how we're able to connect with people through songs, because that is actually one of the last things that we lose in terms of our memory, and so, again, creating those special moments. But fast forward. You know, after several visits at a hospital, my dad was released. He went to a nursing home and I thought he was going to recover. It was going to be like a long haul journey. We visited regularly and our family was all there behind around him, like right before he passed like maybe a day, we missed a day, but we, you know his family was consistently visiting and I just remember my dad. When I had to leave, I said, dad, I'm going to see you later. You know he's like you leave it. I'm like, yeah, dad, but I'll be back to see you. And he's like, okay, you know, and that was, that was the last time. You know, that was the last time I got a chance to see him and it's. It's one of those things in which, those memories, you just don't forget the last time and you don't know when it will be, and you always kind of wonder, like if I knew it was the last time, how would I have reprioritized or replayed, or whatever the case may be. But at the end of the day, I miss my dad all the time, but I feel like his life was so rich in my relationship with him. He knew he was loved by his children and his family and I know where he is in heaven, and so I still reconcile with that. I still communicate with him all the time and sometimes I still cry years later. That grief journey was no joke, which I know we'll talk about, but that's how he made his transition.

Well, thanks for sharing all that, and I think it is. You talked about making memories. I'm sure that memory of the OJ song is forever burned into your mind, and that's a beautiful one. I love that. Yeah, so I talked in the intro about your background, and you deal with people that have experienced trauma and you help them process this. How did you find yourself in the midst of your grief following the loss of your dad? What was your grief like? Were you able to apply those lessons that you learned, that you were trying to help other people get through, or was it? Oh, no, this is new territory, oh.

Michelle, you're calling me out with this question, you know, because it's so easy for you to talk about things from a textbook lens or theory, but when you go through a major loss it's different, and up until that point I had never experienced a major loss that was just so close to me, and so it was different. It made me see grief from a fresh lens, in terms of resonating with those who lost a parent. Now I understand what this looks like. For years I dreaded it. Now it's a reality and I know there's other losses that people experienced for people who were close to them. But I think when I was going through it myself, I did put on the mask to get through for a while, because I actually was encouraged to give my dad's eulogy in which I did and so when I preached his eulogy, I, for whatever reason, said Jocelyn, you can't get on this pulpit and cry. You have to keep it together. You have to be strong, even though I teach against this right, this idea that you have to be strong. But I felt like, if I allowed myself to show any type of emotion, that I would not stop crying, and so I sucked it up. I don't know how in the world. I did it, but I gave the message and it was almost like out of body, I disassociated myself. It was kind of like I was watching a movie, because there was points in which I even used humor and stuff to make jokes and I'm like girl, what in the world? You are at your dad's funeral, but I had to detach to get through the moment. But here's the thing Delay grief. When you carry the grief, the grief is still there. And so I was able to do that for a temporary period of time to get through the service and kind of just get all that stuff done. But I remember walking into a familiar place of mine which I used to always go to the gym I used to do CrossFit heavily and I remember visiting the gym after being gone for several months and running into a coach there and I guess in my mind something said this is a safe environment for me, because as soon as I walked in the door and they asked me how I was doing mind you, this was two days before my dad's birthday the tears just started erupting, like it was like craziness, I like a volcano of tears, and I was like, oh my goodness, oh my God. Okay, all they did was ask how I was doing. So I had to beeline to the bathroom to try to get myself together. What does that mean? But I'm just wiping all the tears and stuff and I come out of the bathroom and talk to the coach and she was like you know, just give me a hug and trying to calm me down, and she was just so gentle and I shared with her that the reason I had such a response is because I had recently lost my dad. And here's the thing this is how God is just so good because, to come to find out, she had recently lost her dad too, and she started sharing about the loss of her father, and in the conversation she said Jocelyn, you know, the beautiful thing is that you are able to cry because my dad this is what she was saying my dad was my best friend and my pain is so great, but I can't seem to allow myself to cry. And so, when she was struggling and sharing about her grief and I'm sharing about my grief, it was such a sacred moment and I think it just revealed to me, reminded me, the power of being vulnerable and holding each other in our pain, and, you know, just remembering sharing the good times, sharing the things that we loved about our fathers. And so that was one moment in which the grief couldn't hold it back, and there's been many others in which there'll be certain things that remind me of my dad, and I just started crying and I said it's okay, because it's a reflection of the love that I have for my dad, and so I allow myself to grieve. It took me a minute, but now I welcome the tears as they come.

Yeah, well, it did take a lot of strength to give your father's eulogy. That's a pretty big deal, so I completely understand putting on the mask that day, but I'm so glad that you found that safe space and safe person at the gym that you were able to finally let your guard down and connect with someone who you found was also grieving. So, on that note, let's talk for a moment about your book Breaking the Power of the Mask. And it doesn't only apply to grief. It applies to shame and a lot of other things that we don't necessarily want to outwardly display or share with other people. But when it comes to grief, tell us why it's not healthy to hang onto it like that.

Well, isn't that healthy? Because, first, grief is natural, it's human, it's something in which it was never meant to be suppressed. And when we suppress the grief, it's this idea as if, like when you're playing hide and go seek with the kid or you like are like hiding behind the corner, acting like you don't see them, but they're really there, it's like. But the grief is kind of like we're hiding and pretending it's not there, but it's still there, even if we pretend. And at some point it is going to manifest itself, whether externally or internally. And when we have it suppressed internally, this is when we see certain diseases that people have, when we see ourselves struggling and having certain reactions and we don't know why. Perfect example I was ministering to this young woman who had lost her brother and she was talking about how she was struggling in school to concentrate and she didn't know what was going on. She's having difficulty sleeping, all these things are happening with her, and she wasn't able to draw the connection to the fact that this is grief, these things that you're describing. You've been carrying your grief with you for months and she just had been in school and seminary and working, so in her mind she didn't have time to grieve, and that's understandable, because our society makes us feel that way. You gotta go to work, you need to get over it. And so she was struggling to do what she had to do, but the grief was saying, uh-uh, even if you're ignoring me, even if you're hiding from me, I am still here, and it showed itself. And so eventually, she had to integrate her grief journey and allow space for it to be expressed through counseling, through talking it out, through groups, and there's different ways to do it. But at the end of the day to answer your question, Michelle, even if we say I'm not going to deal with our grief, our grief is gonna deal with us, is going to be there. So we might as well create space for us to begin to work through our grief versus carrying it. Carrying it with us, because it's still gonna be there.

Yeah, thank you for that example. That helps a lot, and it's so true that our culture is one that expects us to snap back and get over it, get back to work, like you said. But you're so right, our grief will catch up with us if we don't express it somehow. So back to your book for a minute, because I remember reading something that jumped out at me, and it was from a TED talk that you heard on this topic, and the speaker was discussing how, sometimes, when we lose a loved one, people will say I can't imagine what you're going through, and when people said that to me, it made me feel more isolated. But you said that the speaker's response was different. She said well, I think you can and I think you should, because one day it's going to happen to you. So what do you think she meant by that?

I think that she's challenging us to try to empathize with individuals and not just say the platitudes, the cliches. I think when people say I can't imagine is one of a handful of responses that we typically hear people say. Because what do I say when someone is breathing?

It's very difficult.

Yeah, it's uncomfortable, so hard you don't want to be offensive, and so I can't imagine is a default response, and I think what she was trying to say is that, ok, even if you haven't gone through that particular loss at some point on your journey, even if it's not that exact scenario, you are going to experience a earth-shattering response. And so, instead of saying something that is cliche in nature, really try to put yourself in that headspace in terms of what that person might be struggling with and try to be there to hold them in that pain. And it's really complicated because, again, sometimes you really can't say anything. You really aren't supposed to say anything to take the pain away because that's what we try to do when it comes to grief and loss is take someone's pain away, but you're really taking away their opportunity to grieve. Instead, we need to encourage them to have whatever space and freedom they need to say what they need to say, to feel what they need to feel and be able to hold them in it, as uncomfortable as it is and it is uncomfortable to watch someone that you love to cry, to snot, to yell, all those things, but they need to, and so it's counter-cultural not to try to just put a little band-aid on top of the situation to stop them from feeling bad, versus allowing them to embrace it, but that's actually helping them to begin their healing process on their grief journey.

Yeah, definitely is, and I think, even having had my own experience that was so devastating and hearing all those plodgy, I still, you know, 11 years later, find myself in the position of going hmm, what do I say? What do I say? I mean, it's just a really difficult thing, and I think you're right. Empathize with them, put yourself in their shoes and say, okay, because I haven't lost my parents, I'm blessed that they're still here with us today. But when I hear people talking about it, I am now trying to think about wow, you know, that's something that's could be in the future for me. That's something that I actually need to think about in a way to kind of I don't know prepare myself or just to empathize with the people that I love that are going through it. I know we talked a little bit about this and I really want to hear your experience and it was kind of selfishly, because we talked about this thinking, this fight or flight response to where, when something bad happens in our lives, a lot of us tend to feel like we're waiting for the other shoe to drop, like, okay, if this happened, that anything could happen. Did you experience anything like that after losing your father and, if so, how did you respond to it?

Yeah, so it wasn't necessarily after losing my father. The loss of my father changed my perspective in terms of just the importance of loving hard. It was more of a positive response. When I say love hard, it's like not taking people in your life for granted and being with them. I have my mother still. I have my father, Jocelyn, make memories with her, so that, I think, was progressive in nature. But going back to your question around fight and flight or thinking waiting for the next shoe to drop, or I think that that's a response for many of us that we struggle with when we go through bad events, events that are traumatic, especially traumatic losses. We can struggle with this idea of oh, I cannot let this happen to another loved one. I have to be there. I wasn't there for this person before they died, so I can't let this happen again. It's this constant anxiety around this that can really cause us to struggle with depression, with living our lives with regrets. I know one individual who I'm close to lost a loved one and this was 20, 30 years ago and wasn't able to be there when they made their transition and still struggles with that today, with this regret, and it could keep you locked up in this place and it's really hard to let go. But we have to realize first that that person, when they made their transition, it's not our fault. They know we love them, they know it. I mean now, if you had some contention before they left, okay, that you have to release too, like if you were in strife with them, because we're imperfect and sometimes we mess up. But we can't change the past. We can't change it as much as we want to. We can learn from it and we can also think about the great memories with the individuals who we've lost. But we have to be careful to look at what happened in the past, not as this is indicative of the future, but as a reference. And that's very difficult because when it comes to grief, it is tied to our emotions and when we're processing things that are heavy in terms of pain and loss, that cognitive, our brain is not really thinking like that. We're thinking from the heart versus our mind, the logic of it. Like we know, it wasn't our fault that they died, but we somehow feel that we could have done something differently. And so I think, to go back to your question, just trying to say, okay, this is what happened, it doesn't mean that this is going to be what takes place in the future. In the present, let me try to learn from what happened in the past, but let me try not to allow the past to control me in the present.

Yeah, wonderful, thanks for breaking that down. I think that's very well said, good advice. So, jocelyn, having experienced what you called the slow kiss goodbye with your dad, you went through a lot of tough emotional stuff, but you certainly acquired some wisdom along the way. You told us how important it is to make memories with our loved ones while they're still here and how music can be so powerful to people with cognitive loss. You shared about the long haul journey of walking beside someone with dementia and how it's normal and natural to experience a kind of anticipatory grief. You said that, even though you had counseled other grievers in the past, that your personal experience with your own loss helped you understand the process in a deeper way. You acknowledged your inner struggle with processing your emotions. That admitted to putting on a mask to get through the early phase, but you pointed out the negative effects of delayed grief on our minds and bodies and encouraged us to let it out. You told us that when well-intentioned people try to take our grief away, they are in reality taking away our opportunity to grieve, which is so important for our healing. You told us not to hold on to regret, to learn from the past and to just let the tears flow when they come. Jocelyn, what other lessons have you learned from your experience? Can you share with someone listening who needs hope right now?

Yeah, I think that the first thing I want to mention is that grief is a unique individual journey that is messy. There is no right or wrong when it comes to your process, and people will give you advice and they will do the best they can. But at the end of the day, that's the amount of time you need, what you need to do for yourself to heal. That is unique, and so I encourage you to take your time with your journey of grief. Don't feel pressured as much as society tries to do that. But I also think it's so important for you to find community. I want you to think about what resources might be out there, whether it's this podcast, whether it is your church community, whether it's a friend, and also, when it comes to friends, a friend who's a good listener, because sometimes you just need space, sometimes you just need a hug, sometimes you just need to be on someone's couch where you can cry. But at the end of the day, don't run from your grief. It's a reflection of the value, the love that you had for whatever you had lost. It's natural, and we need to journey along with this because it's a part of our process, it's a part of our life and in fact, god will never leave you or forsake you, and he is close to the broken hearted. He is so close to the broken hearted and I felt God's comfort, especially in those moments in the middle of the night when you were like staring at the ceiling and you feel like this pain in your heart that's so deep that there are really no words to describe. Only tears can somewhat reflect what you are feeling inside. No human can fully hold that pain, but God can, and so in those moments that's where I found comfort, knowing that God was with me in it. He knows what it's like to feel lost with the sun on the cross, and he's going to hold me, he's going to get me through this, and so hopefully that encourages somebody.

Well, I know it will, and thank you for those great lessons. It's so hard to lose someone we love and when we're in the pit sort of feeling the heaviness of our grief, it's hard to imagine that good can emerge from it all. But it has in your life, and I so appreciate you sharing it all with us today. Well, reverend Jocelyn, I will put a link to your website in the show notes so that listeners can go there and learn more about what you do and get a copy of Breaking the Power of the Mask or one of your other books. And I have to say it was a pleasure talking to you today. Thank you for agreeing to come on the show and be my guest, thank you. Thank you so much for having me, michelle. So, for those of you listening, if you're in the midst of a struggle like this with your loved one, my heart goes out to you. Life can be so hard sometimes and losing someone we love deeply can hurt to the core and grieving while they are still here is such a complicated concept. But I hope you're encouraged today by Jocelyn's words. She's a strong, determined and resilient woman who was still rattled to the core when she lost her dad. It's normal and natural to feel pain, but please don't run from your grief. Like she said, find community, seek out a trusted friend and remember God as you're walking through this. He's near to the brokenhearted and he wants you to lean on Him. Thanks for listening.