Today Was a Good Day

Roger Young (00:06): (silence)

Roger Young (00:14): I said, "Well, let me take you to the doctor's to see what's going on." I told her, I said, "Well, she must be forgetting stuff," and they checked her and found out that she had dementia, and so I'm like, "Oh, my God." I was just, like, crazy, 'cause what is that? What is, you know ... What do you do? What is it? What ... What's happening? And I guess the part when they sh- finally showed me the MRI and said that it's a thing that eats at your brain... I, uh, I, uh, uh, I think I just cried in the office, in the doctor's office, you know, because I'm wondering, "What is happening, and why my mom, you know? What do I do? How do we handle this?" Then, they tell me, "There's no cure." Anyway...

Lillian (01:09): I'm gonna keep going. I'm not gonna stop.

Roger Young (01:13): Well, nobody's stopping you, Lille.

Lillian (01:15): I know. They can't. That's how... That's why I keep going.

Roger Young (01:20): I take care of my 81-year-old mother.

Roger Young (01:22): How that feel?

Roger Young (01:25): I've been caring for her now, next Monday'll six years. Me and her always been super close. I cried for two years because this is my mom. She was a woman that did a lot of stuff. I cried 'cause I didn't understand. I cried because I couldn't talk to the mother I knew.

Roger Young (01:46): That enough? That good enough?

Roger Young (01:47): She was the rock, she was the matriarch, she was the leader and everything changed and she just drops, it can get fearful. So I began to take her to every kind of doctor I could think of. From the eyes to the nose to the dentist to the hearing to the gynecologist to the heart doctor. Whatever I could think that goes on in the body an- and especially a woman's body. And that was another thing. She's a woman, I'm a man. So, what do we do there? You know? (laughs).

Roger Young (02:18): And I mean, for two years, it's "You don't know. You don't understand 'cause you not a woman." I don't know, but I'm- ain't nobody else taking care of you but me, so I'm trying to figure this thing out.

Marla Renee (02:31): Good evening. Um... Huh. My name is Marla Renee and I'm caregiver for my mother, Athalia Brown.

Athalia (02:45): My daughter does take care of me. I live here, she makes sure I eat. First of all, she met- to make sure I take my medication that I'm supposed to take, that keeps me going. At 89. You know, that's a blessing.

Marla Renee (03:01): She likes to brag on her kids, I know that.

Athalia (03:03): They all went to Catholic school. Yeah. 'Cause we didn't want them fighting in the public school. (laughs). None of that.

Marla Renee (03:11): It's kinda rough having a conversation with her 'cause there's a lot of things that she's not remembering. She can remember things from a long time ago.

Athalia (03:19): My grandmother raised me and I grew up in church and we always wa- w- uh, walked. 'Cause we didn't have a car. (laughs).

Marla Renee (03:28): She does a lot of repeating.

Athalia (03:30): Well all four of 'em went to Catholic school because I wanted to learn, to use their brain.

Athalia (03:36): They all went to Catholic school, they all went to college.

Athalia (03:39): Yeah, they all went to Catholic school too-

Marla Renee (03:41): Just let me put this somewhere-

Athalia (03:42): Catholic school all. No public school.

Athalia (03:45): They all Catholic- I told you that, to Catholic school. You know, and they got good marks, thank goodness, you know.

Marla Renee (03:55): I get angry, I get depressed and disgusted sometimes and...

KaTania Brown (04:03): I'll show you this one first, 'cause this is one of my actual favorites. I always loved this picture of me and my mom together. This is the person that I remember as the strong woman and... confident and she would do anything for me. My mom was born in Mississippi in 1938 and, and we are very, very close and she's always just been my supporter, my cheerleader and so we've always been a team.

KaTania Brown (04:39): My mom has always made a big deal about my birthday. My mom would always call and sing and start my day. She was the first person that I talked to on my birthday. Over the past three years, things have definitely declined where she doesn't recognize time frames and especially my birthday. That birthday was probably the hardest for me. She didn't call. So I miss those phone calls. It's a challenge.

Dr. Paula Duren (05:26): My name is Doctor Paula Duren. I am the lead for a group called Universal Dementia Caregivers and I wanted to introduce you to my mom and dad. Mom and Dad both had dementia, both of them died from the diseases, and like you, we cared for them.

Dr. Paula Duren (05:42): Once we start noticing things or changes in our parents or our loved ones that we're serving, it's an emotional reaction. It's not an intellectual reaction. It's really thinking about, "Well, they keep asking the same question over and over." Or, "Mom put the keys in the freezer. We need to start paying attention." Or, "Dad got lost on the way home." So it's an emotional issue initially, but then you become very practical on, "How can I now support this loved one?"

Roger Young (06:10): We are the caregiver. We are the nurse. We are the doctor. We are the accountant. We are the maid. We have so many different roles that we become in taking care of them that we probably didn't realize that we could do all of those roles at one time.

Roger Young (06:27): We got bills to pay, we got things to do. All right, I gotta go up here to the pharmacy, Ma, so I can uh, get you a refill.

Roger Young (06:40): Take that 20 and break it down. (laughs). Hey, happy holidays to you guys.

Roger Young (06:54): If you a real caregiver, you're gonna get lost in the person, in your loved one, the one that you're caring about. I'm tired, trying to stay focused and trying to get bills paid, trying to get doctor's appointments. Seeing if she wanna do anything. What if she wanna go somewhere? What if she wanna get out? You know, you just get lost in yourself. You forget about you and don't even realize that you forgot about you. You're lost in yourself and then you give up your life. I gave up everything except for church.

Roger Young (07:26): You don't get to go out. You- There's no more dating. Where I'mma bring a date to, and she, Momma, sitting right there in our face? And she be like, "Who is that? Well, what do they want?" You know what I'm saying? It's stuff like that. And then you reflect on, "Well, what happened to me? Who am I? What did I miss?" You know? What about [inaudible 00:07:44], you know, what about my life? When do I get my time?

Dr. Paula Duren (07:48): In order for you to be healthy, you have to take time for you. And what happens if you're not there because you choose not to take care of yourself? And if- sometimes I feel like I'm, I'm, I'm, I'm fussing, but it is so essential to be healthy yourself. A mentally and physically healthy mind sees in a much clearer way.

KaTania Brown (08:10): I know that my mom is changing. Our interactions are different, our conversations are different. She doesn't talk as much as she used to, but at the same time, I know that it's a gift because she's still here and I get to see here and no matter what, she's always excited to see me.

KaTania Brown (08:30): [crosstalk 00:08:30] Look at you, killer.

Bessie (08:31): It's true.

KaTania Brown (08:32): It's like, "Oh, there's my baby!"

KaTania Brown (08:35): Brought you some smell goods.

Bessie (08:36): What? You did?

KaTania Brown (08:37): I did. Hold out your arm.

KaTania Brown (08:38): You like that?

Bessie (08:38): Mm-hmm (affirmative).

KaTania Brown (08:43): Any time I get to spend time with her is also [crosstalk 00:08:47] one of those things that I like doing, just because it makes her happy.

KaTania Brown (08:51): Want some on the neck?

Bessie (08:51): This morning, I thought she was gonna drown me.

KaTania Brown (08:53): There you go.

KaTania Brown (08:54): I wish that my mom was whole and healthy and was, you know, capable and independent like she was when I was growing up. I would love to have that mom.

KaTania Brown (09:04): But I don't have that mom.

Bessie (09:06): What?

KaTania Brown (09:06): Yeah, his tummy. He had a tummy virus.

Bessie (09:09): How is he now?

KaTania Brown (09:11): He's good.

Bessie (09:13): Is he?

KaTania Brown (09:13): He's good.

Bessie (09:16): God.

KaTania Brown (09:16): Yes, it's what I do.

KaTania Brown (09:16): I have who I have and I wanna love her and I wanna appreciate who she is, what she was and where she is.

Bessie (09:24): This is good.

KaTania Brown (09:27): You really like that?

Bessie (09:28): Yes.

KaTania Brown (09:29): I always try and find a way to give her at least a little bit of joy and happiness [crosstalk 00:09:34] no matter what.

KaTania Brown (09:35): Am I buying chicken feet for Thanksgiving?

KaTania Brown (09:39): Hmm, it's hard to say. I don't want my mom to get to the point where she doesn't know who I am. So... And I don't know what that's like on her side, to not know what your child or who she is or who that person is.

Dr. Paula Duren (10:05): 'Cause you realize, we want them to know us.

Support Group (10:07): Mm-hmm (affirmative).

Dr. Paula Duren (10:07): And we want them to know our name. And I tell this story all the time. I went to my dad, this is what I- I did, because I wanted him to know me. I said, "Daddy, what's my name?" You my daddy. I said, "Daddy, what's my name?" He looked at me and said, "Don't you know your name?"

Support Group (10:25): (laughing).

Dr. Paula Duren (10:26): And I couldn't stop laughing. And do you know why? It doesn't matter that they don't remember your name. You remember it.

Support Group (10:34): Mm-hmm (affirmative).

Dr. Paula Duren (10:35): But even better than that, all the research shows us is that they may not remember your name, they remember the energy.

Marla Renee (10:42): Taking care of my momma is the hardest job I ever had. I'm a mother, a grandmother, a hair designer. Sometimes it does get a little bit taxing trying to keep up with everything that I have to keep up with for her.

Athalia (11:00): Everybody in our home or our family were busy body. They did something. They went to Catholic school, and- [crosstalk 00:11:10]

Marla Renee (11:09): She constantly talks and it's, you know, I have so many things that I'm trying to juggle and I like to keep things orderly.

Athalia (11:18): Because I do a lot of writing too. (laughs). I- [crosstalk 00:11:22]

Marla Renee (11:21): She gets upset sometimes 'cause I tell her, "Jus- just gimme five minutes. Just be quiet for five minutes so I can think my day through or think the next couple hours."

Athalia (11:32): I worked with Scouts when I had a family. Girl Scouts, Boy Scouts too. [crosstalk 00:11:38]-

Marla Renee (11:38): It's heartbreaking and they can't do, you know, some of the things that they wanna do and I guess they do realize there's something different and there's things that they just can't do anymore. Sometimes she gets frustrated and she says, "I'm gettin' outta here." I have to double lock the doors and at night I have to make sure everything is buttoned down.

Marla Renee (11:57): There was one day she ran out the door and I just had on my nightclothes. I couldn't, I couldn't chase after her. I just started screaming real loud, "Get back here!" (laughs). And she came back, but she had went down the driveway.

Marla Renee (12:13): You can discipline the child. You can't discipline your parents. She really gives me heck about that. She says I'm trying to be the mom and all that and sometimes I just have to tell her, "It's my house, so you have to do it my way." (laughs). And sometimes you just have to- you just have to laugh at some of the things that they do or say and not, you know, take it too personally. Sometimes I do though, but there's been a couple times that she's gotten combative. I didn't expect that. I think- she was- she was puttin' her hand in my face or something like that, and I'm, "You gotta, you know, you gotta step back, Mom." And she grabbed my finger and bent my finger back and I thought she was gonna break it.

Roger Young (12:54): And then one time (laughs), she said something, then she grabbed me up by my collar and socked me. I'm like, "Hold on. Hold on, now. I'm a grown man now. You in my house. I'm not in, in your house. We gonna have to change this here." You know what I'm saying? But I had to catch myself. Because this is my mom, she don't know what she doing, but at the moment, you just grabbed me up, you just socked me. My mind didn't go to that you don't know what you doing. My mind is to retaliate and tell you, you know what I'm saying? (laughs). And it's, you don't wanna say those things to your mom or to your loved one, but you know, sometime we just be caught off guard ourself.

Dr. Paula Duren (13:33): First of all, we tell you to- to know that that can happen, to not take it personally. They went, "Paula, how can I not take it personal?" You remember I have a brain disease. And the more you tell yourself that, the things that you see don't shock you the same way.

Roger Young (13:50): I mean, there's some eerie things that happen. I mean, they come ac- they come and they might think you the loved one, you know? Sometime my mother say some little provocative things to me and I'm like, "Oh no, Mom. (laughs). You know, you the mom, I'm the son. We can't go there."

Dr. Paula Duren (14:10): There's no way you can know everything right now. Every day is a journey. Some strategies you use today won't work tomorrow. Um, they may love you today and curse you out tomorrow. And so you accept the moments and that's why I just say, "Be there, present, accept the moments and just kinda say, 'We're learning our way through this.'"

Marla Renee (14:27): Sometimes I laugh though, and she gets mad.

Dr. Paula Duren (14:29): That's okay.

Marla Renee (14:30): She gets mad-

Dr. Paula Duren (14:31): I'll move past it.

Marla Renee (14:31): But then she's trying to jump on me. (laughs)

Dr. Paula Duren (14:35): All right, well again, then one of the things to see, what I suggest is you have to see what works at any given point in time.

Marla Renee (14:43): Yeah.

Dr. Paula Duren (14:44): Sometime laughter can work, sometimes laughter won't work.

Roger Young (14:47): They don't know. They don't know. But some people don't know that they don't know. They still think they do. You know, sometime I directly show her stuff, what she done and what she doing and she looked at me, "I ain't do that. No, I ain't. I ain't do that." I got it in your face. "Uh-huh (negative)." And I'm like, "What the..."

Roger Young (15:14): They don't know. No matter how you want them to know. They don't know. And when you catch that, then you be on to something.

KaTania Brown (15:30): Well, today is Thanksgiving Day and I am just leaving my mother's for dinner. The excitement that I normally receive when I get there was not the normal.

Dr. Paula Duren (16:09): What happened on Thanksgiving?

KaTania Brown (16:10): This is the first time she didn't recognize me.

Dr. Paula Duren (16:12): Mmm. And that was one of your biggest worries, wasn't it?

KaTania Brown (16:19): Yes. Yes. As I was unpacking the- the food um, she's like, in a very small voice, "Who are you?"

Dr. Paula Duren (16:28): Oh.

KaTania Brown (16:32): And I got right in front of her and was like, "You don't know me?"

Dr. Paula Duren (16:37): Aw.

KaTania Brown (16:41): And she said, "You look like my daughter." And I said, "It is your daughter." And she was like, "No." I said, "Yeah."

Dr. Paula Duren (16:50): I really believe that they may not remember your name, but they remember your spirit. They remember how you engage them, the energy. They remember your voice, because your voice is like music to them. So the fact that she doesn't remember, I appreciate and know what that feels like, but in time, you'll really come to see that she will never forget you.

KaTania Brown (17:10): I can't quite get her little voice out of my head of, "Who are you?"

Dr. Paula Duren (17:20): My mom um, said to me, "I don't know your name, but I love your spirit." To me that was the most powerful thing anyone could have said to me. That almost made the whole journey worth it.

Marla Renee (17:31): Good evening. It's um, Wednesday and um, it's been a pretty good day for uh, for me and mom. She went to the, to the [Pace 00:17:54] Center and um, did you play bingo today?

Athalia (18:02): No.

Marla Renee (18:03): Okay. Well, yesterday she um, she went to the Center and she, kinda got into a, I don't know, a little uh, down spiral because a- a woman said something to her or something like that. So my sister took her home with her and um, she spent the night there. And she was doing better today, so she went back to the Pace Center today.

Marla Renee (18:36): Okay. [inaudible 00:18:37] Other than that it's been a good day. Good day for me, I uh, kinda of inundated with paperwork, but um, tackling it and um, it's a good day.

Athalia (18:57): My great gran. Isn't that wonderful? (laughs).

Speaker 9 (19:01): I don't really read the rules, but I learned from my [Deedee 00:19:05].

Athalia (19:05): Ba dum dum dum.

Speaker 9 (19:05): Gotcha.

Marla Renee (19:10): I've got an 11 year old granddaughter and she likes to play with her.

Athalia (19:16): And now, right? Okay. There.

Marla Renee (19:21): And it's like she turns into a little kid when she's playing with her. She has fun doing that and uh, she does like to play checkers.

Speaker 9 (19:30): Lucky.

Athalia (19:30): I let her win. (laughs). That's my great gran. I love her. (laughs).

Marla Renee (19:38): My biggest fear is that, you know, she'll forget, you know, forget the people that, that uh, forget they're family or something. I- I don't want her to, to forget, you know, that I'm, I'm her daughter.

KaTania Brown (19:53): So now it's just really kinda trying to I guess mentally prepare myself for the possibility that she may not recognize me today.

Bessie (20:07): Hi.

KaTania Brown (20:20): Hi. [crosstalk 00:20:20]

KaTania Brown (20:26): The reaction that I'm used to having with her is she always brightens up whenever she sees me. It's almost like the first time she's ever seen me, which is always good.

KaTania Brown (20:39): You've met them before. Today was an amazing day because she was super excited to see me and that's the reaction that I always look forward to seeing is that "Ah!"

KaTania Brown (20:51): It's a surprise.

KaTania Brown (20:51): Kind of take her breath away just a little bit.

KaTania Brown (20:54): So how you doing?

KaTania Brown (20:54): Mm-hmm (affirmative).

Bessie (20:59): Yeah. Somebody put tears on her face.

KaTania Brown (21:04): Somebody put tears on your face?

KaTania Brown (21:04): Are you warm now?

Bessie (21:06): I'm getting there.

KaTania Brown (21:07): Okay, well put your cover back on your um, legs.

Bessie (21:08): I'm- I'mma get on that bed.

KaTania Brown (21:08): Yeah, in a little bit.

KaTania Brown (21:11): It's happened. It's nothing to say that it's not gonna again. It's just now you have to almost prepare yourself for that possibility. It's still gonna hurt.

KaTania Brown (21:31): Why? You want one?

Bessie (21:32): Yes.

KaTania Brown (21:33): It's still gonna be painful-

KaTania Brown (21:35): ... but I still have to do what I have to do for her. [crosstalk 00:21:40] I'm not gonna distance myself from her to alleviate myself of pain when I know that she needs me.

KaTania Brown (21:50): So what else do you want for Christmas?

Bessie (21:53): Oh. I want that car.

KaTania Brown (21:54): Oh, well, I need to win the lottery for that one.

KaTania Brown (21:58): Don't give up on that loved one. Never give up on them.

KaTania Brown (22:05): Because it's gonna be left up to you to make sure that they're okay.

KaTania Brown (22:09): There you go. Smooth as a baby's bottom.

Bessie (22:15): No.

KaTania Brown (22:16): When you know that it's probably closer to the end, you wanna make every moment count as much as possible. It's finding those ways to make them comfortable and make them peaceful.

KaTania Brown (22:30): Are you tired?

Bessie (22:34): I just [inaudible 00:22:34].

KaTania Brown (22:34): This whole experience is [crosstalk 00:22:37] another little treasure that I didn't except to happen, for both of us.

KaTania Brown (22:40): I brought you some what?

KaTania Brown (22:44): And I sometimes wish that-

KaTania Brown (22:47): ... if dementia was really selective, it would take all bad memories away, and they could only remember the good stuff and remember their family and their friends and their loved ones and the life they had that was really great.

KaTania Brown (23:08): Do I know you? (laughs).

Dr. Paula Duren (23:11): Well, when we hear about terminal diseases, we only think negative. Yet I believe that in this moment, you have an opportunity to reframe it and I reframed dementia as a gift that you've been given to walk someone the last journey.

Roger Young (23:26): (laughs). You going. I told you you- you do that.

Roger Young (23:35): I try to do stuff to always keep happiness and joy and if I can always keep her laughing and keep her smiling, then it's happy for me. I could say, "Good morning, Momma." And she might be like, you know, whatever. But when I say, "Good morning, sunshine." She smiles. And I smile and that's a great way to start a day.

Roger Young (24:01): I know she's momma, but I want her to know she's more than momma. She's a light to my life and maybe that keeps her pushing.

Roger Young (24:09): (laughs). Mother.

Roger Young (24:09): It's like sunshine. I open up the blinds and everything lights up. Her and the room and everything be lit.

Roger Young (24:17): Get you a little light in your life, huh?

Lillian (24:24): I got one. That why I can keep going.

Roger Young (24:24): Well, what light you got?

Roger Young (24:29): I mean, my mother never told me she loves me until now. Now she tells me she loves me all while I was growing up. I knew she loved me, that she was- to me, she was the best and she took care of me. But once they got this, it seems like she got a greater love and appreciation for me somewhere within her.

Roger Young (24:48): (laughs).

Roger Young (24:48): (silence)