With Love Chuckie, A Granddaughters Love and Care For Her Grandmother with Ciana Singh

This is a great story of a granddaughter's love and respect for her grandmother. It's not always easy, but it's always worth the effort. We talk about some to the hacks Ciana has learn to keep her life as normal as possible while taking care of Chuckie. A great story that is well worth the list. Also check out the picture and video on Instagram at withlovechuckie.

About Ciana

The best act of love and kindness one can provide for another is caring for someone in their most vulnerable and weakest state. I have been caregiving for my grandmother for six years now. This journey has had its fair share of ups and downs. My Grandmother Chuckie has had Dementia for a total of 8 years. 

 

In the beginning she was very forgetful and couldn’t remember whole phrases and sentences. She couldn’t remember what average everyday things were called such as forgetting what an apple or orange was. The mid-stages were very painful to watch because during this stage she was very angry, agitated, thought friends and family were stealing from her and she would cry a lot. During this stage we noticed that she wouldn’t eat and because of this I went from being a part-time caregiver to a full-time caregiver.

 

When we found out my Grandmother had Dementia I started helping her out more with driving her places she wanted to go and drove her to doctors appointments. Then, once we noticed she wasn’t eating and hiding odd things in odd places I started to watch her full-time. It went on to get more difficult when the attempt to wonder really started. She would try and leave the house all day and all night. Her circadian rhythm was completely thrown off. This lead to my mom and I having high stress, sleep deprivation and exhaustion. 

 

These late stages are interesting because although her ability to do anything for herself is virtually nonexistent it seems to be in some ways easier. She is a lot weaker and has lost a ton of weight, so due to this she is less angry and combative because she is just simply exhausted herself.

 

Overall, I still won’t trade a moment with my Grandmother for the world, even the difficult moments. This journey has made me a better person, taught me the true meaning of what unconditional love is, made me become more patient and understanding in general not just as a caregiver, but in life. 

 

The main reason I have had the courage to tell our story is just to help others out there going through this same journey. I want to encourage  all caregivers to get as educated about the condition as soon as possible because knowing what to expect will make the journey slightly easier. A lot of heartache happened simply because my family and I weren’t prepared. We were lost and confused and we want to prevent that from happening with others. 

 

I will continue to share my tips and tricks with real life examples in the moment with my Grandmother to show that anyone going through this is not alone.

Instagram - withlovechuckie

www.ageucational.com

Full Transcript Below

With Love Chuckie, A Granddaughters Love and Care For Her Grandmother with Ciana Singh

00:00:20
Roy
Hello, and welcome to another episode of educational. This is Roy. We are a podcast that we are chronicling our journey, not only my journey through,

00:00:29
Roy
Getting close to the aging point and aging process, but also both of our parents are getting to that point that they need more and more help. Actually, I think he was out last week with my mom, looking at maybe an independent living apartment, something for them to downsize into. Now we want to Chronicle all these different things, because I want you to think that you're alone. There's a lot of us going through this and, it was trying to navigate. Hopefully we can give you some information that we've learned along the way, but today we've got an interesting guest that she has followed on Instagram, and we just love her story so much. Thank you so much for taking time out of your day. I just want to set the backdrop, but, my mother and her grandmother all moved together, caregiver most full-time I suspect. That has become my role, out on your own and about moving back.

00:01:42
Roy
You can be her primary caregiver, but, we talked a little about pressure. The last episode, the last posting we saw from you that made the point that we knew I needed to reach out was that, I think or something like that, a treadmill across the room, the workout, but just, it's just, being able to try to take care of her. So, first off, thank you so much to the show. Tell us about how did this come about, became your grandmother's primary caregiver.

00:02:29
Ciana
I noticed that my grandmother could not drive anymore. It was just having a tough time with, a small every day to day things that she used to do. I said, Hey, grandma, why don't I just start to take over and take you to your doctor's appointments and take you to the store. And, we can spend time together and it'll be fun. I started doing that and as the time progressed, I noticed that different areas of her cognitive abilities were declining. Her ability to speak her ability to pay attention to her bank account, her ability to dress herself, her ability to do things, head toe for hygiene. The biggest thing is that when she started wandering, trying to wander away from the home is when I decided to move in. Okay. And she.

00:03:18
Terry
Was, was she living on her own at that point? Or was she with your mom?

00:03:23
Ciana
Her and my grandmother have, or my mom and my grandmother have lived together for, since I was a young child. Kind of the same before were talking before we started, my mother had my grandmother moved in with us, but I was very young, so I'm very attached to my grandmother. So it's almost like I had to.

00:03:41
Roy
Yeah. Okay. Yeah. I'm in that were talking pre-show, I'm kind of in that position, my grandmother, my mother's mother was very close with us and I had the good fortune in my kids. I had the good fortune that, she, even though she wouldn't give up her house for a long time, for a couple of years, she would still come and stay with us probably, four or five nights every week. It was an amazing experience that we all bonded and got along very well. It can be good if you can make it work, but there, the important part is something that we talk about here a lot too, it's that, not giving up yourself and I know that you struggle well, yeah, everybody's struggled, but you have become, I guess very good at designing things like that instance where you could get her set up where you could keep her busy for that would allow you to get on the treadmill.

00:04:39
Roy
Because people like myself, I mean, I would just be like, fuck, pop them down on the couch.

00:04:51
Ciana
It was difficult. I'm not going to lie. When I started taking care of my grandmother for, going into full-time from part-time, I completely lost my sense of, balanced, when it comes to, taking care of my mental health, taking care of the things that, I love to do, I'm a big traveler, right before I started taking care of her full-time I was traveling to Egypt. I went to London and I had all these other plans on going, to other areas overseas. And, I really had to, take a whole at that particular part of my life. And, then I started noticing that not only was I neglecting, things that I love, like traveling, but it was even coming down to my fitness goals, my nutritional goals for myself, just things that I love to do. I woke up and dad was like, I have to figure this out.

00:05:45
Ciana
God's put me in this position for a reason. Instead of looking at it like a prison sentence, I need to start looking at it as a privilege and an honor. That's kind of what, helped, flip the, flip my mind to, looking at this, an opportunity to balance and then also, get creative. Then, look at this time to spending with my grandmother as an honor. So,

00:06:09
Roy
And how long, I'm sorry. How long ago, did this happen as far as your grandmother and your grandmother's name is Chuckie, right? Yeah.

00:06:20
Ciana
She has been diagnosed for a total amount of years of nine years. She was starting to really struggle on a high level, about three years ago. Now I would say she's in her severe late stages, but when I decided to go full-time, it was, three years ago.

00:06:41
Roy
Okay. Yeah, I think that's awesome. That's a great message about flipping the switch, because I do think that we in America, the other there's other cultures, I'm not sure about Europe, but I know what the Asian cultures, very family oriented and, they want, I think, sometimes over there it's the opposite. They, they actually fight to see who gets to take care of mom and dad, where, we kind of fight to see who has to take care of.

00:07:09
Terry
And, and it's a big thing for them to be able to take care of their elders. And, that your family is such a great unit that was kind of instilled. I mean, you're, you were so close to your grandmother that, you felt that you wanted to do this. That's an awesome thing. Yeah,

00:07:31
Ciana
Yeah, no, absolutely. Yeah.

00:07:33
Roy
What are some, I guess, first off, what are some tricks or tips or hacks that you have the treadmill thing, do you still need, are you able to be in a position to actually get out of the house some and go,

00:07:48
Ciana
Yeah. That's actually significantly, been reduced lately, just because she is in such a severe stage of her dementia, however, I'm not letting that stop me. So, so for example, if I love to meditate, that's very important to me. It's a part of how I start my day. What I've started doing is I meditate with my grandma and so I'll set my grandma up. I'll set myself up. We both have our tea in the morning. Usually she has juice or tea and, I'll sit and I'll put our medic, my meditation music on and I'll do the meditation with her, before it was something that I was doing alone, but I'm incorporating her into it. Yeah. Another example is, I love to eat healthy foods. So, another thing that my grandmother used to love to do was cook. So now I incorporate her into that. She can't cook anymore.

00:08:46
Ciana
She can't, she can't even speak anymore. We, I don't let her handle any utensils or anything like that, but I literally set up a, I'll put it in the kitchen with me and I, have her little fidget pillow and I'm talking to her and I'm like, oh yeah, grandma would, should I put this in? I'm going to put in the tumeric. Now I'm going to put in the salt. I just incorporate her into me doing a normal, everyday thing that I'd be doing for myself. It kind of knocks out two birds with one stone because I'm keeping her highly engaged and then I'm also doing something for myself. I'm also feeding her healthier food than she used to eat. She was big on the fried stuff. And so, yeah. So, it's I just incorporate her into my day, another example, I have to check emails.

00:09:32
Ciana
I have to check emails, I literally sit next to her while she has her fidget pillow Walsh or she'll have like her baby doll therapy. I'll look at my emails while I'm looking at my emails, she's sitting next to me. I think, before I used to get so frustrated, and I really want to get this done, or I really need to read these emails, or I need to look at my bank statements or I need to, because I had two jobs at one point, but before the coronavirus, I was balancing both caregiving and doing both jobs. Now I just am taking care of her. I used to have to check emails and, instead of getting frustrated again, I just incorporated her with that. That's what I would say I do the most is just instead of looking at it, like I'm used to doing something this way, I just have shifted it to, how can I blend the two and how can I balance it?

00:10:22
Roy
Yeah. Now I do have a couple of questions of some things like first off the meditation. What is her response? Does she, and I guess you said she's non-verbal so I know it's not like she's talking, but does she sit quietly and you feel like that she's involved or is she still moving around or I guess how does that go day to day? Yeah,

00:10:45
Ciana
That's a really good question. At this stage she's very immobile, so it kind of works out to my benefit now because she's, she doesn't really stand up on her own unless I pick her up or, again, she's, she speaks in gibberish, she'll randomly say like a word here or there, but she doesn't really speak much. Again, it's really early in the morning, when I like to meditate. She's typically like kind of getting up herself. So, we're in a routine now, however, during the middle stages, I would say that's the most difficult time period because she was still very verbal and she was still very mobile. During those time periods, my meditation and things like that did suffer, I guess you could call it suffering. I mean, really, it was just replaced with caring for my grandmother. So I had to figure it out. I said, okay, I'm not able to do something important to me anymore because I'm shifting that at that time period to my grandmother now.

00:11:44
Ciana
Instead of dishonoring that I just started honoring that. I said, Hey, look like if this point in my life, I can't do a meditation because I'm taking care of my grandmother. That is to be honored. I should be grateful for that because again, I could be sick myself, I could have, be in a position where I can't care for my grandmother. I just started to shift my mindset. When it came to like, being invited to places or going to, out in LA and, being a young girl and wanting to, be social. I said, instead of being, oh, I have to miss out on this, it's no, I get to take care of my grandmother during this time of her life. It's a short season and it's something to be honored. So.

00:12:28
Roy
That's awesome. I mean, not that I love the short part, but the season of caregiving that you're going on, being able to see that as a privilege is an awesome thing. Yeah. I commend you. That's a lot of maturity. I mean, cause it's even hard even at my age, even though I know somebody's going to have to take care of me shortly still, it's like, thinking about the things that, looking at it from the other perspective of having to give things up instead of, Hey, what, this is, this can be my pleasurable thing. This is my way to give back. That's a great spirit and a great attitude. The other thing I was going to ask you was about the cooking. When you pull her up and set her down and you're communicating with her, do you feel that she, even if she's non-verbal to you, do you feel like that she is on the same page with you and that she's in there cooking with you or she telling you to throw in some more, cumin over here and some Bazell over there?

00:13:30
Ciana
Honestly, no, she's not really interactive. She's not, her eye contact is not there. I can tell that there's some level of, feeling involved just because I I'm paying attention to her accused with her body now. It's almost like we've developed a way to communicate. Although she is speaking in gibberish now, so I'll look at how quickly she moves her hands or her inner fingers. I'll look at if she's moving her feet like this, usually I can tell she's happy or engaged if she's moving her feet, like, kind of when you're happy and you're excited. If she is sitting open, like with her body just straight forward and her legs are not crossed, she's, kind of just like not paying attention. If she has her legs cross, I feel like she's comfortable. Cause that's all, that's always been her thing. She crosses her legs and she's getting involved in like a nice, conversation with their friends or whatever, that's her thing.

00:14:32
Ciana
I can tell when she's into it, when she's has her legs across and she's kind of just looking down, she's not into it. That's kind of where we're at with this stage. Because, just in a lot of the research that I've done, it's my job as a caregiver to keep her as highly engaged as possible. Even though she's not really, having the eye contact or she's speaking back to me, just me speaking with her is a way to just keep her brain, having some level of function with just even hearing the sound of my voice.

00:15:05
Roy
Yeah. That, then that was the next question I was going to ask you was, have you gone through, do you have a formal background in caregiving or is this things that you have learned just research along the way or how have you been able to become this? Self-aware not only of yourself, but the, I guess the engagement or the surrounding of your grandma mother as well.

00:15:27
Ciana
Yeah. Five years ago I was in the dark. I was lost. I was confused. I was frustrated. I was upset. I was angry. I was like, I thought I was just going to be taking my grandmother to the store. Like I just thought I was going to be taking my grandma to the doctors, doctor's appointment. And we go for lunch. Like I never knew that it would turn into this huge chunk of my time in my life being invested in my grandmother. So that's just the honest truth. I had no idea what I was signing up for. Do I have to be honest a lot of times then, some of my family members or friends will say, wow, you're just such a good person. You're making this huge sacrifice. Well, you don't honestly know, like I didn't know what I was signing up for. If I did know what I was signing up for, who knows how I would've necessarily would have reacted.

00:16:19
Ciana
So, that's just the honest truth, same firm I could speak for me and my mother about this. We were very, very uneducated on this. As time went on and the high level of stress, the high level of frustration, the high level of just sadness and confusion, because again, with dementia, they become very feisty, very, my grandmother even got physical. I mean she's old and it's not like it when she hit me, it was, it hurt or anything. But, but that was tough at the time. I didn't know that her brain was dying. I just thought that she was being me, to me and my mom. So we would argue and all that. I was like, there has to be a solution for this, like this doesn't, this just doesn't feel like I'm just supposed to deal with this. Like, there's something going on. I started doing, looking on YouTube, and just literally started Googling stuff.

00:17:14
Ciana
I started to learn and come to find out that she literally has no control over what's happening to her. Unfortunately, when she got diagnosed eight years ago, she got a diagnosing, they asked you a couple of questions about a clock. They asked you to write some stuff down and they kind of just diagnose you and give you some medication and then that's it. And they don't. And that was just our experience. At least I don't want to speak for anyone else's behalf or on the medical system, but our particular experience was here's a medication, the buck. We just thought she would forget things here and there, but not the case. It's not a memory issue. It's a cognitive decline issue. Right. So, so I started doing research and I never knew that there was an abundance of information out there and abundance of resources free, by the way, by the Alzheimer's organization.

00:18:07
Ciana
There's also Alzheimer's LA, which is like another sector, there's, adult daycare, that is offered in a lot of local communities around the United States. I just started researching myself, I got opened up to a plethora of information and then started to learn different tactics on how to stay calm and how to stay patient in combination with, again, my personal, ideals as far as meditating and eating healthy and stuff like that. That's how I was able to come to a level of like maturity and acceptance and a high level of patience.

00:18:41
Roy
What about your sleep patterns? Because I know that can be, it's not only huge for the individual that's being cared for, but also when we get tired, our patients become thin. And, I used to be an ombudsman for the state, volunteer on buds, the first state of Texas. One thing that we noticed and our nursing homes is that when staff had to double over shifts, when they were pulling double shifts or working crazy hours, three or four weeks with no days off the tired, or they became the more susceptible to abusive situation, then it could be verbal or just talking mean to the resident or whatever. I'm interested how the all well, what's her sleep pattern, number one, and then kind of how do you match that? Where you can get enough rest where you feel good every day?

00:19:35
Ciana
Yeah, no, absolutely. I can say that right now we are in a better sleep pattern and a better schedule with her sleeping. She, I gained because I think she's just so weak. She's in the late stages, she, goes to sleep around 12, like midnight, maybe one in the morning, and then she wakes up like around eight. It's, that's basically when me and my mom go to sleep. Now about two years ago, she was getting up at three in the morning, fully dressed, trying to leave the house. So, during those stages it was just difficult. It was difficult. It was, a high level of stress. Again, like to your point of when you're, when your lack of sleep, in a high level of stress, you don't handle things as best as you possibly could have. If I would've known now, what I know now, then I probably would have handled it a lot differently.

00:20:31
Ciana
But, just because I was uneducated and, I was misinformed. I was, I just kind of just got through the date, the best that I could, there was no real rhyme. There was no real steps or any breathing tactics or anything that I was doing, but now I, there's, so many amazing resources on YouTube. I actually found that, they have done studies where if you, brief, just literally take five minutes of breathing five throughout the day. Five different times throughout the day, you actually can, reduce your level of stress, even if are sleep deprived. Usually when we're in like a, a high level stress environment or position we stop breathing, right. We just start restraining our breath for whatever re I guess it's just like a natural human reaction. If you just literally allow yourself to breathe, that will definitely help you out. So, yeah, during that time I was not breathing.

00:21:31
Ciana
I was not meditating. I just was kind of getting through the day and it was stressful, but what I want to tell others out there that are in the more, the beginning stages or mid stages, if you just take two to five minutes throughout the day, there literally is a abundance of studies shown that really helps with just being able to get through each moment.

00:21:49
Roy
Okay. I was going to ask you, okay, so you talked about when, a few years ago, or three years ago, I guess when she would get up at 3:00 AM and get fully dressed and try to leave. Did you have, I remember this about my dad, because my dad, had a long battle with Alzheimer's as well, and he's, he passed away about six and a half years ago. I remember, when mom and dad were still on the house that they lived in for a long time, he would, and he was still driving. It was not fun. He would put the, in, he would put his car keys in the freezer and Everett, we would look forever for those guides, just weird places to store things. I, I remember like it was yesterday and him going out, trying to leave in the middle of the night, many times, we started putting up signs, just stop, whatever.

00:22:49
Roy
We didn't really have the alarms and all of that. Were you able to have alarms, did you hear her getting up and rub rummaging around? How did you do that? Yeah,

00:23:02
Ciana
No, that's a really good question. We started bells on her door, putting bells on her door and bells on the front door. That was, again, not informed, had no idea about resources or if this was even normal. Like, we didn't know that this was even normal for people with dementia to be doing. We just thought it was like our individualized circumstances with my grandmother. So, we started doing the bell thing. I even started tying like, a scarf, like in such a way to where she wouldn't even be able to open up the front door. Like it would, she just wouldn't be able to like, undo the knot. It was just like some makeshift ways to just keep her from. Then, because when she started trying to leave, I, I would, I'm asleep in the living room, during the stage of her, wanting to try to leave.

00:23:56
Ciana
So she couldn't get past me. I was when you kind of, just kind of have like sleep with like a one eye open, I guess you could say. I just had to, like, I, that was just the stage that I was in. Of course her trying to leave out of the front door, I would hear the bells. I would hear her struggling to try to undo the knot and I would wake up and I would have to, get up, move her back into the room, try to get her to calm down and try to put her back to sleep. Like you said, you mentioned the stop signs. I do want to tell everyone out there's a ton of different ways. It's a tentative for things that you can do. You can literally put, they have these things. I think you can get them like anywhere, like on Amazon.

00:24:32
Ciana
I'm not sure, but, you can literally put a bookcase over the door to where, it doesn't look like it's a front door or like a big stop sign. Cause that is something that they recognize. I also started, me and my mom, we had, our maintenance, install, a lock, like the, just like the change we had her have them install it at the very top of the door. She literally couldn't like even reach it. If she tried to open up the door, it would like make a noise. Then, of course from opening it with like slam back forward. So that's what we had to do. I know that there is, alarm systems. You can put, there's pillowcase alarm systems. There's a map that they can sleep on that will like start to make a noise. If they try to get up, there's a map that you can put, at the foot of the bed.

00:25:21
Ciana
If they walk past it'll alarm again. We started having the camera system. The camera system and it, these big, well, it was a big, it's a baby monitor. The baby monitors have a really sensitive, like, the speaker on is very sensitive. You can almost even hear her breathing. She started to get up, we could hear the shuffling. So, I mean, with the alarm, with the block, with the bells, with the camera, we kind of just did all of that. There's also another thing I do want to add really quick is if you were a loved one is starting to wander. They do have these, devices that they can, wear to where the GPS system. If they are able to, for some reason to get out, it's a GPS system and you can literally call the police. They have that GPS system in the system, and they just literally alert every, alert.

00:26:15
Ciana
It's a, a 9 1, 1 is, trying to find someone like in the mountains or whatever, or like any pain, a cell phone it's like that they ping like that GPS device, and they're able to find them.

00:26:30
Roy
Free or whatever.

00:26:34
Ciana
Yeah. If you just get in contact with Alzheimer's the Alzheimer's organization, they'll connect you with someone that can get you set up with that.

00:26:42
Roy
Early stages. I know that they can, what they can also do is set up perimeter, like a two mile radius of your home. If they break that radius, then you would be alerted and alarmed and a lot of great inventions out there. Cause one was when you redirected her, when she was at the door already, did she become combative or was it easier for you to get her back in bed to understand that it wasn't time to go anywhere?

00:27:11
Ciana
I would, at the beginning stages, I would get mad and frustrated. We'd get an argument. I would say, you mean, what are you doing? It's three in the morning. You need to, lay down, what are you doing? And she's like, don't tell me what to do at the beginning. It was bad. But, I then learned, that there is tactics and ways to where you can meet them in their world. Right. She's trying to go somewhere because, maybe she's used to going to work every day and it's, she's confused. I'd say, about six months in, I would S I would reason with her, of course I'd be tired, puffy at all, but I would read what I was saying, oh, grandma, where are you trying to go? She's like, well, I need to go somewhere and say, okay, that's great. Well, how about this? why don't we both get some rest, just get a couple of hours of sleep.

00:27:59
Ciana
In the morning mean you can get up, get ready, and then we can go on a drive or we can go where you'd like to go. And she'd be like, okay. Like I I'm open for that. We would just, I would find ways to reason with her. I would, I would say, let's do this together. Even my approach started to be more calm cause I would approach her very, frustrated and annoyed and tired, but then I just started to say, Hey, look like she doesn't know what she's doing. So then I would approach this. I hate Greg where you're trying to go. So, my approach got more calm. I started to reason with her and I started to meet her where she was at.

00:28:36
Roy
Yeah. There was a, it was a community that I was visiting. One time that they had a resident that he wanted to go to work every morning. He would get very upset because he's like, I have got to catch this bus. And, after a while, instead of trying to stifle him or to tell him how wrong he was, what they did is they got a briefcase and a hat and they hung it up on the hat rack in the office. When he came in, he'd get his hat, his briefcase he'd make about three laps around the hall, come back and put it down. He was done, he got it out of his system. I think that's important that w where we can within safety of everybody involved, we kinda have to figure out ways to just let them be where. Not always trying to bring them back to reality because my, luckily I haven't had to deal with it, but I've heard that is just a losing battle, that we will never be able to argue them back to where we want them to be, are where we are in this place in time.

00:29:39
Roy
We have to figure out, kinda like you did, how can we redirect them in order just to have some peace as well?

00:29:48
Ciana
No, absolutely. No. I mean, that's exactly it, I even, there's a couple of times where, I even let her wander. So, she got ready, got up and set up one day. I just was like, I'm just gonna, like, not, I'm not going to either lock the door. I'm just going to let her wander. I'm just going to be six feet behind her. Just, I'm just curious, where does she try to, like, where does she feel like she needs to go? What is she trying to do? So I did that. She was, comfortably walking down the hall. She had her purse with her, she had her jacket going on. She even remembered how to push, the elevator and she was waiting for the elevator. She, even, she got really confused at that point. Cause she's like, okay, wait, how do I get on the elevator? Do I like, what am I doing here? Because she, we lived, we used to live in Sacramento.

00:30:39
Ciana
We always lived in a home like a house. Now we live in an apartment building. She's, I think she was reverting back, like, wait a minute. I just pushed the elevator button, but I'm not sure what to do. She just kind of did like of a lap in that it just kind of looking around. And then went back into the house. I, I, she wanted to leave the next day. I was like, okay, I'm going to see if she's going to do the same thing again, this time she figured out how to get on to the elevator. I just got onto the elevator with her. I didn't say anything. I just acted like I was like a random person. She's not even paying attention to me. Then I'm there following her. She walks out to the parking lot. She goes to the front of the apartment building and she's just waiting.

00:31:23
Ciana
She's just waiting. I asked her, I said, grandma, who are you waiting for? And she's like, I got to go. I was like, okay, we'll just wait. We waited and she kind of got confused after about 10, 20 minutes. She just was willing to let me guide her back upstairs. I think after those moments of allowing her to see that she's going to be very confused when she's going on her own, it kind of made her not want to do them anymore. Yeah. Yeah. Yeah. So.

00:31:52
Roy
When did y'all make that move, from the house to the apartment? How long ago was that?

00:31:58
Ciana
It was about eight years ago.

00:32:03
Roy
Yeah. I was just wondering, how did she, of course, eight years ago, she wasn't near as a, I guess she wasn't as far along as she is now, but was that hard on her to make that move?

00:32:15
Ciana
Yeah. The thing is that she's, so it's kind of interesting story. My family, I was my family member. I were raised in Los Angeles, the nightstand Newport earthquake happened. So we moved up to Sacramento. My mom's dropped out. We went to Sacramento. During that time, my mom just had me and my brother she's single mom. You know, she needed help. My grandmother moved from LA up to Sacramento to help her. From my, late elementary school years, all the way up until high school, I was in Sacramento, but then I came back down to Los Angeles for college and all that stuff. I've been back for a long time. My grandmother had been saying after she just stopped, stopped working, she was like, I really want to be back in LA. My mom would be like, okay, maybe in a couple of years. Finally my grandmother was like, I'm putting my foot down.

00:33:11
Ciana
I would love to be back in LA. My mom was like, okay, we'll see on us down there. I have a job opportunity I can do out there, let's move down there. So that's why they move. Cause they were, they had been living in Sacramento for about 20 years. That was like, a big chunk of her life, she's very comfortable in LA cause she was raised out here, but then a big chunk of her life was also in the Sacramento. I think when she came back down here, they didn't move to the same area. They moved to a different area. It's, this area is not hardwired into her brain. Like the old, like she used to live, they used to live in, like Carson area, like more cells. Now we live in, they've spent the central valley or that, San Fernando valley. So, so yeah.

00:33:54
Roy
Yeah, because I've one thing I've always heard. It's not just dementia patients, but it's just mainly anybody as they get older, it's the change is very difficult, but for people with the dementia diagnosis, sometimes it's just, more than that they can handle makes them very agitated. It sounds like y'all probably moved back, way before things reached that point. Oh, I'm sorry. Go ahead. Go ahead. Well, I was going to ask, was she diagnosed while y'all, while they were in Sacramento or was she diagnosed when they came back to LA and what was her understanding of what her diagnosis was?

00:34:38
Ciana
No, that's a good question. Before they moved back to down here to Los Angeles, we believe that she actually had dementia starting then, but we didn't know it. So, when they moved back down here, I think it just her confusion enhanced because now she's out of, Sacramento and she's down in Los Angeles and she doesn't remember the streets. She doesn't know, where the, her normal Cornerstore is and her Walgreens and her grocery store and, just like little things that she liked to do around the city. That's when it really started to be amplified that something was just off. She started complaining about sensation in her head and then she wasn't able to finish sentences really anymore. She would just be in like the middle of a conversation and just like completely forget what she was talking about. That's when she went and did the testing and then found out that she had dementia, but I believe that, me and my mom believed that she had it a lot earlier.

00:35:37
Ciana
It was out here to answer your question. It was out here when she actually got diagnosed.

00:35:41
Roy
Did she understand that? Could she fully understand what was going on, do you think?

00:35:47
Ciana
She knew she was struggling and she started to, she has books on books and I'll probably start to post them on my social media, but she has like about this thick of books of notepads of her literally writing every single instruction out for her life. It was, she would draw a, like a remote controller and she would draw the buttons and she would say, you're supposed to push this button to turn the TV on. You're supposed to turn, push this button to change the channel. You do this button to do the volume. She started doing it. She started to draw her toothbrush. You use this to brush your teeth. She started to draw, everything. I know, well, see, my grandmother was an artist, outside of her working her whole life. She was really, I think her calling was really to be artists or her art is gorgeous.

00:36:42
Ciana
She was just, yeah, so she started drawing her entire life out into these books. She, and she would label them, she would say, this is for, bathroom care. This is for, and so that's what I started to notice too. I was like, oh, that's I used to think it was cool. I was like, oh, how cool is this? Like my grandmother, no, she's diagnosed with dementia, but she's like getting in front of it. She's not letting it defeat her, but she didn't know. I didn't know. My mom didn't know that this was just going to significantly decline. Even for doing, we riding where her toothbrush was and what a toothbrush looked like, and even with a dress, you had all these dresses and chews and all these things. I wish I would have actually brought it to show you guys, but, she, then she forgot to even know how to look at the book to even do all that stuff.

00:37:30
Ciana
So, I mean, it was her way of, to answer your question, it was her way of holding on. She knew something was off. She wasn't able to communicate exactly what she was going through. We had, we had done the research and so were just kind of, going through each day and taking it as it came. I really wished that we had did the research and knew what was going on at the beginning of stages. We could have even prolonged it from getting worse because now there's studies that are coming out, that you could even, almost even prevented. You want to hear that from a primary care doctor, but there is several, case studies and books out there that show that you could even prevent it from coming on. We're doing those things now for my mom and my aunt and my uncle, so that way, they don't have to deal with that, in their later golden years.

00:38:16
Roy
And through,

00:38:17
Terry
Diet and all of that. Yeah.

00:38:21
Ciana
Yep. Tumeric MCT oil when you would just keep cognitively, stimulated. Really, I think the biggest thing is just always having something to live for, like something value. I think a lot of times when people, when they retire and other kids are grown and they live far and say, even if they live far away, it's like, well, what am I, what am, what's the point of me even being here, anymore, my grandmother was someone that was on the go all the time and then it just stopped. She didn't have to take care of her grandkids anymore. And then my mom was always working. She was just in the room kind of withering away. I wish we would have been aware of that, then, and we would have maybe included her or, maybe took her on more walks or maybe, got her to get back into her art, all that.

00:39:09
Ciana
So, so that's why I started sharing on social media. I was like, I want to prevent this from, at least one person out there, for them to check in during the early stages.

00:39:19
Roy
Yeah. And it's hard to your mom works. It may not have been as much of an issue, but the masking of the person's, situation or their stage, because, we see that a lot with people that we're close to is that, the one per the well person overcompensates for the sicker person and they don't really, like when there's people gatherings and things like that, it's hard to see how bad things really are because all through the day, somebody else has been doing all these chores for them. So that's an important part. If you're a loved one, if you think of somebody that may be, drop in unexpectedly at times. I think you mentioned this in the beginning, but, look at the mail. Are they able to go through the male? We've got an upcoming episode, unfortunately, that, it was, a lady whose family lived across the country.

00:40:17
Roy
She had a caregiver, her dementia got bad. The, I guess the next door neighbor and the caregiver conspired to take this lady's, bank account, and, it became a whole thing. It's important to really stay in touch. And, there's an old saying in the senior living world trust, but verify. They might tell you that you're, that they're okay. Life is good, but you always need to verify that. There, if what to look for, there are always signs. Like you said, handling the mail, but you need to get in, like we talk about being on somebody's bank account as a preventative, if they live alone or in a different place, there's all kinds of steps that you can take. You just have to make the realization. As kids, a lot of times, we don't want to make that realization. We're finding that we don't want to see it and then they're fighting it.

00:41:15
Roy
Like it ain't happening to me, but yet, so everybody being in denial can make for a really bad situation.

00:41:22
Ciana
Yes, no. That's a, that's an excellent point. It, we actually ran into some issues, with getting my mother onto my grandmother's bank, because what happened was she wasn't able to look at her bank account statement and really understand what was going on and he'd had a login anymore. My mom was like, okay, I'm going to take over your bank account. They went to the bank and said, Hey, my mother, she has dementia. We're going to go ahead. I'm going to be, on her accounts now. That particular day was an off day. My grandmother was like, what are you talking about? So that it looked like my mom was trying to be like shady again, that's another thing. Like we have to catch those things, even earlier than that, to where, when they're basically able to kind of still do a lot, but they just have the diagnosis.

00:42:19
Ciana
Those are the stages. When, when they understand, like, Hey, I'm going to go ahead and, help you with your finances. I'm going to help you with your mail. I'm going to help you with your organization. I'm going help you with this. They kind of know that they need help at the early stages. Like, I feel like my grandmother was more open. Like she liked it. She's like, Ooh, like my granddaughter and my daughter are helping me out. It got to a stage where she didn't really know who were. And so we then became enemies. We then became like someone that she was like weary of. It's like, why do you want to get my big account? Who are you anyway? And if we would've caught that alert earlier, we wouldn't have had to deal with that. Now we're on like, her medical, on my name is on there.

00:42:59
Ciana
I'm able to speak on her behalf. Power of attorney is so important to get on is early as you can, because you have to do interviews for that stuff. If they're, in the interview and the interviewer is looking at them and seeming like, they're okay, and they're like, I don't want you to be my power of attorney. What are you talking about? It just looks, it just gets bad. So, they actually do my grandmother as someone that wasn't fit to answer the question. Luckily that were able to overcome that, but, we've had moments with her medicals, during, medical moments and, doctors, authorizations and stuff like that, where my grandmother was like, I don't want to do that. It's like, well, we just talked about it one hour ago. So, all that stuff, needs to be organized and ready to go, at the beginning stages. To your point, just the acceptance of it is I think the biggest hurdle to get over, and then just, again, the more organized you get the earlier you accepted the easier the process of these things will go, and then you'll have more energy to be patient when times get difficult or moments get really hard.

00:44:02
Ciana
So,

00:44:03
Roy
Yeah, and it's hard. Because even though that they have this dementia, when they're in front of somebody else, they can be very convincing that they are in control of their facts, their faculties, and that they are telling the truth. That's another reason to get out in front of it and don't wait because it, cause that makes it even harder. Now, other people are looking at you sideways, like what are y'all trying to do to this poor woman? Absolutely. It reminds me of the funniest story that I have thought about this in a long time, but a friend of mine was traveling with her little niece or nephew and they're on an airplane. Of course this is after nine 11, but they're on an airplane. As they're coming into the airport, the stewardess is like, Telmo the little girl. I mean, she was probably like six or eight at the time you need to buckle up.

00:44:54
Roy
The girls, the aunt was telling her to do this and she got mad and she started screaming. Who are you? Who are you? I was like, oh my, and then the whole plane starts looking at her. Like, why have you kidnapped this person or what's going on? It's hilarious in that situation. When it's your loved one that, like I said, they can be very convincing and then it just makes that hurdle even higher that you have to get over to prove that she is not okay. That really somebody does need to be helping with this. Yes, absolutely. Absolutely. And it's possible. I was going to ask you, can you tell me about your grandmother and what kind of work did she do and what kind of person would she.

00:45:41
Ciana
Yeah, no. She so very funny woman, but loves to crack jokes, loves it, back in her day, when she used to have her cigarettes in her bud light, she would just, go to work. She worked at 3m for many years. After she worked at 3m for about 20 years, she then started working at this other company where she would work on motherboard. She always just had very simple woman. She had a nine to five. She liked, she liked her nine to five. She would get off, she would get her beer, she would get her cigarette. That's just kinda how I remember her. She would watch us when were there after school and, while my mom was working. Very loving, very, funny, a little feisty. She, you couldn't put too much pull too much past her and me and my brother would try to do stuff and he would try to get away with stuff.

00:46:38
Ciana
She wasn't having it. But, just a very, just a lively full of life. Everyone loved her, everyone that met my grandmother, all of all my friends and coworkers and people that I met her throughout my life just love her. Ask me he still to this day, how was your grandma doing? You have people from high school. So, definitely made an impact. And, she, I guess she would also do art. So she is an amazing artist. I'm going to start to post some of her stuff, but she's an artist. She went to school for it. She was a, she was born in the south and then moved to Southern California when she was a baby. And, pretty much raised her, have her whole life out here and raised her three children, which is my mom, my aunt and my uncle I'm out here in Los Angeles.

00:47:26
Ciana
And, she, my grandfather super cool guy, he's passed away from cancer about 15 years ago, but he was a, a, he was a singer. He was always on the road all the time. She just, she was kind of a single mom in a way, because he was always on the road. She, you know, just had her job. She had her kids, she had her cigarette or her bud light and that's who she was. That's who she was. Oh, that's sounds so sweet.

00:47:56
Roy
Well, thanks so much. Do you have anything? Do you have something else to say,

00:48:00
Terry
Well, what else was I gonna ask? Oh, what's your favorite memory as a child of your grandmother?

00:48:07
Ciana
Ooh, that's easy. Yeah. Well, there's so many, but the one that always sticks out in my head the most is, she would always sing the song. I love you a bushel and a Peck, a bushel, and a Peck and a hug. So that was just our thing. Me, my niece, her, my little brother, when she'd be watching us while my mom was at work to like help us, stay calm from like, where's mommy, we miss mommy. She would sing to us. And so that was our thing. She would sing to us and, she would sit us up on the bed with her and we would watch star Trek with her. Just this whole, just as simple, the simplicity of it just like being in the bed, jumping up and down and singing with her and watching star wars or I'm sorry, star Trek and star wars, actually.

00:48:50
Ciana
She was really into Saifai. Yeah, that's, I would say that's like the top favorite memories.

00:48:57
Roy
That's cool. One thing else. I was going to say, you mentioned respite care, and I think this is a point that a lot of people need to understand that it is available to them. Depending on where you live and some agencies, sometimes it can even be at no to very low costs, but don't let yourself get to the end of your rope. Take advantage of this respite care. If there's, sometimes they will come into your house to give you a few hours off, sometimes making them out to an adult daycare and let them stay there. The adult daycares aren't necessarily, just a place to warehouse somebody like they used to be a lot of them today have art programs. They have, field trips and yeah, other games besides bingo, very engaging things to do. So I would just challenge everybody. It's, we need to know as caregivers, we need to know when to quit because a lot of times we get into the cycle of, well, I said I was going to take care of her and I need to be here.

00:50:00
Roy
You did. For her to get the very best care, sometimes we have to get a break ourselves that self-care as a caregiver. Anyway, I would just ask everybody to seek it out, to find a location that's close, that you could take advantage of because you can attest I'm sure, but a couple hours away can make a world of difference.

00:50:21
Ciana
Absolutely. I do want to say, just to that, to add to that point, if you are in the San Fernando valley in Southern California, it's called first generation, a lot of insurances cover it. And it's a adult daycare. I sat in, even to, for her to get approved. I had to even sit in on a whole day with her they seem to them. They have them read old newspaper articles. They do tons of art projects. They, they have them, they do like little art projects, and, oh, have them do gardening, all these kinds of things. It's called first generation in the San Fernando valley area. Definitely check it out. I would highly recommend them. They're great.

00:51:01
Roy
Okay. Great. Well, Ciana, we want to say, thanks again. It's been a pleasure having you on the show. I just wanted to point out that Tiana says aunt and we say, yeah, I should. That's a Texas thing. Unfortunately, we got hands. No, no, thank you so much for your postings too. I mean, we really enjoy it. We, I feel like we've become to know you and your grandmother through your posting. Please keep that up because I think as you have attested to and what you went through, it's like, we always, we never know what we don't know. Now that you've come through this, it's like ha all of this in the very beginning, things would have been a lot different. I think your message really gets out there and can help others at the very least find resources that they can turn to help them in whatever situation they're in.

00:52:05
Roy
So that's awesome. I mean, showing everybody your journey.

00:52:13
Ciana
Is yeah, absolutely. Well, I'm going to, this is very encouraging for me. Thank you so much for reaching out and, messages like this from individuals. Like you really keep me going actually. Cause I'm not, it's not easy, to post and I'm in the middle of being with her and, no one knows what we would have. We just went through before I turned the camera on, ? So, encouraging words like this go a long way.

00:52:42
Roy
Yeah. Keep it up. It's a great mission. I feel like, in today's environment, the nice thing is you're not just helping your next door neighbor. I mean, you're actually helping people all across the world, view the U S for certain, but then across the world that, somebody else has gone through this and they've survived. Here are some things that we can do to help ourselves. So it's awesome. Yeah. Keep up the good work. Maybe if Terry gets out to see your daughter, she can come look Chuckie up. Yeah,

00:53:09
Ciana
Absolutely. Go to lunch. Absolutely. I'd be open to that. Yeah.

00:53:13
Roy
All right. Well, that's going to do it for another episode of educational. You can, of course find us at www.ageucational.com. Well, before I do that, do you want to tell us what the, I don't have the address, but you to tell us your Instagram address for everybody,

00:53:27
Ciana
You can check me in the grandma Chuckie out at, With Love Chuckie, that's at, With Love Chuckie talk as well, same exact address.

00:53:42
Roy
Now I'm going to impress you and say that I'm on Tik TOK. We'll have to go check you out over there too. Yes. All right. Well, that's gonna do it. You can find us of course, at www.ageucational.com. We're on all the major podcast platforms, as well as all the social media platforms. A copy of this, interview, video of this interview will go up on our YouTube channel when we post it as well. Until next time, take care of yourself and take care of your loved ones. Thank you. Thanks.

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