Their Story Their Voice

The Human Face of Dementia

May 31, 2023 AO / Kemi Adekoya Season 1 Episode 28
Their Story Their Voice
The Human Face of Dementia
Show Notes Transcript

Today's episode untangles the complexities of caring for a loved one with Alzheimer's disease or related dementias. Drawing on her experience of caring for her mother, who was diagnosed with dementia, today's guest highlights how looking after those with the illness can be demanding and stressful for any family. 

As every caregiver has a story to tell, we share candid conversations that cover topics including the realities of living with dementia, the difficulties of choosing residential care, and how we change as a result. We also spread awareness of challenging dementia behaviours, the initial signs of the disease, and ways to make symptoms easier to handle.  




Please note transcription accuracy may vary.

Music by - Neffex - don't want to let myself down
Neffex - A year go

Please visit these links if you or someone you know requires support.

https://www.alzheimers.org.uk/blog/new-developments-dementia-research-2019
https://stanfordhealthcare.org/medical-conditions/brain-and-nerves/dementia/causes.html
https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/how-dementia-progresses/later-stages-dementia
https://www.dementiafriends.org.uk
https://www.nhs.uk/conditions/dementia/

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Welcome to another episode of ChatAholic. Dementia is not a specific disease, but rather a general term for impaired ability to remember, to think, make decisions that interferes with doing. Simple, everyday activities, making your breakfast, for example, Alzheimer's disease is the most common type of dementia, but there are others. It's just Alzheimer's is the one that most people have heard of, though dementia mostly affects older people. It's not part of normal aging. I just need to make that very clear. it's not a case of you get old and it's a given that the chances are you are going to have dementia because that's not how it works. although it affects mostly older adults, dementia can occur in younger adults Dementia It's a disease of the brain, and it's not just about losing your memory. There's a lot more to it. I'm going to put all of that in the show notes. However, what I'm also going to just make sure that people are aware of it is possible to live with dementia. Everyone has a story, and imagine losing those parts of yourself that have shaped your life and made you who you are This episode, I'm joined by Kemi. I've been wanting to speak to Kemi for such a long time because I'm interested in any illness that affects the brain Hi Kemi. Thank you so much for agreeing to do this. Would you start with telling me a bit about you and why it was important for you to tell your story?

Kemi:

So my name is Kemi Adekoya it really sounds strange to say Kemi Adekoya because, I would say maybe fairly nearly divorced. So I'm just going back to my maiden name after I've used the, a married name for 25 years. So it sounds strange to hear me say that, but it also sounds great. I feel like I've come back to myself, but obviously this is not what we're talking about, but this is just what I'm talking about myself. So I'm Kemi, from what I said earlier, I'm divorced. I'm an actress and I'm also a writer, and I also work in housing. As a side hustle. It used to be my main hustle, but I'm very happy that it's not my side hustle. and I have two children They're in their twenties, and I live in London, in Catford. I've lived in London all my life since I've been in this country. Just been for some decades. And yes, I am very adventurous, I'm always out doing things, dancing, singing, acting. Yeah, that's good.

Ad:

Okay. when I asked you Yeah, why did you agree to come on and talk about your journey?

Kemi:

because I'm 52 now and I feel I've had quite a varied experience in life. And, one of the things I've concluded is, Some of the purpose of the things that we go through, it's not even that deep. It could be as simple as, To share with others, period. it's part of why I went into creativity. I really believe that stories, telling stories, hearing stories in whatever format, I feel it's one of the most important things that make us human. especially if you feel like people might benefit from your story, and that's what I feel myself and my siblings, there's five of us. we very sadly went through, what, can only describe it as an extremely traumatic experience of our daily beloved having been diagnosed with Alzheimer's, it was such a difficult. Rollercoaster up and down period that went on for, what would that 2013 to 2022. I definitely want to share because anyone else that goes, sadly, Alzheimer's is becoming more and more common. No one still knows why. I have some ideas as to why, which you can talk about in the program, but it would just be guesstimation or not any scientific, research or results, but just my own experience of what I think is causing this from having to care from someone that has it. So I'm very passionate and keen to share my experience, like I said, because if it helps another family be a bit more aware of what they need to do, be a bit more aware of what's coming, if it reduces their pain by 1%, then I'm very happy to have done this. Thank you

Ad:

Kemi, and thank you for just the perfect response. Do what you mind starting at the beginning when you knew that there was something different about your mom. Yeah. And if it's okay, because you are going to say when you noticed there was something different about her. Do you mind sharing about her? Who was she?

Kemi:

Yeah. Yeah. That's my hobby. I love talking about my mom because I think she was so unique. I think that's part why all my siblings, we are also different. Their spouses always says that as well, but I would like to think it's a positive difference, but we are just, For want of a better word, I'll say. We are all eccentric in our own ways. And I think we got that from both our parents actually. They were very much themselves and that encouraged us to be ourselves. So my mom, changed over the years, as we should do so. I was close with my parents, actually very close. I was a daddy's girl before daddy died. And then I was a mommy's girl as well. And certainly until she died, I was extremely close to my mom. Like we were almost like spiritually connected. If something was happening to her, was that happening to me too? So we're definitely very close. so about her, her name is, Let me call her what she likes, even though her first name is Ash, but she became born again and she preferred the than the ash. Sorry,

Ad:

Kemi, just quickly to interrupt, can you just explain what is Born again?

Kemi:

Yeah. Okay. I have so many different views about this, but yeah, I'll try and just stay focused and not go off on a tangent or all around, which is very likely. But anyway, so being born again is, I think it's an American phenomena, whatever that word is. it's definitely an Americanized word, I think. I think it goes hand in hand with Pentecostalism version of Christianity, where you follow, you know, like how some people might say they're Anglican or they're Protestant or whatever. Some people will say they're Pentecostal, and most people who are Pentecostal Christians would. There's this experience whereby, you know, you formally give your life to Christ. You formally dedicate your life to Christ, which is almost like taking a vow. You be like, Jesus Christ coming to my life today. I dedicate my life to you. It's almost like publicly getting married to Jesus, something like that, So you publicly declare your allegiance and your commitment to Jesus Christ and you to you promise to live by his ways. So that's in summary is what born again means. Dedicate your life to Christ in a new way. You change your behavior. there, different variations of it. So every other religion is not going to get you to God. So that's why my mom, even though she was raised as a Muslim, she really didn't want to say her Muslim names anymore. She wanted you know her name. That wasn't, yeah, she went with That's why that was really mean. Talking about my mom. Yeah. So she was born in Nigeria, in Shagan, to a Muslim beautiful man, It was all I remember of him is love. He just had a really big heart, And I just loved him very much. And I think he loved my mom also very much. my mom's school in Nigeria, but she came to London specifically at a very young age. I think she was about 16 or thereabout. and it was in London that she met my dad as well. My dad was much older than her, but you wouldn't tell they were very much in love. They've worked as a team. I didn't think there was control. Well, nothing out Nigerian culture. I felt like their marriage was quite good and positive. They definitely loved each other and they showed it, and they risked us in love as well. So yeah, we grew up what I call middle class Nigeria. My mom came to the UK study nursing she was a midwife and she worked at a midwife teacher, retired. She was very active in her church. she went to Bible school and was ordained as a deacon at K I C C and that was a big part of her socializing., my dad studied accounting. and that's when I was born here. And I went back to Nigeria 73 into good jobs onto the nineties when things got really difficult in Nigeria. And we kind of all started making our way back to the uk. So I came back to the UK in 94. My mom came back 96, my dad came back 97. and they both passed away here. When she wasn't at work, she was in church and she loved her children and her grandchildren. and I'm not saying this out of disrespect, but she was never, and which was unusual for her time. She was never one that made her life purpose looking after her grandchildren. She would look after her grandchildren, spend time with her grandchildren. But she made it clear that she had her own life as well. She certainly wasn't the kind of mother that would come and live with us. after like two days with us, she'd be like, I'm going to a house, please. So I suppose from that sense, you could say she was fiercely independent and But I think after some years they were like, mom, we actually wish she would stay with us for a month maybe. And all her children got married and had kids before she passed away. I don't think she ever spent a month with any of them. She just wouldn't. I think she loved her own space as well.

Ad:

Can I just say to people listening, the reason Kemi says this is because in the Nigerian culture, it is very common for the mother-in-law, for the grandmother to move in for a period of time to help her after the children. It's very, very common

Kemi:

Yeah, definitely. And I think one of the things I would have to say about my mom as well, and I said this because my sister-in-laws, three of them, they all testified to the fact that my mom was the best mother-in-law they could ever have wished for. My mom had the principle, I don't interfere in my children's marriage again, that's almost counterculture, you know? So she just did not give any of her daughter-in-laws any problems at all. He was very respectful of their homes and she just didn't interfere again. Sometimes she did extreme. Cause sometimes when you even go and report your husband to your my mom would be like, please, so you saw him before you married him? Leave me out of it. good

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on her because actually I don't understand why anyone else should feel the need to get involved in a marriage. And I don't really understand men who go crying to their mom. Don't go crying to your mom. Stop you are an adult.

Kemi:

Yeah. Like I said, initially it was actually, you know, wait is counterculture and it's so shocking. It's almost annoyed. but you know, a lot of people have negative experiences with their mother-in-laws, sadly. my sister-in-laws, the three of them, they were always, you know, Shouting out to their friends that my mother-in-law is different. She doesn't give me any problems, she didn't make any woman's life difficult. I really thank her for that. I really do.

Ad:

Do you know what? That's actually really lovely because it's not, I'm not saying it's everyone, and it's true. I don't think it is just Nigerian culture, but especially in Nigerian African culture. Yeah. It's not the norm for mother-in-laws to not want to be involved.

Kemi:

that's the main thing to say about my mom and, we were very close again, and a lot of people think maybe because they were in the UK in the sixties and seventies. I don't think so. I think that's just my parents. I feel like they think differently. They're ahead of their time in terms of how liberal they were, you know? They just really allowed us to be ourselves. I remember talking to mom about sex when I was 15, 16, and I think that's unheard of again, in our culture. I would tell her that, oh, I feel like I'm thinking of having a boyfriend, and she'd be like, okay, yeah, that's normal. If you weren't thinking of that at 16, you wouldn't be developing. Normally. That's a normal development, but take your time. don't. be friends with anyone, do you think you can't marry? she gave me really sound advice. I mean, this, my same mom, they'll be like, don't love your man too much cause they, they will mess you up. honestly they were really beautiful parents, So I was very close to her and my sister is 12 years younger than me. And even she would say that all she remembers when she's growing up is myself, a mom sitting down at the dining table or lying down next to each other in her bed and just chatting, chatting, chatting. And she was like, like when I was 16, if it's 12 years difference when I was 16, she would be like, please, I don't know, maths. Was four

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that made me laugh. Yes. Kemi, she was four.

Kemi:

She would be like, me being 16 chatting with mom for hours. And she say she used, she been four. She used to just sit there thinking, what are they talking about? Oh, she actually used to be jealous of how close Mama and I were, at one point all of us left Nigerian. It was just my sister that was in Nigeria. And at that time, and mum, her mom got really close. My mom had the way she had five children and she had the way of making each of us think we were her favorite. I dunno how she did that. We still cannot resolve that debate till now. So I think that was a beautiful thing that she did.

Ad:

When did you start to notice that there was something different? she wasn't herself. Herself that you knew.

Kemi:

So I was definitely the first to start noticing. her changing. and then I started noticing that she was telling me a particular story repeatedly. she got hung up on a particular story. My dad's mom died very early and none of us knew her. his older sister became like her mom. and my mother got on with her sister-in-law, which is my dad's older sister, and my mom got on with all of my dad's siblings. But after a while, they didn't get on. They fell out, basically. They fell out and it was fairly big. So my mom would tell, and I'd left Nigeria by then. So my mom would tell me the story. Let's say for example, this is not how it went down, but just put in context, let's say there was one time that my dad's sister came to visit and herself and my mom had an argument and my dad told her to leave because he was upsetting his wife. My dad was like that. He was side with his wife over his family, which was another unusual thing in our culture, So my mom would tell me that story. Ah, do you remember, lemme tell you, did I tell you about the day that Masa, let's just say that's my dad's sister's name. Did I tell you that story and that particular story? She would tell me that every time we met. And initially I would joke, I'd be like, mommy, you told me that when you saw me yesterday. You know, we would joke and then I would go home and then I would see her the next day and she'll, in that exact form, I'm telling you, no change, no missing comma or full stop and I'm emphasizing this because anyone that might suspect for me, that was the number one sign they would get obsessed with something in particular. it could be like something that annoys them. Why did dog who on the road? But then they would repeat that a lot because that has entered their brain. It's entirely Alzheimer's, part of their brain, the beginning part. Anyway, so this year story, she was obsessed because I think this was something that really affected her, that's when I thought, oh my God, she doesn't remember that she told me this yesterday. And then I would say that maybe that was 2013. So in addition to, her telling me this particular story, Which I thought nothing of it. I feel like she was beginning to lose the key to her house quite fairly regularly and she knew she was losing the key to her house as well. there were three of her children in the UK at the time. So she made three copies of the key to her house and give it to each of us. Her children saying, I dunno, what's wrong you, I just use the key to my house all the time, so all of you keep a copy so when I leave it, I'll come to your house and get the one that I have with you. So that I noticed that. But again, I thought nothing of just her mom's getting older, she's getting careless. But the pivotal point when I knew that something wrong when you saw me come to the office to say, there's something wrong with my mom. It was 2014. I can never ever forget 2014. We all went to Nigeria because our last born my baby sister was getting married. So we were all in Nigeria. and I was staying with mom. I was staying in mom's house in Lagos. I was sleeping in her room. So we were together a lot of time doing that. All the other siblings were doing different things, but I was with mom, that was when I knew something was wrong. Definitely. Firstly, she remembered a lot about her early years. She started to tell me a lot of things about her early years. Think she hadn't told me before. Some of them quite traumatic. So we bonded a lot during that period in Nigeria I remember we were sleeping and She woke up in the middle of the night and she was hysterical. She woke me up as well. She's like, yay, Kemi. I have left my dress. The dress that I'm going to wear for Lara's wedding, I have left it in London, eh, me, the mother of the bride, my outfit. I left it yay. And she started banging her head. I was like, what? Ok, ok. Are you sure? She's like, yes. we turned the room upside down because she was saying she didn't get in her suitcase. I don't know what, I just opened one of her wardrobes. This is after hours, and I saw something that was very shiny, you know, and I was like, mom, is it this? She's like, ah, yes, that is it, was it in my wardrobe? Eh, I thought I didn't even bring it. Cause she bought it in the UK before. I remember then thinking, what, this is not normal behavior. because you know what a big deal wedding is straight from mother of the bride. will not forget her outfit in London, number one. And then number two, not only did she not forget, she had unpacked it and put it in her wardrobe. So she didn't remember all of that. I was like, this is not normal behavior. I remember I started getting worried and then that was it. And then again during that trip, that house where we live in is, like I said, is my mom's house. My brother, built it for for her, my brother is an architect, so it's a family home basically. And my mom has been there for many years. That's our home when she's in Nigeria. So she went out to buy something. And then she came back and she said to me, Kemi, you're not gonna believe what happened. On my way back from the gate, we call it the gate because it's like 10 minutes walk to get to the gate. And when you get to the gate, there's a local market there I got lost. I got lost. that's when I started crying and I had seen my tears cause. I knew straight away for mom to get lost from the gate in our place in Lagos to half to our house. so because I didn't knew something was wrong with her throughout that wedding. I just became a chaperon for mom I just knew that something has changed about my mom. So I stopped by her side the whole time. I think if mom that got lost from Gates to her house, oh. I didn't say anything to any of my siblings at the time because yeah, we were all there in Nigeria for Laura's wedding.

Ad:

At what stage did you realize, do you know what She needs to go to the gp. We need to start actually seeking medical advice. Yes.

Kemi:

I think maybe that's when I spoke to you and I started speaking to mom about it as well, to be like, mommy, do you know, you're beginning to forget things. And the first thing I noticed was denial. not just normal denial, A fervent, fervent denial. You know? Like, no, no, no, no, no, no. when I would give her instances, mom, you got lost. I just entered another house by mistaken. You know, she would play down. she started, been dismissive. She started, being, guarded, almost secretive, and then difficult that all of this started very quickly because I then said to her, mom, let's go and see your doctor. my mom at best of times, didn't like going to her gp. Cause I remember I would get home and I would see letters asking her to come for May test, and my mom would be like, oh, this nonsense. a breast screening. She won't go. So she was someone that wasn't into the medical profession at all. She would rather pray and fast, she was blessed with good health anyway, because, all this while this. Wow. She was in her sixties and she did not have one single, health condition. I do have to say, before, 2014, I noticed something was wrong with her, but before then, 2013, she had arthritis in her knee and that was really painful. And I think they put her on statin. I'm just gonna put that out there. So people should make of that, what they want.

Ad:

Statin. S T A T I N, because I did not know what this was, Apparently It's a cholesterol lowering drug. That's what I found from the British Heart Foundation website. But essentially, Kemi is not a medical expert. Neither am I. but I'm just gonna say what I feel like everyone should always think is whatever you are prescribed by your doctor, by your gp, always do your own independent research.

Kemi:

but I remember vividly calling her GP behind her back, which, you know, in this country is a big deal. But that's how worried I was.

Ad:

I don't know if you know the answer to this I know you said she was getting defensive and being dismissive? Yeah. do you think she knew?

Kemi:

Oh hundred percent. 100%. 100%. She knew she was scared because remember, even before this whole time, she was someone that was firstly independent. So just knowing that she's forgetting things. because she's a nurse, she knows what any kind of dementia means. So she was just denied. She was like, Hey, I reject this in Jesus and this is not my portion. So, yeah, she knew straight away what this might mean. And she was, she fought it. Who? Who? She fought it. She fought it so hard.

Ad:

I remember that there was a stage when your mom said she just wanted to be, At church. She just wanted to go to church because you know, it's fine because she's got her church people and they're going to pray and fast. Yeah. And then everything will just be okay. Yeah. And I find this is somewhat common amongst religious people.

Kemi:

I agree a hundred percent. I agree. Because I feel like, personally, I think, and yeah, fasting is good and praying is good and stuff like that. And there was another thing my mom used to do. She would listen to either, some of the, recordings, you know, we had that as tape or CD from her pastor cuz you know, all these pastors started recording the messages, selling it back to the church members, not in for a cheap prize. You know, like my mom will buy 12 CDs from K I C C because they've done, gathering of champions and she would probably buy this 12 CD for like 60 pounds, and she would listen to them, on repeat overnight. And I remember used to saying to her that, mom, if you, if there's something playing in the background while you're sleeping, then your brain is not fully resting. So please listen, by all means, but stop when you're about to fall asleep. So, yeah, I'm not gonna lie, I had a lot of resentment towards the church with regards to my mom's condition. But that's my own issue It's my own personal journey and I'm walking through that. But yeah, I would say to people, if you have parents who might you think might have this condition and if they go to church, you'd be very much involved. Because, I'll tell you this now, when my mom's Alzheimer's got worse, she ended up depositing a lot of her money in church. Not necessary because she wanted to be, but because she was forgetting. for example, she would go for service in the morning. Because all these churches, everyone who cares, is a really big church. I have so many services. Throughout Sunday, she would go for the nine o'clock one. She would give her offering, she'll give her fights. And this are hundreds of pounds. It could be three. I know this cause I'm the one that will sit next to her when she's putting this money in an envelope. She would go for maybe another service at one o'clock. I remember all these envelopes, they put their names in address. And by this time her pastor also knew my mom was, you know, suffering from memory issues. And she would go for the afternoon service and do the same thing. eventually we were able to take control of her account, the amount of money we saw going to her church was too much period, too much. It got us all really angry. And a lot of it, it was because she wouldn't remember that she paid her title to the first service.

Ad:

the pastor never, I'm not going, I'm going to not voice any personal opinion on what I think about this. So at no point in time no one said anything. And I say the pastor, I'm going to say him because in my world, is he not supposed to be a he or she supposed to be a man of God? Is that not how this works? Yep. Okay. that's me. Done. it. That's it.

Kemi:

She would pay again in the second service. And I felt the church had a duty of care to say to her, But no. Mm-hmm. Anyway. Yeah. So like I said, we only knew this when we got control of her account and looking through statement, looking through bank withdrawals. that was my mom and that's what mattered to her and her her illness, made her do more of those things, Cause that's the thing. They get obsessed. they get fixated on things very specifically that most of the time it's things that mean a lot to them. So church, meant a lot to mom. So when she got Alzheimer's, that was, that became even more important to her, because she was retired at this time. That's at some point, that was the only place she went.

Ad:

when you actually finally managed to speak to a medical professional Someone at medical actually confirming Yeah. Yes. This is what is going on.

Kemi:

mm-hmm. Mm-hmm.

Ad:

what did they say to you?

Kemi:

Yeah. So it was a long process actually. So I would say it took a year. definitely it took a year to get that formal prognosis. So I would say that definitely happened in 2015, I would say that. and it was even more difficult because my mom was not cooperative. So I remember just me and her going to her GP Woohoohoo. it was difficult. eventually I had to say to her and thinking at some point I had to lie. because I wanted her, us to go to her GP to talk about her forgetting things. And my mom was adamant that she doesn't forget things because she lost her key yesterday and she stopped making it a big deal. So eventually I had to say, mom, you need to come and see your GP because you know, like your just general medical or whatever, eventually we got there and then while she was talking to her, Hey, come and see, hmm, come and see Oscar for me in acting because my mom's gp, how are you? Shall I fine? So how's she been? Your daughter has some concerns. She thinks she'll forget to say, no, no, no, no, no. Not me, me. I don't forget anything. She said, you know, you haven't even been eating. And then she would laugh. She became a different character. She was so, she, she would turn on the charm. She'll like, don't her. My daughter, she worries so much about me. I ate just two hours ago two hours. I'm sitting there thinking, Who is this person talking and I'm looking at the gp like winking my eyes, shaking my head when my, somewhere my mom say thinking, no, it's not true. It's not true. Well obviously they were used to that, so they just kept, you know, they went along with her and they were like, oh, that's okay. I'm glad that you don't feel you're forgetting things, but you know, let's just refer you to this person or that person. I remember be like, ok, just so that they can check that there's nothing for I will go, but you can be rest. You're not gonna find anything and you'll now laugh. You had this mischievous laugh to make me cry because I'm like, why you pretending so much? that was it. the process to diagnose, they do the brain scan and all of that. She had mri, you know, they check all of that. And then they did the, it's like a written test. I remember cuz I was with her it's like a questionnaire where you're sitting with a neurologist. So they would ask her things like, where did you, what are you? She'd like, I'm a nurse. And there was an, and there was an irony. The place we went to for her to do this verbal, uh, this written, memory test. It was a memory hospital in Shutter Hill that was the same site that my mother trained to be a nurse in 1963. So she remembered that. She remembered she went and because she remembered past things. So when we got into that side, she'd be like, eh, this is where I did my nursing training. Ah. You know, so she was telling the neurologist that. So she remembered that. And then that one would be like, tell me more. So she remembered that she did the training. She didn't remember that she got married to my dad, cuz the neurologist will basically, to her, a long story short, she did really badly in this questionnaire. Like, you tell us what's your husband's name, she didn't remember, which was really shocking because my dad meant the world to her, and then they would say, I'm going to give you three sentences and then you need to send them back to me. But very simple sentences. My name is Shola, I'm a nurse. I'm here with my daughter. So, and then they would ask her questions, so, what's your favorite color? Purple. And then they would say, oh, what were those three sentences I told you just now? And she wouldn't even remember any of them. Even the one that was just, my name is Shola, you know, from that test me, I was already crying because I was like, my mom's gone. so eventually we did all of those assessments and then there was one particular day we had to come for the result. And I remember that neurology saying, you know, they were very tactile, from all the tests we've done. When we look at the gaps in your brain from the scan and when we look at, how you've answered some of these questions? Yeah. we do think that you have, cause dementia is the different types of dementia. So that's why the Alzheimer's is a branch of dementia. We think you've got the Alzheimer's version of dementia and I remember how looking really blank, I was more the one that was crying. Cause even the neurologist was now saying, do you understand what I'm saying to you? We left anyway, and I remember, they were giving us support group to join and stuff like that. Coffee mons to come to with people who are, and they were there, they were like, she's in stage one. They explained like it goes up to stage four. They explained that it was progressive. It's only gonna get worse from here. So when we left, I remember talking to mom, don't mind them Jerry, me. God forbid it's not my portion. Me, I don't time. So, you know.

Ad:

I remember saying, Kemi, do you know what? At some point you are going to that you are going to have to tell them because yeah, they need to know, and this isn't something that. I think you realize this as the years went on, it wasn't something that you were able to do on your own.

Kemi:

I said, but you're right. All of this, while I hadn't involved my family, because I was just like, I don't want anyone to go through what I'm going through. I don't want anyone to see all these things I'm seeing with mom. I don't understand this Alzheimer's thing because she was very comfortable to show me that she was forgetting things when she was with me. Her sons. visit her, she will put again, put on a performance. Cause I was, at this time, I was now talking to my siblings and they all told her I was mad. Cause he'd be like, this came here. I went to see mom yesterday. You said she didn't eat. Cause at one point even her personal care was dropping. You know, she would forget to bathe, she would forget to brush her teeth she's talking to me so I can smell that there hasn't been like the oral care was going. And I'd be like, mom, did you brush your teeth? And she would get really angry with me. Like, I'll be like, mom, did you brush your teeth this morning? And she'd be like, how dare you? I mean, she didn't, I'm like, what? I'm like, mom, just do it again. Let's go and do it together. for me. that was the most difficult part. Alzheimer's because sadly as she got further down into the Alzheimer's, she fought less. She had given into it. she wasn't the one giving us problems. So this was just us crying because we were losing her daily. But at that beginning, that stage of forgetting, I know you are forgetting to the point where you are forgetting and you don't even know you are forgetting anymore. That's the most difficult bit, that bit of forgetting, and knowing you are forgetting? Ooh, that was tough because she would get angry with me she would lie and she would hide things.

Ad:

I wanted to talk to you because I wanted to know about obviously your mom but I also wanted to know what this journey was like for you, because following this, If I'm correct, I recall that then you had a family meeting.

Kemi:

Yep, we did.

Ad:

Where did you get help from? Where did you get help from? Because you have the person with this disease, but then you also have the people around them.

Kemi:

Yeah, that's a good question because I wouldn't lie. but my mom and myself, we got very little help and it was difficult to complain because my mom didn't want the help anyway. when we got formal diagnosed, I got in touch with, social services, just to let them know that, look, my mom has been diagnosed with this and she's gonna need support. So what kind of support are you going to provide her, and they would just ask me questions like, Does she still live in her own house? Yes. Does she live by herself? Yes. Does she eat? I be like, sometimes and then she just was not seen as priority. I have to say that they really, and then they'll be like, does she have support network? Yes. She has three children and spouses, that, all live in London, not far from her. And you consider were just like, oh, this one had, this one is fine. She hasn't got problems. we have people with bigger problems. So we really were left, the first time we started getting support from social services was When my mom got lost again. fast forward so that she got formally diagnosed in 2015 and we were just managing her. All of us just got, and by this time the things, the physical evidence that she was losing her memory, like I said, The drop in personal care increased. she started developing depression. I really want your listeners to know that a lot of people at the beginning stage when they realize, when they're in that period, that's usually stage one slash two of Alzheimer's, because goes up to stage four. It depends on how, what category, and so she started getting depressed because. Now she knew she was changing and she just couldn't help it. she started getting both depressed, anxious, and hysterical. Cause sometimes she would call me, I have very vivid memories of this. She would call me and she's rolling on the floor. physically rolling on the floor, screaming, what's going on with me? I've lost my key again. What's wrong with me? She'll back. I'm so stupid. And she'll be stopping her forehead. I'm so stupid. I'm so stupid. My mom was a. Princess she was very, very big and positive of affirmation and the head and not the tale and the king daughter of the king, you know. So she was, she started saying things like, I'm stupid, I'm stupid. She started talking down on herself. That was hard for me to say for someone that never believed in, you know, those people that say, watch your tongue, don't say things about yourself. to start insulting herself. that was hard to watch. I take,

Ad:

can we take as long as you need?

Kemi:

Yeah. Yeah. Those were the worst. Those were the worst. Those were the worst. Seeing her realizing she's changing and the panic. Like she panicked. Ah. And she didn't want to accept it. I feel like it might have been different if she was like, oh, I'm changing. I'm losing my memory. Okay, let me start writing things down. Let's start, you know, what's gonna happen? let's map out how bad this can get. Let's put in some measures. I feel like maybe it would've been easier all round. It was made more difficult because she was in 100% denial, and she was mostly in denial because she was like, Jesus would not allow this to happen to me, so I'm not losing my memory. and it made it harder on herself when she should have accepted that, okay, I'm changing, I'm forgetting things. She wouldn't, she would still go out with her phone and go out with her key. And then when she got back home to her front door and she can't find her key and she's having to call me to bring her second key, then she would be disappointed in herself. What's wrong with me? Like he took it personally. She never accepted that she had developed a medical condition. Anytime she would lose things, she just thought, why am I being silly? You know? And then we would be like, mom, you're not being silly. your brain is changing. We need to put measures in place. those were the difficult stages, but we got to the next stage where she started slowly accepting help. Basically between 2014 when we noticed that my mom was changing, we managed her in her own flat, she managed to live on her own. So she allowed us to turn on the GPS on her phone. That helped us a lot to manage her. because she was using an iPhone so my brother would turn on the tracking or something like that. So we now knew that really helped us. I have to say, technology really helped us to manage her in her home. cause by now she had admitted that she gets lost. she didn't argue with us when we told her we had to tell her and she'd be like, She would say things like, okay, so what do you want me to do now? I'd be like, always have your phone charged. Always have a power bank because we, that's the only way we can track where you are, you know? And then, at home we we would buy her food. And put the date and the times, and then we would do a video call to be like, okay, you need to go to the fridge now you need to take the one that says Tuesday, 2:00 PM and you need to heat that up and you need to eat that now. She'd be like, ok, these children have become my boss. she developed a sense of humor after she's accepted. Like she was changing. She developed a sense of humor and sometimes, you know, sometimes we'll call her and be like, oh, you just go back from church. She'd be like, ah, how did you know? Oh, I forgot. You are monitoring, monitoring people. Hey, I can't even go anywhere with this. Nosy, nosy kids not knowing. So that was when she accepted, cuz before she wouldn't even allow that. that helped us a lot because my brother would be checking regularly and then he would just call me, oh, are you with mommy in South Sea? I'll be like, no, And before we know it, we're getting a phone call from the train line And then my brother's like, but she's, she starting and seeing, she's got no charge. She's gonna die soon. So in between the tracking, yep. The phone did die. But thankfully she must have Shown them a number of her daughters something because they called me. We have this delightful woman, you know, next to us. she came out of the station. She didn't, have an appropriate travel card, so obviously this continent, they're trying to be sensitive because they figured out she was vulnerable and her phone has died. But we were able to get your number before her phone died, she's sitting next to the driver in the driver's cabin, like, we're gonna drive in. I'm talking about a winter day in February. And my mom had gone out with, You can only describe as her nightwear. She said she was going to Stratford, she go on the wrong train to South and Sea. That happened a lot. she developed habit. She liked to go on bus one. She lives in Bedford. So one of the things she enjoyed when she wasn't in church was bus ride with her freedom pass. Oh. She used to, she, every day she prayed for the United Kingdom because of her freedom pass.

Ad:

For people who don't live in the United Kingdom. I'm going to tell you what a freedom pass is. A freedom pass basically means that you can get on public transport. So buses, trains, national rail. if you meet the criteria, so to meet the criteria, you need to be over a certain age. feel like the age is 60 plus And you can travel for free. I do know because we are going through. Just a time where people are struggling to feed themselves, especially elderly people, it was quite often on the media that to save from their heating bills a significant amount of elderly people were leaving their house in the morning. And just staying on public transport because It was warm. So yes.

Kemi:

so she would get on the bus and do the bus routes with the driver. Go to the last stop. Sometimes she would get off, go and eat somewhere. And then so we've gone to pick up in Hoban before, she'll call us, she'll be like, I've just finished eating at this restaurant and I can't find my purse, I think they're gonna arrest me. I think they're gonna take me to the police station, be like, okay, we're coming, we're coming. You know, all of these things could be literally us at work. And then having to just run out and to go and find my mom in some, Italian restaurant in Holborn in and we would get there, run to the, and be like, oh, we're sorry that she didn't pay. How much is it? They'd be like, she paid us four times paid us four. times

Ad:

We're laughing, but, which is good because you should be able to laugh. But it's actually, but it's not actually funny. Where did you all come up with these? Tools and mechanisms you put in place, such as tracking, tracking her Yeah.

Kemi:

Yeah. So tracking her. And then also we bought this alarm that you tagged to your house keys that you call it, and it rings, it was almost like a keying, you hook it to your house key. I think you could hook it to the phone as well. And then we called that particular, it was an app and you called that app and then have phone who had key wherever it will start beeping. There was one time we had seven iPhone chargers and socket in her house, So it was those little things. Phone became a big part of of the journey. By this time when we knew she had us, as you can imagine, us and Alzheimer's societies were best friends. And because she had five of us, different people were doing different. I have to say, I wasn't involved in research, in technology. I didn't have the time. I was the main one providing personal care. I was the one, I was like the soldier on the ground. So we don't count that. If I remove lockdown, I would say two years from 2018. and, 22 where she passed away. the most difficult part, 2014, 2018. So each of us took, different, Aspect, and I think most of us play to our strength or we play to our locality. I know that my sister who was away when it came to her meeting to go into a residential place, my sister did a lot of the research. I gave her like 10 or 14 places we were considering. And she was online reading the I p o s reports or, you know, c q c review and the review about each homes and stuff like that. And she was giving me that information. So that helped. we were bumbling along with all those, techniques in place. I want to say that one of the things that my mom was no longer able to do as she was losing her memory. And anyone who's going to resist are the things that could cause, this health and safety risk. She started to burn food. she's cooking and she forgets. So there was a near, you know, like fire smokes, fire risk. Yep. Yeah. In her kitchen. We literally had to disconnect her oven in the end because she didn't accept that she couldn't cook anymore. She liked Turkey putting it in the oven. That was her thing. And ah, man, I have pictures of Charco Turkey and she, and my mom always had a weak sense of smell anyway, so that sense of smell got worse. So she wouldn't even know, she wouldn't even smell the smoke. so that was when we knew, we had to say to her, mom, we are really sorry. You can no longer cook. she was very sad. when she lost those distinctive things when she, we store, she could no longer cook When she used to juice, she got that from me and she loved it. But eventually better forget. She would call me and be like, ah, my is not working, but she's forgotten how to actually operate it. Yeah. She had this tablet, that's where she used to listen to all her pastors preaching, and she forgot how to turn that on. those specific things led her to depression. When she realized she couldn't use her phone anymore. She couldn't use her laptop anymore. She couldn't juice anymore. She couldn't cook anymore. She would cry. She would cry.

Ad:

you mentioned. Residential care. Yeah. I just want to know, and for people, just in case they're wondering how does we can only speak for United Kingdom, I dunno about other countries. How does residential care work here? Is it free,

Kemi:

it's definitely not free. it depends on very specific circumstances. So we were managing my mom with her condition, like I said, from 2014. And then April, 2018 at 3:00 AM we got a phone call from the police. And I'm saying this people who want to look after their loved ones with Alzheimer's, they need to understand that one of the biggest challenges, they get lost. and again, there's something called sundowning. So when they've lose their memory, they start doing something that they did specifically. That was the big call of their life. for example, my mom was a nurse and most of the time she liked to work night. So she would get dressed at night and she thought she was going to work. and that's called sundowning. So people need to be aware of that. Some people, if it's a nine to five job, there's somewhere where they worked for 15 years, they will still remember how to get to that place. And don't be surprised if they show up at nine o'clock let's say how I was. People don't be surprised if they show up at people there at nine o'clock saying, I've resumed, I've come to work, forgetting that they have retired. You know, some people will go back to the house where they grew up, and be like, this is my house, I just really wanted to say that 18th of April, 2018, we were woke up by the police because my mom had been found on walking on the motorway on the A two. And she said she was going to Nigeria to see her dad who had died 20 years before. And that was the day that she could no longer leave on her own. That was when social services got in. That was when we got help, and that's when everything changed to the next stage of her life, of us, of having to find her residential home. And we tried to keep her with one of us, but because it was in the middle of the night that she was sun down in, when we were all asleep, she had to go somewhere that had 24 hour care. So, yeah, I just wanted to say that.

Ad:

Can I just mention, I remember when that happened. Yeah. And how distressed you are. That's the best word that I can use. Yeah, yeah, yeah. at some point when that happened, and then residential care, you'd come together and realize that is the best option. Yeah. Yeah. And I just want people to know, because from Kemi and speaking to her, I think it's quite normal for some people to question that decision. are you failing? Did you fail by putting her in a residential home? Because this is one of the things you came to me with. Yeah. And I said to you, no, you are not failing. And if people are judging you for that, they have never been in your shoes. Yeah. So in the end, this is, it's a horrible, horrible disease.

Kemi:

Yeah.

Ad:

You have to do what's best for them, but you also have to do what's best for you and the care that it takes to look after someone with dementia. Sometimes people can't do it. You can't do it because you have, in your case, you had a job.

Kemi:

Yeah. And I had kids. Yeah, yeah. No, you're right. And I'm not gonna lie to you. I think be, it's a big challenge within the black community. The guilt, the feeling that, you know, you've let your parents down and sometimes those parents, they don't help you either. Because I know a lot of black parents now that are like, don't take me to a home or whatever happens to me. Don't put me in a home. Maybe put me in a home. My spirit will be cussing you. And you know, we don't joke with things like that. We don't joke with things that we think, my parents might be not praying for me and not blessing me. we don't joke with things like that. and I've seen, families try to do it because of, what their mother has said, I've said, and I've seen them struggle. You know, I've seen them struggle and and I've also seen this and, people with, dementia being treated badly because the family's trying to look after them, but they're not doing a good job, and because of that, they loved ones are getting lost, a bit more regularly, they just feel like they're letting them down. If they tick them into residential home, I would say, the most important thing, is to do what's best for, the person. And not just, think about culture, because at the end of the day, nobody can know what you're going through except you and the family. So that's everything. One thing I have to say to people to be Don't let anyone put you under pressure. You are the ones that will know what you're going through. You are the ones that will know your situation and do what's best. if she has, if you have to put her in a residential place, just look for one. That where you can see are often. So it's good. So the one I found for my mom, it may not have been the best, but it was the one that was closest to me. So I was like, I'm going with this one and I'm gonna work with them I'm going to demand the care that she needs. And that's what I did. The one that I chose, they ended up having to make a lot of changes. They hadn't had, someone that was sunned down in before, they had people without timers in this place, but they didn't have someone that was trying to go to work in the middle of the night. So, just because of my mom and when she joined this new place, they had to have cctv, they had to have alarm on the doors because my mom left the place without anyone knowing two or three times. So I just want to say that look for what works for you. And I ended up finding, almost like a one person, you know, like a cozy residential place. The person that even owned this home because his dad had the same condition. So they knew what, they understood the condition they had. It was, it just resonated with me and my siblings and that's where mom was. And like I said, it was four minutes drive from my house. So it just made it, me to be able to see her more regularly. And in terms of the, of how the fee is, sadly, I'm just gonna say the way it works in the uk. The more you have personally, whether you have a house or whether you have savings in your account, then that will be used to pay for your care. And those were, this could be like 500 pounds a week or more, 1000 pounds a week. That is literally how it works. If you own the place, if you have savings, they will use all that money. And when all finishes, then the the state will start paying. But if you are renting and you don't have savings, then the local authority for where you are would start paying. The other thing though is they have a limit. So for example, drainage said they would pay, for example, 500 pounds a week. If I found somewhere that if the place that the family liked was 1000 pounds a week and we did find somewhere that was 1000 pounds a week, then the family or estate had money anywhere else. They would have to pay the difference. Right.

Ad:

Okay. They, they then

Kemi:

have to top it up. Yeah. So people need to be aware of that, that, yes, the The local authority. If you meet all the criteria, then yeah, the local authority will pay. But if you have any personal savings or anything like that, or they will use that first. If you own your place, they might sell it. Yeah. it was really difficult initially. She loved her own home. and she missed it. she would always be like, when am I going back to my flat? You know? So that happened for some time I have to say we did pay for a bit of personal care because the home, where we chose, they take them out. But my mom was used to going out every day, and they don't take them out every day. So we pay for a personal care assistant whose job was to just take my mom out every day. So that helped her with the adjusting. She didn't feel like her life had suddenly took cause from someone to go from going out every day to suddenly be in a residential place where you can only go out when they're going out and which could be once a week. That would've made the adjustment period harder. So we came together as a kid and we paid for, a care assistant who would go into the home work with the nurses and the staff there to say, I'm coming, I'm taking mom. And she took her to other places that she liked to go. So they would go on the bus, wanted together, and they would go on, to shopping and things like that. So we did that for the first year to, to help her settle in. But after some time we had to stop because what then happened was when the personal assistant didn't come, that my mom was trying to go out. So she became still obsessed with going down and she became like a flight risk every day. So they were like, okay, you've done that for, like six months. They were like, but you need to reduce it now because she's not settling into the home. She needs to spend more time here now. So we had to reduce that. and then she adjusted to the home. It was a beautiful place. She liked it. She made friends there. Girlfriend, boyfriend, there was, even Amanda, they would joke their mom, Shala, is this your boyfriend? And she would giggle, you know, so she, it became a home and she would dance and they would send me video of her dancing. they would give her food that was, you know, Nigerian, and we would bring stuff as well. So we definitely made it at home as she settled there. so initially she was distressed when she was in the home, but after some months she settled there and realized, okay, this is my new place. And then, like I said, she was there for four years and her memory gradually got worse. and thankfully in the end she just slept. she didn't have any, she had some conditions. She got covid. So that was when her Alzheimer's got worse. Actually, I would feel like she died less from Alzheimer's and more from complications of Covid. and by this time, by the time she slept, she had stopped talking and she stopped eating. So again, it's just for people to be aware of that. It was distressing, but it was, this time it was more distressing for us. she didn't know what was going on with her anymore. We were the ones that were distressed watching her change, and we just had to make sure she was comfortable that's it really. That was, how she was in the end.

Ad:

Thank you Kemi. my last one, yeah. Thank you so much for doing this. Yeah. Because I don't feel it's particularly nice for you to have to go through it all. Yeah. But thank you. I really, really, really appreciate you saying you would do it. Yeah. The last thing that I'm going to say is, what's next for you? What's next for Kemi? Yeah,

Kemi:

initially it was a shock because I was the one providing the main primary care, for mom. it filled, a big part of my life. So when she passed away, there was a big void, almost like, what am I supposed to do with myself now? I just reminded myself that, mom would want me to keep living my life, so I just started doing all the things that I always wanted to do. I'm an actor and I also have my work in housing, so I just focused more on my acting work.

Ad:

Any words that you'd like to give people who are going through or have been through what you've been through?

Kemi:

just look after the person. we see that they're changing. Definitely go to your gp. what I notice is a lot of gps now have Alzheimer's specialists or dementia specialists. So ask, if you notice anything even before you go with your loved ones. Ask to go and have a conversation with the Alzheimer's specialist that they have. that's one. And then also, So that's the first thing I wanna say. And then secondly, so yes, of course, do everything you can for your loved one that's changing, but honestly, get support for yourself as well. I needed therapy. I needed counseling. so go to your GP and let realize you were a carer. I didn't realize I was a carer. Realize you were a carer. If you have someone that's got any kind of dementia, it is so demanding on the carer more than any other condition. So definitely make sure you get help for yourself as well. Yeah.

Ad:

Thank you, Kemi. Yeah. Thank you. Thank you. Thank you so much. Thank you. Yeah,

Kemi:

thank you I'm glad that you are, you know, you're doing this to, yeah. Let people know.

Ad:

So I would like to end the episode with a poem. Written by Simon Ingram Hawkes, and I found this poem on the Dementia Friends website. I have an illness. Do not be ashamed. Hold my hand. Sit with me and talk as sometimes I may remember you voices and faces that once were familiar. Eventually, I recognize no more. All of this may be difficult for you when nodding and smiling. Maybe all I can do, I may not say it, but I still love you. Little by little I'll fade away love and respect me whilst I'm still with you. Never forget me when I've gone, even on the days when the visits upset You. Stay a while and be with me please. Someday I'll only be in the stars and your dreams. Thank you for listening to another episode of Chat Aholic. Please feel free to leave a review wherever you listen to your podcast. And I'm grateful for you and take care of yourself and the ones you love.

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