Patients and Patience: Conversations with a couple living with dementia

To interview your own family is a strange experience, especially when they provide the same story from two very different perspectives. I decided to do so to try to gain a better understanding of how the lives of my grandparents have changed since a diagnosis of dementia came into their lives, but what I found most interesting was how they communicated with me. The contrast between them was something that spoke volumes, and highlights how the mind of one person with dementia may differ from a healthy person.

Since her diagnosis of early-onset vascular dementia, my Grandma Fran has been gradually losing her memory, coordination and independence, relying increasingly on her husband, my Grandad Bob. For a long time, my Grandad shielded the rest of us from the potentially upsetting truth about the severity of her condition and tried to shoulder it alone, spending increasing increments of time away at their second home in Spain with her. He has since come out of his shell to accept further support, hence why I was able to have him open up enough to be interviewed about his experiences.

But before I share my conversations with the two, it’s important to understand them as people, not merely as a “dementia sufferer” and a caregiver. Sufferer, in fact, is not a word they choose to use, as Fran has still lived well and successfully for many years with her condition, despite limitations requiring additional support. She does not feel she is a victim, and Bob doesn’t make her feel like one.

Bob and Fran were childhood sweethearts, getting married at twenty and having one daughter – my mother, Donna – a year later. They did not come from money but worked extremely hard as a team of two to be able to afford a wonderful life together, the likes of which their parents probably couldn’t have dreamed of. Although Bob had to work away from home for long periods of time in his shopfitting trade, even travelling around the world and missing some of his daughter’s childhood milestones, their marriage stayed strong. Bob attributes this to my grandma’s strong-will, independence and her can-do spirit, while Fran used to insist it was Bob’s admirable work ethic.

Bob seems to be the epitome of a self-made man. He built his own company from the ground up and worked relentlessly long, hard shifts in dozens of countries without breaks in order to expand on his success. But he wasn’t only self-made; Fran was working behind the scenes, allowing everything to run smoothly. He was often the quiet one of the two, while it was Fran who could command a room. She was quick, funny and incredibly warm. She never spoke a bad word of anybody – that is unless they had bothered her family. When I told her I was being bullied, it was her who stormed into my school to have a stern word with my teachers, all the while reassuring me with the old mantra “sticks and stones may break your bones, but words can never hurt you.” When I was a kid, she’d look after me whenever my parents were working, and I recall being fascinated by her collection of clothes, jewellery and makeup. She was always very fashionable and glamorous, and even let me try things on. The first time I wore makeup, it was her who sat and put it on for me, all the while telling me how gorgeous I was with or without it.

Now that her dementia has advanced, my Grandma can’t do a lot of the things she used to do. Her fiery spirit is still in there, but she can’t express it in the right ways. Her language is jumbled – as her interview demonstrates – and she can’t live independently anymore. As he goes on to explain, Bob has had to take over her role in their relationship while maintaining his own, pushing him out of his comfort zone. He’s learned how to style her outfits, and even how to do her makeup for her. He cooks and cleans and keeps their finances balanced, all while taking care of her, and helping support her in conversations when she forgets herself or gets her wires crossed.

Today, they live primarily at their second home in Spain, where they retired, and where I’ve been lucky enough to spend every summer since I was two years old. Between them, they could fill a volume with their stories, but now that my Grandma Fran’s memory is slipping I’m keen to try to understand her perspective on them all before the stories fade away. She’s told me about her father, a WW2 veteran who survived a POW camp in Japan; about her fight to get help for her suspected endometriosis; about her younger brother who quite literally murdered a man and landed in prison; and how she had half the boys on their street fighting over her as a teenager. My Grandad too has stories of travelling the world; of how he rescued his cousin from the moors murderers as a child, and of how he developed cerebral palsy and battled through the difficulties that came with it. To them though, their greatest story is of their marriage, and that – along with the impact that my Grandma’s dementia has had on them over the last decade – is what I’ve focused my interview questions on. Between the two of them, we can glean an interesting picture of life with dementia, as a condition that can sometimes affect those close to the patient even more than the patient themselves. All I ask is to read their accounts with a compassionate heart, and an open mind. Understand that while the two are markedly different to each other in their fluency and manner of speech, they are describing a shared experience; from two unique perspectives. My Grandma Fran is more than just her diagnosis.

13/09/2021 – Informal interview with Robert White, ‘Grandad Bob’ (B)

E: So when did you meet grandma? And could you tell me a little bit about your lives together?

B: Oh, in 1965. She moved across the road, we lived in terraced houses which were over a hundred years old. And, uh.. I fell in love with her at first sight. And when she was sixteen – her birthday would have been March 1967 – I sent her a birthday card “to the one I love”. And I think that might have won her over!

E: (Chuckles) I think it probably did!

B: Still took me two years to get a date.

E: Going forward in time now then, when did she first receive her diagnosis of dementia?

B: Oh.. Just before we retired. Her age- she was about 62, I think. She’s 71 now. She’s probably had it longer than that, but because it was diagnosed early the medication has slowed it down, I think. She has deteriorated a lot in the last 12 months.

E: That tends to happen, I suppose. What were the first red flags you noticed that made you realise she had it?

B: I had to help her in the office. She couldn’t do the office work. That’s when I employed your mother, to help.

E: Right. Did my mum know then, or-?

B: No- we didn’t. I just knew I needed help. Then when your mum decided to help us, that’s when she realised there was a problem with your gran. That’s when we decided to take her to the doctors and she was diagnosed.

E: So in those early days, what sorts of signs did you pick up on?

B: Uh, mainly her computer skills. Gone. She couldn’t do it. Mine aren’t great, my skills were crap, but I had to improve to help her out. She just lost it.

E: So what kind of jobs are you now responsible for because grandma can’t do them anymore?

B: She can’t do anything, your grandma.

E: Anything you never expected to have to do?

B: Cleaning, domestic work mainly.

E: And what do you have to do for her?

B: I have to wash her, shower her, do her hair, dress her- she’s okay at undressing. She can do that no problem. But she can’t dress herself. She’ll just stand there in a morning, because she doesn’t know what to wear. So I have to dress her. Basically if I wasn’t here, she’d need 24 hour care.

E: Yeah. I suppose she’s very lucky to have you, then. If she didn’t, do you think she’d have to be in a home of some kind?

B: It depends on the family, really. She’d just need some kind of 24 hour care.

E: Mhm. So, can you describe grandma before dementia?

B: Your grandma? She was full of life, full of bubbles. She could drive, she was so independent. She’d go anywhere on her own, do anything on her own, she could manage the house, she could manage the finances, she could do everything. Which is very hard for me now because now I have to do everything I never had to do!

E: Yeah. Just for context, could you provide a bit of background on your career? As I know you were away a lot so that would impact how much she did around the house and everything.

B: My career was my business. I did whatever my business needed to be done to fulfill the job. And your grandma was always there to help me do that. I was away from home – I never took her with me by the way, only once, to Bahrain, and she always picks up on that.

E: So how has she changed since her diagnosis?

B: Changed in what way?

E: In herself. How would you describe her now compared to how she was?

B: No confidence, no skills, uhm.. She’s not good at the toilet and such. She’s okay at communication, but when she’s communicating, she’s not making sense, if you understand what I’m saying. Her communication- you only get half of it, so you have to pick up bits out of that, which can be very hard. And she gets upset when I can’t. I don’t know whether you’ve noticed..

E: I have noticed. I can imagine it must be difficult to stop her from getting upset, because you have to hold a conversation, but if you don’t understand you have to sort of fill in the gaps.. So, due to those communication issues, do you ever feel isolated or lonely?

B: I do, sometimes, yeah. I feel as though.. How can I feel? Sometimes I sit down and cry because of the way she is. Because it’s not your grandma. And sometimes your grandma sits down and cries and she says “why’s this happening to me?”. But that’s just personal things. It does impact on me, a lot. I don’t have a life like I used to.

E: So your mental health, would you say-

B: My mental health’s fine. I’m alright. I’m still fully there, but I have to think for two people. It’s like having a five year old if you know what I mean, that’s not gonna get to six- in her mind.

E: So you feel you have to stay strong for her?

B: Yeah.

E: Right, right. So obviously you’ve touched on a few of them, but what are some of the biggest challenges with her having dementia that you’ve had to adjust to?

B: She picks up on things that she shouldn’t. On a very small issue, she wants to make that into a huge issue. Uhm.. So I have to be very careful what I say to her, because she picks on that and she’ll dwell on it and go on and on and on about nothing. And in the end sometimes I crack and I have to say “will you leave it alone because that’s not happening anymore”. That’s one of my things.

E: Yeah, I think a lot of people have a misconception about people with dementia that you could literally say anything to them and it’ll just go out of their head. People seem to think you could confess a murder to someone with dementia to get it off your chest, because they won’t remember.

B: No, no, you tell them something and they dwell on it. I might say to her for instance when I go and buy a pint, “me beers a bit cloudy,” and she’ll go (hits table) “that’s not right, I need to sort that out!” And it’s like, “but, Fran, it doesn’t matter”. (Chuckles)

E: So, what kind of coping methods do you use when it gets you down, anything that makes you feel better?

B: I just think of the good times I suppose. I do go inside myself a bit, I do bottle it up a bit. That’s probably the wrong thing to do but I do bottle it and think of the good days.

E: Yeah. You should probably try talking to my mum a bit more about it.

B: She’s not very responsive to that kind of thing, she doesn’t think there’s anything wrong with her most of the time.

E: Oh, no- my mum-

B: Ohh, I thought you said your Grandma. Yeah, probably.

E: What’s something you wish people understood better about dementia?

B: To just give them time. Let them have space. Talk to them, instead of just blanking them. That’s my thing, your grandma needs people to talk to her. Not me all the time because I’m boring, but people. Because she does sometimes talk to people like she’s known them for years and years when she’s just met them. And people go “oh wait just a minute.” Obviously if they don’t know she’s got dementia. If they do know, what people should do is give them a bit of time and space, and understanding. Cause it’s, uhm.. It’s a horrible illness, isn’t it?

E: Yeah. If there was anything that would improve life for the two of you, what would that be?

B: Ah, finance, obviously.  Medication. More research into curing it. I’m sure there is, but because there’s so much money spent in the system – not just in the UK but worldwide – in actually caring for people with dementia, I think there should be more money spent in research to help them. That’s my opinion.

E: Yeah, I agree. It’s like they want to treat it after it happens when it would be better to try to prevent it.

B: Yeah, I mean you don’t know you’ve got it till it happens do you? And it’s a slow thing. And people have got it but don’t know they’ve got it, until someone says “why are you doing that? There’s something wrong with you”. Then you’re diagnosed with dementia.

E: To end on a happier note, you said before that you like to think of the good times; what’s your favourite memory with grandma?

B: Meeting her, in Gorton. That was probably the best bit. (Chuckles)

01/09/2021 – Informal interview with Frances White, ‘Grandma Fran’ (F)

E: Hi Grandma, how are you feeling today?

F: Well, now that I’ve seen you, I feel wonderful.

E: Thank you, that’s very sweet! So, of course dementia has a lot to do with memory loss, but I wanted to ask; what do you think your favourite, happiest memory is? I know it’s a hard one-

F: That is a hard one. That’s many, many, many many years ago.. I do remember some bits, but not much.

E: Do you remember your wedding day?

F: Yes.

E: Details, or just bits?

F: No, no that’s gone.

E: Yeah. What about when your daughter was born, my mum? Do you remember that?

F: I do remember that. And I was absolutely great then, absolutely fine.

E: Do you know how old you were when you had my mum?

F: Oh.. I can’t remember now. I just know she’s lovely!

E: Yeah, she is – my mum is wonderful. Probably because she was raised by you!

F: (Chuckles) Possibly. Bob might remember.

E: I’m sure he will. So if I ask you to remember something really happy from your past, what’s the first thing that comes to mind?

F: Uh.. I don’t really look for it, to be quite honest.

E: Mhm. You just live in ‘the now?’

F: Yeah, yes. I’ve left- I’ve lost so much now. A lot of it doesn’t stay with me. Some does, and some doesn’t. Or sometimes I’ll just say ‘oh, do you know this, blah blah blah?’ It can come up. And then it doesn’t always stay.

E: What about when you were a child? Is there anything from your childhood that you remember, anything specific?

F: No, it was just lovely. (Chuckles).

E: Is it like a blur, rather than specific events, or-?

F: I just remember it was a lovely thing. So, we used to see Ethan a lot.. We were with him quite a lot, you know? *Note – Ethan is my 12 year old brother, not a figure from her childhood*

E: What about when you were a kid yourself? When you were really young, living with your parents? (Pause) It’s okay if you can’t remember.

F: Just bits and pieces. I lost a bit, so I don’t know. And sometimes, it’ll just- (snaps her fingers). It’ll just come up. And I’ll say something to Bob and he’ll say, ‘how do you know that?’ And I’ll say ‘I dunno, I just do.’

E: Do you remember any details about your parents or anything like that?

F: Not so much now, uhm.. Because they all died earlier. Which they used to do in them days.

E: What if I asked you to describe, say, your mum?

F: Uh.. I think she was very nice. But I think she can be a bit lazy. Cause we used to do it, me and my sister Anne.

E: Everything around the house?

F: Yeah, yeah. She was lazy. We did it all.

E: I know it can be hard to describe people from way back, but people from your life now – like my Grandad Bob – how would you describe him, your husband?

F: Bob? I’d say he’s lovely, absolutely fantastic. He looks after me very well. He always does, he always wants to make sure I’m alright.

E: Has he always been that way?

F: Yes. Even before that happened, he would do it often.

E: What can you tell me about the rest of your family that you remember?

F: Well, most of them are dead. My brother and I, we used to go out all-together. All the time. We were like the two younger ones.

E: Is that your brother who was in prison?

F: That’s right, yeah.

E: But you haven’t seen him since-

F: He’s dead. Oh, he was dead long, long ago.

E: Did you have two brothers?

F: I.. I had just the one, one brother. *She had three brothers*

E: Right. And, what about my mum, your daughter? I know it can be hard to remember details when you don’t see her often, but what can you tell me about her?

F: I don’t remember her a lot. If somebody told me about her I’d go ‘oh yeah, I remember,’ but some things I don’t. But she sounds terrible- lovely. I didn’t mean to say terrible! (Chuckles)

E: (Chuckles) I know what you meant. So, since you’ve been diagnosed with dementia, what is it you find hardest?

F: Uhm, it doesn’t bother me too much. It is what it is. There’s nothing you can do about it, so you just take it as it comes along. And there’s things that they can do these days, you know, so I have.. Things. You know, they might say I need that, or a bit of some of that, so I have things like that now. Which I never needed before. Before that happened. *She appears to be talking about medications that she takes to slow the dementia progression*

E: I know you used to like reading books, do you struggle with that now?

F: Oh, I loved them. I don’t do it the same as I used to, I do- do it sometimes but not like what I used to. Some things I’ll remember just out of the blue, but then I’ll forget, since I had that. It was not great, to begin with though. *Bob reports her losing the ability to read completely*

E: Yeah. What made you notice that you had dementia?

F: I kept saying it, and they kept saying there was nothing wrong with me. Not family, just when I was talking to them about it, you know? I kept saying there’s something wrong here, there’s something wrong, but nobody would tell me what it was. They’d say, ‘there’s nothing wrong with you’ and I’d say ‘there is, there is’. *From context, ‘them’ is referencing her doctors*

E: It must be frustrating feeling like people weren’t believing you. But Grandad Bob helped?

F: Oh god yeah. It was Bob who went “you need to sort this, something is not right here”.

E: So you mentioned that you try not to think about having dementia too much. Do you never feel sad or upset about having dementia?

F: No, it’s just one of them things. There’s nothing you can do about it so I don’t want to be going ‘waa, waa, look at me, you need to do things for me’. And Bob is very very good to me. If I do something silly, he’ll tell me, but never ever ever nasty. I’m very lucky. He’s good, but as he got older, he was so different.

E: Better?

F: Very better. I think it was just because he was older.

E: Yeah. Can you recall the last time you felt upset about anything?

F: No, if I got something that’s bothering me I would ask. I would say I couldn’t do something, ask somebody.

E: When you know you’re struggling to remember something, how does that make you feel?

F: Not so bad now.  When it first happened – because I was quick in everything before that – then out of the blue it all changed. So that took me a bit to sort of – get it in my brain. I didn’t cry or nothing like that about it, it was just ‘oh well, it is what it is.’ You just have to live with it.

E: What did you used to do before you had dementia?

F: Oh, I would be going out, I would be – depends what you’re doing. Might be out with your friends, then later on when you’re older you’d be out with your friends, stuff like that. With family, as well.

E: Yeah. Do you remember helping Bob with his business?

F: No, I don’t remember that.

E: I know you used to manage his books, accounts, paperwork and all of that for his business-

F: For who?

E: For Grandad Bob.

F: For Grandad Bob, yeah. Well, Bob is very good.

E: So how do you spend a typical day now?

F: What do I do? Well it depends. Bob and I, we go out, stuff like that.

E: So he takes you out often?

F: Oh god yeah.

E: And do you prefer it here in Spain, or back in the UK?

F: Uhm.. I prefer to be here. Definitely, a hundred percent.

E: Is there anything about the UK you prefer?

F: Ah.. Nothing. Nothing. Much better here. It was alright, you know, it wasn’t nasty or anything, but uh – when we sort of came and we had to go, it was all ‘you have to do this, you have to do that, and this, and that’ until in the end I said to Bob “I’m sick of this, I’m getting away” and he said “okay, come on then.” So we did. And we paid them, you know? We weren’t getting anything for nothing. And I said to him “I’m sick of this. You’re doing all this work, you’re doing a lot, we get nothing for it. Come on, we’re going out of here.” So we did. And that was the best thing we did. We love it round here, and we wouldn’t change it.. Unless we had to.

E: What’s something you wish people could understand more about dementia?

F: That it doesn’t really bother me. If someone asked me about it, I’d say “oh, yeah, I’ve got dementia” and all that, but I’m lucky. I’m one of the lucky ones, that I was able to do it. Because they kept saying “there’s nothing wrong with you,” and it was “yes there is,” “no there isn’t”. And this was people supposed to be looking after me! And it was Bob who said “this is not right, not right at all, blah blah blah,” and it was wonderful after that! *’Do it’ seems to refer to receiving diagnosis as early as she did.*

E: Do you feel like maybe doctors don’t listen to women as much? That you need a man stood there backing you up?

F: Oh they don’t listen to them at all. What happened was, I said to Bob, “they don’t believe what I’m saying”. And he said, “they will soon”.

E: I believe a similar thing happened when you were younger, when you were having period problems? *Here I’m referring to when my grandma struggled to be taken seriously for her endometriosis, and needed my Grandad’s permission for a hysterectomy*

F: Oh it was terrible. Absolutely terrible. Shocking. Bob helped very much. If it’s a man, it’s different, isn’t it? But Bob soon put them straight. He said, hey, blah blah blah – I can’t remember exactly what he said, but you know.. (Chuckles)

E: That’s okay. So, is there anything you think could be better or changed in people’s treatment of you because of your dementia?

F: Yeah, of course there is. Absolutely, I’d be telling lies if it wasn’t. But if anything, people are nicer to me now. I’m very lucky. We know we have lots of friends who are all nice.

E: Is there anything else you’d like to say about anything before I stop the recording?

F: Not really. All I can say is, I’m glad that I’ve got Bob there, because he looks after me a lot. Because there’ll be things that I can’t remember, and other times I can come up with loads. Don’t ask me how that happens. (Chuckles)

E: So he’s there for the good and the bad?

F: Yes. And that’s lovely.

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