Ellie
Ellie began caring for her mother, who had early onset dementia, while she was in University. She became her mother’s primary carer and would physically care for her mother and manage her mother’s finances. Ellie would work night shifts so that she could care for her mother in the day.
Ellie cared for her mother, who had early onset dementia.
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Ellie’s mother was diagnosed with early-onset Alzheimer’s at the age of 57. At the time, Ellie was away at university, but she returned home to care for her mother, who had increasing care needs. Ellie became her mother’s full-time carer and would arrange for formal carers to come to their home. Ellie would work night shifts so she could care for her mother during the day. Changes in her mother’s behaviour meant that her mother preferred Ellie to care for her rather than the professional carers visiting their home. Consequently, Ellie rarely got sleep during the day and was working night shifts in a temporary job. Ellie chose to halt her career and prioritise her mother’s care. She began to pursue her career in the field of her choice only after her mother was placed in a care home.
Ellie also managed her mother’s finances. Ellie felt that because she was a young carer, people often did not take her seriously and would patronise her. She felt that people did not think she would advocate for her mother or take her seriously when she did. Ellie’s mother’s age was also a challenge when arranging her care. For instance, since her mother was of working age, she was not entitled to employment and support allowance. However, her dementia symptoms meant her mother was unable to work. Additionally, Ellie felt that many care homes were not suitable for her mother because of her age, as her mother was still very mobile and strong.
Ellie describes experience of residential care for her mother during Covid-19 pandemic.
Ellie describes experience of residential care for her mother during Covid-19 pandemic.
So, mum died in 2021. Yeah, we couldn’t see her for a year. I don’t think I could physically, we saw her through a window. They had gloves that you could kind of reach in. But, we didn’t see her. I mean, mum’s care home shut I think in March 2020 and she died a year and a bit later. They did open, I mean, we got to see her a few times before she passed. But, our visits with her were not as, I used to go every single day. So then we got cut down to, you know, you have to book in an appointment. You have to have your test before. You can only go once a week. Then if they get an outbreak in the home, you couldn’t go at all. So, you know, during those last few months, we probably only saw her a handful of times. She also got, during Covid, she got hospitalised, not due to having Covid, she had a fall as far as I can remember. And I remember them not allowing us in the hospital to go see her. And they told me I had to stay in the waiting room, basically and they would call me in if they needed help with her ‘cos she was, she just wouldn’t let them do anything in terms of tests or. And then eventually, they got to talk about where they realised they’d get a lot further if one of us was there, so they let us in. But that was an, an argument to be able to go in and see her. And only one of us was allowed at a time as well.
Ellie’s mother was sectioned and hospitalised after doctors assessed the home care risk with care agencies.
Ellie’s mother was sectioned and hospitalised after doctors assessed the home care risk with care agencies.
She was sectioned just due to the fact that the, she was quite physically aggressive to the carers that came into the house. She would try and hit them. And sometimes she would just say things that were awful. At this point, she was still quite verbal actually and she could speak. She did reach a point where she couldn’t speak. It was just jumbled it came out. But yeah, they, they just said that they couldn’t come into the home anymore due to the level of risk, which I completely understood, but yeah, the doctors then kind of said to us, you know, “We’re struggling to find any other care company that would be willing.” And we didn’t really have, I felt like we didn’t really have much choice and they said that they wanted to section her or to get her meds assessed and get her in a stable place due to the, due to the I guess it was kind of escalating at the point that her behaviour was getting really, really quite bad.
Ellie talks about her mother’s reaction to care workers in the home.
Ellie talks about her mother’s reaction to care workers in the home.
For the first couple of years, we didn’t have any carers in. It was, we could manage it and then we had home care, which was, was really difficult at the start because mum went through a really aggressive phase where she was physically, she was physically violent towards them. And she would refuse help from them and so even though we had carers that I would kind of end up doing most of the work when they were there.
A lot of the care companies refused to [laughs] refused to come into the home anymore because of her aggression, like the way her disease kind of took on.
The care home was not an appropriate fit for Ellie’s mother’s care.
The care home was not an appropriate fit for Ellie’s mother’s care.
We struggled because she was so young compared to everyone else in the care home she was, you know, 20, 20 years younger. I think obviously now, there’s more and more younger people getting diagnosed with dementia. But she, at the point when we were searching for care homes for her, we used to go and visit and everyone would be so much older and we used to think, this just isn’t the place, do you know what I mean for her. But we managed to find a place that we felt comfortable with ‘cos, at that point, we didn’t really have much other option. And, yeah, she, she was just so much younger than everyone, so, obviously physically she was still quite fit but mentally she wasn’t which, which was the opposite of you know, some elderly, frail people that have dementia that aren’t, so physically she was able to go round pushing everyone and kicking everyone and that like to the point where like, you know, from an 80 year old with dementia wouldn’t be able to do.
Ellie talks about putting her mother’s needs first and the impact on her life.
Ellie talks about putting her mother’s needs first and the impact on her life.
I think looking back on it, I was quite shut down. I didn’t really like to talk about it. I was just very, this is what needs to be done. Let’s focus on that. Let’s focus on mum. Let’s not focus on me. I don’t think I was, I think it didn’t wanna open any gates, do you know what I mean? I was, I liked to keep it all very suppressed and just focus on what needed to be done and get it done. And that’s why I think, after mum passed away, I found myself in such like a, a limbo almost because I was like what now? I’ve never really, I don’t think I ever really acknowledged it, it’s impact on me for, you know, seven, seven years because I was so focused on what needs to happen with mum and then I was left with all this time after and nothing to take care of. My whole personality had become taking care of mum. So, after mum passed away, it was, it was a struggle to adjust to not having that in my life, if you see what I mean?
Ellie recalls her decision to halt her career to continue supporting her mother.
Ellie recalls her decision to halt her career to continue supporting her mother.
It definitely impacted my career ‘cos I ended up just doing a job that, I mean, I graduated from uni. It was a struggle. I had a lot of stress trying to manage, you know, everything going on with my mum and then my university and stuff like that. But, you know, I did, I did relatively well to juggle it. And the thing is is when I got home like everyone else was kind of going into careers based on their degree and you know, 9-5 jobs and starting off with like graduate jobs and I didn’t do any of that.
I went to do like a bog standard night shift like a hospital just because I needed something that was flexible in terms of I used to work three night shifts a week and then I had the four days off. So, in essence, I would be there every day. I do feel like that halted my career a bit because I didn’t really, it was only when she went into the care home that I really start, got my first job based off of the degree I did and what I actually wanted to go into. So, that was a period of, you know, two, three years where I was, I just was a bit stagnant. And I actually didn’t work for a year as well after I graduated just because I just spent all my time with mum focusing on her and what she needed. So, I would say, I mean now, I, I think I’ve done pretty well for myself. But if I look back and think, you know, had I had two or three more years experience doing what I’m doing now, where would I be? I’d definitely be further on in my career. But it’s not something that I regret because it, it’s just, to me, it was a, a necessity.
Ellie describes her mother’s gradual dementia progression.
Ellie describes her mother’s gradual dementia progression.
She, from diagnosis to the point where she passed away, it was only, you know, seven and a half years which in the grand scheme of things is not that long of a time. But yeah, she got to the point like say two or three years maybe before she passed away that her mobility was just getting slowly and slowly worse and she used to have seizures, which I think got 100% contributed. Every time she had a seizure, she would get a little bit more frail and her mobility would get a little bit worse. There was the suspected stroke once or twice, but no-one could ever really confirm it. Because short of putting her in a CT scanner which, to be perfectly honest, it just wasn’t worth, it wasn’t worth it. Yeah, her mobility would get worse.
She was having falls she used to then just take tiny little steps and then to the point where she needed to be aided. She could walk, but you know, she needed one person on other side of her. She couldn’t physically bathe. She couldn’t shower. She couldn’t go to the toilet herself. She couldn’t hold a fork to her mouth. She needed to be fed. She would only drink through a straw. She couldn’t hold a cup. She got to the point where she was on soft food. She couldn’t chew properly. And I’d say maybe it got to the point, that point maybe a year to a year and a half before she passed away. But it was just slowly progressing and progressing up to that point for a while.
Ellie explains about her mother’s situation at work before she was diagnosed.
Ellie explains about her mother’s situation at work before she was diagnosed.
I think a few months before she was diagnosed, she actually got laid off from her work and due to making a lot of mistakes and in hindsight when, when you think about it now, it all makes sense. She did a lot of administrative work and she used to be, they laid her off because she was making errors and things like that. And she didn’t tell anyone for like six months. She used to just pretend to go to work for the day. So, she was very much that kind of person where she was in denial anyway.
I managed to actually speak to her boss like, you know, after she was diagnosed. I said, “This is what’s happened like would you be able to kind of give us some insight into how she behaved at work?” He just said, “She was really erratic and making mistakes and you know, you have to kind of be mentally well to do like administrative.” It was like accounts, an account’s administrative, administrator. And yeah, she just wasn’t, she was just making errors and things like that. So, I mean, it’s understandable that she wouldn’t be able to do it.