Kiran
Kiran’s grandmother was diagnosed with dementia and Alzheimer’s disease, living with the condition for approximately 20 years. Her father was the next of kin, and initially, Kiran had a more inactive caring role as a young child. She gave her grandmother her medications, managed her personal care and kept her grandmother company. Gradually, Kiran began to take on more day-to-day caring responsibilities after she entered secondary school until her grandmother’s passing in 2019.
Kiran, aged 25, cared for her grandmother between the approximate ages of 8-21. She lived with her grandmother in the family home and provided the day-to-day care for her grandmother. Kiran is South Asian British.
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Kiran had a close relationship with her grandmother. They lived in the same family house and she managed much of her grandmother’s day to day care. She coordinated the care workers’ visits, accompanied her grandmother to her hospital appointments and interpreted in her grandmother’s native language or requested a hospital interpreter to help. She also consulted with health and social services when she had concerns about her grandmother’s health and welfare. While in school, Kiran was not part of any local young carer support groups, but came to know about them after participating in research and being introduced to other young carers.
From an early age, Kiran dedicated time to her studies and time to care for her grandmother. She decided to attend university near to her home. She would be able to return regularly to help with her grandmother’s care. After Kiran’s grandmother passed away, Kiran felt she would have benefitted from having extra support for carers after the person they cared for passes away. She felt support could be given particularly to young carers who spent their childhood and young adulthood in this role. She also thought that health and social care services need to provide more support to people with non-English speaking backgrounds.
Kiran describes the difficulty interpreting in her grandmother’s native language.
Kiran describes the difficulty interpreting in her grandmother’s native language.
I think obviously we would request, you know, if we could get a translator, then great, sometimes we did, I guess, you know, one out of, two out of 10 times maybe we would, and it would be like the same translator as well. So, what it seemed like is that there was probably like one or two translators in the city, so, you know, it would make sense that they weren’t there for every appointment, and I was there, or my sister was there, most of the time it was me and it would be my mum as well. At that time because my mum wasn’t working, her English wasn’t that great, so it would be me translating.
I mean obviously they tried their best, you know, they probably only had like one or two translators and it was just whether or not they were available. Would have been great if there were more? 100 percent. I think it would have been a lot easier and I guess there’s also the sort of I guess generational difference when it comes to these appointments where, you know, I’m translating one thing and I’m telling them, “No, the doctor said this, like we should… you know, we should honour that,” or whatever the doctor’s saying, and my mum and my gran kind of sort of they would disagree or be like, you know, “You’re not understanding this.” I think there was some sort of differences there because there was… you know, maybe… maybe that sort of age gap or, you know… but when it came to these translators, they were… because they were, let’s say my mum’s age, they were kind of more understanding and, yeah.
Yeah, because obviously I guess, you know, I’m going into these appointments and these doctors are saying… they’re throwing these words out and, you know, ‘the reason why you have this is because of this in the brain and that in the brain,’ and trying to explain that to your gran who probably isn’t, you know, paying attention and just wants to be treated, and then your mum who’s just really struggling to understand, obviously proved to be quite difficult.
Kiran talks about her sister’s involvement in support groups and reflects on her own choices.
Kiran talks about her sister’s involvement in support groups and reflects on her own choices.
Yeah, definitely. I feel that if I was to compare my sister’s experience having started secondary school and, you know, the teachers know about her situation, and she’s been offered counselling, and there’s like social groups and stuff, so I think she definitely benefited from that, even till this day, and for me… I mean it wasn’t really anyone’s fault, I just never knew that there was such services available.
And I feel as if coming from that situation, you’re just thinking, ‘well, if I need help, then they’re going to, you know, provide me with a solution,’ so obviously to my knowledge there wasn’t any solution as to… you know, they can’t really make my gran better, so there wasn’t much that they can offer me, so I think that was my thinking then.
Kiran describes her role caring for her grandmother as a child.
Kiran describes her role caring for her grandmother as a child.
But the state that it was in when I was like really young, let’s say about 10, 12, it was completely different to once I got into my 20s, and… yeah. So, I think I became a young carer… [mm] in a sense I was always at home during most of my childhood, just because somebody needed to keep an eye on her and, you know, give her company, and so I’d call that more of like an inactive sort of young caring role, up until I probably got into my teens and I started secondary school, that’s when I’d probably say I was more of a young carer there.
And we were in the same bedroom, so I’d be checking in on her medication, and then throughout the night if she did wake, or such, I’d be there, and if there were any accidents and, yeah, I would probably be like the first person for my family members to speak to because I was with her the most.
And then it was pretty much like that up until I… you know, also when I was in college, but around then I think doctors or services gave her her own bed because nearing the age of when I was 18, that’s when she started to wet the bed more, so they thought it’d be easier to get like… it was like the sort of special mattress. So, she’d sleep in one room and then I would sleep in the living room next to her, so I’d be up at night like working on college stuff also whilst she was awake and needed company, and then in the daytime I was kind of like very, very sleepy.