‘I feel a constant responsibility’: What it’s like being a student carer in lockdown

We spoke to a Cambridge student on how she manages uni work alongside caring for her mum with MS

4 years ago

Lily* is in her second year of Cambridge University, studying History. Her mum has primary progressive multiple sclerosis, a condition that can affect the brain and spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation or balance. She was diagnosed when Lily was 17 but has been showing bad symptoms since she was 15.

Her mum started receiving care from nurses when Lily was 18, just before she started uni. When she was home from uni holidays she would help her dad out with the day-to-day routine, however, as her uni work intensified, she chose to stay at uni during exam time so she could fully focus on her course.

Like many students across the country with parents who have serious health conditions, the country-wide lockdown has lead to a decrease in the in-house care from the NHS meaning they have to return home and take up this responsibility.

Lily is at the peak of revision and coursework. Coming home has meant she is juggling uni with the responsibility of helping her mum stay safe and healthy. On top of this, she feels constantly consumed by the anxiety that comes with caring for a vulnerable parent during a pandemic.

She told me about some of the struggles she faces every day.

Caring for my mum is a constant responsibility

Lily told me there is a lot that goes into the daily routine when caring for her mum – it is both time-consuming and nerve-wracking.

She explained: “Her condition affects her balance, mobility, memory and energy levels, and this is worsened by a few mental health problems. She can walk to the bathroom and kitchen with a walker, but can’t get food for herself, wash herself or get upstairs.

“Caring for my mum essentially involves getting her food, cleaning her hair in the kitchen sink, helping her change/wash a bit more thoroughly and making sure she doesn’t fall. I also try keep her company as much as I can, as the cognition problems involved with MS mean she goes through phases of not really remembering what’s happening”.

Aside from nurses, we relied on physiotherapist coming and keeping her active

Lily’s mum relied heavily on the frequent visits from physiotherapists to keep her mobile. This was really important in slowing down the worsening of the condition. “Now nurses aren’t available and physiotherapists can’t come to the house, our main problem is keeping mum mobile”, she said. “She usually has two sessions with a physio a week at home, which involve walking without the walker and light strength and balance exercises.

“In the last few years, these physio sessions have saved her mobility, and if she discontinues them altogether she could very easy permanently lose the little mobility she has”.

To ensure her mum stays mobile while physios aren’t available, Lily said her and her dad have been doing virtual sessions on Skype. She explained: “I hold my laptop angled at mum and follow her around so the physio can instruct exercise-wise. Dad stands next to mum in case she loses her balance so he can try to catch her.

“This is super important but also an added responsibility for me, her physio appointments are now a four-person job”.

We’re worried about her hurting herself and needing to go to hospital

A big worry for anyone with MS is that their mobility and balance is compromised, so they’re susceptible to falling and injuring themselves. Lily’s mum has been hospitalised around once or more a year. Lily told me she feels a constant level of fear that her mum will have to go into hospital and then contract the virus. She said: “With this worry, there’s an added sense of responsibility to keep her safe”.

My dad is asthmatic and over 70 so I worry about his health as well

Not only is Lily’s mum ill, her dad is also very vulnerable as he’s over 70 and suffers from asthma. Lily worries about his recovery and health if he was to catch coronavirus. This could also mean she would need to care for her mum alone which would be really difficult, she explained: “Self-isolation is virtually impossible in a household where an individual is being cared for. I don’t know what we’d do”.

Even with Cambridge’s support, the work is still overwhelming

Cambridge has reduced History students’ five 24-hour exams to one because of the difficult circumstances lockdown brings for a lot of students. Lily said this is a huge weight off her shoulders both with revision load, but also the difficulty of doing 24-hour exams whilst caring for her mum.

However, even one exam brings a lot of challenges. “As much as I’m very grateful for the changes, it’s quite different completing it at home when I’m a carer rather than in the library”, she said. “At least a quarter of my time awake is spent with or helping mum, so obviously I have to fit my online exam around her. There’s also always a risk that she has a fall during my exam”.

The psychological toll of worrying about what could happen is really tough

The workload is difficult but Lily said it definitely isn’t the hardest part. Instead, the weight this has on her mind is what she’s constantly battling with. She’s always on edge worrying about all the possible problems that could arise with her mum, and now she’s her carer she can’t escape knowing that this is her responsibility.

She told me: “I think the psychological toll, far more than the time spent caring for mum, is really what’s made this period difficult and has affected my studies the most”.

*Name changed