Young carer describes the daily reality for the elderly betrayed by our creaking social care system

For five years, Sumia Hussain, 26, has worked as an agency carer, providing for the personal needs of her clients as well as preparing their meals, often feeding them and doing light housework. 

Here, Sumia describes in heartbreaking detail a recent typical shift. As the Mail backs the Alzheimer’s Society’s call to end the social care scandal, Sumia’s account lays bare the shameful lack of support for some of the most vulnerable and lonely. 

3pm: Ethel is tearful and asks me not to go

Today, I have eight clients to see during my six-hour shift — sometimes I have nine — and I usually spend half-an-hour with each of them. 

I’m always pressed for time; if I spend too long with one client, I won’t have enough time for the next. 

And it’s not only the care time I need to think about — I have to drive to and from appointments and you never know if the traffic is going to be good or bad. So I try to give clients as much attention as I can, but always with an eye on the clock.

My first client today is Ethel, who is in her 90s. She lives alone and has advanced Alzheimer’s, spending her days bedbound and staring at the wall. 

Her family are able to visit her and bring her shopping only at weekends because they work, so she’s dependent on carers who come in four times a day between 7.30am and 7.30pm to help with toileting, meals and housework.

For five years, Sumia Hussain, 26, has worked as an agency carer, providing for the personal needs of her clients as well as preparing their meals, often feeding them and doing light housework

Even though I see Ethel almost daily, she can’t remember who I am from one day to the next. Today she thinks I am her best friend from when she was younger. I don’t correct her as it makes her happy.

My grandfather has dementia and I try to treat all my dementia clients with the same care and patience I give him.

There is a lot to do, so I get started straight away. Today there are two of us (we sometimes have to work in pairs if the patient has to be lifted). Between us, we change Ethel’s incontinence pads, adjust her bed, warm up a fish pie and feed it to her, and find time to chat.

I also paint her nails, which she loves. Moments like this make it worthwhile — you feel you’ve made a difference.

When I get up to leave, Ethel is tearful and asks me not to go. I feel so guilty, but I have seven other appointments, other people who need me.

Some clients get 45 minutes if a social worker has determined they have greater needs, but for most it’s 30 minutes.

I tell Ethel I’ll see her tomorrow and she smiles and settles down, but it’s always really hard leaving clients alone.

People often ask me why I wanted to be a carer — I’d previously worked buying and selling products on eBay and Amazon, but changed careers as I wanted to do something positive to help people.

My friends say they couldn’t do my job, they think it’s really hard work — I think they’re put off by the toileting aspects of it, and having to cope with dementia patients who are confused and distressed.

But I really enjoy it and feel I am helping. It is tiring, though. I usually work six days a week with just Mondays off.

As I leave, I log out via an online app so the agency knows I am running on time.

4.10pm: Trapped in his home for years

Next on my list is Alfred, a man in his 80s who has limited mobility because of a stroke several years ago.

His daughter pops in daily for a couple of hours, but she can’t stay all day. Having carers coming in takes the pressure off her and provides company for Alfred.

He hasn’t been out of the house for years. At first he could stand on his own, and now he can’t. I think he needed more rehabilitation after his stroke, but treatment on the NHS ends after a certain time.

Carers come four times a day. At 7.30am they help him with washing, toileting and breakfast. Then at 12.30pm they give him lunch, before another visit at 3.30pm to give him a sandwich and some cake, and an evening visit to help with getting to bed and taking medication.

He likes to chat and we talk about his days in the Army and being out on his bike when he was younger. 

Normally he says he is too embarrassed by his lack of mobility to go out and see people, but a friend is visiting him today and it makes me so happy to know he will have company.

I give him his medication, wash up cups and plates and tidy the kitchen, and leave after a quick chat.

I would love to spend more time with clients like Alfred. Some people are so lonely and they really perk up when they have company — and they are always so grateful.

5pm: Muriel and I sing together

Back in my car, this time I’m lucky the traffic isn’t too bad. I drive on average 60 to 70 miles a shift.

Muriel is another client with Alzheimer’s. Her main problem is that she lives alone and forgets she can’t walk unaided. She has falls if she doesn’t use her frame.

As soon as I walk in, she gives me the biggest smile which makes my day. She used to be in a choir so sometimes we’ll sing together.

As a carer, it’s about finding things each patient enjoys to help them. I’ve had no specific training on looking after patients with dementia and have just picked it up on the job.

Today I help Muriel out of bed to sit in front of the TV and use the commode. I make her a sandwich for her tea and change her incontinence pad. Sometimes she has to sit in her own faeces for three or four hours until the next carer comes in, which she understandably finds very upsetting.

She is lucky she has family close by who visit every other day. But I do worry about what lies ahead. Muriel has four visits a day from carers, but if I’m concerned about her because she’s upset or distressed, I call the family so she’s not alone.

Muriel is another client with Alzheimer’s. Her main problem is that she lives alone and forgets she can’t walk unaided. She has falls if she doesn’t use her frame [File photo]

Muriel is another client with Alzheimer’s. Her main problem is that she lives alone and forgets she can’t walk unaided. She has falls if she doesn’t use her frame [File photo] 

5.45pm: GP won’t do home visits

Sally is in her 60s and has a neurodegenerative disease, which means she can’t stand alone, so I’m on hand to help her out of her wheelchair to use the toilet.

Her condition is getting worse — she has increasingly limited mobility and is sitting for longer and longer, which can lead to pressure sores. She’s now had them for a week and we’re still waiting for district nurses to come to assess them.

She needs to have them dressed by nurses as carers can’t do medical care, only personal care.

We are leaving messages at the surgery but no one has got back to us.

I come across this a lot, people who fall through the cracks. GPs don’t seem to be coming out for patient visits at all — at first they said it was because of the coronavirus, but carers are still going into people’s homes.

It’s frustrating when you hear a GP on the phone asking an Alzheimer’s patient how they are and them saying they’re fine, when you can see by looking at them that they are in pain. Some patients — particularly those with dementia — need to be seen in person.

I’ve been in the position where I’ve had to call 999 for an ambulance when a GP home visit could have sorted the problems. This is often the case with urinary tract infections (UTIs), which can lead to confusion in older people.

There’s just no one else to call, we hardly ever see anyone from social services.

Sometimes the ambulance will take two hours to come out for a UTI case, and then we have to phone the office to arrange appointment cover so we can wait with them.

I might have to call an ambulance about three times a month, and in all cases the call out might have been avoided if I could have got a GP out to see them.

6.30pm: Day centres all gone

I walk into Carol’s house and say: ‘Hello trouble.’ She laughs. She is in her 90s with Alzheimer’s and has gone downhill in the past 12 months with all the lockdowns.

Like a lot of people I visit, she hasn’t been outside since last year — a whole 14 months. Before that she went to church or to the shops or saw her friends.

Being on her own so much has made her dementia worse because she has had less social contact.

One of her children lives overseas and another lives a few hundred miles away, but still comes to see her once a week. Families don’t seem to live so close these days which makes people more reliant on carers and it is lonely for them. Sometimes I set up a Skype or Facetime call for clients as it helps them stay connected with relatives who live far away.

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