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.

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.

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.

Apart from an Age UK volunteer who comes once a week with her shopping, almost all the support Carol has is from carers.

A few years ago, people like Carol might have got a place at a day centre, but they are all gone now — there doesn’t seem to be any help like that available these days, whether it’s due to the pandemic or council cutbacks I don’t know.

I give Carol her medication and check she has eaten her tea, then sit and chat and watch a murder mystery with her on TV.

The 30 minutes are all too brief, though, and I’ve got to go again. I feel guilty.

7.30pm: Put to bed as no help later

It’s a half-an-hour drive to Norris’s house. Also in his 90s, he is in a wheelchair. I’ve come to give him his medication and help him get ready for — and into — bed.

He lives alone as his wife has been in a care home for two years. They’ve been together since they were 18 and he misses her a lot.

During lockdown he wasn’t able to see her at all, and even now he has only 30 minutes with her every two weeks. He’s gone downhill I think, as a result.

I really want to stay longer with Norris — he is so lonely and doesn’t have any children. He gets sad when I put him to bed as it’s still so early. 

He has no TV in his bedroom so has to go to sleep, and he knows he won’t see anyone until the next carer comes at 7.15am.

Norris has five visits a day, the four usual ones plus a ‘sitting call’, where someone sits with him between 11am and 3pm. He tells me he is paying £4,000 a month for this package — I don’t know what will happen when his money runs out. 

At the moment it’s keeping him independent — he says he doesn’t want to go into a home.

8pm: Home from hospital too early

I’m feeling pretty shattered now, but still have three visits to make. There is no time for a meal break, so I eat a chocolate bar and sip some water to keep me going.

Next I go to Cyril, who is in his 90s and has just come out of hospital. He’s struggling to stand and walk because he is so breathless.

His wife, also in her 90s, tried calling the district nurse who is caring for his leg ulcers for help with his breathing, but she said she could only care for the ulcers and refused to come.

I help him to bed with the aid of another carer. It takes 30 minutes because Cyril has to keep stopping to get his breath back. I wonder if he has been discharged too early and how his wife will cope.

8.30pm: Locked in house for security

When I arrive at Ted’s, another Alzheimer’s patient in his 90s living alone, he doesn’t recognise me, even though I’ve been caring for him for years. He looks scared and asks me who I am and what I am doing in his house.

I reassure him, help him upstairs and get him into bed, locking him in the house for his own security.

I’m constantly shocked that so many vulnerable patients like Ted are just left like this. If he had cancer, he’d have Marie Curie or Macmillan nurses coming by many times a day — but Alzheimer’s patients get very little.

Luckily, Ted is in our safe hands. But the worst part of the job is leaving people who clearly need more help.

9pm: What patients need is company

My final call is to Maureen, a lady in her 90s, again with Alzheimer’s. She just needs help getting ready for bed — but has had three other carers in the day, too.

I leave her with some water and snacks, as she talks about when she was young. A lot of what dementia patients need is company and someone to talk to.

On the drive home I try to switch off. I love my job and wouldn’t do anything else, but it’s a lot of responsibility for £9.10 an hour and there are bad days when I wonder why I do it, especially when the clients are sick and it’s difficult to get medical help. I tell myself I’ll see them all again soon.

Once I arrived to find a client, dead. That was so upsetting. No one should have to die alone.

Names and details of clients have been changed.

You can help put pressure on the Government over social care by signing the Alzheimer’s Society petition at:

action.alzheimers.org.uk/DailyMail 

Shameful situation that smacks of ageism

By Kate Lee, Chief Executive of the Alzheimer’s Society 

For many carers across the UK, the pandemic has proved a breaking point. Already physically drained, emotionally spent and financially devastated by the ongoing challenge of looking after loved ones — many with dementia — lockdown has been the final straw.

The interrupted routines and social isolation we’ve seen as a result of lockdown are toxic to symptom progression. But the pandemic has also left more people than ever fighting for scarce dementia care.

Most of the 850,000 people in the UK with dementia largely rely on social care rather than the NHS for their daily needs. Many live alone and it terrifies me when I consider how vulnerable many of them are.

Our social care system is on life support. A disgraceful situation which, despite pledges by Boris Johnson, shows no sign of resolution.

On his very first day in office he promised he would ‘fix’ the crisis ‘once and for all’, with a clear plan ‘to give every older person the dignity and security they deserve’.

Square such a pledge with the nine words in last week’s Queen’s Speech — that ‘proposals on social care reform will be brought forward’.

I’m incandescent at the omission — and imagine many readers are, too.

This crisis is not just about money. The Government needs to fund quality care if Boris is to ‘fix’ it. If a carer has only a rushed 15 minutes to wash and dress their charge — especially if there are communication difficulties — then how are they to spot if the person is, say, acting strangely because of a urinary infection, for instance?

Untreated, it could cause serious problems. But it’s resolvable with a quick call to the GP for antibiotics.

Yet our heroic carers — underpaid, lacking in dementia-specific training and undervalued for the vital work they do — simply don’t have guidance.

One gentleman told me recently he saw 30 different carers in one week. There is no continuity because we have a haphazard, badly structured system. Meanwhile, lack of the right support leads to emergency admissions and more pressure on the NHS.

I know what good social care looks like. My 81-year-old mum, Barbara, has advanced dementia. Yet I know that in a residential home on the west coast of Scotland, she’s receiving the very best support.

She moved there two years ago, initially to give my devoted, but exhausted, dad, Richard, who’s 80, some respite. But after much agonising we, as a family, realised it was better if it became a permanent move.

We’ve been among the lucky ones; the packages are more generous in Scotland but my dad is still having to use up meagre savings for her care.

I recognise that it’s difficult for No 10 and the Treasury to thrash out a plan to resolve the complex problem of how to provide quality care and fund it.

But I worry there’s less political will to make changes because of ageism.

Dementia is a disease of the brain yet the Government doesn’t give the money for research for new treatments.

How different it was when I was CEO of children’s cancer charity CLIC Sargent. There I successfully lobbied the Government to fund the funerals of children under the age of 18.

The time for fudging is over. Social care should be free at the point of use — and the Government needs a roadmap and timetable to make this happen.

Currently, people are spending their final years without the support and care we, as a developed country, should be able to provide. We cannot fail them.

Interview: Angela Epstein