We Need to Talk About Caring

Aug 23, 2024

woman standing next to woman riding wheelchair — Photo by Dominik Lange on Unsplash

I’ve attempted to write this article on a number of occasions and have always given up. It’s a tough subject, even if you don’t have personal involvement. The 2024 Carers Report states that there are 10 million people in the UK who have no choice about taking unpaid caring roles. The reasons are many and complicated and people’s circumstances are very individual, but at base level, the state is not supporting carers or the people they are looking after adequately. There is no national strategy for carers and support is patchy, the gaps often filled by charities - if at all. For clarity, I am not talking about people who are in care or nursing homes, whether paid by the state or through private income, I’m talking about people who stay in their own homes, or live with relatives, and who are unable to live independently. It could be someone’s parents or it could be a partner or friend a son or daughter. People care for others, even non-family members, for a variety of reasons.

It is estimated that unpaid carers save the Government £162bn per annum, although the figure could be more. There are many more people caring, even if part-time or informally, than consider themselves carers, according to the National Statistic Office. Some people believe the state should care for the sick and elderly and some people believe that families should care for their frail, infirm and ill relatives. I’m somewhere in the middle and would never judge anyone for the decisions they make about how they care. There are many reasons why people are unable to care for their relatives, including their own health and lack of income. If you give up work to care for someone full-time you can expect to be, on average, 70% poorer. For some people this is not going to be a viable situation. If you care for someone for 35 hours per week you are entitled to a carers allowance of £81.90 per week, which is clearly not going to replace anyone’s income.

In our situation, the carer’s allowance is claimed by my Dad because he still lives with my Mum and keeps an eye on her. He microwaves her porridge for breakfast, helps her to the toilet and makes sure she gets to bed. My sister does the core caring, including personal and nursing care, meals and medical appointments, as well as providing some social,life int he firm of days out. I’m the back up, which in practice means I visit 4 - 6 times per annum to take over from my sister for a week or sometimes more. My husband and I also have my Mum up to stay twice a year for a several weeks at a time, so that my sister and Dad can have a break. We’re lucky we are not solo carers, but even so, it takes its toll on both physical and mental health and has knock on effects for everyone’s’ lives. Funnily enough, our 93 year old Father is probably in better health than either my sister or I, but he is not capable of being my Mum’s full-time carer and can become a liability if relied upon. We should not be needing to rely on a 93 year old for care support!

Many people are solo carers and struggle to get any respite care, which means they are often unable to go out and struggle to do basic tasks outside the home, like shopping, never mind having a social life. My sister has not had a holiday since 2019 and there’s not much prospect of her having one any time soon. Our Dad fell and broke his arm a few weeks ago and was hospitalised, which meant my sister moving in with our Mum and sleeping on the floor. Mum has a Dementia diagnosis and cannot be left alone. In practice, sometimes she has to be left, but we make sure she’s been to the loo beforehand and that we’re not out of the house for more than half an hour at a time. The anxiety and guilt is still massive. Mum is currently staying with us for an indefinite period whilst Dad recovers from his injury. We’ll have to see how things pan out after that.

For many full-time carers there is no prospect of ‘time off’ except when the person they are caring for dies. That’s the brutal truth. Caring full-time can be a lifelong responsibility. People care for a variety of reasons - partners may wish to look after each other when illness or disability strikes, a Mother choses to care for her husband so her daughter doesn’t have to, a sister might care for her sibling if there are no other carers - and there is every permutation you could think of. If you love and care for someone it might seem natural to care for them when they are unwell, but people are often become trapped in their situations which leads inevitably to frustration, burn out and guilt. There has to be some support for carers that is more than an embroidery class one hour a week. I’m not knocking carer support charities - they can be a vital support providing information and activities - a guaranteed oasis of calm and support for an hour once a month, once a week, or whatever, yet to benefit from that hour, other things must be in place and it is mostly down to the carer to make these arrangements.

Getting a break for a few days or a week is even more difficult and many carers never get this opportunity. Respite care is patchy and expensive if you have to pay for it. An assessment is required for both the carer and the person being cared for to determine eligibility and suitability and is never available at short notice.

The carers UK report for 2023 makes the following points about the health and mental health of carers and it’s frightening.

More than a quarter (27%) of unpaid carers have bad or very bad mental health, rising to 31% of those caring for more than 50 hours a week, or for over 10 years.
84% of carers whose mental health is bad or very bad have continuous low mood, 82% have feelings of hopelessness and 71% regularly feel tearful.
68% of carers with bad or very bad mental health are living with a sense of fear or dread.
More than three quarters of all carers (79%) feel stressed or anxious, half (49%) feel depressed, and half (50%) feel lonely.
65% of carers agreed that the increase in the cost of living was having a negative impact on their physical and/or mental health.
Despite feeling they are at breaking point, nearly three quarters (73%) of carers with bad or very bad mental health are continuing to provide care.

The way care and support is delivered to people in the community and those caring for them is clearly not working for the majority of carers. There needs to be a unified support strategy that places carers needs at least on the same par as those they are caring for. Many people are already at breaking point and with the increase in Dementia diagnoses, in particular, this can only get worse. Carers save the public purse an immense amount each year and they should be valued, and not simply for their economic benefit to society. Carers often give up their jobs, lifestyles, freedoms and sometimes even relationships, to care for relatives. They often ask for very little and they should certainly not be struggling in poverty with poor mental health, alone and unsupported.

This is a huge subject across a range of statutory and third sector disciplines. It’s not something I could possibly hope to do justice to here. Having a national strategy would require input from many people, including carers and those looked after by them. Because the task is huge, doesn’t mean to say we should avoid it. I genuinely believe it’s a discussion that we need to have and not because I’m a part-time carer myself. I’ve worked with third sector carers organisations first hand and have seen the devastating impact that full- time caring can have on families. Any one of us could be carers in the future - it’s an issue which may affect us all at some point - especially with longer lifespans.

If you have caring responsibilities, my heart goes out to you. You are seen and I know something of the heartache you face on a daily basis. If you’re not a carer, I’ve covered below what a typical sort of day might look like from my perspective. It’s important to acknowledge that everyone’s experience of caring is different and valid.

Assuming a good night’s sleep, Mum might get up anytime between 5am and 10am. We let her sleep if we can as she has heart failure and chronic illness and is very often tired. If she happens to still be asleep at 10am I will wake her as she has a medication regime which needs to be adhered to.

It’s important to say that a good night’s sleep cannot be guaranteed. Mum may get up after a bad dream, with hallucinations, if she’s had an accident or is she’s in pain. Recently my sister had to change sheets 3 times in one night due to a nosebleed and a bowel accident. Often Mum will be disorientated so she might require coaxing back to bed. Occasionally she refuses and sits in her chair!

Once Mum is up for the day her liquid pain meds are administered as she’ll be in varying degrees of pain as the bedtime set wear off during the night. She may need her gel and a hot water bottle. Another set of meds in tablet form and then she can have her breakfast half an hour later. That might be an easy task where she can feed herself, unlike this morning a painstaking effort where she struggled to remember what she was doing.

She needs pads on her eyes before they’re cleaned and then dropped. She currently has a nose cream that requires administering 4 times daily.

Getting Mum washed and dressed can take half an hour or an hour and a half. I find it impossible to get finished much before mid morning and sometimes we’re not ready by lunchtime. A note to medical staff - morning appointments can be very difficult for carers and their relatives. Washing involves dealing with any injuries such as bruises and cuts and pressures sores on her bottom. It involves changing her incontinence pads and making sure she’s dry and has moisturising cream on her fragile skin.

We have a bath lift here and she enjoys the warmth and relief that a bath can give her for a short time. It also means I get 10 minutes to myself.

Dressing is generally straightforward, although as Mum is a wheelchair user and has mobility issues we have to do things in an order to minimise the amount of time she needs to stand. Easy on/off clothes with elasticated waists are essential. Trousers are a no-no as she needs to go to the toilet frequently as she’s on water tablets. My sister has developed a nemonic for Mum in the loo WWW - wee, wipe, wash - but sometimes assistance will still be required to make sure she is clean and there’s no cross contamination.

It’s now probably close to lunchtime, so preparation for that begins and another round of meds and eye drops. We might have got Mum to the loo anywhere between 2 and 4 times by this stage.

If we’re going out, there’s lots to organise to make sure Mum has all she needs and is comfortable. If we’re not going out she has some neck muscle strengthening exercises to do and I try and give her some tasks that she can do both physically and mentally. She enjoys music, so we keep the radio on switched to and oldie channel and we try and engage her. Often she falls asleep if she’s not being occupied, which might seem a great idea as it provides and opportunity to ‘get stuff done’ but too much sleep in the afternoon can mean she has a restless night.

Nighttime has its own routine of meds, eye drops, change of pad, toileting and assisting into bed. A light kept on is essential to avoid spatial confusion.

There are probably things I’ve forgotten and I’m sure my sister will remind me, but these are the fundamentals of a day caring for my Mum.

Despite her Dementia she retains a sense of humour and can hold a conversation. Sometimes she is in pain or distressed and you then have to get into detective mode to work out what’s going on. For the most part she’s a dream to look after, but that doesn’t mean it isn’t demanding and difficult, not to mention physically and emotionally exhausting.

People deserve to have their needs met in a way that is dignified and ungrudging. They were young once and played their part and we will all, if we are lucky, grow old. There are many, many young people with disabilities and chronic conditions who require full time care and their needs require careful consideration, especially as their carers are lifetime ones. There’s a lot to consider and I hope this has put your brain into gear on the subject. If you get the opportunity to chat to carers, please remember we are people too - though we may have forgotten how to have a conversation that is about something other than our caring responsibilities!

If you are a carer and you’re not getting any support check out the various national and local third sector care organisations and they will work with you to try and improve your situation and put you in touch with people who have similar responsibilities and understand your points of pain. Don’t be alone.

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