January 11, 2023

When is it time to consider formal care for a loved one?

Who are informal carers?

There are many people caring for partners, children, or friends, from popping in for a coffee and chat to full-on help with personal care, i.e., such as washing and dressing. These tasks can be carried out for weeks, months or years without question when the level of support works for both parties. These people carrying out the tasks are often known as ‘informal carers’ and may live in the same household, or be checking in on their loved ones to give the support they feel appropriate at the time. By informal carer, we mean unpaid.

The term ‘carer’ can often be used interchangeably by many people using services. For the purpose of this blog, we refer to the carer as an unpaid worker.

Other key facts about informal carers are detailed by carers.org.uk are as follows:-

According to the 2011 census, an estimated 6.5 million informal carers in the UK were providing unpaid care (Census 2011), saving the government approximately £530 million per day and £193 billion per year during the pandemic (Carers UK, Unseen and Undervalued, 2020)
A 2022 research report by Carers UK (Carers Week 2022) suggests this has now risen to 10.6 million (Carers UK, Carers Week 2022 research report). Therefore this means that 1 in 5 adults in the UK are currently providing care.
An additional 4.3 million people became unpaid carers every year amounting to – 12,000 people a day (Petrillo and Bennett, 2022).
More than half of all unpaid carers (58% ) are women (Census 2011).
One in seven carers in the UK are juggling work and care (Carers UK, Juggling Work and Care, 2019).
Between 2010-2020, people aged 46-65 were the largest age group to become unpaid carers. 41% of people who became unpaid carers were in this age group (Petrillo and Bennett, 2022)

When to turn to formal support

Informal care can go on for days, weeks, months or even years, but when is it time to intervene and ask for more formal support? Formal support is when a paid care workers is introduced so that the informal carer can take a break themselves, or step back completely.

This often occurs when the support the carer can give is no longer sufficient to met the needs of the cared-for person. Examples are as follows:-

The carer is unwell themselves
The carer may still be working or have other commitments
The needs of the cared-for person go beyond the skills of the carer
The carer passes away

Homecare.co.uk also offer some guidance on what changes to look for in the cared-for person, you can click here to read.

How to find appropriate support

Some carers may not know where to turn at the point they require help, having no idea of what help or support is out there. Some carers may not even want formal help for fear of divulging private or financial information, or because they believe they cannot afford it.

However, assessments undertaken by your local Adult Services are free. A referral to their Helpdesk can be undertaken by anyone, not just the informal carer. They will send a social care professional to come and assess the care needs, and whether you will qualify for financial support towards the cost of care. Even if you do not qualify, this assessment can be helpful in pointing you in the right direction as to who to contact for care, and other benefits you may be able to claim.

What is our experience?

When informal carers approach Aster Care for support, they are often quite desperate, unaware of the costs of care, and generally have hit a critical point and so can feel quite stressed.

Adult Services will have given them a list of ‘preferred providers’ (i.e., a selection of providers on their list who are contracted to work with them and meet certain standards), but will not recommend individual providers. Some carers find us through this list, word of mouth, or their own searches on the website where our testimonies can be accessed.

We offer a free, no commitment assessment to discuss our services and whether they will fit with the service user and the informal carers’ needs. If we are unable to help, we will signpost the carer to the Care Quality Commission where inspection reports can be accessed (including ratings), or homecare.co.uk where service users can leave local reviews on their website of their experience of care.

If you require any further information about what we provide, please click on the following link: https://astercareltd.com/long-term-home-care-services/

Find out about how we care for people with dementia

Meet Dev and Meera

Dev and Meera met in the UK where they had travelled from Malaysia to train as nurses. They later married and had two children, working opposite shifts to look after them as they had no family to support them in the country. As the children grew, they were able to invest in residential care establishments for people with learning disabilities and ran these successfully for many years.

In 2000 when Meera was 49 years old, she was diagnosed with breast cancer and received treatment for this. She stayed well until 2015 when she collapsed and spent 42 days in a coma. This led to kidney failure which now required regular kidney dialysis three times a week on discharge.

It was at this point that Dev became an informal carer to Meera, undertaking tasks such as shopping, cooking, and laundry. Dev also employed a cleaner.

Maintaining daily life, work and activities

Dev continued to work past retirement age but his business was out of his home county which meant being over an hour away from home. Dev rearranged his working days to coincide when Meera was at the hospital having dialysis, working at home on the other days. He also created a new downstairs bedroom with an en-suite for Meera to prevent her having to go upstairs, and she could still access the kitchen to cook when she felt able to. Meera was now using a frame to mobilise and would occasionally fall. Dev arranged for Meera to have a pendant alarm which would alert him should this happen.

In the early days of Meera needing kidney dialysis, Dev went to great lengths to get appropriate health insurance so that they could still go abroad together. Dev arranged for Meera to have dialysis at the local hospital of whichever country they were in. Dev would not let Meera miss out, as traveling together was something they both enjoyed.

When temporary care was first considered; the options

In 2018, Meera was diagnosed with cancer of the kidney and was no longer well enough to travel. Dev was still managing to care for her at home by himself. However, Dev wanted to travel abroad for several weeks and knew Meera would need someone there 24 hours a day because of her falls and failing health.

Initially, Dev approached a family friend who agreed to live in for the 3 weeks he was away. Dev produced a weekly programme of all Meera’s appointments to include shopping, meal preparation, cooking, cleaning, washing and ironing, and the friend would be available overnight if needed. Going abroad was an anxious time for Dev, knowing that he would be far away if something went wrong, and so handing over the care to someone else was a big step. Fortunately, this first experience went well.

When Dev wanted to travel again, the family friend was not available. This now meant Dev had to look for temporary care again, but more formally; a live in carer from a paid agency was the next step. Dev used an organisation that provided this temporary service, and would be regulated by the Care Quality Commission with inspection reports to view.

Dev found the following benefits of using a formal organisation to include:-

All staff would be police -checked and employment references collected and reviewed
They would be trained by the agency
If the staff member went sick, the agency was duty bound to supply another

All staff would be police -checked and employment references collected and reviewed
They would be trained by the agency
If the staff member went sick, the agency was duty bound to supply another

The move to regular, formal care

In 2019, Meera began falling more and wasn’t safe to be left alone for long periods; more formal care from the local council was now to be considered. Another recent hospital admission meant that Meera had received daily carers free of charge as part of a post hospital discharge service, but this carried on with a new provider after the the free period ended.

Dev found this challenging at first; different carers coming into his home at all times of day, every day, although he accepted Meera needed this, and it took pressure off him. It also meant that Dev could continue working knowing that a trained carer would be checking in on his wife during this time. Dev would, of course, carry out any care needs required when he was home, and overnight if needed.

This care package continued until January 2020 when Meera was taken into hospital and died at the age of 68.

In summary, Dev was able to access a range of services to help support him and Meera.

This was not only to support Meera’s health needs but Dev’s working life and interests. In addition to which, Meera was supported in other countries with their health problems when they travelled, optimising their lives even during Meera’s illness. Dev hopes his account of his journey into formal care will show others the range of options that can be available to them and their loved ones.

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