Tag: carer’s week

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Spreading the word about Carers

The following blog is by Sara Challice, award-winning author of ‘Who Cares? – How to care for yourself whilst caring for a loved one.’

Have you heard of Health and Wellbeing boards? No, I hadn’t either, until I was asked to be on one a few years ago to represent carers within my borough of Richmond.

There are 153 Health and Wellbeing boards across the country, and their purpose is to establish collaborative decision making, planning and commissioning across councils and the NHS, informed by the views of patients, people who use services and other partners.

At present, I believe I am the only one on one of these boards, but we need a Carer Representative on every board – to ensure carers are represented across the UK, and are considered and supported within the various upcoming papers and proposals. Because if there is a paper on residents living with long-term health conditions, you can guarantee there will be a carer behind the scenes supporting them – but carers can often still be overlooked.

Please do get in touch with your local council and ask your Health and Wellbeing board if they have a Carer Representative.

Supporting Working Carers

Did you know 600 working carers quit every day due to the insufficient support? And inadequate support for working carers costs UK businesses £8.2bn every year.

But there is a better way.

Businesses Virgin Media O2 and Sainsburys recognise carers in their workplace need support, and I give online sessions supporting staff caring for loved ones. Often given during lunchtime hours, these invaluable sessions allow space for carers to learn self care tips, insight and psychology to help them become more resilient and regain balance, whilst juggling work with caring. These sessions can also include their line manager, so there is a learned experience for all, creating a supportive collaboration within the workplace, allowing for better communication.

Sharing Learned Experiences

Have you heard of Caregivers Burnout, the Helper’s High or Compassion Fatigue?

This invaluable insight, and much more, is shared in my sessions to support those caring for loved ones. Whilst engaging carers, I share stories and tips to help improve their health and wellbeing, and each session focusses on a particular topic, helping them gain clarity on all that is happening to and around them, whilst they take back control and find ways to enjoy their lives again – guilt free.

Of recent, carers have been asking for a session on, ‘Preparing for life after caring,’ because often, we just never know when our caring role may suddenly come to an end.

What can carers expect, and what steps can they put in place now to safeguard their own needs for when this big life event occurs? In this particular session, I share my own experience during my transitions once my caring role had come to an end, and I share insight and strategies to help carers with their transition, creating resilience whilst boosting their own health & wellbeing.

“I so could have done with this information. It would have made life so much easier!” – says Sara

Finally, Sara is giving a keynote speech in London for Carers First, a charity supporting carers over a number of counties. In sharing insight and knowledge, the event brings together trustees, staff and volunteers to collaborate, celebrate and plan for the future.

“Sara has delivered many online sessions for Carers UK, and we were delighted when she ran a series of Wisdom to Empower sessions for us, which were some of our highest attended online meet ups of the year.  The sessions were highly valued by the carers, providing them with vital support during one of the most challenging times of their lives. Sara shared lots of tips and insight to help them gain the clarity to make positive changes in their lives and maintain wellbeing – not only for themselves, but for those they care for.” – Michael Shann, Head of Membership and Volunteering, Carers UK

Read the first chapter of ‘Who Cares?’ for free here and to get in touch with Sara to learn more about her engaging sessions for carers, please email sara@whocares4carers.com, or to learn more of her expert information, advice and support, transforming the lives of carers, go to www.whocares4carers.com

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Carers Week 2022

Carers Week is an annual campaign to raise awareness of caring, highlight the challenges unpaid carers face and recognise the contributions carers make to families and communities throughout the UK.
It also helps people who don’t think of themselves as having caring responsibilities to identify as carers and access much-needed support.
This Carers Week, Mary Jordan, author of ‘The Essential Carer’s Guide to Dementia’, details what being a carer to those with dementia means, and how people can lend them more support in their role.

Was there ever a more difficult time to be a carer? Especially a carer of someone with dementia.

Dementia is a very difficult condition to deal with. It is unpredictable. It is not an illness that has a set ‘pattern’, nor despite many texts to the contrary are there set ‘stages’ that the person with dementia goes through as their illness progresses.

The things that can help

A few things are known to be helpful: social stimulation, connections with close friends and relatives, access to good medical attention and support and advice, timely intervention when ‘crisis’ (such as falls, urinary tract infections, or accidents) occur.
All these have been denied to carers over the past two years.

How things changed.

A face to face meeting with the GP has become almost unknown. Appointments with a specialist are fraught with complications. Support services are discontinued. Outside visitors are not allowed during hospital stays. Friends cannot visit. Family members are denied access to residential care homes. Rehabilitation services are not functioning.

What carers are telling me

Rather surprisingly (to my mind) most carers are fairly accepting of the lack of face-to-face contact with GPs. After an initial period, most of them seem to have got to grips with technology enough to manage telephone, or remote contact via internet consultations. The biggest difficulty seems to be with access to ancillary services such as physiotherapy, rehabilitation, falls clinics, speech and language therapy and sight and hearing services. These cannot be delivered remotely and the ‘backlog’ after lockdown seems to have led to long waiting times for appointments and treatment.

Support Services in the community

Many carers rely on social support such as dementia cafes, memory clinics, ‘Singing for the mind’, seated exercise classes, Cognitive Stimulation Therapy, carers support groups. All these services were forced to close during the severe ‘lockdown’ period but it is noticeable that as soon as it was permitted and reasonably possible most of these services re-opened. Sometimes there were restrictions or extra guidelines, but the community and voluntary sector made efforts to provide these vitally needed services.

A wide variation in provision

Once government guidelines were relaxed it might have been expected that access to health services would be quickly brought back to pre-pandemic normality. But there seems to have been a wide variation in maintenance of restrictions and this has created problems for carers. One chain of ophthalmologists still insists on full PPE for staff, face coverings for customers and queuing outside the premises whilst another invites walk-in appointments. Some dentists still (strangely) insist on face coverings for patients whilst others follow government guidelines that these are no longer necessary.  Some physiotherapists and chiropractors do not allow anyone to wait on the premises, others have opened their waiting rooms.

Difficulties for people with dementia

Many people with dementia find difficulties in following social procedures such as standing in a queue, waiting in turn, facing a doctor or health practitioner alone (without the reassuring presence of a carer) wearing a face covering, or following a one-way system.  Whilst these procedures may have been necessary when the pandemic was at its height more thought needs to be given and action taken to end unnecessary restrictions now.
Often health and social care businesses are forced to continue to press unnatural restrictions on customers and clients due to the pressures exerted by those providing Professional Indemnity Insurance. This is wrong. If the Government has indicated that the situation has eased, then this should be definitive.
Life is hard enough for those caring for someone with dementia.  Does society need to make it even harder?

For more information about Mary Jordan’s book, ‘The Essential Carer’s Guide to Dementia’ or to read the first chapter free, click here.

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Why Volunteer?

With both Volunteers Week and Carers Week this month, it is an important time to think about what we can do for others. Author of ‘Who Cares?’ and winner of The People’s Book Prize 2020/21 Best Achievement Award, Sara Challice, explains how you can offer help to others through volunteering and why it is important to get involved.

I think we are all aware of the countless volunteers who have rallied round to help during this last year’s pandemic. In giving just a little bit of time, we can make a huge difference for many.

I discovered our local charities and the great work they do, after my husband became disabled from a brain tumour. Although he was given six weeks of physiotherapy from our hospital once he came home, this service was stopped soon after and his file was closed. I was then left attempting to pick up a man twice my size from the floor as he continued to have falls and deteriorated further.

During this time, I was told of a charity called INS (Integrated Neurological Services). I had never heard of them – why would I? They were in our local area, and offered one-to-one physiotherapy plus more, and I would also receive support as a carer. We immediately registered with the charity and met a wonderful group of people, who helped support us both during our challenging times.

Had I not become involved with this charity and and the the great work they do, I wouldn’t have known about the difference they were making in others’ lives. I became a trustee for them and discovered that there were times they were financially hand-to-mouth. You would naturally presume these charities would just be there for us forever, as and when we may need them, but that’s just not the case.

Many who have been diagnosed with a neurological condition and those caring for them, are often isolated, left struggling at home – and you don’t need to be old! Any of us may suddenly need this vital support.

Charities and the voluntary sector help to connect and support within our communities – empowering and ensuring a better quality of life for many, even keeping them at bay from hospital.

But what do you, as a volunteer, receive from your altruistic actions?

If you offer to volunteer, it doesn’t have to take up much of your time. You can make a real difference in others’ lives – more than you even realise! You will most definitely gain knowledge and meet some wonderful and inspiring people. Plus, in being kind and offering to help, is actually beneficial for you. There is a term known as the ‘Helpers High’ – as you give to others, this distracts you from your own problems, releasing endorphins making you feel good. Helping others gives you a sense of purpose, boosting your serotonin levels which lowers stress and improves your mood.

And in offering to volunteer, this can create a positive ripple effect, inspiring those around you. I have certainly had friends and family who have become involved with the various charities I have supported over the years.

So if you’ve been thinking of offering a bit of time to help others, why not get in touch with either your local or national charities, for a cause that may be close to your heart. You never know, you may learn new skills, gain new insight and meet some wonderful people as I have.

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Caring for the carer

Being a carer is very stressful and very tiring. It can also be very fulfilling and many of us are glad to be ‘giving something back’, especially if it is to a parent who once cared for us. But there is no denying that it can sometimes feel as though we are labouring under an intolerable burden.

In an ideal world, as our relatives or close friends grow steadily more frail, plans would be made for the future, money saved for contingencies, moves made to more manageable accommodation, and help enlisted in advance. In the real world, people fall ill suddenly, accidents happen and the role of carer is suddenly ours without planning or forethought. If at all possible, time should be made after the initial ‘emergency’ to take a step back, draw breath and consider a ‘care plan’. It is very worthwhile at this stage to get the whole family together and agree co-operation with everyone involved.

Care together and cooperate

Lack of communication and co-operation may turn out to be the biggest underlying problem. Group meetings early on will help avoid resentment or guilt developing. Make use of personal strengths here. For example, someone who is not good at practical personal care may instead be able to manage the financial affairs. Someone who enjoys cooking may agree to keep the freezer stocked with ready meals whilst someone who is only free once a week might organise the shopping.

What if you are the only family member? You should not try to take on everything alone. There may well be neighbours or friends of your relative who will help in the same way that family do. Otherwise you will have to turn to professional help. There is no need to feel guilt over this.

Do not neglect to ask for help from the person you care for’s friends and neighbours if you need it. A neighbour will often promise to ‘keep an eye on things’ but it would be much more useful if you asked them to do something specific – say, ‘Can you call round each morning just to check all is well?’ Of course, people may sometimes be unable to help, but unless and until you ask you will never know. Also investigate local clubs and organisations to which the person you care for belongs. For example, their local church, The British Legion, ex-servicemen and women’s organisations, local branches of organisations set up to benefit ex-members of professions or trades. Local and national charities can also be sources of help.

Care for yourself and get the support you need as a carer

Caring for a member of the family is an unpaid ‘occupation’ but you or the person you care for may be able to claim certain grants and allowances and if you are entitled to them you should certainly claim them. You may not realise that, if you are a carer, you can ask the local authority for an assessment of your own needs. The kind of help and support you can get as a carer includes: respite care to give you a break if you are caring constantly for your relative; emotional support from other carers, usually through a local support group; help with caring; and help with household tasks and activities for the person you care for.

As a carer, it is very important that you look after your own physical and mental health. You should never neglect your own health issues because if you are ill the person you are caring for will suffer as well since you will be unable to give the level of care you would wish to. You should take care of yourself physically by eating properly and taking exercise, but you should also build in some sensible respite. For example, pay for a professional carer once or twice a week. A friend, neighbour or other family member could do this, or even some local charities may provide this service.

There are several organisations aimed at supporting carers. Some of these offer information, some offer practical support and some offer ‘moral support’ in the form of local support groups where carers can meet to talk about their problems or concerns with people who are in a similar situation to them. Many support organisations have carers’ support chatrooms and forums accessed via their website and you may find this kind of ‘virtual’ support most helpful.

Make use of all the resources you can to help you and the person you care for. Read books, check magazine articles, ask at the library, search the internet. Buy or arrange provision of any equipment that will make life easier. Above all, ask what is available. Especially ask your district nursing team. They have access to a lot of information and contacts.

It can be difficult, but try not to allow yourself to feel constantly guilty. Those who we care for do not always show their appreciation, and indeed in some cases, they may be unable to do so. Try always to assure yourself that you are doing the best you can.

At this point it occurs to many carers to think about their own future. It is a very good time to make plans whilst you are caring for another because the difficulties and limitations of frail old age will be clearly before you (as well, perhaps, as the compensations). So, this could be an ideal time to think about your pension and will. You can feel secure in that you have made all the plans you possibly can.

Share this blog for Carer’s Week next week (6-12 June) and help highlight the challenges carers face and recognise the contribution they make to families and communities throughout the UK.

Read more advice and guidance for carer’s from Mary Jordan’s book The Essential Carer’s Guide out now as ebook and paperback.