Caring for a loved one can be a really rewarding and positive experience, but it can also be challenging and demanding; we’ve compiled a guide of top tips on being an unpaid carer to help you get the best of the experience for your loved one and yourself too…
Tips on being an unpaid carer: what is a carer?
A carer is anyone, including children and adults who looks after a family member, partner or friend who needs help because of their illness, frailty, disability, a mental health problem or an addiction and cannot cope without their support. The care they give is unpaid. There are around 5.4 million people in England who provide unpaid care for a friend or family member (england.nhs.uk).
One of the most important tips on being an unpaid carer is to check that the person you care for is on the benefits for which they are eligible (eg. Attendance Allowance which is not ‘means tested’). AgeUK and other Carer Support organisations will help you to do this and support filling in the forms. Simply give them a call. Benefits will help to buy in extra help so that everything is not just down to you.
As an unpaid carer you may be eligible for Carers Allowance.
Age UK offer support through a free advice line on 0800 678 1602. Lines are open 8am-7pm, 365 days a year. They also have specialist advisers at over 140 local Age UKs.
Benefits can also help to purchase equipment if it is an item that Social services is not able to supply.
Keep a diary of medical appointments/111 calls you make/ambulance call-outs/ incidents etc. (including nightimes, especially if you are applying for the higher rate of Attendance Allowance (UK)). Maybe even keep photographs of anything relevant eg. injuries from falls in case you are asked for evidence.
Outside help with care or befriending
Second in our First up in our tips on being an unpaid carer. It is good that your loved one gets used to accepting help from people other than you, so that you can take a break, and if anything was to happen to you, you are not the sole-carer.
You can pay privately through Care Agencies, use self-employed person/s, or apply for a Care Assessment through Social Services. Social Services will do a Financial Assessment and let you know the amount that the individual will pay for their care.
This is ‘means-tested’ ie. dependent upon the amount of savings, ongoing costs and outings the person has (you will be put on a waiting list so the sooner you start the process the better). If you are employing people direct, make sure you take up credentials/references/ see their DBS (Criminal Record) Certificate/check what experience and training they have etc.
Next in our list of tips on being an unpaid carer is Equipment. If you feel the person you care for needs equipment to help with mobility or activities of daily living if you live in UK you can ring your local Social Services number and request an Occupational Therapy Assessment (you will be put on a waiting list so the sooner you start the process the better).
If they feel that the person you care for is in need of certain pieces of equipment it will be provided free of charge… for example a frame around the toilet to help people get independently on and off it, commode for night-time use, aids to help people get in and out of their chair or bed. You can also discuss issues with the GP and ask them to do a referral.
Consider contacting your local Independent Living Centre or Mobility Store to ask advice and try out some adaptive equipment.
There are legal tips on being an unpaid carer too. You may want to set up a Lasting Power of Attorney so you can help your loved one to make decisions should they become unable to do so for themselves or needing you to help them. It is better to set this up whilst the person is still able to make decisions. There are 2 main versions – Health & Welfare, and Property & Financial Affairs.
You can instigate these yourself online through the Office of the Public Guardian (UK) www.gov.uk or through a solicitor. If your loved one is on certain benefits the cost will be lower. Age UK have a good document to help you through this
If the person you are caring for has set ideas on what treatment they want or don’t want in an emergency, they can make a ‘Living Will’ to formalise these wishes. In which case you both need to discuss these wishes with the GP (doctor). For example the person you care for may decide they do not want to be resuscitated.
When considering these legal tips on being an unpaid carer, you may find it very beneficial to chat together and ascertain what your wishes are for end of life and funerals etc. It is easier to do this well in advance rather than leaving it right to the very end when it could be too late to capture what the person really would like.
Some families and people might find this too difficult to do themselves, but might like an outside person to do this, or provide some guidance. If you would like some help please email [email protected] (Activities for Health Occupational Therapy).
Looking after the mental health of you and the person you care for is just as important as looking after physical health. Here are some mental health tips on being an unpaid carer.
When people encounter problems in life, especially ones that are out of our control eg. Coronavirus restrictions or decline in physical health/abilities… it is perfectly understandable that your mood, concentration, memory, sleep, appetite, motivation and energy (to name a few) could be affected due to a dip in your mental health.
Anxiety and Depression are extremely common and if you feel that you or the person you care for might be living with a mental health condition it is nothing to be ashamed of, please speak to your GP about it to access some help. It need not be medication. There are herbal remedies that might help and activities or approaches such as Mindfulness or ‘talking therapies’.
Memory problems, confusion or dementia
Next in our list of tips on being an unpaid carer is handling memory problems, confusion or dementia. There are lots of ideas for help on the Alzheimer’s Society website www.alzheimers.org.uk
Check out their website.
They have a variety of ways to gain support through the Alzheimer’s Society and lots of educational resources to help you as a carer to understand these conditions and the best ways of supporting someone to live well with these conditions. They also have information on their website on benefits and lasting power of attorney.
You can compete the ‘This is Me’ document (from the Alzheimer’s Society website, or you can request them to send you a printed copy) so that it is ready for you to share with any healthcare professionals or send with your loved one should they be admitted to hospital. This document helps the people who will be caring for your loved one in your absence to enable person-centred-care.
Alzheimer’s Society Dementia support line
0333 150 3456
There is a Dementia Therapist called Teepa Snow who you can search for on Youtube. She has a range of training videos on different topics frequently experienced by carers of people living with dementia that are well worth exploring. The clips are informative and understandable/accessible for everyone.
If you are caring for a person living with dementia, you can access carer-support/coaching; one to one sessions over video link through Tandem-Care www.tandem-care.co.uk
You can also access one to one sessions of Cognitive Stimulation Therapy for the person with dementia over video link through Tandem-Care www.tandem-care.co.uk
In some cases Social services will pay for these sessions.
Anyone can access Reminiscence Therapy Sessions through Teacup www.teacupdementiatherapy.com to compile a LifeStory Book. People do not need memory problems to engage with the service.
Not only is LifeStory work pleasurable, it results in a book to help maintain and preserve the identity of the person you care for that will act as a ‘communication passport’ to future possible carers or befrienders to enable care plans to be created around what is important to the individual.
You can help the person you care for to compile their own LifeStory Book. There are plenty of templates on the internet.
If the person you care for is exhibiting memory or other ‘thinking-type’ cognitive decline, discuss this with the GP.
Carer Support Organisations
Investigate your local Carer Support Organisations or Support Groups and how they can help you, they will have lots of tips on being an unpaid carer too. You may wish to ask them or your GP for a Carer Assessment that is all about You and your needs as opposed to the person you are caring for.
One of the essential tips on being an unpaid carer is to remember: YOU are just as important… you must be as fit, healthy and resilient as possible to be able to promote the same for your loved one. There may be a Carer Scheme that offers free parking at hospital visits, discounts at local Mobility Stores etc.
If you are computer literate you may wish to join some on-line support groups which are often extremely supportive and other carers can answer important questions that you may have… whatever your dilemma is, there will be somebody else who has faced the same and may have some excellent advice for you of things you can try. There are many facebook groups for the particular condition that your loved one has.
If your loved one is accessing any services, the professionals there may be able to put you in touch with other carers so you can support each other?
You are not alone… just reach out
Next in our list of tips on being an unpaid carer is to remember you do not need to struggle alone… even through COVID-19, there are people out there who can offer help, even if not in previous ways. You need to reach out. Speak to your GP (doctor), Age UK, Alzheimer’s Association, Social Services etc. At the moment waiting lists are long, and it takes longer than usual, so try not to leave a problem until it is at crisis point if you possibly can.
If your loved one is living at home you can ring Social Services and request an Occupational Therapy Assessment to address equipment needs, Physiotherapy to address mobility and exercise, Speech and Language Therapy to address communication, mouth and swallowing, or a Care Assessment to address setting up a Package of Care (carers coming in to help you). You can also discuss issues with the Gp and ask them to do a referral.
Hospital stay preparation
Despite everything, people sometimes need to be admitted to hospital for medical conditions. So another of our tips on being an unpaid carer is to make sure you have everything you need just in case. It is a good idea to prepare for this by packing a bag with some spare clothing, toiletries, up to date list (prescription) of medication that the person is taking. Maybe some puzzle books and a pen/magazine etc. In the event that a person is admitted to hospital, if they have a Do Not Resuscitate form or Living Will in place, the hospital will need to see the original, so you will need to pack this at the last minute.
You may want to think about packing a spare pair of reading glasses or putting a name on a label on glasses that are taken into hospital as despite best intentions things sometimes go astray. Ensure the person has hearing aids with them so they are able to respond to medical staff. You may want to put a name label on any walking aids that are taken into hospital.
At every stage make sure that the staff who are looking after your loved one are aware of any Do Not Resuscitate form or Living Will documents that you have provided and make sure that you get them back at the end of the stay. The same goes for any glasses, hearing aids or medication that you may have been asked to provide.
Despite the best of intentions it can be so easy for all the day to be eaten up with day to day living tasks and chores and no quality time together to do nice things.
Look for little windows of time in the day to engage in a lovely activity together. Engaging in activities together helps to bring about a close relationship with the person you are caring for.
Try to find activities that are meaningful and enjoyable for you both.
If you can work out an activity that the person you care for enjoys and can do alone this will allow you some time to get on with other things that need doing or take a well-earned moment for yourself.
Try to consider other activities in addition to watching Tv.
A few ideas are:
- Music can be very meaningful
- Colouring-in or art can be very relaxing and therapeutic
- Crosswords, puzzles, dot-to-dot etc can stimulate the brain cells
- Exercise eg. walking up and down like Captain Sir Tom (obviously needs to be risk-assessed to ensure the person is safe).
Or look on the Royal College of Occupational Therapy website www.rcot.co.uk
On the web-site click Living Well In Care Homes and there are loads of activity ideas. You do not need to be living in a care home to access the free resources.
If your loved one attends a day centre (once they are open again) this will give you a break from each other ; socialisation and activities for the person you care for, and a break for you or at least chance for you to get on with some of the household chores or phone calls etc.
If you or your loved one are struggling with Sensory issues eg. hearing, sight, touch etc. you can ring your local Sensory Team to get some advice, assessment and maybe try out some specialist equipment eg. telephones, magnifiers, door bells etc. for people with sensory deficits.
Consider contacting your local Independent Living Centre or Mobility Store to ask advice and try out some adaptive equipment.
Help from charities
Look up local charity and voluntary organisations… they may offer a respite or befriending service to sit with your loved one to give you a break. They may offer to buy pieces of equipment.
If the person you care for has done National Service or been employed in the Forces, the Royal British Legion (www.britishlegion.org.uk) or SSAFA (www.ssafa.org.uk) are two charities who could help you.
Depending upon occupation of you and the person you care for, there may be other charities helping people in need eg The Firefighters Charity. There are also local Freemasons, Round Table, Rotary Clubs etc that may be able to help you.
Be kind to yourself
One of easily overlooked tips on being an unpaid carer. Don’t be too hard on yourself… you are only human too. Caring for a loved one can be very demanding and emotional, especially if you are juggling care with a job, family, other commitments. If you feel like you are getting frustrated or angry, remove yourself, take deep breaths, count to 10 and try to walk back in with a fresh perspective.
Try to keep your sense of humour
Remember that everyone is human, including you. We all make mistakes and cannot be perfect all of the time.
Try to take some time out of the day for you to relax and do an activity that makes you happy.
Our 15 tips on being an unpaid carer were compiled from the personal experiences of being an unpaid carer for her father by Heather Manktelow. This is by no means an exhaustive list… Please feel free to contact us with your tips.