Reviewed by Dr Sarah Gunn
Some people assisting or looking after their elder parents might not consider themselves to be a ‘carer’, or feel the term really represents them and their role.
But if your elder parent relies on you to go shopping for them, drive them around, cook for them on a regular basis or fix things in their home to make them safer, you are, by definition, a carer. You may even do much more than this if your parent has complex care needs, including looking after their financial affairs or accompanying them to medical appointments.
No matter how much you love them, or how rewarding it can be at times, caring for an elderly parent can be physically and emotionally exhausting and can seriously impact on your health and personal life. If you’re also working, no matter whether it’s full or part-time, or trying to raise your own children – or both – the impact is multiplied. Not to mention that many family caregivers use their personal savings to weather financial hardships, and reduce their work hours because of care giving responsibilities.
Without a strong advisory and support system, and knowing how to seek and accept help when you need it, you could quickly find yourself under enormous strain and headed for something called ‘carer burnout’.
What is carer burnout?
Carer burnout, also called caregiver stress and caregiver syndrome, is a state of severe physical, emotional, and mental exhaustion that can occur when someone dedicates all their time and energy to caring for someone else, at the expense of their own health and needs. This can be a real risk if you’re supporting someone with Alzheimer’s or another form of dementia, because of the complex challenges and stresses that these conditions can bring with them.
Burnout amongst carers is very common, and happens when people experience prolonged periods of excessive stress with little or no respite. This chronic stress can lead to feelings of anger, tension, anxiety and depression, alongside physical repercussions including sleep disturbance, headaches, fatigue, and low immunity. If left unresolved, it can be harmful for both the carer and the person they’re caring for, and can have serious long-term health consequences. There is a reason that healthcare professionals may refer to “putting on your own oxygen mask first” – you can’t help anyone else if you can’t breathe yourself, and the same applies to your mental health and being able to support others.
A strong support system is vital to avoid burnout
When you’re caring for a parent or elder relative long term, it’s vital that you prioritise looking after yourself as much as looking after your parent to avoid burnout. If you don’t and you are taken ill, then you may not be able to continue caring and could place both you and your parent at risk.
In order to keep your stress levels down and create space for yourself, you need a network of people and resources you can rely on to support you when you need help or a break. A strong support system is a comprehensive one, covering practical, emotional, financial and medical support.
If you haven’t already got a strong support system in place, while it may seem like just something else you need to do, don’t keep putting it off. You may feel that you don’t currently need support (and you may not). But you may do at some time in the future, so now is the time to start thinking about resources you can draw on, to help yourself and your mental wellbeing. That way you’ll know exactly who to turn to if and when you need help.
Your health, your family and your elderly parent will thank you in the long run.
How to build your comprehensive support system
You don’t need to overload yourself by trying to do it all at once. Try to build your support system one step at a time, or you might end up raising your stress levels even further rather than finding the solution to lower them! Here are some steps to help you put a robust system in place.
1. Notify your employer
It can be extremely difficult to balance work and caring for an elderly parent.
If you are employed, the first thing you should do is inform your employer (or the company’s HR department) that you are caring for your parent and what the situation is. It will hopefully make them more sympathetic toward you should you need to take carer’s leave in an emergency (which you are within your rights to do).
It’s also worth mentioning that companies are increasingly starting to incorporate benefits and programmes that support their employees with eldercare duties. And so they should, as it’s estimated that by 2024, more employees will have an elderly person dependent on them than a child. So you may be lucky and find that your company has something in your benefits package that can help you. It’s always worth asking.
Depending on what job you do, you can also ask your employer if you can change your working hours to make them more suitable to your caring responsibilities. While they don’t have to say yes, your employer may consider letting you work flexible hours for a determined period, allow you to go part time, do a job share, or even work from home if it’s a viable option for you.
2. Tell your GP you are a carer
All GP practices have a carers’ register, which lists all patients registered with the practice who are providing unpaid care to someone with a long-term health condition. By registering as a carer, your GP can provide you with additional support. What this looks like varies from practice to practice but can include signposting to services that could help you, free annual health checks, mental health check-ins and greater flexibility in terms of finding you appointments.
Speak to the receptionist or practice manager to request a registration form.
3. Contact your parent’s local council
Contact your parent’s local council social services department and request a carer’s assessment (note – this is not the same as a needs assessment, which is something you might get for your parent). Assessments take around an hour and are usually done face to face, but some councils do it over the phone or online. If you qualify for help then the social services department will create a care plan for you detailing what help they will give you. That help can include anything from free gym memberships to providing a trained, stand-in carer so you can take a break.
4. Build a team of practical assistants
Build a list of people you can turn to when you need practical help, such as help with household chores, managing finances, taking the dog for a walk, or filling out complicated forms. These could be people you know (friends, family, neighbours) who could do it for free (or the price of a coffee), or professional people you hire on a regular or ad hoc basis.
Of course, asking for free help from friends and family can be awkward and is easier said than done… But if they offer to help, don’t be afraid to accept and be specific about what you need. Make sure to think about what exactly you need. It might be emotional support, or practical help with jobs around the house, or advice from someone who has coped with a similar situation before. Knowing what you’re asking for makes it easy to be clear and specific with a potential helper.
In terms of professional assistance, you would be amazed at what’s out there. Did you know you can hire decluttering and organization experts who can come and help you declutter and organise your parent’s home? Or that there are consultants like Grey Matters Consultancy who will fill out complex government forms for you to ensure you get the help you or your parent are entitled to? Or course, these services don’t come for free but if this is an option for you, then they can be well worth the investment and remove some of the pressure on you.
5. Seek financial support
Being a caregiver can put a strain not just on your physical and mental health, but on your finances too – particularly if you have had to reduce your working hours or quit your job entirely to care for your parent.
Asking for financial help is one of the hardest things to do, but it’s not something you should be embarrassed about.
If you are your parent’s primary carer and have family or siblings with financial means who are not supporting your parent’s care with their help, money or time, then this could be a place to start. That said, relationships with siblings can be strained and discussions of this kind are extremely difficult and sensitive. It’s an option to consider carefully in the context of your own family, but may well be worth exploring.
If that isn’t a viable option for you, then you could consider getting a financial (means) assessment from the local council (which would be carried out after you’ve had a carer’s assessment). You will be eligible for help if you have savings of less than £23,250. This financial assessment is completely separate to any that your parent may have had.
Don’t forget that if you’re caring for your parent, they may also be eligible for Attendance Allowance, which is a non-means tested benefit for elder people who need support to live independently. If you’re parent is eligible for the higher rate, this means they could receive around £440 a month towards the cost of help that could support you with their care.
6. Create a care binder
It takes some time to put together, but it’s always a good idea to prepare a comprehensive care binder that includes all of the information someone might need to care for your parent. This includes important contacts, a daily task list, medications list, appointment log etc. It will make it much easier and less worrying for you to hand over to anyone who is standing in for you, that isn’t overly familiar with your parent or their needs. In the worst-case scenario, it will be vital information for whoever takes over from you should you be taken ill and are unable to continue caring.
7. Seek emotional support
Unless you are, or have been, a carer for an elderly parent, then it’s hard to comprehend the emotional distress that can come with these responsibilities – however much we love someone, it is a hard role to take on. As well as talking openly about your feelings and difficulties with friends and family, it can be very beneficial to talk with a therapist, or others who are going through the same or similar experience.
Here are some routes you might want to explore:
In-person support groups – There are support groups for unpaid caregivers all over the UK organised by charities like Carers UK, the Alzheimer’s Society and Age UK. You can find the nearest one to you by typing in your postcode in the relevant sections on their sites.
Online forums – If there isn’t a support group near you then consider joining one of the online forums for carers run by the same charities (Carers UK, Alzheimer’s Society), or MumsNet’s Elderly Parents Forum. On the forums you’ll be able to connect with others who fully understand what you’re going through and may even be able to offer solutions to some of the problems you’re experiencing.
1-1 Counselling – If you prefer to speak privately with a trained therapist, but are tight on budget and can’t get out the house easily, then you might want to look into speaking with an online therapist via a service like BetterHelp. If you have the means, you can also find a local therapist to suit your needs using the therapist directory on the British Association for Counselling and Psychotherapy website, the Counselling Directory (which only carries verified professionals) or by using a matching service like this one.
8. Establish a respite team
A respite team is a basically a person or team of people who can take over your caring duties so you can have a break. This could be simply sitting with your parent for an afternoon so you can pop out to run errands, or taking care of them for an extended period so you can have a proper holiday.
Ideally this would be a team of responsible, loving family members or friends who you can trust and wouldn’t charge for the service, but that’s unfortunately not always an option.
If you qualify for support following a carers assessment, your local social services team should be able to support you with this. Alternatively, you can contact your parent’s local Age UK who offer two main types of respite services – sitting services and respite centres where elderly people can go on a weekly or daily basis. There is likely to be a charge to use these services.
Alternatively, you can look at respite options using a local care provider or introductory care agency. Further information on organising respite can be found here.
Making the most of your support system
All of the above are avenues to explore. They won’t necessarily all be right for you, but hopefully you can use some of these options to identify some resources that will help you. Once you have a support system in place, be sure to use that extra help and space to take care of yourself and do things you enjoy that lower your stress levels.
Socialise – It’s vital to maintain some kind of social life and spend time nurturing connections with friends, doing whatever it is you normally like to do. Everyone enjoys doing different things, so it’s up to you to decide what you’d like to do.
Exercise – Exercise is proven to help relieve stress and anxiety so make sure you get a regular workout. Whether it’s a simple walk in the park, a jog around the block, a swim in the local pool or a pilates class, it’ll be worth it.
Relax – Treat yourself to a massage or a spa day, engage in a hobby you love, meditate, or simply unwind with a good book or a soothing bath. Prioritizing relaxation is essential for recharging your energy and reducing caregiver stress.
Get out into nature – There is growing evidence to show that spending time outdoors is in itself helpful for mental wellbeing, so even if active exercise feels like a step too far, just spending time in a green space can give you a lift. You could take a nature walk, go for a hike, or simply sit in a park to reconnect with the outdoors and refresh your mind. It’s been shown that spending just 20 minutes connecting with nature can help lower stress hormone levels.
One of the hardest hurdles to overcome for many caregivers is asking for help – people often feel ashamed or as if people will judge them for not being able to cope, but there is nothing to be ashamed of. Reaching out for help is something you must do if you want to avoid suffering from caregiver’s burnout. Having a good support system in place makes asking for help a lot easier, as you’ll already know exactly who or where to turn to for help when you need it. And once you have your system in place, make sure you use your time off wisely and get the rest and recuperation you need to continue caring without compromising your own health and relationships.
- What is carer burnout?
Carer burnout is a state of severe physical, emotional, and mental exhaustion that can occur when someone dedicates all their time and energy to caring for someone else, at the expense of their own health and needs.
- What are signs of carer burnout?
Common signs of carer burnout are fatigue, anxiety, frustration and depression. We don’t always recognise when it’s happened, often because we’re so busy just trying to cope with daily life that we don’t realise how difficult things have got. Once we do realise, it’s time to reach out for help.
- What financial support options are available for carers?
The financial support options available to carers in the UK depends on personal circumstances. To find out what you are entitled to, you need to approach your local council for a carer’s assessment. Organisations like the Citizen’s Advice Bureau can really help you find your way around these processes.
- How can employers provide support to carers?
Employers can provide support to carers by offering different working hours or paid carer’s leave when there’s an emergency, or providing employee eldercare benefit packages. It’s always worth asking what can be done to support you.