Caring for yourself if you care for someone with post-concussion syndrome (PCS)

There are many resources available for people healing from post-concussion syndrome (PCS), including articles, blog posts and books containing advice, tips, techniques and strategies addressing various aspects of recovery. However, there are far fewer resources aimed at carers of those with PCS. In this blog post, I want to share some advice, tips and encouragement for you if you’re caring for someone with PCS.

Being a carer for somebody with this often debilitating and long-term condition is an important and valuable undertaking. Undoubtedly, it can be challenging and exhausting and, at times, it may seem like a never-ending task. Whether you’re a spouse, relative, friend, neighbour or professional, it’s really important that you make sure you look after yourself and practice self-care during the time you care for the other person. Your job is likely going to be a marathon, not a sprint, and you’ll need to find ways to build inner strength, resiliency and stamina for the task.

The demands of being a carer

A number of different demands may have been placed on you as a carer, including:

1. Physical demands: Your role may be physically demanding as it may involve tasks such as lifting, bathing or cleaning and helping around the person’s home. This can lead to physical fatigue and strain on you.
2. Emotional demands: Caring for someone with PCS can be emotionally draining as it can involve managing the emotional needs of the patient as well as managing your own emotions about the situation. This can lead to feelings of stress, anxiety or depression in both of you.
3. Mental demands: You may find yourself under increased mental pressure as you learn about the person’s condition, navigate the medical and/or legal systems, take on extra work involving things you’ve never done before and generally have to become more resourceful.
4. Social demands: Looking after someone with PCS can be time-consuming and may involve cutting back on other activities or commitments. This can lead to social isolation and a lack of support from friends and loved ones.
5. Financial demands: Caring for someone with PCS can also be financially demanding as it may, for example, involve paying for medical expenses or taking time off work.

Signs you could be overwhelmed

Some of the signs you’re overwhelmed in your caring role include:

1. Physical exhaustion: If you’re feeling physically exhausted or drained, it may be a sign that you’re taking on too much.
2. Emotional distress: If you’re feeling overwhelmed or distressed, it could be that you’re struggling to cope with the demands of caring. You might feel anxious, depressed or withdrawn.
3. Difficulty managing daily tasks: If you’re struggling to manage your own daily tasks, such as cooking, cleaning or paying bills, it may be a sign that you’re overwhelmed by the demands of caring.
4. Mental overwhelm: You may feel mentally fatigued or drained from all the new things you’re having to learn and do related to caring for the person. This is on top of increased pressure you may be feeling in other areas of your life as a result of your caring role.
5. Difficulty sleeping: This could be caused by worry or mental, emotional or physical fatigue.
6. Social isolation: If you’re feeling isolated or disconnected from others, it may be a sign that you’re not getting enough support or that you’re not taking care of your own social needs.

If you’re experiencing any of these signs, it’s important to take a step back, reflect on and assess your own needs. Learn to know your limits. Make sure to take some time out for yourself. Rearrange your life to make it more manageable and less stressful. Do ask for help from others if you need to.

How to look after yourself when you’re a carer

Here are some ways you can go about striking the balance between your caring role and looking after yourself and other dependents you may have:

• Keep going with your day-to-day life as much as possible. Go to work, keep social commitments and continue with any voluntary or similar roles as much as you’re able to. It’s important for you to maintain your life outside of your role as carer for your own wellbeing and to maintain your own identity.
• Communicate with those you work alongside and with friends and family about how things are going for you. Keep people informed of what’s happening. At work, let them know that you may need extra time off to cover medical appointments, childcare, etc. If you have to, step back from work or other commitments for a while, just let people know. Most people are accommodating and understanding. Resume things again when you’re able to.
• Make sure you’re not doing everything yourself. If you’re the partner of the person and you have children, then encourage the children to help out at home if they’re old enough to do so. They can do simple tasks such as helping with cooking, cleaning their rooms and undertaking light household tasks such as vacuuming and dusting. Accept help from others such as family, friends, neighbours and others in your community. Tasks which you could get help for include caring, cleaning, childcare, cooking, driving, accompanying the patient to medical appointments, etc.
• If you and/or the patient are in a financial position to outsource certain tasks, then do so, for example, using a taxi service, employing a cleaner or hiring a gardener. This will take some pressure off both them and you and will give you both back some valuable time.
• If you’re caring for your partner, then communicate with them about how you’re feeling. If you’re finding it tough, then say so. Be honest with them and say if a particular task or aspect of caring is too demanding or explain gently that something may have to wait if it’s appropriate to do so. As a carer, you’ll find it hard to see the person suffer and be unable to do things they previously could. If they’re struggling with the long-term effects of their concussion, then your relationship has entered new territory and a different dynamic. It’s essential that you keep the lines of communication open between you both and that you’re both as aware, sensitive and responsive as you can be to how each other is feeling. By navigating this new territory you’re in carefully, you have a better chance of being able to keep your relationship intact and adapting to and weathering your new circumstances. The person will, of course, be grateful for all that you do for them.
• Make sure you speak to and see friends and family members. It’s important you maintain a social life. When people ask, let them know how things are going. If people are understanding and sympathetic, then share with them any burdens you have. As the saying goes, ‘A problem shared is a problem halved’.
• Look after your health. Focus on the foundations of good health for yourself which means, at the very least, eating healthily, staying hydrated and getting enough sleep.
• Take breaks and engage in activities that bring you joy and help you to relax. Make time for your favourite pastimes. This might involve spending time with friends, participating in hobbies, taking part in a sport, spending time outdoors in nature or generally taking a break from caring responsibilities. Ensure you have enough leisure and relaxation time for yourself.
• If you need to take some time away or to have a holiday, then do, whether it’s with the person you care for or apart from them. Sometimes you need more than just a few hours break. Sometimes a weekend, long weekend or longer are necessary in order to rest, recharge and reset. If you can afford it, then a holiday will do you the world of good.
• If you have children who are involved in caring for a parent with PCS or know of children who are in that position, then they may need support in managing their schoolwork and other responsibilities and commitments. Encourage them to be open about how things are going for them and explain to them that it would be useful to communicate with school staff about their situation and to discuss any accommodations that may be needed.

Seek extra support if necessary

If the caring burden becomes overwhelming, then remember that there’s always external support available to help you. Some of these sources of support are mentioned above. Below are some further suggestions on how to tap into a wider support network.

1. Find out information on websites of carer charities: These include The Carers Trust (www.carers.org) and Carers UK (www.carersuk.org). Also, the Citizen’s Advice Bureau have advice for carers on their website: www.citizensadvice.org.uk/family/looking-after-people/carers-help-and-support
2. Connect with others in a similar situation: Find a support group for carers of those with PCS. This could be through your local brain injury charity, such as your local branch of Headway. Or it could be via an online support group such as those on Facebook. This can provide a sense of community and a chance to share experiences and receive support from others who understand the challenges of caring. You will probably also discover that there are other carers of people with all sorts of issues in your neighbourhood or local community. There may be local meetups where you can seek support, guidance and moral support. Do a bit of enquiring locally.
3. Seek professional support: You may find it helpful to seek support from a mental health professional, such as a therapist or counsellor, especially if you’re feeling depressed, anxious or are finding it too much. They can help you manage your emotions and find ways to cope with the challenges of caring.  Any children you may have may also benefit from this. In the first instance, it may be worth approaching your GP and asking for a referral to see a mental health professional. If you work for an employer, then there may be support available via work and employee assistance programmes, or your health insurance. Do make use of this if you need to. Don’t feel embarrassed or proud. If you’re feeling the strain from the extra demands on you then that’s understandable. Seeking help is a courageous thing to do and the extra support can really help to sustain you for the long term.
4. Spiritual support: If you’re a spiritual person and you have a spiritual community then tap into that for help, support and assistance for yourself, your family and the person you’re caring for.
5. Financial assistance: Carers may be able to access financial assistance to help cover the costs of caring for someone with PCS as it’s considered to be a chronic condition. For more information, see the ‘Benefits for Carers’ page on the NHS website: https://www.nhs.uk/conditions/social-care-and-support-guide/support-and-benefits-for-carers/benefits-for-carers/
   
   Also, if the patient is undertaking a personal injury legal case, then there may be financial help available to them in the form of advance payments for medical, health care and carers. Enquire with the person’s solicitor to see if this is an option to help them with the financial burden of their care.
6. Respite care: Carers may be able to take advantage of respite care services, which provide temporary relief from caring responsibilities. This can involve hiring a professional carer or arranging for a volunteer, friend or family member to step in and provide care for a fixed, agreed length of time. For more information on respite care, visit the NHS website at www.nhs.uk/conditions/social-care-and-support-guide/support-and-benefits-for-carers/carer-breaks-and-respite-care/

Checking in on carers

If you know someone who’s caring for a person with PCS, then please check in on them from time to time to make sure they’re OK and to see if there’s anything you can do to help. They will really appreciate this - whether it’s an offer to help with shopping, childcare or just a cup of tea and a chat. It will give them a break from their caring demands.

Likewise, if you’re a healthcare provider treating the person with PCS or a professional dealing with them in some capacity, and it’s appropriate to do so, then do ask their carer at an appointment how they’re doing and if they need any support with any aspect of their caring. Showing you care for them too will mean a lot.

A final word

It’s essential that you find a balance between caring for the affected person and taking care of your own physical, emotional and social needs. It’s OK to seek support for yourself and to take breaks from caring responsibilities from time to time. Do seek support from friends, family, and healthcare professionals as needed.

You’re not alone in your caring responsibilities and there is help and support available to you from many sources. Pick up the phone or speak to someone to share your concerns and needs.

Speaking from experience, as someone who has suffered from PCS, things do get better over time. Sure, there may be ups and downs, progress and setbacks and residual effects from the injury. However, the general trajectory for myself and for most people over time is in the direction of healing and progress. If you’ve found yourself in a caring role for someone with PCS, then keep going with your valuable work. You will adapt, evolve, rise to the challenges you face and become a stronger person in the process.