Caring for someone with post-concussion syndrome

If someone you know has had a concussion, such as a spouse, close family member or good friend, then you may have found yourself in the role of caregiver for them. If their concussion hasn’t resolved in the normally expected timeframe of a few days to about a month then they may have post-concussion syndrome (PCS) and you could be in the position of looking after them longer term. Post-concussion syndrome can be debilitating and significantly impair a person’s life and they may need quite a lot of extra support. If you’ve taken on this support role then this blog post is for you.

After my car crash and concussion in November 2016, my husband had to take on a caregiving role for me. I was very independent prior to my injury but after my concussion and whiplash injury, I needed help with day-to-day activities such as looking after our three children, who were 8, 7 and 3 at the time, grocery shopping, cooking, driving and tidying the house. The first year or two after my injury was probably the hardest, and after that, his role gradually become less demanding. Even today, though, almost seven years later, he still has to support me more than he did prior to the injury. For example, I don’t drive as far as I used to and I still sometimes suffer from symptoms such as brain fog, fatigue and chronic pain, so at times he steps in and does things to unburden me. My three children have also played their part in looking after and supporting me, mainly by giving me moral support and helping out around the house. I’m very grateful to all of them for the love, care and support they’ve all shown me over the past few years.

Overview of Post-Concussion Syndrome Symptoms

If you’ve been looking after someone with a concussion or PCS for a while then you will be familiar with the wide range of physical, cognitive and emotional symptoms. These symptoms can vary from person to person and can vary in severity and duration.

Some (but not all) of the common physical symptoms of PCS include headaches, dizziness, coordination and balance problems, blurred vision and sensitivity to light or noise. Cognitive symptoms include difficulty with memory, concentration or attention; speech problems; slowed thinking or processing; difficulty with problem-solving or decision-making and confusion. Emotional symptoms of concussion may include mood changes; anxiety or depression; irritability or frustration and difficulty with emotional control. Every person's experience is unique: some people may have a few symptoms, while others may have many or all of them.

How To Support Someone with Post-Concussion Syndrome

With such a wide range of possible symptoms, it’s no surprise that PCS can significantly impact a person’s daily life.  They can have difficulty, for example, caring for themselves, running a home, carrying out their job, getting from place to place, going shopping and socialising.

In your role as a carer of someone with PCS, there are many ways you can look after and support them. Some of these ways are listed below. Every person’s experience with PCS is different so apply the ones that are relevant to your situation and adapt if necessary:

1. Educate yourself and learn as much as you can about PCS so that you have a better understanding of the challenges the person you’re looking after is facing and so you can know how to best support them. You can do this by reading books, articles or websites or by talking to the person directly and asking them about their experiences.
2. If possible, learn about the experiences of others with PCS and mild brain injury, especially those who have made a good recovery, as this will inspire you and the person you’re caring for. There are Facebook groups, social media accounts, online membership groups and local in-person support groups for people with PCS. As a caregiver, it’s likely that you would be able to attend to connect with others in these settings to learn about their experiences and gain advice, insights and tips. Ask the group leader if you’re not sure whether you can join but I’m pretty sure that there are carers in some groups such as these. My local Headway branch ran a 6-week course for people with brain injury and their carers which I took. My husband also went along to one of the sessions, specifically for caregivers, and he said he found it invaluable. You could also accompany the person with PCS to a group like this to give them support if they need it, or they may prefer to be dropped off and go alone, giving you some time for a break.
3. Contact national or regional brain injury charities such as Headway (www.headway.org.uk) and Same You (www.sameyou.org). They have lots of helpful information about concussion and brain injury on their websites.  Headway has a phone helpline: 0808 800 2244. Headway also runs local support groups for people with PCS.
4. Help manage appointments and treatment by coordinating with healthcare providers, keeping track of any medications and their dose and frequency and following treatment plans. You may find yourself attending some appointments with the person you’re caring for, especially in the early days.
5. Provide physical care, especially in the early days after the injury, such as help with bathing, dressing, eating and toileting if necessary.
6. Help with daily tasks such as grocery shopping, cooking, cleaning, gardening and organising the home.
7. Carry out extra driving duties if the person is unable to drive and needs transportation. You may also need to help out if there are children who need to be taken to school, extracurricular activities, etc.
8. Help with pets. If the person has a pet, there may be vet appointments to attend, assistance needed with cleaning or grooming and food and other supplies that need to be purchased.
9. Provide emotional support as the person navigates the challenges of their often overwhelming condition. This might involve listening to their concerns, offering encouragement and helping them find ways to manage their emotions. Often the person just needs to feel listened to and understood so do offer this to them.
10. Assist with managing finances. The person’s ability to make financial decisions may be impaired so you may need to help them manage their budget and handle their financial affairs. This includes such things as paying bills, coordinating insurance coverage and helping them with their day-to-day spending, such as in shops, etc.
11. Help the person navigate any changes to their employment situation. You may need to help them communicate with their employer, colleagues and/or customers and remind them to update them on their situation. Or you may need to get involved directly and communicate with others on the person’s behalf, updating them from time to time on the recovery. You may be able to help negotiate some time off or request flexible working hours. You may need to suggest or ask for some accommodations for them at work, such as changes to their workspace, equipment or tools they may need to help them with their job or having breaks to rest. You may possibly be able to play a role in helping the person to apply for sickness benefits if they’re unable to work.
12. Assist with a personal injury claim if that’s relevant. If possible, make sure they have a solicitor who understands brain injury and PCS. Factor into the expenses of the claim, any receipts for extras such as hiring a cleaner for the person, taxi rides they have to take, etc. You may also be able to claim for your time; check with the solicitor.
13. Encourage rest. Rest is an important part of the healing process, so it’s important to encourage the person to pace themselves and take time out when they need it. Rest is particularly important in the early days after a concussion. However, as time goes by it’s important to encourage the person to do more physical and mental stretching activities at a pace that builds on what they’ve been doing but that doesn’t trigger symptoms. This will help their recovery. Keep helping them to try to maintain a balance.
14. Encourage the person to eat healthily, exercise, get enough sleep, look after themselves and do things to stimulate their mind. These basics of life all help with recovery.
15. Be open, and non-judgmental and respect their autonomy.  Try to avoid making assumptions about the person’s abilities or limitations and instead ask questions and listen to their perspective. It’s important to ask for permission before offering assistance and to follow their instructions on how to best support them. Respect the person’s autonomy and allow them to make their own choices and decisions. However, this can be sensitive as their thinking and judgement may be impaired so if you feel they need particular help with something and you need to make a decision on their behalf, do so but involve them as much as possible and take their opinions into consideration.
16. Be patient. It may take some people with PCS longer to complete certain tasks or to communicate. Do be patient and don’t rush them. Concussions can take time to heal. Try to be understanding of their needs and limitations.

Conclusion

There are many ways to support someone with PCS and help them to manage their condition. Overall, the most important thing you can do is to be there for the person you’re caring for; be understanding of their needs; listen to them and encourage them to ultimately take care of themselves as much as they are able. Understand that they may get upset about their situation so be sympathetic to that but also keep reminding them that they can improve from where they are right now. Be their biggest cheerleader.

The Rewards Of Caring For Someone With Post-Concussion Syndrome

Caring for someone with post-concussion syndrome can be demanding, difficult and exhausting so it’s really important to take care of yourself, meet your own needs and try to create balance, rest and relaxation in your own life. You must get on with your own life too. (I’m planning on my next blog post being on the topic of caregivers looking after themselves, so keep an eye out for that.)

At the same time, being a carer can also be rewarding and you may experience a sense of purpose, meaning and fulfilment as you help a family member or friend through a difficult time.

The rewards of caring for a person with PCS include:

1. Watching their health improve. Hopefully, you’ll see the person’s health and mental and physical well-being improve as a result of your presence, input and help. Don’t underestimate the power of what you’re doing. Your care is helping the person to get better.
2. Improved relationships. For many people, caring for someone with PCS can bring them closer together with their loved one, as they work together to manage the challenges of the condition. Sometimes, when we go through hard times together it actually deepens our relationship. There are many different hurdles throughout life, and this current experience may teach you that, ‘if we can survive this and overcome it, then we can survive and overcome anything’. It’s also possible that the relationship could become strained. This is understandable but do try to work things through. A bad day or week won’t mean that the next day or week will be as bad. Focus on the wins and the good aspects as much as you can. Make sure you have time for yourself too. If you’re a couple, then it’s important for you both to work as a team and communicate openly about the challenges of living with PCS. Also, seek support from friends, family, healthcare professionals and a therapist or counsellor (preferably with experience of PCS or brain injury) if needed. Likewise, if you are caring for a family member, neighbour or friend.
3. Personal growth. Caring for someone with PCS can be an opportunity for personal growth, as you learn new skills, overcome challenges and develop your own resilience and coping mechanisms.
4. A sense of accomplishment. Caring for someone with PCS can give you a sense of accomplishment as you’re able to make a real difference in their life. Know that the work you’re doing to support them is invaluable and is helping them in a very real way. They may not always be able to show their appreciation of your support but they will be very grateful for all you’re doing to help them. In time, and as they get the right treatment, and learn to manage their condition and heal, you should see significant improvements in their condition. Take satisfaction in the fact that you have played a significant part in their healing and recovery.