Supporting a new parent living with brain injury

Becoming a parent is a significant change in anybody’s life.  It requires a resilience and flexible thinking around new routines as well as adjusting to being responsible for a baby.  It is a journey filled with joy, excitement and fear at the same time.

Imagine for a moment how daunting this can be, when your life has already been changed forever by a brain injury. Adjusting to new routines, supporting your partner and managing your own feelings could be overwhelming at times.

Fatigue, physical pain and limited mobility can make it hard to keep up with the physical demands of caring for a baby such as lifting, carrying, bathing and playing. Brain injury often affects emotional regulation and with a lot of different emotions present in relation to the new arrival in the family, this might be difficult to control. New parents are often anxious about care routines and decisions affecting the baby and the anxiety can often be heightened in this situation when you have a brain injury. Sensory overload can also be tested with loud noises when baby is crying, and the new routines feel like they are descending into chaos.

Parenting is exhilarating but can also be exhausting, and when you have a brain injury this adds an extra layer to the fatigue you may already be experiencing. Individuals living with brain injury might also have less insight into understanding the needs of both the baby and their partner.

So, what particular challenges could people with brain injury face when they become a parent?

These can include cognitive challenges, physical limitations, emotional and psychological struggles, overstimulation, fatigue and potential burnout as you deal with the day to day demands that a new baby can bring. Your partner may naturally try to take a more proactive role in caring for the new arrival whilst navigating changes to family routine and at the same time supporting you. This can be isolating and, can lead to relationship tensions and breakdown. For example, it can be difficult for the person with the brain injury to remember schedules, appointments and childcare tasks which could prove to be frustrating for their partner. And looking after the baby with poor concentration issues of your own can pose a number of issues.  Meanwhile your partner is trying to establish new routines and provide the best possible care for the baby, while being sensitive to potentially making their partner feel ‘left out’ in the process.  Sometimes, being responsive to forever changing demands while struggling with all the thought processing can be overwhelming for them both

So, how can a Case Manager best support a new family?

Firstly, it is important that Case Manager understands the family dynamic, cultural background and wider family and community support networks already in place.  At times like this, the family and friends often offer support, from help with practical tasks or simply being available for ideas and advice.  A good Case Manager will familiarise themselves with this and can help navigating the various suggestions and offers of help and how best these might meet the changing needs of the client and their family.  It is also important to identify any limitations the client feels that they have as part of the planning and to seek effective, practical solutions to overcome these. For example, physical limitations may mean that the design, adaptability and ease of use of additional equipment like baby carriers, support pillows, bath seats, suitable pushchairs will be of importance and will need greater consideration. Exploring the use of diaries, task lists and phone applications can aid with cognitive memory issues and help to maintain important routines with a new baby. It might be helpful to enlist an Occupational Therapist and Physiotherapist to assess the needs and provide practical solutions and the Case Manager will be instrumental in sourcing these, ensuring they are a good fit with the client and their family.

Fatigue can be a real problem, not just for the parent with the brain injury but also for their partner and sleep deprivation can easily lead to burnout and exhaustion as well as causing tension.

Over the years, I have worked with many people of all ages living with brain injury, including some that have become parents for the first time, since their respective injuries sustained in adulthood.  Here, I outline two distinct case studies, which demonstrate how each individual was affected by becoming a parent and how I shaped my approach to support them in the best way possible, within my role as their Case Manager.

Case Study A

My client and his wife had tried for a long time to being a family and had initial difficulties in conceiving.  This in itself created some anxiety until they successfully underwent fertility treatment and could at last look forward to the birth of their longed-for child.   When their son finally arrived, they were overjoyed but quickly found that sleep deprivation began to cause both of them considerable stress.

Throughout this period, my role was to keep in regular contact, inviting conversations with both partners to enable them to feel able to voice whatever was worrying them both.

Being able to talk through some practical ideas lead to a temporary move for my client to an alternative room at night.  This was a great success and enabled the whole family to enjoy better sleep and increased energy levels with which to face the day ahead.

As their child developed, my client expressed frustration and sadness at some of his perceived limitations when it came to being an active parent.  For example, his brain injury had left him with vestibular problems affecting his balance when standing or walking, making carrying a baby very risky.  He also had weakness to one side of his body which created problems when moving or lifting equipment.  His hearing had also been affected as well as his cognitive and processing abilities.   We talked about all the needs that a growing baby has and how, as a father, he could contribute actively to caring for his son as well as being a supportive husband to his wife and working as a couple.  Exploring practical tasks, we identified that he would be adept at preparing the baby’s bottles and, in time as he was weaned, the baby’s meals and feeding him.  This provided respite for his wife, as well as providing a great bonding opportunity for him as a new father.

When it came to equipment, I took the same approach, researching a car seat with suitable carry handles to enable Dad to safely use it rather than having to rely on his wife all the time.  Seated play was a lovely way for him to spend enjoyable time with his son, again giving his wife some rest time while actively being involved in parenting.

My client said he found these adjustments really helpful and that he found time spent with his son on all of these activities both rewarding and satisfying.

Another role which the case manager fulfils is that of signposting which can be very important for the whole family.  My client sometimes spoke of the sense of loss he also had at the time of the baby’s arrival.  This was because the changes in routine and childcare demands underlined to him, what his brain injury had taken away from him, leaving a sense of sadness and frustration at times.

I was very sensitive to my client’s cultural background, where he had a strong preference for looking to his own community for support.  But suggesting he might like to contact his local Headway branch was very successful.  He began attending their day service and found it helpful to talk to other people living with a brain injury as well as giving him access their online resources and support groups for when he felt he needed some additional support.   As his son grows, he has expressed a desire to continue attending the day service as he has found this very helpful and encouraging.

I have also sourced a Psychologist which he is considering talking to, if those feelings of loss and frustration rise to the surface again.

My client’s son continues to thrive, and they have found their way together as a family, working as a team.  It’s very satisfying to see this and part of the enjoyment of my role.

Case study B

Another client also sustained his brain injury as an adult, becoming a parent for the first time to a daughter almost 4 years ago.

Although ambulant, rather like Client A, he had constant vestibular issues which affected his balance, gait and stability when not seated or holding onto something for support.  With close ties to wider family, and my client’s mother and siblings who were offering support.  However, he wanted time to consider how to get the right balance between accepting their offer of support whilst still maintaining and development his active role as a parent.

Over time, he adapted well to his role as a father and once his daughter began walking and spending less time in a pushchair, she began helping him with several tasks.  This seemed to come naturally to her, and he readily accepted it, enjoying the opportunity to do things together.  For example, he would sit down while his daughter chose and brought books for him to read to her and they enjoyed lots of seated play and games where his balance was not an issue.

It was lovely to see the family pulling together and for my client to become more able to fulfil such a proactive role as his daughter continued to grow.

As the routine settles and the parent with brain injury becomes more confident with caring for the baby, it is important to ensure that emotional well-being is monitored by the Case Manager and support given whenever required.  Open communication and a working relationship built on trust means the whole family can rely on the fact that their case manager has their interests at the centre of everything they do and that they will adapt to the changing needs of the family.

This is ever evolving with time and poses new challenges as the baby grows into a toddler and beyond.  The Case Manager can help to evaluate progress and identify the goals that matter most to the family, relating to parenting across the different stages of child’s development.

Navigating parenthood with brain injury means that the client has to learn to become resourceful in finding ways to be actively involved with their child to the best of their ability.   The Case Manager and wider network of professionals can work in collaboration with their partner, family and friends to effectively provide support with ensuring that the parent’s journey is fulfilling, despite the ups and downs, and help the family unit to feel safe and secure.

The achievements of the client and their partner also need to be celebrated to nurture the parenting role and it is often the Case Manager who will point out the successes and positives, providing encouragement and building self-esteem by putting the client and their partner first, enabling them to prioritise the needs of their child.

“The amazing thing about becoming a parent is that you will never again be your own first priority.” (Client quote)

It is important that parents take their time for self-care, look after each other and support each other on the journey and draw on support when they feel they cannot cope. Having the right case manager in place alongside them means they will always have access to somebody who knows them well, understands their situation fully and is an effective, reliable and trusted partner in helping them to move forward.

Being a parent is such a rewarding role and requires a person to overcome a lot of challenges and difficulties, but to see the baby developing into a confident toddler and beyond can fill the lives of their parents with joy and pride.  Working alongside a family as they grow together is a privilege.

Author: Beata Roberts, Case Manager

This article was also published on WWW.NRTIMES.CO.UK on 11th March 2025