Managing your emotions when the person you care for does not return home from hospital

Published

08/11/24

As a carer, one of the most difficult experiences you might face is when the person you are caring for does not return home after a hospital stay. 

This might be due to a change in their condition so they have to transfer to another healthcare setting, a decision to move into a residential care home, or their death whilst in hospital. In every case, it can feel overwhelming if the person you had expected to return does not come home.

Here we offer some gentle guidance on managing the complex emotions that can arise during this time and share practical strategies to support your wellbeing and help you navigate the decisions and changes that may now lie ahead. 

Acknowledging all your thoughts and emotions

There is no one right way to respond to an experience like the one you are going through. Your situation is unique. This means that first of all, whatever arises for you needs to be simply acknowledged and allowed to be there. This includes those thoughts that might shock or disturb you, and strong emotions and feelings that might feel very uncomfortable or unfamiliar.

Emotions affect how we feel on every level, including physically. You might feel tightness, sharpness, pain or heat in your body associated with certain emotions and feel how your heart rate changes when you feel anxious, frustrated or angry.

Here we explore some of the emotions that might come up when the person you are caring for does not return home after a hospital stay, before going on to share some practical strategies to manage those emotions in a healthy way. 

Shock, disbelief and denial

When something happens that is so unexpected we find it almost impossible to take in, we might feel frozen in a state of shock. Even if the possibility of the person not returning home was discussed with you at some point, it can still be shocking if it has actually happened. You might find yourself in disbelief, in denial and struggling to accept the reality of the situation.

Grief 

Grief is a natural and expected response when someone you care for does not return home. Grief is not only felt when someone we care for dies, it can also be felt when the dynamic of your relationship changes or when the person you are caring for is no longer in your life in the same way.

You might be mourning the loss of your daily routine, the relationship between you, and the emotional connection you shared. 

Grieving is a process, not a single event, and acknowledging this can help you move through it more gently. Our carers guide to understanding grief and our article on managing the unexpected death of the person you care for can offer more in-depth support.

Guilt

Guilt often goes alongside grief, especially for carers. When someone they were caring for did not come home after a hospital stay, some carers have shared that they found themselves questioning whether they should have done more and somehow prevented the worst from happening. Thoughts like ‘This is my fault…’ or ‘If only I’d done things differently I could have prevented this…’ or ‘I actually feel relief, and that must make me a horrible person…’ can arise and be accompanied by waves of guilt.

As you begin by simply acknowledging these thoughts and feelings of guilt, you can gently start to tell yourself different stories that might feel a little better. You could tell yourself that you had always provided the best care you could, that some outcomes are always beyond our control, and that sometimes there simply isn’t anyone to blame, including ourselves. You can explore this complex emotion in more depth in our article on managing guilt as a carer.

Betrayal, anger and frustration

If the person you were caring for does not come home after a hospital stay it is natural to feel betrayal, anger and frustration. You might feel that both you and the person you were caring for placed your trust in others and were let down. You might feel anger towards the healthcare system, certain professionals, or even the person you care for, for leaving you. Frustration can come up from feeling helpless at not being able to change the outcome, or from all the red tape and paperwork you might have to deal with.

These are all natural responses and it will be important for you to express these feelings in ways that don’t cause more stress for you, like sharing with a friend who will let you talk and just listen, or writing a letter that you may never choose to actually send. Sometimes just expressing your feelings out loud or on paper can help you feel better.

Relief

Although it may feel uncomfortable to admit it sometimes, feeling relief when the person you are caring for does not come home after a hospital stay can be a very common experience for many carers. It is very natural to experience some relief in this situation, especially if your caring journey has been a long and demanding one or if the person you were caring for was in pain and now that suffering has ended.

It’s important to understand that feeling relief is a normal response signalling the end of a particularly difficult chapter, and feeling relief does not undermine the care you showed or mean that your love wasn’t enough.

Self-care and wellbeing practices

It might seem like a lot of effort at first, but looking after yourself in the midst of such emotional upheaval is very important. Caring for others is an incredible act of love and compassion, but it's crucial for you to remember care for yourself, too.

Self-care practices like a gentle walk at the start of the day, doing hobbies you enjoy, listening to soothing music or a guided meditation, and taking time to rest can all have a positive impact on your emotional wellbeing.  See our guides to looking after yourself, or join one of our support groups.

Some practical ways you can work through your emotions

Strategies for coping

Feeling big feelings is your body’s natural response as it tries to deal with a lot of information at once. You might not always know the name of an emotion you are feeling, sometimes it might feel as if you’re not feeling anything at all, and at other times it might feel as though you are experiencing many emotions all mixed up at once. 

Whilst feeling difficult emotions can feel physically excruciating or frighteningly intense at times, simply being still and breathing as the feelings pass through you will allow them to ‘process’. Being present with your feelings and having compassion for yourself during this process will encourage your feelings to move through you, perhaps leaving you feeling a little lighter and more confident that you can ‘get through it’ the next time a wave of feeling wants to come up.

The alternative is to try and avoid your feelings, ignoring them or pushing them down where they can get ‘stuck’ inside. You will still have to carry your emotions around until they are eventually released though, and this type of ‘bottling up’ or ‘stiff upper lip’ response can cause its own problems, like chronic anxiety or depression, later on. 

Express yourself

Writing out your confusion and despair in your journal, talking your frustration and anger out loud as you dig the garden, or having a good cry to a piece of music are all ways that you can help yourself to express what might be going on inside you during this difficult time. 

The idea is to let what you are carrying around inside come out in a way that feels safe. Even if it feels a bit silly at first to do some of these things, you are simply letting your emotions out and will feel better in the process. Writing, painting, or engaging in other forms of creative expression you enjoy can also help you process emotions and provide an outlet for feelings that are sometimes hard to verbalise.

Self-care and wellbeing practices

It might seem like a lot of effort at first, but looking after yourself in the midst of such emotional upheaval is very important. Self-care practices like a gentle walk at the start of the day, doing hobbies you enjoy, listening to soothing music or a guided meditation, and taking time to rest can all have a positive impact on your emotional wellbeing. 

Practical action

Whilst sometimes doing things can be a distraction from feeling strong emotion, at other times taking practical action can be a useful way to get things moving and help you feel more purposeful again when you may have felt disempowered or helpless in your grief. 

If the person you are caring for has moved into residential care or to another healthcare setting, for example, finding out about their new home and their new care plan can help ease the transition and give you a sense of continued involvement in their wellbeing. Our article on supporting the person you care for in transitioning to a nursing home may also be a useful resource for you here. 

Managing fears around what comes next

It is absolutely normal to feel uncertainty about what comes next and to wonder how you will cope. Whilst this time can be an opportunity to rediscover your own personal interests, reconnect with friends and family, it can seem too much to even contemplate this at first. That too is very natural, but setting small, manageable goals can help you gradually build a new routine and sense of purpose again.

Access Support

Talking through how you are feeling and spending time with friends and family can help you manage your emotions when the person you are caring for does not come home after a hospital stay. 

Joining a support group, whether in person or online, can provide a sense of community with others who will understand some of what you are going through. Sharing experiences with others who have gone through similar situations can be comforting. 

Sometimes emotions can feel overwhelming and if you feel like things are getting too much or that you are not coping at all, your GP is there to support you. They can connect you with other professionals like counsellors and therapists who will listen and provide you with helpful tools for managing your emotions so you might slowly start to feel more hopeful. 

Looking further ahead

Adjusting to life after caring or to a new caring routine is a gradual process, and it will naturally take time for you to be able to think about the future. 

At some point you might start to consider what life could be like for you beyond the caring role that has formed such a large part of your identity. You will have more time and space to focus on yourself and on opportunities that may not have been possible for some time, like creative activities, volunteering or developing your career.

Of course, this can seem like a very daunting prospect for many people, and our article on thinking about life after your caring role comes to an end has been put together to support you for when it feels right. 

When the person you are caring for does not return home after a hospital stay, you will be navigating the thoughts and feelings that arise moment by moment and taking things day by day. 

At every stage, managing the thoughts and emotions that come up will require patience, self-compassion, and the support of others around you so that in time you can heal and begin to move forward in the ways that feel right to you.

Financial support

If you are at all worried about finances at this stage, you are not alone. Many carers say that they worried about money when they were suddenly not able to work full-time, for example, or needed to make expensive alterations to their home. It’s important to know that there is financial support available from your Local Authority in the form of benefits and grants. Our article on Getting financial support as a carer is a detailed guide to receiving the support you are entitled to.