Caring for Cystic Fibrosis and Your Relationships

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If you are lucky, you may have a strong support structure around you that includes family, friends and local resources such as parent groups, as well as the more formal health support systems such as your health visitor and GP. Good family and social support can be invaluable and, for many people, it is close friends, grandparents, aunts, uncles and other family members who provide most of the practical and emotional support you need when you have a child with a long-term illness. Not everyone is lucky enough to have this sort of support, and even when it is in place, difficulties can arise at times of increased stress or crisis, and relationships can become strained. Resentment can easily build up and this gets in the way of clear communication, which can contribute to difficulties and lead to more resentment.

Some parents who take on a caring role for a child with a long-term illness also say that they feel they have lost their previous identity as an adult. For example, they may have had strong positive relationships at work with colleagues and their sense of self-esteem may have come from achievements in the workplace. When you have a child with a medical condition, it can be hard to keep up the same links with work in the short term after diagnosis, and in the longer term it can mean changing expectations and priorities. It can feel like you have been thrown into a world you are much less comfortable with, and one which doesn’t allow you to have the control you are used to. This can be a very difficult transition and can make parents feel that they have lost their own sense of confidence or self-value. While many employers will be sympathetic and do give time off work to care for a child, it is still difficult to have the flexibility to take time off for unexpected illnesses or hospital admissions.

Over time, families develop their own rules of what works for them and build up their own family routines and structure. However, there are many ways of doing this, and no short cut to finding what works for your family. There will inevitably be times when it is a real struggle and when the juggling feels overwhelming, particularly if a parent needs some flexibility to take time off if the child is ill or in hospital.

Many parents of babies with long-term illnesses say they feel very isolated from the ‘normal’ support strategies that new parents usually use in these situations – even other members of the family can be very shocked, frightened or even judgemental about a child with health needs. While other new parents are preoccupied with their own child and ‘normal’ challenges, such as getting sleep and feeding patterns established, this may seem trivial compared to the challenges faced by a parent with a child with a health condition. In addition, other new parents may not have the emotional space or capacity to take someone else’s additional needs into account.

If you are on your own or have limited support from your own family, or have a family in conflict, this can be a very isolating experience. It can be hard to find the additional confidence and energy to get involved in activities outside the home, and all of these may need you to be highly organised. It may help to bring a friend or relative to appointments with you when you can. It can be helpful to talk through any decisions you have to make about your child’s healthcare; often it is hard to remember everything that was said on the day of the appointment, so having someone else there can help you remember details. Identifying a good friend who can get to understand a bit about your child’s illness and even help with some aspects of treatment or give you a break occasionally can be really helpful.

Practical Support

We know that there are increased financial burdens on families with a child with a long-term illness. Even if healthcare itself is free at the point of delivery, all the additional costs such as fares to get to and from hospital, parking at the hospital or taking time off from work to bring a child to appointments can add up. Parents may have taken the decision for one parent to give up working or work part-time or flexible hours in order to be around for the medical demands required. Financial and practical strains can build up and lead to emotional stress as well.

There are some sources of financial support that families with a child with a long-term illness might be eligible for, depending on your child’s level of need and your level of income. However, it is not always straightforward to find out what you are entitled to. In some hospitals there are family support workers or social work services that can offer this support, and some charities also fund some additional support (for example, CLIC Sargent fund social workers who offer practical and emotional support to all families where a child is diagnosed with cancer). If you are not sure if you are eligible for any financial support, then the Citizens Advice Bureau can offer advice and guidance about sources of support (see Resources section at the end of the book).

For many parents, there are practical issues that get in the way of the help they need. Ideally, they would like to have a break, but it is difficult to find reliable carers who are able to provide the sort of care required. While some services are available from social care funded by your local authority, these are frequently extremely limited and involve assessments that can be time-consuming so will not solve the problem immediately.

Some people are very wary about accepting a referral to social care, and fear that their child might be taken away from them or that they will be judged as inadequate as a parent. However, these services are there to provide support for families, although they are often not able to provide as much support as would be ideal. They are essential if a child needs a package of care at home and, depending on the area you live in, some are able to provide short breaks or small amounts of support time at home.

There are also many charities that are linked to a particular medical condition or diagnosis; some of them are very well-known, such as Macmillan Cancer Support, but there are also some for rare conditions that have been set up by an interested parent or relative. These are usually easy to find on the Internet, but if not then ‘Contact a Family’ has an online searchable list which can help locate the appropriate service (see the Resources section).

Charities for specific medical conditions are often very well informed about whether there is any financial support that families can access and can signpost families to them. Some provide access to additional resources to support carers (for example the CarersUK advice line).

Patient support groups and charities can also put people in touch with other parents who have been in a similar position, which can be a very powerful source of support because other parents really do have a good understanding of your child’s condition and the specific challenges you face. For very rare conditions, it can help to find someone, possibly even in a different country, whose child has a similar diagnosis or experience to your own, since this may be very hard or impossible to find in your local area. These additional sources of information and support are also listed in the Resources section of this book.

While the Internet and social network sites provide a potentially strong link to other people in a similar position, it is important to be careful when using online chat rooms or social media – the information may not always be accurate, and every child is different, so what another parent experiences may be very different from your own experience. While social media can be a very valuable source of support, it can also give you access to very frightening information that it is then almost impossible to ignore!

Hospices are usually associated in most people’s minds with end-of-life care, and many parents are understandably a bit fearful of what these services might be like. However, hospices do actually provide a range of services for children and have a broad definition of what is meant by ‘palliative care’. This includes children with a life-limiting condition who are nonetheless well at present but may have a reduced life expectancy. They are usually financed by charities and so have limited resources, but many provide excellent care for the whole family including parents, grandparents and siblings, and can link in with hospital services to complement the support offered within mainstream healthcare.

Looking After Yourself

When you are looking after children, especially children with health problems like Cystic Fibrosis, it can be hard to look after yourself as well. Looking after yourself includes all the basic essentials such as making sure you are eating OK, sleeping enough and taking care of your own health. Parenting is a long-term project and keeping yourself well will help you manage the short-term difficulties that you face.

As we have seen throughout the book, it is also essential to consider your own psychological wellbeing alongside the wellbeing of your child. As we’ve discussed, how your child copes will be affected by how you cope and so, if you are feeling very stressed, this is likely to be picked up by your child. At times, when you do find it overwhelming, it is important to try and manage this, not just for your own sake, but in order to help your child as well. Rather than feeling you have to admit you are not coping, try to see this as normal and to be expected for a parent who has to manage more than the average parent!

There are no easy answers to finding the time and energy to look after yourself as well as your child, and it may only be realistic to do much less than you know is ideal. Nonetheless, it is easy to let your own needs slip to the bottom of the pile of things to do, so try and build in small amounts of time where you do something that makes you feel better.

What Other Parents Have Found Helpful

There are small things that you can do to help you feel better in the short term, which can help sustain you and help you feel more positive.

Treat yourself

Find something you can ‘treat’ yourself to. It is easy to be dismissive of even small tokens but this may realistically be all that is achievable at busy times and can help you to break out of a rut. Feeling resigned to the fact that very little can help can be a sign of feeling depressed, and this can itself prevent you from getting the help you need. Examples other parents have suggested include:

•    Have a pamper session in the bath

•    Do something creative, such as painting or colouring, writing a story or poem or icing a cake

•    Set a timer for fifteen minutes and make it your time – do nothing or read a magazine – your choice!

•    Change is as good as a rest – bring some flowers into the house, wear something bright, do something different

•    Make a list of things you are grateful for or which are going well

•    Listen to some music or sing – whatever you enjoy

Take a break

Getting some exercise and being outdoors has also recently become recognised as part of a helpful approach to managing stress or low mood. The natural reaction to feeling low is often to withdraw from your usual activities – it feels too much like hard work to get yourself out of the house, or you may feel bad about the way you look or ashamed of appearing tearful. It is also very common to withdraw from social contacts, maybe feeling you are too boring or feeling inadequate compared to other parents. But withdrawing is actually very bad for your mood – it means you spend more time ‘in your head’ brooding about how difficult things are or worrying about things. Whenever possible, take a break by doing something active; for example, going for a short walk, and include some contact with other people if possible.

Dealing with stressful thoughts

Mindfulness is an approach to managing stress that has become very popular in recent years. There is now a range of books and apps that introduce you to the principles of mindfulness. While it may be difficult to find the time to attend a weekly course of mindfulness sessions, it is something that can be done at home, by yourself, at your own pace. Some people find mindfulness-based stress reduction helpful for the management of stress. You may be able to access a free course via your GP but, if not, there is a variety of apps on the market, some of which are listed at the end of the book in the Resources section.

Many people feel uncomfortable with the early stages of mindfulness – it may feel embarrassing, or you feel self-conscious and find the ‘hippy’ approach unnatural. It is not for everyone but, because of its accessibility via phone apps and new technology, it has been taken up by many more people and become very popular. It has largely replaced stress management courses and there is now good evidence that it does help with managing stress.

Don’t be too hard on yourself

Everyone has bad days, and sometimes it can be helpful to accept you have to write off today and start again tomorrow.

When Should I Get Help?

It can be hard to admit to yourself when you are finding it hard to cope. You may feel hopeless, that you are not doing a good enough job as a parent, or that there is nothing that can help make things better for you. Although there won’t be any easy outright solutions, it is important for the longer term to seek help when you need it. There is still a lot of stigma associated with mental health problems, and it is also hard to find time to address these difficulties alongside all the other physical difficulties that you face.

There are services that may be able to help – your GP or your local hospital should have ways of referring you to a psychologist or a counsellor, and your local mental health services should be able to offer an assessment. You can also refer yourself to your local IAPT service, and there is information about how to do this in the Resources section. (IAPT stands for ‘Improving Access to Psychological Therapy’ and is an NHS initiative to improve the availability of talking therapy).

Case Study – Sara

Sara was an experienced teacher who had worked for several years as a head of department in a secondary school. She enjoyed her job and felt valued and confident about her skills. However, her baby arrived early at thirty-two weeks and she felt completely unprepared for this.

For the first few weeks he was in a special care baby unit and, although she spent most of the time by his side taking care of him, she felt clumsy and incompetent compared to the nurses. She had intended to breastfeed but struggled to get feeding established using a breast pump. Because of all the anxiety about her baby’s low weight, she felt under pressure to provide breast milk for her son. When he was discharged home three weeks later, her partner had already returned to work after paternity leave, and she found it hard to get out of the house because of trying to set up a routine for her baby and trying to make sure he fed enough to grow. She had joined an antenatal group for new mothers in her area and gradually all the other mothers had their babies. They appeared so much healthier and stronger than her baby, so she felt ‘left out’ by the group because they all appeared to be managing so much better than her.

On a visit to her GP, when asked how she was getting on, she burst into tears. Her GP was sympathetic and reassuring and talked to her about how to get more help. She assessed Sara for postnatal depression and talked to her about support for new mothers. Sara was referred to her local mental health service by her GP and was seen for a series of six sessions based on cognitive behaviour therapy (CBT) to help manage her depression. Although Sara still struggled with the early months, she gradually built up her confidence and established good relationships with other local mothers.

Your Relationships

It is all too easy to put your own needs and relationship with your partner to the bottom of the pile when you are caring for a child with a physical condition. You may simply not have the time and energy to think about how to focus on your partner’s needs, but nurturing your relationship will give it a better chance of surviving.

A lot will depend on where you start from when you realise you have a child with a long-term health problem. Some couples start from a really solid foundation and are very secure in their relationship with each other and may also be financially and socially well supported too. At the other end of the spectrum, your relationship may already be in difficulty, and you may find that the additional stresses of caring for a child mean that the relationship does break down. Couples who work well together are generally able to communicate well and value each other’s contribution to the relationship. It is too easy to start feeling critical about what your partner does (or doesn’t) do, but remember there are several different ways to approach and solve a problem, not just one way, so take time to listen to each other’s points of view.

Whether you are out all day working, or at home caring for children, you may both find your day hard, and then find it hard to get the support you need from each other. If you are the parent who takes the lead in taking your child to outpatient appointments and giving them the treatment they need, you may find it hard to allow your partner to take over care because they do it less well than you. Your child may also begin to prefer that you do all the care. This, of course, makes it harder for your partner to become competent, as they don’t get as much practice and don’t have the same confidence when dealing with treatment.

Working together as a team can help share the burden of care but there are lots of obstacles that can get in the way of this. It can be hard to communicate your needs without resentment building up, and it can be hard to find any time just to enjoy being together. But not paying some attention to your relationship is likely to result in a build-up of frustration and communication difficulties.

Case Study – Ben (13 months old)

Sue and Tom have two children, Joshua aged three and Ben aged thirteen months, who has been diagnosed with eczema and severe food allergies. Tom works full-time and Sue worked part-time after Joshua was born and is now due to return to work from maternity leave.

Ben is very unsettled at night because of his eczema and is a very clingy baby. He has become very used to his mum holding him a lot of the time and so, when both parents are together, Tom tends to spend time with Joshua and Sue with Ben.

Sue has been looking into childcare and has found that the nursery that Joshua has been attending is not happy to accept responsibility for managing the safety and risk issues because of Ben’s allergies. Sue used to enjoy her job and wants to return to work but does not feel Ben is happy when left with others. She and Tom are constantly tired and sleep-interrupted and have been arguing a lot recently. Sue feels resentful that Tom has managed to keep working and feels he doesn’t understand how hard it is for her in the day. Tom feels his job is also quite stressful and that it is hard to come home because he also feels a bit inadequate around Ben who clearly prefers to be with Sue.

After a particularly stressful week, Sue becomes very upset and tearful when Ben won’t settle at bedtime, and angrily blames Tom for not helping her and accuses him of not doing his share and preventing her from going back to work. Tom waits until after the children have gone to bed, and suggests they need to find some time to be together and talk about what is going wrong. They arrange a time to have an evening in together and get a takeaway, and each takes it in turns to talk about what they are feeling frustrated about, and each agrees on one thing they can do to help the other. Tom agrees that he can spend a bit more time with Ben, getting more familiar with his routines and medical treatment, which will give Sue a break and help get Ben to trust him a bit more. Sue agrees that she will be more open with Tom about when she is feeling angry with him, rather than bottling it up. They will also spend some time talking together about how they are balancing work and home time, to see if there is a way of reducing stress for both of them.

When you are caught up in these cycles of resentment with your partner, the following strategies can helpful:

Take a step back

Difficult though it can be to ‘step back’ in these situations, it is important to try and find a way out of this cycle of resentment and perceived lack of support for each other. Someone has to take the first step, so try and be the one to take the initiative by suggesting you need to find some time to resolve your differences. Pick a moment when you are able to be calm and when your partner is most likely to be able to listen to your suggestions.

Straight talking

It is helpful to do some ‘straight talking’ – ask directly for what you want, rather than indirectly getting cross about what your partner hasn’t done. Don’t make assumptions about what your partner is thinking and don’t let resentments build up. It is all too easy to feel dissatisfied and to blame your partner even when you have not directly communicated what you need. No one can read your mind, so try saying it as clearly as possible. And remember to encourage them to tell you directly what it is that is making them so angry with you and to suggest what you can do to help improve the situation.

For example, rather than saying, ‘You’re late – I’ve already done their bath!’ say what you really mean, which might be, ‘Please can you take over now and read the children a story and get them ready for bed.’

If you are angry about something, it is usually more productive to wait for a calmer time to talk about it. For example, you may be really annoyed your partner is late home, but better to ask directly for the help you need now, and later on talk about how to manage when he or she returns late. For example, ‘I know you are sometimes held up at work, but please can you let me know so I can plan – otherwise I get annoyed because I was expecting you back by 6.30 and hoping for a break.’

Build in some time for yourselves

If you establish some ‘couple time’ right at the beginning when your baby is first born, this will become part of your normal routine. Many parents find it helpful to plan ‘date nights’ when they have some time for themselves as adults rather than just as parents or carers. It may be more difficult to find babysitters if your child is not well, which can make it hard to go out, but you can still plan to spend some time one evening a week catching up and enjoying adult conversation.

Key Points

•    Caring can be very rewarding but also very stressful.

•    Practical difficulties can also make it harder emotionally.

•    You need to take care of yourself in order to manage caring for your child.

•    Give yourself regular small treats – if you can, do something physical and social because this can help with making you feel more positive.

•    Seek additional support if you need it.

•    Set up ways of nurturing your relationships from the very beginning – it is easy for resentments to build up under stress and it is better to communicate and find out what you are both really thinking.

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