Managing Relationships

The following is taken from a much larger piece which is a guide to becoming a medically complex parent that I’m writing for my local area.

Jemima Alexander

Managing Relationships

Having a child with complex medical needs and disabilities affects almost every aspect of our life. This includes our relationships, both personal and professional. In this section we look at how it all might feel and offer some thoughts for how you manage relationships in your life.

Professional Relationships

Being able to communicate well with professionals is a key part of caring for your child. In the early period, learning what each person does and building a network of professionals that know you and your child well is important. Eventually you will develop a few trusted people who you know you can turn to when needed.

There are probably already a great many professionals in your life who you see in hospital, in your local community and at home. For some people, managing all these relationships is one of the hardest things about having a medically complex child. Communicating with them can take up time and energy you don’t have to spare, and it can be difficult knowing why you need so many people in your life. You might not even like some of these people, and not all of them will feel helpful. Many of them will see you when you are vulnerable, and this can feel like an invasion of your privacy.

Some of us worry that if we are not polite and grateful then our child won’t get the help they need. Others of us will feel that we need to be very assertive to get help. And other parents feel too embarrassed or proud to ask for what they need or else worry about taking up too much time and resources. These different responses come from a feeling that the professionals have the power to help our child, and if we don’t get it right, they might not help.

Most of us will carry around memories of conversations with professionals that have deeply upset us, for example when something insensitive was said when we were particularly vulnerable, or a situation that was handled badly. It can be very hard to move on from these memories because they wounded us so deeply.

Recollection:

The first I heard about our child having trisomy 18 was when a cardiology consultant called us into a small room late at night when our daughter was three days old. He decided that bringing a load of trainees along to watch was a good idea. We were sat down whilst the trainees were leaning against the walls. The trainees watched us receive this news at a time when we were incredibly vulnerable, particularly me as I had recently given birth and my milk was coming in. The consultant showed no empathy and also didn’t mention it was a life limiting condition, knowing that we would likely Google the condition once he left. I still find this memory very distressing and can’t let go of it.

What does good Professional Support feel like?

Take a moment to think about this. Which professionals have really managed to give you what you, or your child, needed? What did they do in those moments that made all the difference?

We’re all different, but these are some of the things that parents have identified:

• Feeling listened to.

• Feeling like my opinion is important.

• Making decisions together.

• Being seen as an individual and not just another mum or dad.

• Feeling like my child is in safe hands.

• Feeling like my child is important and seen as an individual.

• “Going the extra mile” to make things easier for me.

• Having my suggestions taken seriously.

• Being able to laugh with me.

• Using my first name.

• Being honest about things, and saying when they don’t know.

• Doing the things they say they are going to do.

• Not making assumptions about my child or me.

• Making me feel like they have enough time for me.

• Connecting with my child.

Recollection:

It was late evening, and we were in A&E and things weren’t right with our daughter. We’d rushed to hospital after she seemed to have an apnoea. We were confused and emotional and nobody seemed sure what to do with us. Then this lovely consultant turned up. She was friendly and kind but also very professional. She suggested contacting the doctor who worked at the children’s hospice, who somehow magically appeared soon afterwards. This doctor was also lovely, very practical and experienced. We decided together that going to stay in the hospice for a few days would be better than being in hospital. Both of those doctors have stayed in our lives and become people we turn to when something new comes along. I don’t think either of them have a clue how much difference their care and kindness made to us both that night.

So, how do you manage relationships with professionals?

When we are talking to professionals it’s not like we’re ordering pizza or having a conversation about getting the gutters cleared. We’re talking about our child’s health, or their other needs, or even our needs. Getting what we need from a meeting therefore feels very important and can become highly charged with emotions.

It’s not easy, but we can build up strategies for managing this aspect of our lives. We can try and ensure that conversations go as well as possible and we can take care of ourselves, so we are more resilient in these meetings.

Preparing for meetings/ conversations with professionals.

• Be organised about getting to in-person meetings on time and preparing the things you need to take with you ahead of time. Think about how you are going to get to the meeting and, if you drive, where you will park.

• Having said that, be prepared for professionals to be running late, never plan for a meeting to be on time!  Make sure you have packed enough food and supplies for you and your baby should the meeting start late.

• If possible, take a family member or a friend to meetings. They can help manage your stress levels and look after your child so you are free to talk, they are also an extra pair of eyes and ears.

• Write down questions ahead of meetings or conversations, and check you’ve asked them all by the end of the meeting.

• If you are part of any social media groups for children with trisomy then ask other parents for advice on what questions to ask and find out what treatments their child has received.

• Make sure you have eaten before you leave.

• Ask new professionals what they are there to help with.

• If it’s not clear to you, ask what the purpose of the meeting is.

• Take notes, and at the end of the meeting, talk through what you have understood has been said, what is going to happen next, and when.

• Don’t be afraid to go over anything you are unclear about.

• If you find it can be hard to be assertive or feel like you are being a nuisance, it can help to think you are doing this for your child not for yourself.

• Try and make sure you don’t have much else to do on the day of big meetings. They can be exhausting.

• If it goes wrong then be kind to yourself. These are pointers but there will be meetings where you are late, tired and things don’t go according to plan.

• Remember it’s not all on you to get this right, the professionals are meant to ensure meetings go well, and they are not emotionally invested in the outcome in the way that you are.

Getting through unexpected phone calls

• If professionals call at a bad time and the conversation can wait, it’s OK to ask them to call back at a time that works better for you.

•  If you are unsure, ask what the conversation is going to be about and how long it might take.

•  If having the conversation by email or text is better for you, then ask for this.

•  If you do go ahead with the call, notice how you are feeling. If you are already feeling stressed, then try to take care of yourself during and after the call.

•  If you are feeling overwhelmed during the call don’t try and multi-task. Instead, stop and stay still, maybe try giving yourself a hug or a stroke whilst you are talking, or cuddle your child.

• After the call, reach out to somebody you trust to let it out. Or spend a couple of minutes doing something to get the feelings through your system - write, rant, dance wildly, swear, snuggle up next to your child or allow yourself to zone out for a bit.

Relationships: Family and Friends

It’s likely that becoming a parent of a medically complex child affects your closest relationships as well. Some of the people closest to you may feel out of their depth with what you are going through and find it hard to know what to say to you or know how to help. You might also find that you are changing too, and this can affect relationships as well.

It's also worth saying that for your very closest family; parents, siblings, best friends, they can also be really struggling with grief. This is often especially true for Grandparents who are experiencing both their child and their grandchild going through so much. This might be hard for you if their own grief is making them less supportive, or act in ways that feel unhelpful.

Talking to friends and family

Many people process difficult experiences by talking about them, and when we do this with somebody who is good at listening, it can really help. However, our experiences can be so different to other people’s that it can be hard to share them. We might try, but be met with unhelpful responses. Some people will start “bright-siding” (“Well at least…”), or problem solving (“Have you tried…”). Or our words might be met with an awkward silence or a change of subject. This can be upsetting and put us off talking about things.

Some of our memories and fears will be very painful and we might not feel able to talk about them at all.

People may find it hard to be with the heartbreak of what is happening to you and your child, so they try and fill the sad space with suggestions, positivity and waffle. Or they may find it all hard to relate to and not know what to say. Some people will say “I’m here whenever you need me” or “if there’s anything I can do…”, and others will say “I don’t know how you do it” or “I can’t imagine what you’re going through”. These comments are well meaning but they make us responsible for asking for help, which many of us find hard, and they can leave us feeling lonely because people are basically saying they can’t relate to us.

However, if we don’t share some of our lives with the people that care for us, they won’t ever get the chance to get better at supporting us.

It’s about learning how to use the friends and family we have in the best ways. Some people will be good for talking to, others are better on practical support, and some people are best avoided when things are hard.

Some thoughts:

• We might need to help our family and friends by giving clear instructions on how to look after our child. When people get involved in our child’s care and get to know them, they begin to understand more of what we are managing and feel more able to help.

• Our babies may well not always behave like typical babies, so we may need to explain what our child’s behaviour means. It might be completely obvious to you how your child is feeling, but it won’t always be to them.

• Notice who you feel more comfortable and relaxed with when you are with your child. There may be some people who just know what to do, or don’t feel embarrassed to try.

• Almost everybody will have people in their lives who are insensitive, who will go on about something tiny when you are dealing with something much bigger. Don’t spend time with these people when you are feeling fragile.

• You may find support in unexpected places.

• There will be things you can only ever talk to other parents about who have been through similar experiences.

Recollection:

Right from the beginning there were some people who I just felt calm around, with those people I never felt self-conscious of my baby or the things I had to do to look after her. Mostly these are people who’ve been through difficult things themselves, like losing somebody they really love.

Partners/ Spouses

Even when there are no health concerns, a new baby puts a lot of stress on a relationship, and for parents like us the stress levels can be extreme. And with so much extra to do to care for your child there will be much less time to connect to your partner/spouse or make sense of things together.

And if this is your first baby then you will also be trying to work out how things work now that you are three rather than two. How to become parents is also a big transition.

You and your partner may react to stress and grief very differently. You might not be in a place where you can easily understand each other. At times you might find life so hard that you have little capacity to think about anything but your needs and/ or the needs of your child/ren. All this can be very hard on relationships.

If one of you is doing much more of the caring, perhaps because the other one has to work or manage your other children, it can create an unbalance. The person doing the most caring may feel they have too much responsibility because they hold all the details of the child’s care needs. At the same time the other person may feel less confident about looking after their child, or less aware of what needs doing.

On the other hand, your partner might be the only person who really gets it and the experiences that you go through can bring you together in new ways. Sometimes the fact that there is so much that needs doing can make both parents change positively in order to meet the demand.

Some thoughts:

• Try and take a little time to connect most days. Even if it’s just a hug, holding hands for a bit or making regular eye contact. Try and eat together when you can, watch a programme together, and talk. Try and give each other a little bit of time off, even if it’s just fifteen minutes.

• Your partner might not always seem like the person you knew before this happened. Stress, fear and grief can turn into anger, moodiness and seeming hard to reach. You will take things out on each other at times. It can help to try be honest with yourself and apologise when you know you’ve been unreasonable.

Recollection:

Until our child was born, I’d never seen my partner unhappy or stressed before. It took a year or so to realise that he hadn’t stopped loving me, but he was heartbroken. We had some awful arguments bought on by stress and our different ways of dealing with things. But those arguments are much less often now, as we’ve learnt how we each respond to the pressure of it all. We mostly work well together and know each other better because of what we’ve experienced.

Your other children:

It can feel overwhelming trying to meet your other children’s needs as well as those of your new child. You might not know what to say to them and how much to tell them about their new sibling, especially when you know they might not live a long life.

• Be honest and clear when they ask questions, or when you have something to tell them, even when honesty means saying you don’t know or telling them something difficult.

• But honesty doesn’t mean sharing everything: make sure you simplify things so you are telling them things at a level they can understand and avoid telling them things that they don’t need to know.

• Try not to promise things you can’t be sure about.

• Children often like to feel included and helpful, so if they want to be involved in caring for their sibling then find a simple way to do this, such as opening out nappies or fetching things. You can also involve them in simple decision making, like what their sibling should wear that day, or what order you do things in.

• You might need to ask friends or family to look after your other children or increase the time they are in childcare or after school clubs if you can’t look after them as well as your new child.

• At the same time, find ways to continue some quality one to one time with each of your children, try and make this time part of a regular routine.

• Your children might be very unsettled by the changes and worry in the house. They might behave differently to normal, which can be hard on you as you might need to find additional energy to manage their behaviour.

• When you lose your temper then apologise.

• Give your children opportunities to have some control over family life.