Immediate family relationships

• By its very nature, caring for a family member can have a significant impact on family relationships. Clearly this impact can be positive. In particular, the relationship you have with the child that you care for will be strong and special. The support you offer ensures you have a particular bond.
• However, it is also common for carers to describe a strain on relationships with other family members or with friends as a result of the pressures of looking after a loved one.
• This can include an impact on relationships with other immediate family members, other than the person cared for. Caring can clearly require difficult decisions about your prioritisation of time and attention, as well as about what care and support is needed. It is unsurprising then that caregivers commonly describe it as a cause of family disagreements that can be difficult to resolve.
• We discuss the potential impact on a sibling of a young person needing significant care in another module, but this can include episodes of frustration about not being able to do things together as a family, feeling that their parents don’t give them enough attention, or feeling unable to ask for help as their parents already have enough to worry about. All of this may cause arguments or impact on well-being, if left unchecked, and in that section we will offer some thoughts on how to monitor or address this.
  

  “My oldest boy is at grammar school and he needs support with homework and projects, things like that. His sibling suffers immensely, he has his own disability but his own disability is just so slight in comparison to his brother which does, I have to say, make him super independent because he sees what we go through with his younger brother. It’s juggling all the balls and giving everyone a slice of you, never mind the partner who is at the bottom of the list.”

• It is also important to acknowledge that caring for a child with a disability can put significant strain on your relationship with your partner, as you juggle the challenges of care alongside work or looking after other family members, and both prioritise your child over each other or your relationship.
• If there is a primary caregiver – carrying out the majority of the caring of your child – there can be particular strain on their relationships with other family members. Caring remains a heavily gendered role. While there are clearly many exceptions, it falls predominantly on mothers to care for children with disabilities. This may be an accepted and positive decision within a family about how care should be provided. It may be a reluctant but necessary one based on differential earnings.
• Whatever the cause though, it is important to reflect repeatedly on what this means for how care is provided, the stresses and strains this brings on each family member, and the need each of you has for support.

How to talk about your needs and concerns

• While intended to support those who care for an elderly relative, CareZare offer some tips and ideas for managing family tensions during caregiving that apply here too.
• Most notably they highlight the importance of ‘figuring out what you need as the primary caregiver’. This means thinking carefully through the roles you might want to undertake – particularly where you find it important ‘to be in control’ of that aspect of your child’s care – and those where you would most value help from other family members:
  • ‘Can someone else take over the role of providing transportation for appointments?
  • Can someone provide relief for you at designated times and days on a weekly basis?
  • If you are truly just seeking emotional support, express that.’
• Linked to this they emphasise the need to ‘Be clear and direct’ about the help you need:
  

  “Because we’re human, we have a tendency to assume that people know exactly what we’re talking about, what we mean, and what we’re thinking at all times. However, every individual has a different communication style, which is important to remember when you’re dealing with a sensitive matter. If you need something, be clear about it.”

• Of course, this can be challenging, particularly at points of fatigue and stress, when you feel most let down and unsupported, or when something has just gone wrong with the care and support you anticipated being offered.
• Finding the appropriate times and means to express your views and ask for timely help and support is obviously key, and will save you from future problems: ‘If everyone is on the same page, then tensions will likely decrease over time.’

Seeking specialist support

Sometimes formal help and support is needed. You will not always be able to resolve family conflicts yourself. There are services and professionals able to help with this. Carers UK offer helpful pointers here, suggesting three key lines of support:

• Family mediation: Mediation is essentially a conversation between family members with the help of a trained, independent, impartial mediator. Their role is to help you to understand the causes of any dispute, to appreciate each other’s perspectives, and to reach agreement on a way forward.
• Counselling: Family counselling, or family therapy, involves a trained professional able to help recognise and respond to any psychological, emotional and behavioural issues that might be impacting on family life. The counsellor or therapist will work with the family members to re-build a supportive and healthy relationship.
• Talk to your GP: Mediation and counselling can come at a cost, but your doctor may be able to refer you directly to such a service. They may also be able to provide advice or direct you to other local services and activities that could support you.

Extended family, friendships and social networks

• Many carers find that caregiving responsibilities and commitments can lead to isolation from extended family, particularly when they live further away, and so that travelling to or hosting a visit from them may be difficult.
• If you are the sole carer for your child, this may amplify these difficulties. Providing care can increase a sense of detachment from friends.
• When caring is a priority, it may limit your social life, leading you to say ‘no’ to invites to social events, and therefore missing out on the things others are enjoying.
• It can also be that family or friends seem to withdraw, perhaps not knowing how to talk to you about your caring role.
• Carers UK offer a number of suggestions, provided by carers that use their forums and services, as to how to cope ‘when it feels like friends and family are drifting away’ and no longer giving you the time or support that you need. These suggestions include:
• Talking to family and friends about how you feel, including explaining how their disengagement from you and your life have affected you. If this is difficult, they suggest engaging someone else in your family or a mutual friend to discuss the issues with you and with them.
• Asking ‘for a small amount of help’, for example, ‘with shopping or staying with the person you look after for a short time to allow you to pop out’. The carers suggest that this helps people to understand the challenges you face, and more importantly the benefits that a little of their time and support can offer you: ‘By telling them what a difference it has made, it might result in them offering to help out again.’
• The forums and supports of Carers UK can also be helpful here. Talking to others who understand and have experienced the same things as you can help you think about how to approach things.

“One thing I think is really important for you to take away from this is peer support, it’s so important. I know I support parents who maybe have younger ones or whatever or have similar conditions to ourselves. Peer support is so important, some parents will have a greater capacity to think about the future than others and some parents will live in the moment, live for today because that is all they can think about.”

Tackling isolation

• With the experience of detachment from family and friendships, it is usual for carers to feel a sense of loss for the relationships or social life that they used to have, or to feel isolated and increasingly alone. This isolation can have a significant impact on mental health and well-being; this isolation and the impact on your well-being can be at their greatest at the times when you need the support of others most.
• A report by Contact a Family shows just how prevalent such feelings and impacts of isolation are. Among 1,148 families with disabled children who responded to their survey:
  • 65% reported feeling isolated frequently or all of the time
  • 72% had experienced some difficulties to their mental health and well-being due to isolation
  • 49% had been so unwell that they had needed medication or counselling.
• The report suggests a range of reasons for this isolation, and particularly highlights the influence of a lack of services and supports and the importance of more holistic assessments and support packages for carers. We deal with some of these issues in other parts of this programme.

Of most relevance to this section is the finding that families with disabled children ‘feel less isolated when they have contact with other families in a similar situation, and have somewhere to turn for information and advice.’

“I am on my own, I was to put an emergency plan together, I couldn’t fill it in because I have no family. I have no one. No one wants to take on 24/7 caring, your neighbours don’t want to know, family don’t, so what are you meant to do?”