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Social relationships

Caring can place a big strain on families. Carers sometimes say that friends and family disappear once caring begins. This can lead to isolation and resentment. In this article we examine what happens when your support networks fall away.

What family and friends stay away

A 2010 Carers Week survey revealed that many carers can no longer rely on relatives for support, as these relationships have suffered as a result of caring. Three out of four people surveyed said they had lost touch with family and friends.

As caring can be tough, it can be hard to cope should support fall away when it is needed most. Carers UK spoke to carers about this and the steps they have taken to cope better.

Karen cared for her Nan. She says:

“Friends and family soon get fed up of asking you to go places or visit them to be told the same thing – ‘I can't because there's nobody to watch my Nan’, or ‘I can't because my Nan has an appointment somewhere’, or you simply say no because you are so tired or you need to catch up with chores, shopping etc."

Friends and family soon get fed up

Karen also feels another factor is at play:

“There's also the aspect of friends and family not being able to cope with the disability and it makes them feel uncomfortable – they don't know if they should talk about it. They usually have no understanding of how caring ties you down.”

Responsibility

The problems don’t end there. Carers tell us that friends and family no longer visit, choosing to phone instead. Others say that when they do have visitors it can be hard to entertain when there is so much to do for the person you are looking after. Linda cares for her mother-in-law. She said:

“My mother-in-law’s daughters like to drop in and surprise her. It stresses me out because I have to be on hand to provide accommodation, cups of tea and food at the drop of a hat.”

Another carer, Sandy, thought that maybe help wasn’t offered because friends and family could be worried they don’t have the right skills. She said:

“I think we also have to keep in mind that for many people, doing things for a disabled or ill person is viewed as a big responsibility and they may not feel sufficiently confident about this, even if we show them how.”

Jim, a carer for his wife has another explanation:

“Our social life has been evaporating over the last couple of years. We invite friends around but they don’t always commit to a time or date. We think the reason is that people like to reciprocate, and we can't visit them, because we can't get my wife’s power chair into their houses.” 

Some take a different view. Rosemary said:

“I have to accept some of the blame myself. I’ve had the opportunity to go out with friends but I assumed I wouldn’t have anything to talk about except hospitals and illness.”

Some carers put it down to a lack of understanding. Clare, a carer for her daughter said:

“My family has been a joke. I’ve tried explaining why my daughter acts the way she does but they don’t listen and aren’t willing to learn. They don’t understand, they don’t offer to help and they give us no support.”

Common amongst many carers is the idea that seeing a loved one suffering is just too upsetting for some people to cope with. Lucy cares for her mum. She said:

“When my mum had a stroke years ago all her friends disappeared. Their excuse was it was hard to see her like that and it was hard to know what to say.”

Coping

But how do you cope when friends and family do start to drift away? We asked carers on our forum and Facebook page to offer their suggestions. Lots of carers suggested reminding family and friends that they could just as easily find themselves in the same predicament. Others said that if family and friends couldn’t accept them and the person they were looking after as they are, then it’s their loss.

Rachel, a carer on our website forum said, “A friend let us down. Now we just exchange Christmas and birthday cards and I’m happy to accept that is all the friendship will be now. Life is too short to waste effort on people that are not rich or deep enough for your love.” Some suggested a more simple solution – that family and friends might think they’re doing the right thing by staying away and you need to let them know that you need their support.

What you can do

Try asking for a small amount of help –  help with shopping or sitting with the person you look after for a short time to allow you to pop out. By telling them what a difference it has made, it might result in them offering to help out again. It often feels easier to ask for help with a physical ailment than it does with an emotional one. But emotional problems can be painful too, and the stress they can cause often leads to physical ill-health if you do not deal with it.

If conflicts are causing problems in your family there are various ways of seeking help. If you can, try to find out what is really behind your family’s and friends’ reluctance to be a part of your life. Are they unsure how to help? Upset or angry? Or do they just not care? Discovering the truth will hopefully help you to understand their behaviour and enable you to work out what kind of support, if any, you can expect from them in the future.

Don’t forget to explain how you feel. Take the opportunity to tell them how their behaviour affects you. If, after to speaking to friends and family, you do not reach a resolution, or if you feel you can’t confront them, consider discussing the matter with someone else in your family, circle of friends or community who has an independent perspective and may be able to look at the situation in an impartial way. It can also be useful to talk to other carers who will know what you are going through and understand how hard it can be. Consider joining Carers UK’s website forum.

Finding help

Help from your doctor

You may find that your GP is helpful, particularly if he or she knows your family well. They may also be able to refer you on to other sources of help such as mediation or counselling.

Mediation

Mediation is increasingly being used to resolve family problems. A mediator will act in an independent, impartial way to help all parties try to understand the other’s point of view. They should act in a non-judgemental way and confidentiality is extremely important. They will not make any decisions but will try to get the parties to reach their own resolution and understanding of the situation. In some areas there are community mediation services which are free of charge. Not all of them undertake family mediation so you will need to make enquiries. There are also private mediation services which make a charge for mediation.

Counselling

Counselling is also worth considering. This is particularly the case if you feel the problem is so great that it is affecting your mental or physical health. It may help you understand your own emotions and make it more likely that you can work with other members of the family to resolve the issues.

Sometimes it is also the case that a resolution cannot be reached, or at least not in the short term. You will need to come to terms with that or find different ways of managing the problem.


This article first appeared in Caring – Carers UK's exclusive members' magazine.

Family relationships


Caring for your disabled child

Having a child brings a lifelong committment, but with an expectation that when your child grows up, they'll need less care from you. When your child is disabled things can be very different. You are both a parent and a carer. Accessing the help and support you need can be a battle.

Sound familiar?

Facing the future:

"After Josh was born I went through this period of adjusting my dreams for him. It's not just that he'll never play for United, but the little things like will he ever be able to tie his shoelaces. Nowadays I find myself worrying so much about what will happen to him when we're gone. What kind of a future will he have?"

Being fair to your other kids:

"I do feel bad for my eldest daughter. Because of Megan's disabilities, so much of our life is about Megan - Megan's routine, Megan's diet, Megan's hospital appointments. Rosie is so sweet about her sister but I know it must affect her. I try so hard to make time for her too, but Megan's care is so intensive. Rosie does miss out and the guilt is horrible."

Making time for your relationship:

"It's so hard to find time for us as a couple. Adam's behaviour is very challanging and it makes it almost impossible to find a 'babysitter'. Couple time is very hard to come by."

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Caring for an elderly parent

Helping our parents adjust to old age is part of life's cycle. Sometimes slowly, sometimes suddenly, we find ourselves with more and more responsibility for looking after them. It can start with small jobs – the garden, the shopping and over time it becomes more intensive. We may watch our parents caring for each other and see them start to struggle. Our instincts are to want to help, but that help might not be welcome. Adjusting to these changing roles is a big emotional step for both parent and child.

It can be especially hard if personal or intimate care is needed. There can be so many practical things to do - organising replacement care, dealing with an army of 'professionals' (none of whom seem to realise you have a life too), and not forgetting your other responsibilities like your job, your family, your friends, your social life. No wonder caring is one of the most stressful things we can do.

Carers' voices

Changing roles: 

"Throughout my life mum's been there to look after me, even after I got married Mum was around to help me and support us. Now the tables are turned and it's my turn to look after her. I don't begrudge it but sometimes I miss my mum as she was."

Juggling care with work: 

"It's a full time job trying to help Mum organise her care - we've had umpteen meetings with doctors, consultants, therapists, social workers - whilst I'm also trying to hold onto my own job. I just can't afford to give up work - my eldest has just started Uni and we need the money. My boss has been understanding but I hate feeling like I'm letting them down."

Dealing with the rest of the family: 

"Dealing with my brothers is as much of a stress as dealing with Mum. One of them seems happy to let me get on with it, he says it's "too painful" to see Mum like this and that's why he doesn't visit. My other brother is the opposite, he lives 200 miles away but he phones me daily wanting updates and sticking his oar in with advice on what I'm doing wrong. He means well but it drives me potty."

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You and your partner

Most couples have a lot on their plate. Whether it's paying the bills or juggling work and family, it can be hard to find time for each other. But when disability or illness happens to one of you then things can get a whole lot harder.

Suddenly there are a million more things to do – organising care, sharing your home with careworkers, dealing with an army of medical professionals. It's important to acknowledge that caring for the person you love can put strain on your relationships.

There is another side though. Many couples who have faced long term illness or disability will tell you how it has brought them closer and deepened their love in ways they never thought possible. But everyone is different and much might depend on the nature illness or disability you are dealing with.


Changing roles

"I miss my partner even though he's still here. I love him to bits and I feel guilty even thinking it, but I do miss how it was. That closeness we had before. We're still close but it's different somehow. He used to protect me and I leaned on him but now I'm the one who has to be strong and protect him. It's not easy to change."

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Feeling lonely

"I'm the one keeping it all together but no one looks out for me. Even allowing myself to think like that feels like I'm betraying her, like I'm being selfish. On my darkest days I even think about having an affair. I'd never actually do anything but I still feel this terrible guilt."

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Becoming isolated

"Since Geoff had his stroke we barely see our friends anymore. Everyone was really keen in the first few weeks but it's dropped off since. We don't get invited out anymore and a lot of the time I'm too tired anyway. Geoff's routine is important so we don't like to break it. The end result is we're often stuck in this house for weeks on end and barely see another person."

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