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Being a long distance carer


by Sue_maggies

Many of us live away from the rest of our family and parents. A sign of modern times is that geographical distance often comes with ‘growing up’. We move away to develop our lives, university, careers, be with a partner, and for most of us this works well. People cross counties and countries – never feeling completely cut off, as technology allows us to keep in touch as often as we need or wish.

However, when one of our family or friends becomes ill – suddenly the distance can feel a burden – a challenge. The news that a parent or other family member has a cancer diagnosis can create a maelstrom of emotions. It can feel even worse if they are becoming frailer and less well. You may feel torn between the duties and daily life activities in your current home – work, children, partner – and the urge to be with the person who is unwell.

Your feelings as a long distance carer

Guilt can creep into our hearts and minds – and this can be about a number of issues. You may feel guilt that you live away, and worry that other family members who live nearer are carrying the caring load. You may feel guilt about having to put work, your own family and partner, first – or paradoxically feel bad about being with the person with cancer, whilst other responsibilities feel neglected. Juggling responsibilities and feeling stretched in many directions, can take its toll – causing stress, lack of concentration, sleeplessness and anxiety.

You may also find you feel out of the ‘information loop’. Parents often feel they need to protect their adult children from the emotional and physical challenges they’re facing – and when living away, this can be frustrating. Medical decisions, clinical information and hospital appointments may take place without you there, and you may feel left out – willing to help, but unable to be there. This can sometimes create situations where communication goes awry.

Families may have been coping in their own way…but if you’re visiting less often, you may see physical changes or perhaps deterioration, and this can be a huge shock. There can sometimes be a temptation to want to ‘fix’ things, and this can occasionally cause misunderstanding and resentment in those who are geographically closer.

If you’re the only relative, or friend, who has ultimate caring responsibility – then the worry about ensuring they’re OK when you’re not there…but also keeping your own life intact…can cause pressure. There’s also the emotional component of not being able to be part of the ‘big stuff’ – discussions about the uncertain future, the possibility for some, that recovery may not be possible…and all the heartache that brings.

Tips for long distance carers

Is it possible to care from a distance? Yes - but it can take some negotiating, and may feel out of your control at times. I’ve put together some ideas which may help:-

  •  I’ve talked about technology. This is where it can be a boon – keeping communication open, and helping you feel closer to the situation. There are various ‘apps’ available, which can help keep everyone in the caring ‘loop’ in touch with each other. Carer’s UK’s Jointly App, for example ‘makes caring easier, less stressful and more organised by making communication and coordination between those who share the care as easy as a text message’. It means task delegations, information updates, and reminders can be shared, so that near or far, you can all stay in touch and support the person with cancer.
  • Texting, skype, phoning, facebook, what’s app - regular contact will help you feel less distant, and help you monitor when you might be needed. It also helps the person know you’re thinking of them, and can support siblings/carers/other family members who may be be more directly physically involved. Help them with any long term planning, and see where you can help, even from a distance. Perhaps some online shopping, helping them with information gathering, and offering them a break.
  •  If possible, negotiate that you can go with the family member to key appointments – this isn’t always as easy as it sounds. It is a good idea to let your work/college/etc know that you have an ill relative who you are supporting, and ask for some flexibility in being able to go to appointments etc. Perhaps taking some days off to accompany someone on their first chemotherapy, or time with them whilst they recover from treatment?
  • Get to know the support network that is around for the person at home. These can be formal contacts…GP/social worker/carers, and the informal network of friends/family etc. Asking them to let you know if there seem to be any problems, or things that need addressing can be invaluable. If it’s someone who is independent or who has a partner, then your role may not be so much as the leader, but as part of the team.
  • Emergency planning – when someone is unwell, it’s helpful to have a mental action plan that you can put in place if you’re needed in a hurry. This may need co-ordination with work colleagues, children’s schools, partners, etc – warning of the possibility that you may have to react quickly. Have key emergency numbers available, and ensure your family member knows what to do, and who to call. Plan routes home, think about potential travel arrangements, and how quickly they can be set up. Liaise with the carers/GP/ and the person who is ill – so that they do call you if needed. It may be that with the person’s permission, your details are recorded as one of next of kin, and your telephone number and contact details be made available.
  • If possible, try to arrange physical visits, where you can connect with the person with cancer. It gives you all a focal point, and something to look forward to – and a chance for you to see how everything is being managed. Give yourself time to relax and enjoy their company – keeping the old familiar bonds open, and being able to feel part of the situation.
  • Look after yourself too. This is a time that will take emotional and physical energy, and you’ll need time to absorb the situation, and maybe talk with others about how to manage the daily stressors. Being a distant caregiver may mean that you’re not able to access the psychological support available were you the caregiver living close by. You could drop into your local Maggie’s Centre, and have support for you, as well as practical advice and information for you as a long distance carer. You can also visit us here online and join in the conversations, as well as access helpful information.
  • Try not to let guilt get you down. Accept that there are things you can do to help, and there’ll be things you can’t do. The reality is that many people live a long way from those they love – and the bonds of loyalty are often stronger than geographical distance. There can be internal and external factors pressing your ‘guilt’ buttons. Family members can implicitly or explicitly hint that they would like you home – and good communication should ensure that everyone works together to make you still feel part of what is going on.

People don’t always understand the anguish we go through when someone close to us emotionally, but many miles away in distance, is facing a life challenge. It’s hard…and something that doesn’t always get talked about. I would love to hear your own experiences, tips and advice for the army of people who live away from home when cancer calls. You’re not alone…

Warm wishes

Sue

Resources

9 tips for coping with remote caregiver guilt      Care.com

Long distance care giving     Cancer.Net

Getting started with long distance care giving      National Institute of Aging   

Helping a loved one with cancer long distance     National Comprehensive Cancer Network

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