Living With Vasculitis

Caring for a family member with vasculitis

loving black coupleVasculitis does not just affect the patient. It has consequences for carers, families and also friends. Carers also face difficulties and problems dealing with the vaculitis patient. These vary depending on the stage at which the patient is at any particular time.

The problems and difficulties encountered at first diagnosis change over time. Particularly at the diagnosis stage the carer often feels as bewildered as the patient. Below are some of the difficulties encountered by carers.

Initially before and during first diagnosis and initial treatment

There are many problems for carers when coping with a very ill person who has no idea what is happening to them whilst the carer also has no idea what is happening, these include:

  • Trying to take on board everything the medics are saying because the person with vasculitis is too ill to listen, talk, comprehend or is possibly unconscious
  • Nursing a very ill person who is probably bed ridden or in hospital and the carer is probably trying to hold a job down and also taking care of the family at the same time
  • Trying to explain to the immediate family what is happening when the carer doesn't have a clue themselves
  • Coping with a very ill person who is in panic because they think they might die and the carer is also thinking the same, but explaining that everything will be ok and also trying to convince the family that the loved one won't die
  • Helping the ill person to come to terms with the initial diagnosis and treatment whilst the carer is trying to come to terms with it themselves
  • Coping with the big mood swings, denial, anger, depression experienced by the vasculitis patient
  • Ensuring that the ill person does not excluded the carer physically and emotionally

After the initial diagnosis and treatment

After initial diagnosis the carer and the one being cared for often face additional and on-going problems and difficulties. For the carer these can include:

  • Helping the vasculitis patient to come to terms with taking masses of drugs whilst trying to come to terms with this situation themselves
  • Trying not to worry about the future even though it is obvious that there may be difficulties, ie family, being able to work, paying bills, obtaining benefits etc
  • Trying to be supportive with all hospital appointments and visits whilst possibly trying to hold down a job and juggle the family (school etc)
  • Still coping with the denial. Anger, depression, sadness of the vasculitis patient
  • Trying to convince the family that although the ill person may appear to be well they are not perhaps as well as they might appear
  • Looking for support within the family
  • Not knowing where to go for support and advice outside the family
  • The carer wanting to talk to someone who knows how they feel
  • Helping the vasculitis patient to cope with any eventual relapses/flares and never being sure if the problem is the vasculitis or something else causing the problem
  • Worrying from day to day if the person who has vasculitis is ok and coping.

Understanding Vasculitis Factsheet

For the newly diagnosed patient, their carers and family and friends, our "Understanding Vasculitis Factsheet" will be a starting point to learn about the basics of vasculitis. You can download the factsheet at:


New carer's support contact details

If you are a carer and would like to talk to or contact other carers , please contact Susan Mills susan@vasculitis.org.uk or telephone the VUK helpline 03003650075

Information for carers from NHS Choices

Carers and Care Act 2014 - This Act is to become law in April 2015. You can read about what this entails at: Carers and Care Act 2014

Carers' update from NHS Choices - Care and support is designed to help you get the help and support you need as a carer. This page from NHS Choices offers all the information you should need to get the financial help you’re entitled to, as well as advice on getting a break from caring, going to work and much more. New to Care and Support

Getting help - Caring for Carers - Caring for a disabled relative can be a rewarding experience, but without the right support, it can also be difficult. However, there are many resources available that can make an enormous difference to carers. Caring for Carers

Carer's breaks and respite care - Care and support guide - Information about replacement care, respite care, and on breaks for carers. Carer's breaks and respite care

Some organisations which offer carers support and help:

  • Carers Trust and the NHS "caring for carers" gives advice, support and respite for all carers nationally. There are local offices throughout the UK
  • Bernardo's gives advice support and respite for child carers
  • CarersUK offer advice and support

Useful links

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News

An App to Support Vasculitis Patients and Research

21 Sep 2017

New app to help Vasculitis manage their condition

Emotions, Relationships and Sexuality

21 Sep 2017

100-page booklet available online or in print

Art Inflammation and the Illness Experience - Shanali Perera

09 Sep 2017

Shanali Perera gave a presentation at the the Spring Vasculitis Education Day in March 2017

Events

Gill's 40 Things At 40!

01 Oct 2017

40 Things in aid of VUK

Cardiff Half Marathon

01 Oct 2017

Running for Vasculitis UK

Vasculitis Support Group West Midlands

08 Oct 2017

The West Midlands Support Group are meeting on 8 October

Chester Marathon

08 Oct 2017

Michael Kingsbury is running for Vasculitis UK

Rare Disease Patient Network Meeting

18 Oct 2017

Free event in Cardiff

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