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Carers

Carer information about transplanted patients

Transplantation is an exciting and hopeful process, and carers have an active role in the healthcare and recovery process of their loved one. While caring can be deeply rewarding, it can be emotionally and physically draining too. The responsibility of managing medications, physical care, recurrent visits to doctors and sometimes long-drawn and frequent hospitalisations can be overwhelming.

You might find it difficult to consider your own needs while you immerse yourself in the caring process, but if you don’t, your health may begin to suffer.

Caring for yourself

Drinking enough and eating healthy: Make sure you drink plenty of fluids, especially water. It’s easy to ignore signs of thirst and hunger.

“Drink 8 glasses of water to remain hydrated” is a goal to keep in mind, although your needs can vary around it. Fluid requirements vary with each person, but trust your thirst.

Aim at having regular meals that include plenty of fruits and vegetables. Cook in bulk and freeze the extra food to use when you’re rushed and unable to cook. Don’t forget to treat yourself once in a while.

Keep physically active: Any little activity will add to your wellbeing. Aim to get out once a day for fresh air and to get moving. Exercising will help you feel more energetic and provide a break from caring activities. Try simple stretches or even a 30 minute walk on most days in the week.

Relax: Try to take 15 minutes to sit and relax, or listen to music. Yoga, tai chi or even simple exercises can help, as can meditation and breathing techniques. Check out these quick relaxation techniques and relaxation exercises.

Carers can feel a range of intense emotions leaving them drained. Stress and anxiety coupled with the demands of caring can be challenging. Remember, it is not selfish to focus on your own needs.

Planning in advance to take the stress away: Enquire about the level of care and support your loved one will need after discharge. Most recipients are required to visit the hospital frequently for at least a month after discharge. These visits become less frequent as they recover and stabilse.

If you live in a remote location or at a considerable distance from a hospital, think about how you’ll manage these hospital trips. Relocating closer to the hospital may be an option. You may be eligible for patient assistance travel schemes that are offered in each state.

Plan while your loved one is on the waiting list:
Ask the medical team a few questions

Rest and sleep: Inadequate sleep and lack of adequate rest can add to the pressures of caring. Aim to get 6-8 hours of sleep to refresh and rejuvenate. Top it up with naps during the day if possible.

If you’re stressed or feel your mind is overactive and unable to unwind, there are simple steps you can take to calm down. Skipping stimulants like coffee or caffeinated drinks, avoiding big meals before going to sleep, exercising during the day, practicing relaxation techniques and making sure the room is dark at bedtime are some things that can help.

Watch out for signs of stress: Common symptoms include headaches, neck pain, backache or other physical ailments like heartburn, stomach upset, vomiting, chest pain, nausea, bloating and abdominal pain. You might feel tired and overwhelmed all the time, become easily irritated or angry, feel sad often and lose interest in the things you enjoyed.

If you feel you’re not coping and need help, talk to your GP, contact the Commonwealth Resource Centre to be directed to your local support centres or call 1800 242 636 (free call from local phones, mobile calls at mobile rates).

Take a break: A break, even just for a few hours, can make a world of difference and help sustain your functions as a carer. Contact the Commonwealth Carer Respite Centre on 1800 422 737 during business hours or 1800 059 059 for emergency respite support outside standard business hours (freecall except from mobile phones).

You can also contact Carer Gateway on 1800 422 737 for help.

 Connect with other carers: Sometimes just talking to someone can ease your mind. Connecting with other carers can be less isolating. Carers often connect in hospital waiting rooms and during check-ups at the clinic.

Tx Parents Connect is Transplant Australia’s online peer support group for primary carers of child, teen, and young adult transplant recipients.  If you are interested in finding out more, click here.

If you are looking for a different type of support group, Carer Gateway may be able to direct you to a carer group. This interactive service finder can connect you to local support services.

Tips to make life easy

  • holding handsGet familiar with medications, doses and their storage
  • Keep scripts so you don’t run out of supply
  • Ask about the side effects of medications and their interactions with food
  • Medicines like prednisone causes hunger cravings. Stock your house with healthy foods and encourage a transplant friendly diet. Check out our healthy recipes
  • Maintain strict standards of hygiene to remain safe from infections and communicable disease
  • Keep unwell friends or family away and wear a mask if you have flu-like symptoms
  • Vaccinate yourself and those who are likely to be in close contact with the recipient
  • Watch out for signs of irritability or low moods in your loved one. Some transplant medications may cause mood swings. Talk to your social worker or GP if you’re concerned

If you feel you’re not coping and need help, talk to your GP, contact Carers Australia to be directed to your local support centres or call 1800 242 636 (free call from local phones, mobile calls at mobile rates).

The translating and interpreting Service (TIS) can help you if you need assistance with a language other than English. TIS can be contacted on 13 14 50 (local call from local phones, mobile calls at mobile rates).

Financial assistance

Caring might mean facing financial burdens and a loss of independence if you have had to give up paid work. Additionally, returning to work after the responsibilities of care have reduced can be challenging.

Discuss your entitlements with your employer regarding carer’s leave. Remember that despite being in paid employment, you are still entitled to Carer Allowance from Centrelink. For more information call 132 717. For enquiries on entitlements click here.

The Working Carers Gateway offers a variety of resources and information to support your role as a carer, while you’re employed.

Culturally and Linguistically Diverse (CALD) Carers

Carers come from all backgrounds and are impacted by similar issues. In fact, carers from a non-English speaking background may face additional challenges that include:

There are many organisations and resources that can provide support to CALD carers. For more information call Carers Australia on 1800 242 636 or visit Carers Australia

The network of Carer Associations can arrange for some translation and interpretation services. Contact 1800 242 636 or check out the links below:

Aboriginal and Torres Strait Islander Carers

If you identify as an indigenous person and are caring for your loved one after their transplantation, you can access the Aboriginal and Torres Strait Islander Carer Program. For more information call Carers Australia on 1800 242 636 (free except mobile) 9am – 5pm Monday to Friday.

There is an extensive list of resources available at the national and state level. To access these resources click here.

Carer Services and Assistance – A Quick Reference Guide

Financial Assistance

You may be eligible for Carer Payment (income tested), Carer Allowance or Carer Supplement.
Complete form from Centrelink

Centrelink – 132 717
For assistance in languages other than English – 131 202

To receive regular updates from the Department of Health Services on the latest news and offerings you can subscribe to their newsletter.

Respite

When you need a break and you need someone to look after the person you care for, the following services are available:

Commonwealth Respite and Carelink Centre – 1800 052 222
Deaf/Hearing Impaired – 1800 555 677
If using modem or TTY, ask for – 1800 555 727
Speech impaired 1800 555 727 then ask for 1800 052 222

Resources

Carers Australia – 1800 242 636

Contact your state or territory Carers Association
Counselling
CALD Carers
Aboriginal & Torres Strait Islander Carers
Young Carers
Mental Health
Advocacy

24-Hour Health Information Line

Healthdirect Australia – 1800 022 222

Mental Health Information Service

Healthdirect Australia – 1800 022 222
Beyond Blue – 1300 224 636

Medicare – 132 011 (24 hours, seven days a week)`

Acknowledgement

Transplant Australia gratefully acknowledges the contribution of Kelly Bowler, Carer Support Officer, Clinical Governance Unit at The Children’s Hospital at Westmead, in developing and reviewing this material.