If you are caring for someone with kidney failure, you may feel that everything is geared towards help and support for the patient, and that your needs take second place. Caring for someone can be rewarding and fulfilling. It can, at times, also be frustrating and difficult.
You may resent the role you play. This is entirely natural. It is important to recognize that your well being is also a priority. Do not feel guilty about thinking about your own needs.
There is help and advice available to make sure you look after yourself too.
The renal center staff and your doctor will recognize the importance of your role. They will be happy to discuss with you any difficulties you are facing, whether these are practical or emotional. They can advise you on how to cope.
They may be able to put you in touch with local agencies to help with the practical aspects of the care you provide, or with someone who can help with counseling for any emotional difficulties you may be having.
Try not to put your own life on hold. Keep up with some of the hobbies or activities you used to enjoy. Keep in touch with your own friends. If the person you are caring for has difficulty recognizing the importance of this for you, or resents the time you spend on your life, ask the renal unit staff or your doctor for help in explaining your needs to the kidney patient.
Respite care can often be arranged through your social worker or doctor. This could be a regular break (one week every two months, for example), during which the person you care for stays in a nursing home, while you can either get away, or have time at home to catch up on things you would like to do. This is easier if the patient is being treated with Haemodialysis because they can still travel to their unit for treatment. Peritoneal dialysis patients who need help with their treatment will need to be accommodated at a nursing home that has trained staff able to perform peritoneal dialysis.
Baxter and the hospitals with renal centers usually organizes events for patients and their caregivers. Sometimes it can be helpful to talk to others in the same boat and these events provide opportunities for you to meet up with other patients and caregivers to discuss common problems and experiences.
Benefits and financial help for care givers
Financial help and benefits are available to some caregivers, depending on their circumstances. If you think you need financial assistance, or want to find out if you would be eligible to receive benefits, it may be helpful to talk to someone who knows the system.
If the renal center that you are with or the patient you care for, has a medical social worker, he or she may be able to advise you on which benefits you could apply for, and help you with filling in the forms.