Family and Caregiver Support
The impact that Kidney Disease and dialysis treatment can have on family is tremendous. It can impact everything from daily routines to relationships.
Family roles can be changed significantly. As the needs of your loved-one change, the amount of caregiving you provide may increase. A son, daughter, wife, husband or friend may become a caregiver to their loved-one.
If you are caring for someone on dialysis: You are not alone.
If you are caring for someone on dialysis: You are appreciated.
The Mixed Emotions of Caregiving
Providing care for your loved one can bring feelings of love, satisfaction, enjoyment, honour and pride in work lovingly done. At the same time, caring for your loved one can bring feelings of physical and emotional exhaustion, anxiety, and feeling overwhelmed by the amount of work involved. Family members often talk of an array of emotions when caring for a loved one with Chronic Kidney disease and life sustaining dialysis treatments.
See more of Cindy's experiences as a caregiver:
- "As a spouse I needed to take some time off of work"
- "As the caregiver, I felt alone"
- "Where caregivers can find support"
- "As the caregiver it's important to talk to someone"
If you are struggling with caring for someone with intense needs, it may help to talk to your renal social worker about caregiver supports. The following are some useful websites:
This website has information and resources for caregivers. You will find common signs and symptoms of stress, assistance with recognizing caregiver stress, tips for coping and organizing your time that may be helpful.
The Alzheimer’s Society of London and Middlesex
The Alzheimer’s Society in London has several programs designed to meet the needs of people whose lives have been affected by Alzheimer's disease and related dementias. They offer education and resources as well as social work support and monthly support groups. This website can be useful for reading more about dementia and about programs available to help you in caring for someone with Alzheimer’s.
Children and Dialysis
The impact of Chronic Kidney disease and dialysis on a family can be overwhelming, particularly when children are involved. People often wonder about the best way to involve young children and how to talk to them about illness.
The Fresenius Medical Care has some excellent information for parents:
Each child copes with a parent’s kidney failure in his or her own way. It may be tempting to try to keep kidney failure and dialysis a secret to “protect” your child. But the unknown is nearly always worse than the truth—and children always seem to know if something is going on. If you don't share what’s really happening, your child may imagine something that is much scarier. Even a 2- or 3-year-old can understand simple concepts like, “my kidneys don’t work well anymore, and dialysis helps me to feel better.”
Some children may not know what questions to ask, while others may ask difficult ones to answer. Answer a child’s questions honestly, giving only as much detail as needed for his or her age and ability to understand. You know your child best. Start out with simple facts about kidney disease and how it is treated. Explain that people with kidney failure have lived long, happy, and full lives and that you intend to do the same.
Sometimes parents worry about their child witnessing parents being emotional or crying. Keep in mind that just as feeling sad and angry can be normal reactions for you they can also be normal reactions for your child. Showing your child that you sometimes feel emotional and teaching them how you deal with emotions is good role modeling for your child. It might be helpful to tell your child: “Sometimes I feel sad or upset but you can always talk to me about what you have on your mind or ask me questions. If we become upset we will deal with that together”.
The Kidney Foundation of Canada publishes a booklet entitled " Show and Tell with Brian – A book about Kidney Disease" that can be a useful tool for talking with children about dialysis. For more information contact your renal social worker.
For more information please speak to your renal social worker.