Live Now is a movement to start living on your terms, with hope, optimism and strength. Kidney disease doesn't define your life - you do. It's time to get up, get out and live for today.
Get Support for Family & Friends

Kidney disease caregivers need help and support, too

When someone you care about has kidney disease, you might want to help, but not know how. You may resent the role you play. You might feel that everything is geared towards the patient and that your needs are ignored or overlooked. You might feel guilty when you need some time for yourself. It's important that you don't allow their disease to overwhelm you. Take it day by day and worry only about what you can control. Look for resources in the community and organizations that can help you cope and answer your questions and address your concerns. Live in the now and find out how you can help them manage their kidney disease to find and enjoy a meaningful life.


Cooking is just one of the many things Carol and her husband and caregiver Olof do together.

Get involved and take an active role

Once a patient has kidney disease it can be difficult for them to focus on what needs to be done. They often enter a phase of denial and find it difficult to accept their disease. That's why it's very important that you take the time to understand how you can help your loved one. Research the disease and help them select the therapy that's right for them. Accompany them on their doctor's appointments to act as their advocate. Arm them with questions for their doctor and their care team. Ask their doctor, nurse and social worker what you can do. Ask the patient how you can help. And, most importantly, offer them your love and support.

Stay upbeat and hopeful

One of the most important things you can do to support a patient with kidney disease is to remain a positive force in their life. Help them see that their disease does not define who they are. Provide positive energy and optimism for the future. It's easy for a patient to get lost in a spiral of sadness and depression. Kidney disease isn't the end, it's just a new part of their life. Often, patients suffer from negative feelings and emotions that are out of their control. Your attitude can help them not only find hope in their situation, but it can even positively impact the success of their treatment.

What to expect

Lifestyle changes

Once you're caring for someone with kidney disease, or one of your friends has kidney disease, just like them, you'll want to be prepared for some lifestyle changes. They may have less energy to do the things they used to. You'll need to plan activities around their needs and how they are feeling. Dialysis patients also have very specific dietary needs and you should take that into account when planning meals or going out to eat.

Change in roles

A chronic illness like kidney disease can change family roles. In some cases, the caretaker becomes the patient. The family breadwinner might be the one who needs to be supported. Extended family members might need to make themselves available to help with things like the laundry or lending a hand to take care of the home. All of these things can put an immense strain on relationships. For example, a partner may need to take on additional responsibilities and could become fatigued. As a friend or family member of someone with kidney disease, you need to be aware of these changes and just like the patient, you need to be honest with yourself and ask for help when you need it. It might seem tough at first, but once a new routine is established, it becomes easier for everyone to accept the changes and get back to living their lives.
 

Friends, too can be impacted by kidney disease

It's easy for a patient to feel like a burden and pull away. They'll spend less time with their friends due to dialysis. Friends often feel helpless. They want to help but often don't know what to do. As a friend, you can play a crucial role in helping someone you care for maintain a positive attitude. Just showing you know they are going through a difficult time can be meaningful to them. Call them on the phone. Stop by for a visit. Plan a dinner that takes their dietary needs into consideration. Offer to go grocery shopping for kidney-friendly foods. Be understanding of the changes the patient is going through and do what you can to show them you're still there.

Don't put your own life on hold

Be sure to keep up with hobbies or activities you enjoy. Keep in touch with your own friends. Caring for a loved one can be very emotionally draining. Handling your worries and fears and dealing with the uncertainty of how a loved one will be feeling on any given day can take its toll. Look for support and help for your own needs.

Find help giving care for dialysis patients

You might not know how to best support a loved one with a chronic illness. Thankfully, there are organizations that can give kidney disease caregivers the support, encouragement and assistance they need to provide for a loved one with kidney disease.

Learn More About Kidney Disease

National Alliance for Caregiving

The National Alliance for Caregiving was established in 1996 and focuses on issues of family caregiving. Alliance members include grassroots organizations, professional associations, service organizations, disease-specific organizations, a government agency, and corporations. 
www.caregiving.org

How to Cook for Dialysis Patients

Culinary Kidney Cooks

A dialysis diet cookbook written by health care professionals.
www.culinarykidneycooks.com

National Kidney Foundation

The National Kidney Foundation has a well-researched list of cookbooks for kidney dialysis patients. The Kidney Kitchen provides important support and education about dietary requirements and modifications that could potentially slow the progression of kidney disease and improve overall health outcomes.
www.kidney.org

Look online for kidney-friendly recipes and diets

To find kidney-friendly recipes and diets on the Internet, search for the following terms:
Renal diet
Kidney diet
Dialysis diet
Kidney disease diet



My mom does her own dialysis. But I'm there and available if she needs anything.  

Viola
Daughter of Ethel 
Peritoneal Dialysis Patient

  If you’re a caregiver for a wife, husband or anyone on dialysis, it means there's a chance that you can live longer with that person. It means a chance for life. It’s just another exciting adventure. You can do the things you need to do to make their life and your life happy.  

Olof
Husband of Carol 
Transplant and Former In-center Hemodialysis Patient
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