vhl alliance

For Caregivers

Living with VHL can be tough, not only for patients but also for families and friends. You are not alone.

When caregivers attend to the needs of their loved ones, it is easy to forget about their own personal health and wellness. Studies show that those who are responsible for the long-term care of relatives show higher rates of illness, suppressed immune response, slower healing, and even increased mortality. Think of it like the safety instructions on an airplane:

In the unlikely event of a loss of cabin pressure, panels above your seat will open revealing oxygen masks. Reach up and pull a mask towards you. Place it over your nose and mouth, and secure with the elastic band that can be adjusted to ensure a snug fit. The plastic bag will not fully inflate, although oxygen is flowing. Secure your own mask first before helping others.

In order to give care, caregivers need stress relief, support, and time for themselves and their families.

Are you heading for caregiver burnout? Take this short quiz to find out! And learn some lifesaving strategies for managing the unique stress of caregiving.

Here is a helpful checklist for caregivers to revisit, even before feeling burnt out.

Protect your own health.

Boost your resistance by eating well, getting enough rest and exercise, and pursuing activities that bring you pleasure.

Practice self-care.

Make time for yourself and your needs. It is not selfish to take care of yourself— it is vital.

Combat caregiver stress.

Relaxation response techniques and self-nurturing techniques will enable you to feel calmer, happier, and better able to help others.

Make time for relationships.

VHL can cause caregivers and their loved ones to feel more stress than usual, which can greatly affect the relationship. You can still be close as a couple in spite of dealing with medical issues. Staying close is also about sharing feelings and understanding.

Accept help.

If no one offers help, ask for it. When someone offers help, accept it. Many people who have been caregivers say they did too much on their own. Some wished that they had asked for help sooner. Be honest about what you can do. Think about tasks you can give to others. And let go of tasks that are not so important at this time. Sometimes it is hard to ask or accept these types of offers of help, but by accepting this incredible personal gift, you provide the giver with an opportunity to serve, to demonstrate that they love you, just as you are trying to demonstrate that to your loved one(s) with VHL.

Find support.

Join a support group to talk out frustrations or concerns with other people in your situation and to get helpful ideas. Some caregiver support groups are available through the VHL Alliance.

VHL is a journey—a rollercoaster—with many ups and downs, and it is common for caregivers to experience feelings of stress, exhaustion, anger, guilt, or grief. It can help to talk or interact with someone who is on the same journey.

VHLA Support Resources


External caregiver support resources:

Family Caregiver Alliance (FCA) | 1.800.445.8106

FCA is a public voice for caregivers offering assistance and support through education services and research and valuable resources and publicly-funded caregiver support programs at national, state, and local levels.

Caregiver Action Network (CAN) | 202.772.5050

CAN (formerly the National Family Caregivers Association) is a non-profit organization dedicated to empowering family caregivers to act on behalf of themselves and their loved ones, and to remove barriers to their health and wellbeing. CAN provides education, peer support, and resources to family caregivers across the country free of charge.

Lotsa Helping Hands | info@lotsahelpinghands.com

Lotsa Helping Hands is a free resource through the CAN organization that provides a simple, immediate way for friends, family, colleagues, and neighbors to assist loved ones in need. Lotsa Helping Hands allows you to create an easy-to-use and private group online calendar, specifically designed for organizing help from others with meals delivery, rides, and other necessary tasks.