Erdheim-Chester Disease Global Alliance

Caregiving Support

Any caregiver interested in connecting with others who love and care for ECD patients, please contact the organization.

Caregiving is a very difficult job. For many carers, the physical and emotional demands are constant and leave you feeling exhausted. It is easy to drift away from family and friends at just the time when you need them the most. In order to avoid caregiver burnout, you must remember to take care of yourself. Caring for yourself may be one of the most important ways you can care for your loved one.

Note: Sometimes Erdheim-Chester Disease (ECD) is less extreme and the care demands are commensurately less extreme. This is marvelous and quite normal, but still the advice in this section may be helpful over the years

One way to care for yourself is to let others help you. When someone asks what they can do, offer specific examples of things they might do to help. Some examples you could give are to cook a meal, mow the grass, grocery shop, do some home maintenance task, sort through paper work, fill out insurance forms, etc. Most people want to help, they just don’t know what to do. If you give them something to do they will feel better and you will get the help you so need. Try to match the suggested task to the person’s interests and abilities.

Another important thing to remember as a caregiver is to simply keep an eye on your personal health. Remember to eat healthy foods, get enough sleep, exercise, see your doctor for regular checkups and take time to just rest when you need it. If you as the caregiver become ill, remember to do what is necessary for you to get better. All this is much more difficult to do when you are caring for your ill loved one, but try to remember you need to stay as healthy as possible, if not for yourself, then for your loved one.

As a caregiver it is also important to keep contacts with family, friends and others who understand what you are going through. Spend time communicating with others. Do not keep your fears, stresses, concerns, etc. bottled up inside of you. Find someone you can trust to share your thoughts and concerns. You might look to your previous support structure of family, friends, or church members for this. Or, you might want to turn to a caregiver support group. These support groups can usually be located through your church, your doctor’s office or online. One such online organization is the National Family Caregivers Association (http://www.nfcacares.org).

Working to consciously maintain a balance between the needs of your loved one and your own needs is extremely important for your well being and that of your loved one. Caring for your loved one when they are ill is one of the most difficult jobs you will ever face. It is stressful and often very lonely. It is also one of the most loving and giving jobs you will ever have the opportunity to do. With balance, you will be in a much better situation to continue doing what needs to be done with love and compassion while lessening the risk of caregiver burnout.