Any caregiver interested in connecting with others who love and care for ECD patients, please contact the organization.<\/p>\n
Caregiving is a very difficult job.<\/strong>\u00a0 For many carers, the physical and emotional demands are constant and leave you feeling exhausted.\u00a0 It is easy to drift away from family and friends at just the time when you need them the most.\u00a0 In order to avoid caregiver burnout, you must remember to take care of yourself.\u00a0 Caring for yourself may be one of the most important ways you can care for your loved one.<\/p>\n 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.<\/p>\n One way to care for yourself is to let others help you.<\/strong>\u00a0 When someone asks what they can do, offer specific examples of things they might do to help.\u00a0 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.\u00a0 Most people want to help, they just don’t know what to do.\u00a0 If you give them something to do they will feel better and you will get the help you so need.\u00a0 Try to match the suggested task to the person’s interests and abilities.<\/p>\n As a caregiver it is also important to keep contacts with family, friends and others who understand what you are going through.\u00a0<\/strong> Spend time communicating with others.\u00a0 Do not keep your fears, stresses, concerns, etc. bottled up inside of you.\u00a0 Find someone you can trust to share your thoughts and concerns.\u00a0 You might look to your previous support structure of family, friends, or church members for this.\u00a0 Or, you might want to turn to a caregiver support group.\u00a0 These support groups can usually be located through your church, your doctor’s office or online.\u00a0 One such online organization is the National Family Caregivers Association (http:\/\/www.nfcacares.org).<\/p>\n Another important thing to remember as a caregiver is to simply keep an eye on your personal health.<\/strong>\u00a0 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.\u00a0 If you as the caregiver become ill, remember to do what is necessary for you to get better.\u00a0 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.<\/p>\n 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.<\/strong>\u00a0 Caring for your loved one when they are ill is one of the most difficult jobs you will ever face.\u00a0 It is stressful and often very lonely.\u00a0 It is also one of the most loving and giving jobs you will ever have the opportunity to do.\u00a0 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.<\/p>\nWebsite resources<\/h3>\n\n