Caregiving is a demanding task regardless of a person’s disorder. But with rare diseases such as adrenoleukodystrophy (ALD) it can be particularly challenging, given this disease’s specific types and wide range of symptoms.
Here are some tips for family and friends working to support ALD caregivers, helping to ensure they don’t become exhausted or overburdened.
Educate yourself about the disease
The stressful nature of caregiving means that caregivers may not always be in a position to explain a disease to those around them. Some may even be hesitant to talk about certain ALD symptoms, such as learning disabilities or clumsiness. It helps to have some idea about the disease before approaching a caregiver, so to ease conversations.
Our Adrenoleukodystrophy News website is one good starting place for learning more about ALD, a regularly updated source of news covering work in research, treatments, clinical trials, and more.
Patient associations also offer information, and be found under ALD support groups mentioned below.
Offer to help with daily tasks
Caregivers, whether family members or professionals, can hesitate to ask for help. So be ready to offer a helping hand, like taking on such daily activities as running a quick errand, shopping for day-to-day needs, or keeping a tab on upcoming doctor visits. Help in even little ways can go far in easing a caregiver’s sense of stress.
Assure them of support
A word of support can also go a long way in assuaging a caregiver’s concerns. Stay in regular touch, and let that person know that you stand by him or her at all times. You may also suggest ALD support groups that they can join, which are a good source for insights into caring for people with this disease and for interacting with the larger ALD community.
Given the hectic schedules and constant attention needed by patients, caregivers may not always be able to spend time with friends and family. Depending on the task at hand, they may need to postpone already made commitments, keep conversations short, or be out of touch for extended periods of time. Understand their situation and empathize with their job, keeping in contact in ways that don’t add to their burden.
Watch out for signs of depression
Continued attention to people with a chronic disease can be weary for anyone, more so for primary caregivers who are constantly on the job. Be sure to watch for the more common signs of depression, before they turn into something more serious.
Last updated: Feb. 11, 2020
Adrenoleukodystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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