Respite Care for CALD Patients

Respite Care for CALD Patients
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Providing care for a child with cerebral adrenoleukodystrophy (CALD) can leave you physically, mentally, and emotionally spent. At some point, your body and mind will need replenishing. Therefore, finding respite care for your family member with the disease is important and can give you time to rest, relax, and restore.

What is CALD?

Adrenoleukodystrophy (ALD) is a rare genetic disorder characterized by the degeneration of nerve cells, which carry information to and from the brain. The disease can also affect the adrenal glands, causing them to make lower levels of certain steroid hormones.

When ALD affects the brain, as it most often does in its childhood form, physicians refer to it as CALD — the most severe type of ALD. CALD symptoms can include hyperactivity, learning difficulties, and behavioral changes such as aggression. Patients may also at some point experience vision problems, difficulty swallowing, and poor coordination.

What is respite care?

Respite care provides primary caregivers temporary relief as someone else looks after the patient for a period of time. This can range from a few hours during the day to overnight or longer. Primary caregivers might use such care regularly or only occasionally.

The respite carer can look after the patient at home or elsewhere. With in-home respite, the carer might stay in your home, or take the patient on an excursion, perhaps to a park or for a drive.

Center-based respite care is when the patient goes to a facility on certain days and joins a group. Such centers often provide opportunities for activities and outings.

After-school programs can offer fun and inclusive activities for the patient’s siblings. These programs give youngsters time away from what may be a somewhat stressful home environment due to the family member’s illness.

How can respite care help?

Caring for a child with CALD is difficult. A study that evaluated the mental health of 37 parents of CALD patients found them to be at high risk for depression and neurosis.

In addition, the National Alliance for Caregiving states that nearly four in 10 caregivers consider their situation highly stressful, and 28% report moderate emotional stress.

While it can be complicated to take a break from caring for a child with CALD, doing so is good for you, your family, and the patient. It gives you a chance to rejuvenate and take care of yourself, ultimately enabling you to be a better caregiver.

Once you have respite care in place, you can do things that are relaxing and fulfilling. You may get together with friends, exercise, take a vacation, visit a restaurant, or simply enjoy a full night’s sleep. You may also choose to relax by simply going for a walk or finding time to take a few deep breaths to clear your mind.

Where can I find respite care?

The patient’s physician or healthcare specialists may give you a referral for respite care, or perhaps a support organization such as ALD Connect can help. In the U.S. and Canada, you can also locate private respite care programs through the ARCH National Respite Network and Resource Center.

You may wish to arrange care informally with family and friends so you can go out for the evening, attend an appointment, or engage in community recreational offerings.

Sometimes a home health worker who visits during the day and has established a good relationship with the patient can offer respite care for longer periods. This can allow you to travel or maintain your own health.

Your respite care options depend largely on where you live, the patient’s age and needs, and what you hope to do with the time off from caregiving.

Because formal services often have waiting lists, it’s a good idea to get a head start. You may consider applying to the Rare Caregiver Respite Program of the National Organization for Rare Disorders. Eligible applicants can get up to $500 annually to secure respite care from a nurse, nursing assistant, or home health aide.

 

Last updated: Jan. 27, 2021

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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 providers 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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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.
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