Respite Care for Pompe Disease
Patients with Pompe disease may need constant care. Providing such care can be mentally, physically, and emotionally depleting for a caregiver. Sooner or later, you will need to refuel your body and mind. Respite care can give you the chance to rest, relax, and restore.
About Pompe disease
Pompe disease is a rare genetic disease characterized by the abnormal buildup of a sugar molecule called glycogen inside cells. This buildup impairs the working of different organs and tissues, especially the heart, respiratory and skeletal muscles.
What is respite care?
Respite care is when someone looks after a 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 patient can be cared for in the home or elsewhere. With in-home respite, the respite carer might stay in your home. Alternatively, he or she might 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 location on certain days and joins a group. Such centers often provide opportunities for activities and outings.
There also are after-school programs that offer fun and inclusive activities for the patient’s children or siblings. These programs give youngsters time away from what may be a somewhat stressful home environment when a family member has Pompe disease.
How respite care may help
A systematic review on the humanistic burden of late-onset Pompe disease found that caregivers provide an average of 17.7 hours weekly of informal care. According to the review, half of the caregivers had mental health problems, and 40% had issues with their physical health.
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 loved one, doing so is good for you, your family, and your loved one with Pompe disease. 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. Or you may choose to relax by simply going for a walk or finding time to take a few deep breaths to clear your mind.
Finding respite care
The patient’s physician or healthcare specialists may give you a referral for respite care. Or perhaps a support organization such as the International Pompe Association can help. In the U.S. and Canada, you also can locate private respite care programs via 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 with Pompe disease can supply 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 gain from taking a break.
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. 26, 2021
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