Providing constant care to someone who has a chronic disease such as familial amyloid polyneuropathy (FAP) can sap you physically, mentally, and spiritually. At times, you will need to recharge your body and mind. Respite care can give you the opportunity you need to rest and restore your energy.
What is FAP?
FAP is a progressive disorder that can lead to multiple health problems. Patients experience a wide range of symptoms, including cardiac issues, bowel dysfunction, nausea, and vomiting, postural hypotension (low blood pressure when standing up from sitting or lying down), shortness of breath, and weight loss.
What is respite care?
Respite care gives 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.
With center-based respite care, the patient goes to a facility on certain days and joins a group. Such centers usually offer opportunities for activities and outings.
Patients’ school-age children may benefit from after-school programs that can offer fun and inclusive activities. Such programs can give the youngsters a break from what may be a somewhat stressful home environment due to FAP.
How can respite care help?
Caring for a person with FAP takes a lot out of you. In a recent study in the U.S. and Spain, for example, FAP caregivers reported a “substantial” disease burden, including poor mental health, work impairment, and a mean caregiving time of 45.9 hours weekly.
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 your loved one with FAP, 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 set up, you can indulge in restorative and relaxing activities. You may catch up with friends, exercise, take a vacation, visit a restaurant, or simply enjoy a full night’s sleep. You may choose to simply take a long walk or just take time to exhale. Whatever activity you undertake, it’s important 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. Alternatively, an organization such as Amyloidosis Support Groups can help. In the U.S. and Canada, you also can 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. This way, 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. 28, 2021
FAP News Today 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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