Providing constant care to a patient living with a chronic disorder such as cold agglutinin disease (CAD) can be taxing. At times, you will need to recharge your own body and mind. Respite care can give you the opportunity you need to rest and restore your energy.
The following will outline some benefits of respite care and how it may help you if you are a caregiver for someone with CAD.
What is CAD?
CAD is a rare autoimmune disorder in which exposure to cold temperatures, those between 32 to 50 F (0 and 10 C), causes autoantibodies called cold agglutinins to bind tightly to red blood cells, inducing their lysis, or disintegration, and resulting in anemia. Symptoms can include fatigue, dizziness, headaches, chest pain, vomiting or diarrhea, and heart problems such as arrhythmia.
The disease, which commonly affects adults who are of middle age and older, may manifest as a primary disease, in which the underlying cause is not known, or as a secondary disease likely due to bacterial, viral, or parasitic infections, certain types of cancer, or other autoimmune disorders such as lupus.
What is respite care?
Respite care gives primary caregivers temporary relief while 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 which can be beneficial to the patient’s well-being.
Challenges of caring for someone with CAD
Caring for a person with CAD can take a lot out of you. The National Alliance for Caregiving states that nearly four in 10 caregivers consider their situation highly stressful, and 28% report moderate emotional stress.
Things can get particularly hard if the patient has secondary CAD, and thus also has an underlying illness that may require care.
If the patient is a family member, maybe you’ve had to move to a warmer climate due to the disease. You may not have a strong support system nearby that can provide comfort and assistance.
Perhaps the patient forgets to dress warmly or to avoid cold food and drinks. Dealing with flare-ups can be hard.
It also may be stressful to make sure that the patient avoids contact with sick people to reduce the risk of getting infections, which is critical in CAD.
Many factors can make it more challenging to serve as a patient’s primary caregiver.
How can respite care help?
Take a break from caring for someone with CAD 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, a support organization such as the Cold Agglutinin Disease Foundation 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 also 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 has 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: March 11, 2021
Cold Agglutinin Disease 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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