Tips for Taking Care of Sjogren’s Syndrome Caregivers

Tips for Taking Care of Sjogren’s Syndrome Caregivers

Rare genetic diseases such as Sjogren’s syndrome can be very hard to deal with for parents and caregivers of patients. Friends and family often find it hard to support caregivers who may feel exhausted or overwhelmed while constantly tending to those with the immune system disorder.

Here are some tips to let caregivers know that you care for them.

Learn about Sjogren’s syndrome

Caregivers often are already stressed out in their daily patient-care activities, so they might not be in a position to explain each and every aspect of the disease. Therefore, it helps to be prepared, and know about some of the symptoms of the disease, to ease conversations.

A good starting point is our Sjogren’s Syndrome News website, which has a lot of information pertaining to the disease, such as news, treatments, clinical trials, and more.

Stay in touch

Nothing is more reassuring for caregivers than letting them know that you are always there for them. Keeping in regular touch assuages their concerns and assures them of support. Catching up over coffee or dinner is a great way to keep the conversation going.

Lend a helping hand

It is often the little things that make a big impact. Parents and caregivers might be reluctant to ask for help. Offering a helping hand in daily activities such as buying groceries, running a quick errand, or taking care of the upcoming doctor’s appointment can go a long way in increasing positivity and optimism.

Have an eye open for signs of depression

Taking constant care of a patient for the most part of the day can exact a toll not only on the caregiver’s physical health but mental health as well. While interacting with caregivers, watch out for signs of depression before it turns into something more severe.

Be understanding

Caring for a person with a chronic disease is hard and affects just about everything for a caregiver. They may not be able to allocate time for family, friends, and activities like they used to do, or even may not be responsive at times. Often, plans may need to change due to emergencies beyond the caregivers’ control. Empathize with them and be understanding if they need to cancel plans at the last minute.

 

Last updated: Sept. 16, 2019

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Sjogren’s Syndrome 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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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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