Caring For Individuals with Multiple Sclerosis
Caregiving is a very difficult job. It is 24/7 and emotionally and physically challenging. Those who have cared for someone with a chronic illness know well the difficulty in daily living for both the patient and the caregiver.
For an illness such as MS that is characterized by exacerbations (increase in symptoms and management needed) and remissions (decreased symptoms or even no symptoms) it can cause an increased difficulty for the primary caregiver.
The National MS Society has provided a guide for caregivers for those with MS based on all of the above difficulties. This guide can easily be used to assist patients, families, and caregivers for those with MS.
The guide is divided into five different areas including emotional support, caring at home, hiring, other care options, and practical decisions.
It presents such things as caregiver support groups, care for the caregiver, and tips to assist with the unpredictable disease course.
There are topics that are discussed that may be difficult for patients and caregivers to bring up and for healthcare providers to present. Those topics include the anger and frustration of caregiving, as well as the danger of abuse in caregiving, both physical and emotional.
There are recommendations of types of care that may be required as the disease progresses and tips on hiring help in the home.
The maze of care, whether permanent or respite, are presented for families to make informed decisions based on their needs. Included are accommodations in medical equipment and assistive equipment to help the patient maintain more independent living and better quality of life.
Most importantly, there are presentations of decisions that need to be anticipated in terms of advance directives and life planning to be discussed relating to medical insurance, financial planning, and available programs to assist families such as disability income and state and federal programs for financial assistance. The ADA law may be useful for some patients in terms of accommodations that can be made to better allow the patient to live more independently.
If you are caring for an individual with MS or interact with those who do, we think you’ll find this guide very helpful.
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