Being a caregiver who has a friend or someone in the family with Multiple Sclerosis is a challenging task. It involves physical and emotional care to provide ongoing support to a patient to help him/her deal with day to day challenges with MS. You need to create a balance, as care giving can also be physically and emotionally exhausting especially for the person who is the primary caregiver like the patient’s immediate family or close friend. These responsibilities can often lead to feelings of anger, frustration, depression and guilt, so you need to handle it very cautiously & patiently. One of the biggest mistakes caregivers make is thinking of handling everything alone. One of the important things that you have to remember is that you have to take care of yourself as well and delegate tasks or appoint help whenever possible.
You can make care-giving For Multiple Sclerosis patients easier by adopting the following techniques:
I) Emotional Support
a) Handling stress and caregiver burnout: Providing emotional support and physical care to someone with MS is sometimes distressing. The best way to avoid burnout is to have the practical and emotional support of other people such as other family members and friends. Sharing problems and responsibilities with others would relieve you from stress.
b) Outside Activities: Caregivers must give time to yourself to enjoy outdoor activities. It has been seen that other family members are often willing even pleased to spend time with the person with MS. It may be possible to arrange respite care on a regular basis.
c) Two -way communication: Sometimes emotional stress may increase due to the poor communication between the patient and the caregiver. The caregiver should discuss concerns and fears openly about MS with the patient. The emotional and cognitive symptoms of MS are often more distressing than the physical changes. If memory loss, mood swings or depression are interfering with communication or daily activities then openly share these with your health care professional.
d) Handling unpredictability: The unpredictability of Multiple Sclerosis can be very stressful but it can be managed. If you are making plans for outings then always check out bathroom facilities and entrance way.
II) Caring at Home
a) Flexible roles: MS is extremely unpredictable. People experience attacks and remissions, loss and recovery or partial recovery of abilities. So the caregivers will need to rethink tasks and family schedules in order to maintain a flexible flow.
Relationships change, particularly with people of more advanced MS, as they lose their independence and caregivers have to take on more and more responsibilities.
b) Roles and gender differences: Women and men who act as a caregiver face almost the same kind of feelings i. e. frustration, satisfaction, depression, etc. However women caregivers may feel more comfortable than men caregivers by virtue of their ability to express their emotions, concerns and feelings more openly. Men caregivers find it more difficult to ask for help and may not be able to use the resources available. Women are often better at expressing their feelings and accessing supportive networks. But women caregivers are more likely to neglect their own health and their need for outside activities.
c) Health and symptom management: Health care team can advice care-partners about diet and routines. Caregivers should make appointments with health team to get information, advice and training. With proper training and a little experience, most caregivers end up feeling confident about this part of their role.
III) Practical Decisions
Financial stability is essential and should be undertaken early. Long term planning will help the care partners feel more secure about their well-being. Life planning includes saving for future, protecting existing assets, seeking advice from insurance, employment rights etc. Care-partners also need to be aware of the coverage provided by their medical insurance and explore reimbursement of the medication.