Over 400,000 people in the United States and over 2 million worldwide have Multiple Sclerosis. Caregiver support is needed in nearly every case at some point. More often than not, the role of MS caregiver is assumed by a loved one – usually a spouse.
In the early stages of the disease, the Multiple Sclerosis caregiver is usually only dealing with the flare-ups or relapses of the relapsing-remitting form of the disease. In this early stage of MS, caregiver support is often just a temporary inconvenience, and the full burden of what is to come in future years is not fully realized. After the attack is over, the family goes back to life as it was before diagnosis of Multiple Sclerosis. Caregiver burden is not particularly heavy, as the patient can still help with most day to day responsibilities. It is important to let the person with MS contribute as much as possible in these early stages so they don’t feel like they are such a burden.
MS caregiver role becomes more important to the family functioning normally as disease progresses
After some time, both the MS patient and the MS caregiver become aware that the symptoms aren’t just going away like they once did. As this realization sets in, and while the patient still maintains most of their cognitive function, it is important to plan for the future financial burden that will be faced. The patient might at some point not be able to hold down a job, and the Multiple Sclerosis caregiver role will morph into principle breadwinner along with taking up most of the household chores. This gradual shifting of responsibility from the patient to the caregiver is almost as cruel as the disease itself.
When does the Multiple Sclerosis caregiver need outside help?
Eventually, the patient may find it difficult to even take care of themselves, let alone share in household chores. By this time, years have gone by and the MS caregiver doesn’t acknowledge the emotional toll the disease has taken on them and the family. Feelings of guilt begin to creep in as both the patient and the family begin to resent the toll being taken out on the family by Multiple Sclerosis. Caregiver becomes more of a full-time job and other obligations have to be forsaken.
It is at this time, when guilt and resentment set in, that MS caregiver support be sought. There is respite care, which might just mean someone comes in to give the primary caregiver some time off and away. Or maybe the family can arrange for someone else to come in from outside to help with either housekeeping and cooking or personal hygiene care of the patient. This should not be avoided or ignored. Resentment can turn into abuse. And the last thing an MS caregiver wants to become is a spouse abuser. Some of the local MS chapters can help you find financial aid to help offset the cost of outside Multiple Sclerosis caregiver support. Take advantage of these resources and take advantage of any respite time you can get for the caregiver. It is a long and lonely journey – and not one best traveled alone.
