Got MS? Who Cares?
No, I’m not being rude and flippant with that question. I’ve been thinking about this a lot lately as I read materials on MS caregivers and the articles and responses by people here who have loved ones with multiple sclerosis. Who are the people who take care of people with MS without credit and often with little assistance?
There’s the obvious list of neurologist, primary care doctor and the nurses, therapists and pharmacists. Sure, they care about us, but in short spurts of time – mainly when we are there in the same room and their attention is directed toward us. I might point out that it is also their job; as dedicated and committed as they might be toward caring for us, it is still their source of income unless you happen to be treated by a professional who has also taken a vow of poverty.
But for people with multiple sclerosis and other similarly disabling diseases, being at or near poverty seems to be what it takes for a person to get care in their home by someone other than a family member. From what I know, if you happen to own a home or at least have a mortgage with your name on it, own a car or other material property of value, and have a source of income such as a spouse with a job, you are pretty much on your own. Tough luck that you have MS, and even more tough luck that its considered you have sufficient resources to provide for yourself.
So we face the big question I posed – who cares? Particularly if you are confined to a wheelchair or worse, who is there to help you with the daily activities of life? If you are fortunate to have a spouse who honors the ‘in sickness and in health’ part of your wedding vows, then ‘caregiver’ becomes another title they wear, and often they do it without much assistance from the outside until it just becomes more than they can physically do. Even then they sometimes push on, to the point of exhausting their own health.
The Caregiver Action Network (CAN), a nonprofit organization, lists significant facts on their website as to who is doing caregiving in our country –
- Surprising to me is they say 2 out of every 5 adults do some form of caregiving for people who are either chronically ill or elderly. The number of people doing caregiving is rising, from 30% in 2010 to now 39%.
- The need for care doesn’t discriminate and almost as many men as women identify themselves as caregivers.
- Close to 50% of caregivers perform complex medical care at home, including many tasks we would usually think of as performed by nurses, therapists or doctors.
If you are a caregiver, I recommend you visit their website and read more about the state of caregiving to understand you are not alone. They also have some insightful articles for caregivers, particularly why respite assistance is psychologically difficult to ask for and how to find the resources that might be available to give you a much needed break. I hope all the caregivers reading this will go back and read this insightful article, and be sure to read Part 2 about the psychological and emotional part of having the assistance of respite care.
Caregivers are the unsung heroes in health care and as the numbers and needs grow, it’s apparent our medical system must recognize this need and add ways to assist. I think of caregiving as much like caring for a young child, or even an infant - you have to be vigilant, go without sleep, postpone your own needs for those of a child. The difference with caring for an adult is they don’t outgrow the need for constant care and supervision.
We may not be in a situation at this moment that we need additional care or are a caregiver, but it’s important to recognize that can change quickly. Understanding just who cares now might help us in the future if we find ourselves in the same position. For those of you who find yourself as a caregiver for someone in the MS community, I offer my most sincere and deepest thank you. We often couldn’t do it without your care.
Wishing you well,
How many specialists did you see before finding "The One"?