A debilitating disease such as amyotrophic lateral sclerosis, or ALS, takes a devastating toll on the people who suffer from it as they lose their ability to walk, dress, write, speak, swallow and breathe.
But it also can wreak havoc on their families, says Marylee MacDonald (www.maryleemacdonald.org), a caregiver advocate and writer whose debut novel, “Montpelier Tomorrow,” focuses on a family caring for a loved one with ALS.
“Caregivers crumble under the demands of providing long-term care,” she says. “The sleepless nights and the stress can end up putting their health at risk as well.”
The situation takes on an added dimension when children must take on all or some of the responsibility for caring for a parent, sibling or other relative weakened or incapacitated by a disease such as ALS.
“When a house turns into a nursing home, children lose their childhoods,” MacDonald says.
Nationally, about 1.3 million to 1.4 million young people between the ages of 8 and 18 are serving as caregivers for sick or disabled relatives, according to the American Psychological Association.
It’s unclear how many of those children are caring for someone with ALS, so the ALS Association recently announced plans to fund a new study of young people in that situation. The results will be used to better understand the needs of youth caregivers and to design support services to address those needs, the association says.
Although the life expectancy of a person with ALS averages about two to five years from the time of diagnosis, there are variations, and many people can live with the disease for five years and more, according to the ALS Association. About 5 percent live 20 years or more.
“They need constant care and family members, including children, find themselves devoting much of their time and resources to providing that care,” MacDonald says. “When it’s someone you love, you can’t help but want to try to do that. But it’s such an enormous task and most families are unprepared to deal with it, which is why I believe we as a society need to start asking questions like: Who is going to pay for it? What happens if families can’t handle the job they’re asked to do?”
She suggests the nation needs to take steps to improve the lives of caregivers, both young and old, and a good start would be to:
• Understand the problem. The healthcare system in the U.S. works only because families do most of the heavy lifting for disabled children, brain-injured veterans and those with ALS and other neurological diseases, MacDonald says. The majority of caregivers are women, and to help a family member they often cut back to part-time employment and pass up promotions, which puts their own futures and retirement in jeopardy.
• Consider tax credits. When people debate solutions for problems with the nation’s healthcare system, long-term care rarely even gets worked into the conversation, MacDonald says. She advocates tax credits for family caregivers, which would help ease at least some of the burden for what becomes a financial crisis for many families.
• Study what other nations do. Many other countries take a more active role in trying to address the problem, MacDonald says. In Great Britain, some caregivers who spend at least 35 hours a week caring for someone are eligible to receive a modest “carer’s allowance.” In Australia, a non-governmental program called Youngcare provides assistance for young Aussies who have high-care needs. “We should look for the best examples happening around the world to see what might work for us,” MacDonald says.
She says it’s unrealistic to take the view that this is a family problem so all the responsibility should fall on the individual family. It’s even more unrealistic to take that position when the caregivers are children or teenagers.
“Most people can manage a short-term health crisis that lasts a few days, and many may be able to manage one for a few months,” MacDonald says. “But when it comes to one that lasts for years? Come on, get real. That’s beyond what most of us can deal with.”