CNN: With love and fear, Alzheimer’s youngest caregivers watch over parents

The Alzheimer’s Association estimates that over 250,000 brave children help care for an older loved one, assisting their parents, grandparents, and other relatives, in addition to school and growing up. Learn more about this rising phenomenon. -SP

By Madison Park, CNN

(CNN) — One Saturday morning, Austin Mobley noticed his mother staring at him blankly.

“Who are you?” Tracy Mobley asked, he recalled.

“Mom, are you joking with me or what?”

“No,” she replied. She was adamant. “Who are you?”

It’s a gnawing fear that one fateful day, the memories of aging parents will fade and they won’t be able to recognize their own children.

For Austin, it started early. He was 6.

Austin is in an emerging generation of young caregivers of parents who have dementia.

The boy from Elkland, Missouri, would make sure his mom didn’t leave the stove on or wander out of the house. His dad, Allen Mobley, worked the night shift to support the family, so Austin watched his mother when he came home from school.

“What often happens is the kids end up being the unplanned caregivers,” said Ruth Drew, director of family and information services at the national Alzheimer’s Association.

“I’ve talked to kids, adolescents, who are helping their parents eat, bathe or are providing direct care, as well as being the person in the house to make sure everything’s OK. This is happening across the country. It’s happening more and more.”

The most recent data available from the association, released in 2003, estimated that 250,000 U.S. kids under 18 are unpaid caregivers for people with Alzheimer’s.

Read more here at CNN.com.

NFCA: Medical Homes: A Bad Name to Describe Something Quite Good

These next two weeks, we’re posting some great articles recently published by the National Family Caregiver Association. If you have never heard of them, I strongly urge you to check out their website at: http://www.thefamilycaregiver.org/

Suzanne Mintz, President and CEO, National Family Caregivers Association

The new Patient Protection and Affordable Care Act (Affordable Care Act) is designed to change the way healthcare is provided and financed. Many of the provisions in this new legislation will help caregiving families, although they don’t specifically mention family caregivers. However, NFCA has identified 17 distinct sections that do. They include provisions that require doctors to get our assessment of whether we and our loved ones have been treated well (Isn’t that cool!), and others designed to make transitions of care from hospital to home or rehab as error-free as possible. It is really very exciting.

The provisions that I think will have the biggest impact on family caregivers’ day-to-day interactions with healthcare professionals and the healthcare system in general can be grouped together under the heading “System Delivery Reform.” The Affordable Care Act calls for the establishment of a Center for Medicare and Medicaid Innovation (Sec 3021). Its purpose is to test various models of care that are designed to be patient and family centered, holistic in their approach, and that use health information technology (health IT) to interact with patients, family caregivers, multiple healthcare providers, and, in some cases, social service providers. The operable words here are “test various models.” On a real-time basis, that means that most of us won’t have an opportunity to work with physicians and other healthcare providers who will be providing care in these new ways anytime soon, because these will be demonstration or pilot programs. Down the road, however, when various models prove effective in providing better care and creating better outcomes for patients, families and the government, these models will start to become the norm.

Read the whole article at the NFCA website here.

The Family Caregiver Toolbox

From the National Family Caregiver Association website.

With this issue of TAKE CARE!, NFCA is pleased to begin a new feature aimed at providing family caregivers with a variety of tips, tools and ideas to help you make life a little easier, take better care of your loved ones, and plan for the future.

In Case of Emergency …

No one wants to think about the “what if” scenarios, but a responsible family caregiver should always have a plan in place that addresses the unthinkable. What would your loved ones need to know should you, the family caregiver, become incapacitated, or worse? Kate Finan, a daily money manager with Help Unlimited, Inc. in Maryland, suggests that you take a three-ring binder and label it “All They Need to Know.” In it, put the location of all your important papers as well as the location of a copy of each document. Include information about your credit cards, your brokerage and retirement accounts, and all your insurance policies. If some of your bills are paid automatically through your bank, this information should be included as well. And don’t forget to make a list of your computer and other passwords so that family members can access important accounts quickly in an emergency. Use sheet protectors to keep the pages clean and safe. Finally, because the information in your binder is highly privileged, it’s important to store it in a secure place and to share its location only with the individuals you choose to have access to it.

No one wants to think about the unthinkable. But doing so now will provide both you and your family members with enormous peace of mind.

Family Caregiving Requires A Village

By Suzanne Mintz

One of NFCA’s core messages for family caregivers is, “Reach Out for Help,” because caregiving is more than a one person job. Hillary Clinton said, “It takes a village,” referring to the rearing of children. Well, it takes a village to care for someone with a chronic condition as well.

Your circumstances may not be like mine and so the specifics of my story may not relate to your day-to-day life, but I know that you’ve had, or will have, situations in which a “village” would be the answer to your problems, too.

I should have known there was trouble ahead when 10 minutes before a taxi was to arrive to take me to the airport (I was going to Chicago for a conference) my husband, Steven, and I both fell as we were transferring him from his manual wheelchair to his electric one. Steven has MS and has been in a wheelchair for more than a dozen years now. Transferring was nothing new to us. We do it at least four times a day.

Neither one of us was hurt, but we were left with the problem of how to get him up and in his power chair and me ready when the taxi arrived. After trying several neighbors who weren’t home, I finally reached Peter*, who lives one street over. He came over right away and between the two of us we were able to get Steven safely and comfortably situated for the day. The taxi arrived, graciously waited for me, and got me to the airport on time. Crisis solved. Or so I thought.

Read more at the National Family Caregiver Association website.