Young Caregivers: Parents Turn to Children for Help

[question everything]

The Wall Street Journal

Young Caregivers: Parents Turn to Children for Help
Many Juggle School With Feeding Tubes, IVs
By CLARE ANSBERRY
January 5, 2007; Page A1

PAULDING, Ohio -- Every morning, at about 6, Jordan Wilhelm goes into his parents' room to lift his father out of bed. The 17-year-old high-school senior carries his dad down the hall to the bathroom, his mother following behind. He helps her get him into the shower, and then dressed, slipping pants on his father's legs and coaxing his arms through shirt sleeves. During the week, if his father falls out of his wheelchair or has to use the bathroom, he calls Paulding High School, saying he needs Jordan home. With the school less than a mile away, Jordan arrives in minutes. He helps his father back onto his green recliner in the family room, draping a plaid blanket over his legs, before returning to class. "It's my life," says Jordan. "Even when I was young, he couldn't do a whole lot."

(snip)

Across the country, children go about providing home health care to parents, grandparents or other relatives. They suction breathing tubes, change catheters, and run steroids through IVs. These children assume household chores at early ages, preparing meals and doing laundry for a parent who can't. In many ways, the care they provide mirrors or exceeds the tasks that often overwhelm adult children caring for an elderly parent. The ranks of young caregivers are large and expected to grow, given advances in medicine and technology. People with conditions such as Lou Gehrig's disease, multiple sclerosis, lupus, cancer and heart disease are living longer. With portable machines that help them breathe, swallow, and communicate, paralyzed parents can remain at home longer.

A 2005 study found as many as 1.3 million to 1.4 million children in the U.S. ages 8 through 18 provide care for a chronically ill or disabled family member... The study, funded by the U.S. Administration on Aging and conducted by the National Alliance for Caregiving and the United Hospital Fund Foundation, found nearly 60% of child caregivers helped with a task such as bathing, dressing or feeding. A fourth of the children had no one helping them with the tasks, and about half said the caregiving took a significant amount of their time. Boys were almost as likely to provide care as girls. More than 400,000 were under 12. About 60% of the children came from households earning less than $50,000.

While motivated by love and devotion, these children often have little choice. Many live in single-parent homes, with only the infirm parent. In two-parent households, the healthy parent may be working. Few can afford paid home-care help, which generally costs from about $140 to $180 a day. Skilled nursing care costs much more. Most private health-insurance policies don't cover in-home care, unless they are specific -- and expensive -- long-term care policies. Medicare, the federal insurance program for the elderly and those under the age of 65 with certain disabilities, will pay for hospitalization and some in-home care when considered medically necessary, such as when a person has open wounds, is recently released from a hospital or receiving hospice care. But it doesn't provide continuing in-home help for people with chronic conditions, even if they're on life-support systems.

(snip)

Without children helping to provide care, some of these parents would likely end up in an institution, such as a nursing home. Institutional care is generally more expensive, but it is usually covered by Medicaid... Many children become more responsible and compassionate caring for a parent, but it can take a toll... Like new parents, they check on a mother or father in the middle of the night. Interest in school or sports may fade. They wonder what will happen when they turn 18 and want to go to college or leave home, and whether their parent will be able to cobble together care from neighbors or other relatives... Having a son or daughter provide what is, at times, intimate or serious care adds another disconcerting dimension. But parents may have few options.

(snip)

http://online.wsj.com/article/SB116794634535767450.html (subscription)

[flamin lib]

1. I'd be SOL. My kid is at the poverty level for her family of four. nt

[MountainLaurel]

2. Score another one for our fabulous health care system

And we dare to call ourselves a first-world country?

[rinsd]

3. Ummm what does this have to do with our health care system?

Kids have been caring for their parents for years.

What has happened is medical advances are allowing previously institutionalized people to live at home and for longer.

[burythehatchet]

5. It has everything to do with healthcare financing.

And this phenomenon of a "sandwich generation", adult children caring for their parents AND their kids, is recent.

[MountainLaurel]

6. Most countries have better support systems

For people who need medical and other assistance. Access to nursing homes, occupational therapy, home medical assistance, et al. is not a crap-shoot that depends on your income, location, etc. For instance, my husband's former coworker, a research fellow from Scandinavia, had to have his mother put in a home, and there was never any question about whether her income or assets would be enough or too much (in the case of assets), or whether the home would be a safe, healthy place for her to be. Similarly, in those countries you don't see parents having to relinquish custody of their children in order to get them medical care (as often happens with mentally ill children or those with severe disabilities).

[burythehatchet]

4. Some states are finally recognizing

that it would be cheaper to pay the family member for in-home care as opposed to $70,000 per year for skilled care. The programs are medicaid waivers at this point but the financial no-brainer will certainly encourage quick codofication.

[kineneb]

7. burnout comes so easy

I am caregiver for my spouse... damn, is it exhausting. I know how the kids must feel. My therapist has suggested that I take mini-vacations, in order to continue staying (relatively) sane and healthy. I hope I can find the help for respite care.

[question everything]

10. Please contact your state social services

to find about respite help.

If you are burnout, you are of no use to your spouse.

I wish you well.

[LeftyMom]

8. In home care costs $180 a day? I have a friend who does the work and barely makes that in a week.

I knew the service she works for took a large cut, but damn! Poor girl works herself to the bone and all she gets for it, other than the love of her clients, which is great but not accepted as payment at the grocery store, is underpaid, overworked and bone tired. Oh, and permanent temp status.

[Nabia2004]

9. 24 hour day X $7.50 hr = $180 - nt

[SoCalDem]

11. My friend was a home health aide.. she made $7 an hour and the company

billed $25 an hour ..She had to give it up, because when ther (mostly elderly) clinets wanted to talk to her (most were terribly lonely), she would not have the heart to duck out, so she was always getting "talked to" by her boss for taking too long to finish her days ..