Wish We'd Known: Caring for a Sick Family Member

As many as 62 million Americans provide care for aging or ill relatives every year. If you're one of them, these simple tricks can help make this task easier

Don’t avoid the tough talk

Wills and end-of-life care don’t make great dinner conversation, but you need to bring these topics up -- and the sooner the better, says Jeanne Dennis, Senior Vice President of the Visiting Nurse Service of New York’s Hospice Care program. See a lawyer about:

  • A will or living trust, so their property will be divvied up the way they intended.
  • Power of Attorney for Finances, which assigns someone to take care of a person’s finances when they can no longer do so themselves.
  • Health Care Power of Attorney, which states who will make the medical decisions if a person becomes too incapacitated to make their wishes known.
  • A living will, which states how aggressively a person wants to be treated if they have an incurable illness.

Protect your own finances

It’s not crass to be concerned about your money. In a recent survey, 41 percent of caregivers admitted that they help their aging parents financially every month -- some were spending over $6,000 every year on this task, and one-third feared they would have to dip into their retirement savings. “I wish I’d encouraged my parents to get Long Term Care Insurance early on -- by the time I realized they needed it, it was way too late,” admits Jacqueline Marcell, 58, author of Elder Rage. “I ended up paying for their at-home care myself, and it nearly wiped me out financially.” No idea where to start? Log onto eldercare.gov and poke through their pages on health insurance, financial assistance and more.

Keep tabs on their money savvy

It’s hard to imagine hitting a point where you no longer have the energy or mental capacity to keep track of your finances -- but it happens, and the result can be a real mess (unpaid bills, threats of eviction and more) unless family members step in, says Dennis. To nip financial disasters in the bud, gather basic information early. You’ll need a rough idea of your loved one’s income, investments and usual expenses, and also ask where they keep important documents and records, in case you need them in an emergency. Then occasionally sit down with them to peruse their bills and bank statements to make sure they’re keeping on top of things.

Tip: Arranging direct deposit and automated payment for regular bills can help an elderly person stay financially independent longer.

Do the math before moving them in

On the surface, it may seem more economical to care for an aging relative if they’re in your home, rather than across town or in another state. But will you need to add another room? Finish the basement? Install an electric stair lift? According to a recent Remodeling magazine report, just adding a bathroom so a loved one can have even the most basic level of privacy could cost you $40,000. Considering a master suite so you’ll have your own private nook? Expect to pay over $100,000! So make sure you crunch the numbers and see if living together will not only be comfortable, but also financially do-able.

Check for financial aid

There are a surprising number of financial assistance programs out there -- like the Supplemental Nutrition Assistance Program (SNAP), Housing Choice Vouchers and even a Low Income Home Energy Assistance Program. And the National Council on Aging can help you figure out if your loved one qualifies for one or more of them. Just log onto benefitscheckup.org, click the “get started now” button and answer their questions. You’ll get a report describing the programs your loved one may qualify for -- you can then apply right online, or print out the application forms. It’s that easy!

Find the right home

Providerdata.com will help you find a host of nearby options for assisted and independent living communities and nursing facilities. To figure out which might be best, try making surprise visits to see how the places function day-to-day, and chat with residents to see if they’re content living there. Tip: Don’t feel too guilty about considering a senior’s home if your loved one is struggling on their own. “There are so many great social programs offered in long-term care homes -- it’s often a lot better for their self-esteem than being isolated at home,” says James Huysman, PsyD, co-author of Take Your Oxygen First: Protecting Your Health and Happiness While Caring For a Loved One With Memory Loss.

Consider your loved one’s equity

If you’re caring for someone who’s strapped for cash but needs pricey TLC, a reverse mortgage could help. In a reverse mortgage, the homeowner (that’s your loved one, not you) borrows against the equity of their home. There are no monthly interest or principal payments, and the mortgage only comes due when they pass away, sell the house or move out permanently. Reverse mortgages help house-rich but cash-poor seniors pay for home care so they can stay independent longer -- plus you’ll never have to pay back more than what the house is worth when it’s sold. The downside: Reverse mortgages tend to have high interest rates, plus the more your loved one borrows, the less they’ll pocket when they finally sell their home.

Remember, you can appeal denied insurance claims!

Medicare, Medicaid and private insurance companies all accept appeals to denied claims. You can even request that your appeal be fast-tracked if your loved one’s health might be jeopardized by a tedious delay. The process can be time-consuming, but it’s often worth the effort. “When I went to check my mom out of the hospital, there was no wheelchair -- our insurance company had refused to pay for one, despite the fact that Mom couldn’t walk,” says Annelie Rudlaff, 43, in Woodland Park, Colorado. “What did they expect me to do? Carry her around on my back?” Rudlaff managed to find a second-hand chair to get her mom home, but it was four sizes too big. She took on the insurance company -- and won. “It took a year, but they finally paid for a decent wheelchair!” she says.

Get good hands-on help

Think most home care agencies use strict screening strategies when hiring workers? Think again. According to a surprising study at Chicago’s Northwestern Memorial Hospital, only 55 percent of home care agencies do federal background checks, and only one-third perform drug screenings or home visits to make sure elderly clients are being cared for properly. To protect your loved one, choose an agency that’s been certified by the National Association for Home Care and Hospice, suggests Dennis. Ask lots of questions before making your pick:

  • What are your hiring requirements?
  • Do you do drug screenings and federal (not just state) criminal background checks?
  • What health care training do you provide your workers?
  • Are they certified in CPR? Are your caregivers bonded and insured?
  • How (and how often) do supervisors evaluate the quality of care your workers are providing?

Go high-tech

Tools and gadgets can make your loved one happier, healthier and more independent -- and they can make your life a lot less stressful, too. You may have seen some of the basics -- grippers that make opening jars and turning doorknobs easier, for example. If you haven’t shopped for senior tekkie gadgets lately, you’ll be amazed at what’s out there. “When my mom broke her hip, we were able to get her a Lazy Susan-type car seat so she could still get in and out of vehicles,” says geriatric physician Linda Rhodes, M.D., author of The Essential Guide to Caring for Aging Parents. “You can get gadgets that remind them to take their meds, sensors that alert a cardiologist if their hearts falter, faucets and stove knobs that turn off if you forget...the list goes on and on!” A great place to start: abledata.com -- a site that offers objective reviews of almost 40,000 different products.

Share the work load

“I was very fortunate -- my sister and brother-in-law lived close to my mom, so when she had her stroke, we were all able to get involved in her care,” says Henry Winkler, 67, former actor and now author of 23 children’s books. Not every family is so lucky. Often the bulk of the day-to-day work falls onto one person -- and the result can be disastrous: “When my mom fell ill, my closest sister took her in,” says Rudlaff. “But the feeding tube and medications caused a ton of problems, and Mom was up and down all night -- by the time we realized how bad the situation was, my sister was completely fried.” Tip: To keep the work load balanced, arrange a family meeting and find ways to divvy up the drudgery. One person may end up doing a lot of the day-to-day care, but others can still be in charge of tasks that help take the pressure off, like grocery shopping, paying bills, driving the loved one to appointments or picking up their meds from the pharmacy.

Watch for scam artists

“They can become quite vulnerable to victimization if they’re alone and their mental function declines.” Make sure your loved one knows that it’s okay to refuse suspicious offers, like “free lunch” financial seminars, unsolicited investment opportunities and “low cost” vacations and prizes. Also smart: Add them to the National Do Not Call Registry (donotcall.gov). Visit the Direct Marketing Association’s website (dmachoice.org) to weed out commercial mailings they have no interest in receiving. Opt them out of unsolicited “pre-approved” credit offers by visiting optoutprescreen.com.

Ask for training 

People are often nervous about bringing a seriously ill loved one home from the hospital -- they don’t feel confident about handling the medical stuff themselves, says Dennis. But here’s the kicker: Hospice nurses can actually come into your home, teach you what you need to know and then drop in regularly to make sure everything’s okay. “They cover everything from how to tell when a nonverbal person is in pain to how to hook up IV pumps,” says Dennis. “I’ve seen caregivers so excited when they learned how to do these things -- it’s a great feeling to be able to make a very ill person feel more comfortable and secure.”

Learn more online

Check out these three sites for a wealth of additional tips, support and resources:

The National Clearinghouse’s Long Term Care Information 

The National Association of Area Agencies on Aging 

The Eldercare Locator

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