When to bring in paid help with caregiving

There is rarely one dramatic event that says it is time. It builds up instead. Transfers get harder. Nights get longer. The caregiver cancels her own dental appointment for the third time.

NCI puts the guilt in perspective. Many caregivers say that, looking back, they took too much on themselves, or they wish they had asked for help from friends or family sooner. That is worth reading twice if you have been putting this off.

The National Institute on Aging opens each type of service with a question about the person you care for. Do they need help with chores such as housecleaning, yard work, grocery shopping or laundry. Are you worried they are not eating nutritious meals, or are eating alone too often. Do they need help paying bills and filling out health insurance forms. If they live alone, are you concerned they will become sick, fall, or get lost when there is no one around to help.

Your own state counts too. NCI lists the physical and emotional changes caregivers may go through: fatigue, a weaker immune system, sleep problems, slower healing of wounds, higher blood pressure, changes in appetite or weight, headaches, anxiety, depression, or other mood changes.

Either set on its own is a reason to look into help. Both at once is a reason to do it this month.

NIA keeps these apart, and the difference matters. The cost and the training needed are not the same.

• Home health care. Clinical support with medicines, wound care, medical equipment, and physical therapy. Visits may last a few hours a day or run around the clock. This is often what gets set up after a hospital stay, or to manage a long-term condition.
• Personal care. Trained aides help with bathing, dressing, grooming, using the toilet, eating, and moving around.
• Help with everyday activities. Housecleaning, yard work, grocery shopping, and laundry — the jobs around the person rather than on them.
• Friendly visitor and senior companion services. NIA describes volunteers who pay short visits, less than two hours, giving support, assistance and companionship. Volunteer services are available at no cost.

Work out which one you need first. Otherwise you may pay a clinical rate for a household job. Or you may expect a companion to do a nurse's work.

NIA's starting points are concrete:

• The Eldercare Locator, on 800-677-1116 or at eldercare.acl.gov.
• Your doctor or health care provider, for recommendations.
• Your local Area Agency on Aging.

NIA also describes geriatric care managers — usually a licensed nurse or social worker specialising in geriatrics — who can help work out what is needed. For a cancer family, the oncology team is worth asking as well; NCI suggests building a relationship with one or two key members of the care team, such as a nurse, social worker or patient educator.

NIA is clear about checking first. Get as much information as you can about a service before you sign an agreement. Check references before you hire a person or a company. Use Medicare's online comparison tool. Check with the Better Business Bureau, and with state and local regulatory agencies.

NIA also publishes a worksheet called "Questions To Ask Before Hiring a Care Provider." That beats trying to invent questions in the middle of a stressful phone call.

The time to be thorough is before the first shift, not after a problem.

NIA lays out the coverage picture plainly. Medicare provides limited coverage for certified home health services, and only for the short term. Medicaid covers some services, and benefits vary by state. Private insurance usually does not cover most home services. Volunteer services may be free through nonprofits. Paid options are charged for. Anything not covered has to be paid privately.

Costs differ by service, so ask each one directly how it charges — by the hour, by the day, or by the week. Your oncology social worker is the person most likely to know which local programmes have reduced fees.

Help does not have to start with a full-time arrangement. NCI's advice is to take an honest look at what you can and cannot do, then think about which tasks you could turn over or share. Errands and appointments are often the easiest to hand off first.

NIA describes respite care as short-term relief. It can last from hours to several weeks. It can happen at home, in a facility, or at an adult day program. That is often the easiest first step to agree to.

One afternoon a week, every week, changes more than families expect.