The FAQs of Caregiving

You're worrying that your parents may need help in the near future. Or, you're starting to help your parents, which means you're starting to ask a lot of questions. To help, I've compiled the most frequently asked questions about caregiving and the answers you need.

1. Am I up to this? And, what if I'm not?

Everyone has his or her limits as a family caregiver. Its important to respect yours. Its impossible to do it all so look to the community, family, friends, health care professionals and volunteers to fill in the voids.

2. How much will this cost?

A large misconception exists that the government, through Medicare and/or Medicaid, will pay for care of an aging relative (your caree). Medicare, the federal insurance program typically for persons 65 and over, has very limited benefits to cover long-term care needs, either in a home or in a nursing home. Medicaid, a state-funded program typically for low-income persons, pays for the costs of in-home and nursing home care only when an aging relatives income is low enough to qualify for benefits.

The majority of costs associated with a chronic illness or disability are assumed by the family and/or the caree and/or private insurance (including long-term care insurance). According to Valuing the Invaluable: The Economic Value of Family Caregiving, 2008 Update from AARP, the average family caregiver for someone 50 years or older spent $5,531 per year on out-of-pocket caregiving expenses in 2007.

MetLife Mature Market Institute estimates the cost for caregiving services to be:

  • Home health aide (provides dressing and bathing assistance): $20 per hour
  • Adult day service (provides socialization and meals): $64 per day
  • Assisted living facility (base rate): $3,031 per month
  • Nursing home (semi-private room): $191 per day

A financial planner can help you explore ways to finance care. You'll also want to get a durable power of attorney for health care and finances for your caree; an elderlaw attorney can help execute this important document.

3. How long can I expect to do this?

In our most recent survey, family caregivers told us that they expect to be a caregiver for at least five years.

Because this is a long-term commitment, planning for the future is key. Take into account your carees financial resources, your emotional resources and the communitys resources. All these connect to make caregiving doable.

4. Who can I contact for help?

The ElderCare Locator which can refer you to your local Area Agency on Aging. Call 1-800-677-1116. You also can search for help at the Benefits Checkup website: www.benefitscheckup.org.

5. How do I know when my family member can no longer live safely at home?

Put systems into place which help to avoid a crisis. Personal emergency response systems, adult day services, home health aides, telephone check-in services, Meals on Wheels, and volunteer programs all help keep your caree safe.

In addition, AARP has checklists available to help you make changes in your carees living environment: http://www.aarp.org/universalhome/home.html

Often, a caree will resist changes. Usually what's behind the resistance is fear. Respect and recognize that these changes will be difficult for your caree. Start slowly, involve your caree, when appropriate, in any discussions and decisions. Ask for your carees commitment to try any services for a month. Allow your caree to vent, without judgments or recriminations. Reassure your caree that these services will keep him or her at home, safely, and that you want to work together to achieve this goal.

If your caree still refuses, then back off, at least for the time being. However, don't give up. Contact local organizations (such as home health agencies, Meals on Wheels, assisted living facilities, rehab centers) for information about their services, costs and availability. In case a crisis occurs, youll have the information you need to make good decisions about your carees future.

6. This is so depressing! I didnt realize I would feel this way. What can I do?

Often, family caregivers overlook an important part of their experience: The grief they feel at the losses suffered by the caree, by the family and by themselves.

It is depressing, which is why taking regular breaks is important. Its also critical to maintain some hobbies and interests you enjoy. Rejuvenating yourself on a regular basis will help you manage the experience.

In addition, finding support will help you unburden yourself, which will lighten your load. You can join a online support group and/or a group in your community. A problem shared is a problem halved.

7. How can I get help from other family members?

Often, family caregivers feel abandoned by family members, usually siblings, the very people they expected to help. So, how do you get your five brothers and sisters to help out?

Recognize that people are caregivers in different ways. Your brother the CPA breaks out into a rash at the idea of visiting your mother in the nursing home. Suggest that he call her every Sunday afternoon or write letters. Or, ask him to manage her financial affairs. Your sister is conveniently busy every time you ask her to spell you so you can take a break. Suggest that your sister help offset the costs of the companion sitter or home health aide you hire.

Should you force them to help? No. Be specific in your requests, but never demand that help be given. If your siblings refuse your requests for help, accept it. But, don't accept the idea that you are alone. Look to the community for help and for support.

You may find that the caregiving experience changes you and your relationships another good reason to find support and camaraderie among those who will understand.

8. I feel so guilty about everything.

Your caree will make you feel guilty. Which makes it only worse, as you already carry around enough guilt. How do you keep it at bay?

Keep your perspective. Consider, whose problem is this? Does your caree expect you to make him or her happy? That's not your job. Does your spouse badger you about the time you spend with your caree? Try to work out a compromise, so that you have a workable schedule for your spouse, your caree and yourself. And, remember, you can only control yourself, your reactions, your words and your feelings. The rest is up to everyone else.

Asking for and receiving help also can help minimize your guilt. The wider you cast your net, the more help you receive, the better your caregiving experience will be for you and your caree.

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