Involving the Whole Family in Caregiving
By: Source: AARP.org Date Posted: 2003-09-01 00:00:00-04:00
Usually one person assumes the role of primary caregiver to older parents because he or she is closest geographically, closer to the parent emotionally, or a take-charge person. If you are that person, don't try to do it alone. You need help and the more help, the better. Involving others gives your parents a broader base of support and relieves you of some of the caregiving. The more help you get, the less likely you are to burn out. Just as important, involving your siblings and other immediate family show them they are important to the family and valued as family members. It gives them, too, the opportunity to show their love for their parents or grandparents.
Most caregivers do get help. Many feel that other family members do their share. Working with family members constructively, though, can sometimes be a challenge. In times of stress, we often have less to give to each other. Old family roles and resentments can surface.
There are ways families can overcome barriers to cooperation and create the supportive network they and their parents need.
Involving your parents is crucial.
Unless your parents are severely mentally incapacitated, such as with Alzheimer's disease, they should always retain decision-making power and be a central part of all discussions and actions surrounding their care. Otherwise, it can be difficult for adult children to find solutions and assistance that their parents will find acceptable.
Talk with your parents about the importance of working together in meeting their needs. Your parents are probably concerned about being a burden and losing control of their lives. Talk openly about the issues and agree on ground rules. Establish limits so parents won't have unrealistic expectations.
Involve siblings and other close family.
Family meetings can get everyone involved – and keep them involved – in providing care.
- Limit participation to siblings or others directly involved in care. People who cannot attend in person can participate by phone.
- Develop a series of questions and concerns such as health, legal, economic, or housing issues. Include problems that may have occurred in giving or getting help and following the schedule.
- Every few months, reassess your parents ' situation.
- Bring up anything new that has arisen since the last meeting. Discussing such issues openly avoids hurt feelings and suspicions and gets problems solved.
- Choose a neutral party to moderate, if necessary, to keep meetings constructive.
- Have a clear agenda for each meeting and agree on rules of conduct at the outset.
- Avoid arguing. Stick to facts, not opinions or generalities. Don ' t try to resolve old family wounds.
- Focus on the task of taking care of the parent.
Involve your spouse.
- Keep your marriage a priority and make time to be together.
- Be specific about how your spouse can help. Suggest particular tasks you need done. Thank him or her for all efforts.
- Encourage your spouse to talk about his or her feelings, recognizing that your caregiving responsibilities also affect your spouse in a major way.
- Will your spouse support you emotionally through the caregiving process?
- It helps to clarify responsibilities concerning both sets of parents. Do you each take care of only your own parents or help with each other ' s parents? Will each spouse go with the other on visits to parents?
Involve your children.
- Be honest with your children about the situation and answer their questions.
- Take time to listen to their concerns.
- Spend time doing something fun with them, no matter how tight the time is.
- Ask them if they ' d like to help out with your parents sometimes. Even a toddler can make Grandma feel loved.
- Teenagers may drive their grandparents to the store or on other errands.
There's a job for everyone.
As a family, list what needs to be done and plan for it. Your parents and others who will take on key responsibilities should be involved in planning. This organized approach reduces the stress that comes from "loose ends." It ensures that your parents get all the assistance they need. Back-up plans, where possible, are a good idea. In fact, being available for back-up duty is a valuable role someone may be willing to play. Be sure to write down your plans and schedules, and give all those involved a copy.
A sibling who lives far away can still help with jobs such as paying bills, talking with doctors, researching local agencies, or calling regularly. People with young children can cook meals occasionally, bring the children for visits as appropriate, and take Mom or Dad on errands with the children in tow. Perhaps the children could also help with tasks appropriate to their ages. Don't accept excuses for not helping without suggesting something else a person could do.
Who else to involve?
Immediate family and close friends are obvious choices. More distant relatives, less close friends, neighbors, and community organizations can also provide support. Suggest that these people help in small ways, such as walking the dog, running an errand, watering the lawn and garden.
Contact community and other nonfamily sources of help. Determining who could do what tasks could be a joint effort among those involved in helping the older persons.
- Ask a friend of your parent to pick up groceries or get books from the library.
- A neighbor ' s child might visit after school.
- A local teenager might be available to do yard work.
- A civic group could provide volunteer home repair or transportation services.
- Those your parent sees often (paper delivery person, barber/beautician, apartment superintendent) could call you if anything seems wrong.
- Your friends can provide backup child care or transportation when you need to be with your parent.
- Is there a group of people in similar situations? Perhaps you could start a cooperative arrangement in which you share mutual tasks, such as information gathering and coping strategies.
The Challenges
Overcome your reluctance to ask for help.
- You might hesitate to ask your sibling for help, fearing he or she will refuse and that confrontation will harm your relationship.
- Your husband/wife is already fixing more meals at home, doing more with the children, and having less of a social life because of your responsibilities.
- You don ' t even know your parent ' s friends. How can you ask them for help?
These feelings are natural and, in some cases, you may be right to hold back. However, some people may need only a little encouragement to take on a task. Others may feel hurt or left out if you don't ask for their help.
Deal with changed relationships.
Taking care of a parent can affect all your relationships. You may be more involved with brothers and sisters who previously may have been at the fringes of your life. Your spouse and children may feel neglected. Any existing tension in your marriage is likely to increase. Colleagues at your job may provide a diversion from caregiving. Even if they are sympathetic to your added demands, they still need your work on time. Walking tightropes like these can add to your stress.
Join the "sandwich generation."
When you have both older parents and children who need your time and attention, you may feel caught in the middle and pulled from both sides with conflicting demands. There's little chance to do any task as well as you'd like. There's no time left for you. This increasingly common situation can leave you feeling guilty and inadequate, yet it may not occur to you to ask for help with any of your responsibilities. Do ask for help!
AARP Resources
Caring for Aging Parents: Managing the Details
One of three free one-hour online seminars specifically for caregivers.
Take Time for You
Relaxation and stress management techniques.
Additional Resources
Eldercare Locator
How to locate the nearest area agency on aging and a wide variety of community services to support older adults.
Challenges and Choices: Family Relationships – Elderly Caregiving
An article from the University of Missouri - Columbia.
National Association for Home Care (NAHC)
Includes a checklist to use to select a home care worker and a database of home care and hospice agencies.
American Red Cross
For a nominal fee, many Red Cross chapters offer a series of nine one hour presentations aimed to help caregivers.
Books
Find this book online at Barnes & Noble.com.
" The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life," Nancy L. Mace, Peter V. Rabins, Warner Books, Inc., 2001.
" Complete Eldercare Planner: Where to Start, Which Questions to Ask, and how to Find Help," Joy Loverde, Crown Publishing Group, 2000.
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