A Guide for Families

Family Questions: The First Thirty Days: Helping Your Loved Ones Adjust

Finding Help When You Need It

Dad seems to be getting all the support he needs, but what about me? Where can I go for some encouragement and feedback?

To the person responsible for caring for a family member, it may sometimes seem that there is no lack of support for the elderly, but very little support for the caregiver. Check out some of these resources for caregiver support:

Outside the nursing facility

• Many local phone directories now include an index of “helpful numbers” which may include a category for aging or elderly care. Look for state and local offices on aging, plus local programs sponsored by nursing facilities, hospitals or civic organizations.

  If phone numbers are not indexed in that way, check the county and city listings for a local office on aging, the Area Agency on Aging, the health department or local senior facilities.

• Monitor the health section of your local newspaper and the community calendar. Visit the local library and talk to the librarian. Information on support for the elderly and their caregivers often funnels through these sources.

Inside the nursing facility

• Talk with the nursing facility administrators, social workers and staff. They can often sort out and identify the conflicting emotions you may be experiencing, as well as provide some practical solutions for some of the more mundane problems you are facing. Remember that many of the same issues plague all family members in the early days of a new residency; even when you most feel like it, you are not alone!

• If you can find no support group for caregivers, consider starting one of your own. The structure of the group may be as formal or informal as you wish, but you should try to meet at least monthly, even if you're only starting out with a few members.

  Choose a place and time convenient for all and try to develop a particular theme for each meeting. Keep names and addresses of the people who do attend, and ask your nursing facility administrator for names of others who might be interested in attending. Give and take support liberally within the group - sharing with your peers is often the best resource of all.

• The nursing facility may also have a family association or family council that YOU could join. These groups usually meet on an ongoing basis, and feature programs, speakers, family issue forums, social events, and fundraisers.

What is a family council?

A family council in a nursing facility is, in effect, a consumer advocate group, comprised of relatives and friends of the facility's residents. A typical council meets monthly at the facility, is run by the relatives and friends of the residents, and focuses its energies on several established goals and objectives. Usually a staff member of the nursing facility serves in an advisory capacity to the council, but is not actually a member of the council.

What is the purpose of family councils?

A family council has two main goals: to protect and improve the quality of life in the facility and within the long term care system as a whole, and to give families a voice in decisions that affect them and their residents.

Family councils can be responsible for organizing everything from spring cleanups at the facility, to staff appreciation events and welcome visits for families of new residents.

They can also serve as important sources of information and support to families of new residents who are still struggling with both the practical and the emotional ramifications of their relative's new living arrangements.

I want to do more than simply visit my husband in the nursing facility. Do homes ever need volunteers?

Yes, nursing facility administrators are usually delighted at the prospect of a new volunteer, especially one whose family member is a resident. But there are other ways of getting involved as well.

• Ask about participating in one of the various councils the facility may offer, like the Dietary Council, Program Council, Family Council, etc.

• During your visits, don't confine yourself to your family member's room. Get to know the staff, the daily routine, the programs available, etc. Make a point of telling the staff how you appreciate any extra things they do for your mother - remember that she might be unable or unlikely to provide them with the kind of feedback that makes their job more rewarding.

• Find out what services and support groups are available in your area. Contact the nursing facility's administration, the American Association of Retired Persons, the Alzheimer's Association, and other organizations with chapters in your area.

• Inform yourself on political issues and candidates related to the aged on both the local and national level. Write or call legislators about your concerns.