Stage One, section 2: Dignity and Decisions
As role reversals take place, allow your care receiver as much dignity and independence as possible.
If you are an adult child who decides to have holiday celebrations at your home instead of your parent's, incorporate your mother's favorite recipes or family customs meaningful to your dad into the celebration, let your mother advise the second generation cooks, and bring out the old photographs or slides from days gone by.
A good activity when the extended family gets together is to make an audio or video recording as a reminiscence tape. Someone asks the care receiver about his or her childhood, family, school, holidays, first job, other jobs, travel, life with spouse and children, places lived, the wars, hobbies, greatest challenge and disappointment, achievements, most admired person, things he or she would do differently if given a second chance, and advice for the younger generations.
Suggested questions to ask as part of a reminiscence tape are included in the Caregiver's Support Kit, available free to any caregiver by calling the National Caregiving Foundation's toll-free number, 1-800-930-1357. The Caregiver's Support Kit has more than 100 pages of information on caregiving with a focus on Alzheimer's but with general caregiving information to help anyone.
Care Receiver's Wishes
Find out what your care receiver's long-term wishes are. Is he or she insistent on staying at home until the end of life, counting on moving in with you, interested in moving to a retirement community that provides different levels of care, or willing to consider an assisted living facility or nursing home later if needed?
It is important to involve an older people receiving care in decision making if he or she is competent. . If your care receiver feels very strongly about staying in his or her own home, you may decide to provide care yourself, bringing in additional services when needed to make remaining in the home possible.
If you accept the role of primary caregiver, do not make unrealistic promises to keep your care receiver at home no matter what. Situations change both for the older person and for the caregiver, and the level of caregiving required may too much for you and your family at some point. Over the years, you could acquire caregiving responsibilities for your spouse and relatives on either side of the family, some of these at the same time, while still working outside the home and caring for your own children or grandchildren. When previous generations made promises like this to their spouses and parents, fewer people were working outside the home or living for as many years with multiple chronic health problems or dementia. Also, there were not as many choices for excellent facility-based care.
Sometimes caregivers of an aging parent think that the best solution is to move the older person to the adult child's home. This can be expensive if home modifications other than minor things such as shower grab bars and wider door openings need to be made. In addition, depending on factors such as temperament of the older person, whether children are still living at home, and whether the older person would be isolated from former friends and activities, this may not be the right choice for the person being cared for or for the caregiver's family.
Informed Substitute Caregivers
When other people come into the home to help with caregiving, let them know how your care receiver prefers to be addressed (first name, Mr. or Mrs., etc.), how to help him or her to the bathroom if help is needed, and what food and activities your care receiver enjoys. One way to do this is to write down these preferences and include them in a caregiving notebook that other persons helping with caregiving can read. For more information, see Stage One, section 5.