Susan* joins with other caregivers in recognizing one more essential step she must incorporate into her day: engaging Peter* in meaningful ways. First, by reducing distress and, next, by filling the day. She will need to do activities with him, not do everything for or to him. She has come over a lifetime with Peter to be sensitive to his personal preferences and values. Who he has been. What he has valued. Who he is now. What he values now. Why it matters to him. She has become skilled at letting Peter have his "say" and set some of the priorities. At the same time, she remains aware of his limitations—reasoning and judgment are often flawed because of ongoing brain loss. Still, she pursues what it takes to make a day have meaning and joy for him.
She knows she must manage the environment as she did when she had young children—safety first, then health, and after these, structured activities. She figures out that Peter is capable of doing a variety of things: sorting socks, adding herbs or placing cut carrots and tomatoes into the salad or even learning a new exercise. The importance of stress reduction for her Alzheimer’s partner has contributed to her own sense of ease.
Early on Susan enrolled Peter in Adult Day Health, a program for Alzheimer and other dementia patients sponsored by their local hospital. This has turned out to be a godsend twice a week, when Peter gets picked up and returned home, and spends about five hours in organized activities he enjoys. Peter especially raves about the guitar and vocal guy who comes in once a month with the old 20s and 30s standards. Susan makes certain that Peter never misses this treat. She’s learned to lean back on those days and catch up with her paperwork or attend a volunteer program she’s still involved in. Because Peter is beginning to lose his balance, she plans to sign him up for a yoga class for elders. She’s already met the teacher, and loves her, and has decided to join Peter "just for fun."
A friend passed this along to Susan from her Alzheimer’s support group. She’s now learning to live by this "never-never list" in her daily interactions with Peter:
- Never argue, always agree.
- Never reason, instead divert.
- Never shame, instead distract.
- Never lecture, instead reassure.
- Never say “remember,” instead reminisce.
- Never say “I told you so,” instead repeat, regroup.
- Never say “I can’t,” instead say “let’s do this.”
- Never command or demand, instead ask or model.
- Never condescend, instead encourage and praise.
- Never force, instead reinforce.
(Excerpt from Chapter 8 of Caregiving Our Loved Ones: Stories and Strategies That Will Change Your Life)
*Susan and Peter are a composite, based on numerous in-depth interviews I conducted as part of my research study of caregivers. You can read more about these brave women here.