The Alzheimer's caregiver is often called "the hidden patient." The combination of physical, emotional, and mental strain placed on caregivers is overwhelming, and can continue for several years. It is estimated that more than 11 million Americans are caring for a family member with dementia, yet most of us are woefully unprepared to take on the role.
Just as the dementia patient passes through several phases of the disease, so too do caregivers experience a series of passages as they wrestle with the challenges facing them. There exist several "official" listings of these various stages, but we have chosen to share this version because it was written by a MemoryCare family caregiver:
Six Stages of Caregiving
1. Annoyance. She appears the same on the outside, but things aren't the same inside. So I expect her to be the same as usual: I told her when we'd be there. I told her what to wear. I told her what to bring. She said okay. Why doesn't she remember?
2. Ignorance. The signs are there, but I don't see them, probably because I'm not looking for them. Calling the bank to get her checkbook balance, piling mail on the dining room table, making strange clothing choices, not remembering details -- these are new behaviors, a little eccentric maybe, but nothing to worry about. Just normal aging, right?
3. Denial. OK, she's having some memory problems, but this isn't so bad. I'll just put up a board to write information on, I'll lay out her clothes for her to wear on Sundays, I'll keep her refrigerator stocked with easy-to-fix meals. I'll make everything easy for her. I don't understand that these are logical solutions for illogical problems. But I keep sticking my fingers in the dike, trying to maintain the illusion that she can still function independently, not acknowledging the inevitable.
4. Enforcing. I'm getting desperate now, I've become a Nazi. I'm always correcting her, always quizzing her, trying to cram information into her that she can't possibly retain. She's becoming somebody different, but I'm still trying to make her fit into her old self. She's ready to make the leap to a new life, but I'm afraid to let the old one go. I still haven't figured out yet that it's ME who needs to adjust.
5. Adaptation. Also called "Adjusting My Expectations." As she changes, I must also. What used to work doesn't any more, and there's always a new problem to solve. I have to let go of some to make room for others. Let her pick out her clothes, so what if it's the same thing she wore yesterday? So what if her teacups aren't in their proper place? It bothers me more than it bothers her. I'm confronting the issues now, getting creative with explanations, learning to bite my tongue. And I've started paying more attention to what they're telling me at my support group.
6. Acceptance. I am resigned, and it's a relief to give in. Although I continue to be uncertain, to second-guess what I do, I am calmer and more relaxed. My expectations have changed. I'm not resisting so much. It's an easier place to be, for me as well as for Mom. We are finding new ways to enjoy our time together.
