During the 1980s, Lois Wagner was my boss and colleague at Community of Hope Health Services, a small inner-city clinic that she had founded. In 1990, she joined us at Joseph's House living with and caring for homeless men with AIDS. We have remained close friends even as she moved to San Diego to become a professor of nursing at Point Loma University and then retired to Kalispell, MT where she has lived with and cared for her mother who has Alzheimer’s.
MOVING FROM COMPANION TO CAREGIVER
I have now been with my mother for six years as companion/caregiver. We have slowly moved from being primarily companions to my being her caregiver. However, the caregiving has to be done with some finesse. It truly is like a dance. Sometimes I need to move in close and help her a lot and sometimes I need to back off and let her do things herself. Which means sometimes it seems like I’m stepping on her toes because I moved in too closely and other times I pull away and she almost falls--either literally or figuratively. The transition from companion to caregiver is not always clear or consistent.
Not asking questions
The idea of not asking questions as mentioned in Contented Dementia has been a very helpful one for me. I have found that mom gets very anxious if she is put on the spot with a question even about what to eat. But if I muse out loud, for example, “I’m thinking about either soup or salad today; can’t quite decide; well, maybe we’ll have soup,” she will often either agree or say she’d rather have the salad. It’s been really kind of fun to see if I can reduce the number of questions to as few as possible as a means of increasing her sense of well-being and decreasing times of “ill-being.”
Learning to wait and be late
I am learning to wait and to be late. No matter how much time we plan, it seems that there are always last minute needs that arise and it does not work to try to rush or hurry. In the big scheme of things it’s not so important to always be on time.
If I get too busy or stressed, mom reflects that in both cognitive and physical symptoms. She’s a gauge of my stress level.
Routine and ritual
We have instituted a couple of daily routines that bookend our days. In the morning I read out of a little meditation book and she reads corresponding Bible scriptures. Her Sunday School training is still there and she can even find those obscure books in the Bible and seems quite pleased with herself when she does. Often she will read a scripture that is a little more abstract and she will grin and say “Whatever that means,” and we will laugh and move on. In the evening I was finding it difficult to get her to go to bed. She would say she was going to bed but would just sit there. So, I stand in front of her and put out my hands and say, “Let me help you get to the bed.” She looks up at me with a smile and we walk down the hall hand in hand. I put lotion on her feet and pull the covers up and we look each other in the eyes and say, “I love you. Sleep well. See you in the morning.” I put on her music and leave her to sleep, which she does well.
I continue to learn about change, acceptance, expectations, frustration, flexibility, silence but most of all about love as we make this journey together.