Circle of InfluenceOften, I read how we expect care recipients to reach out for help. This is often difficult. As I watched my parents become increasingly ill, I noticed that my mother was unable to think of my, my feelings, or my point of view. She became very insular. Writers, like Kubler-Ross, especially in her last autobiographical book, speak of how the care recipient begins to make smaller their circle of friends. They become less willing to see other people. They may not want visitors. They are only able to manage their basic daily needs. Small talk, group activities, and their world becomes smaller
The situation I have experienced is that of the caregiver. They, too, shorten their circle, and are often told to reach out for help, but this may be impossible. We make smaller the circle around us, as we turn inward. With little energy to be either social, or socialize, we withdraw from society, community, neighbourhoods, our family or friends, and simply put our energy into existing, and meeting our short-term goals, such as activities of daily living (ADL). There were many times I was unable to cook a meal. I found that housecleaning, grocery shopping, and many other chores weighed most heavily. Not so much making lists, but finding the energy to do the ADLs.
As caregiver to my palliative mother and father, I was only able to manage their care, and ignored my adult children. I was unable to reach out for help. I did not have the energy to figure out what I needed, or whom to ask for help. I was unable to prioritize anything other than managing my mother's care. I would check in with her to see if she needed anything. I would brings her small amounts of the food she needed. I didn't want to listen to the advice an opinions of others. Many might tell us stories of our own situations. My cousins suggested I find a Filipino caregiver to bring into Mom and Dad's home to help them. People do make bizarre suggestions.
What is it caregivers really need?
What we need is someone who will offer respite from 2 until 5:00 p.m. on Friday. Specific suggestions, and specific offers of help. This vague "Let me know if you need anything!" is the least enabling offer ever. We simply do not have the energy to first determine what it is we need or want, and secondly, make the effort to make a phone call to ask for help.