Many people believe that caregiving comes on suddenly; that caregiving begins with an urgent midnight call reporting a loved one’s crisis. But when most caregivers think back they realize that it was more gradual than that. They just didn’t call it caregiving. We do ourselves a real disservice by labeling and “disease-ifying” what most of us experience as the normal family life cycle, a cycle of interdependence and mutual support in which we all care for each other at one time or another.
Rosalyn Carter said, “There are only four kinds of people in the world – those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers”.
I would adjust this a bit to say that there are really only two types of people: people who are currently caring for another and people who will be at some point be caring for another.
According to the National Family Caregivers Association and the National Alliance for Caregiving, if you are not currently a caregiver then you are in Stage 1 of Caregiving. I call this stage Anticipatory Caregiving. This is the Information gathering stage where conversation is crucial and questioning is essential. The keyword for this stage is to ASK. Ask questions of your loved one, your healthcare providers, and other advisers. This is the time to gather your information.
Learn all you can now in order to avoid painful conversations later.
- Most importantly, create open communication with your loved one about her or his wishes. This should never feel like “the talk.” Normalizing the family lifecycle of mutual interdependence helps to prevent those painful conversations that feel paternalistic and infantilizing.
- Explore care preferences and options. If you and your family members are uncomfortable asking direct questions such as, “do you want to live in this house forever?” or “how would you like to handle it if something happened and you couldn’t live alone?” begin by listening to stories about family friends who have experienced illness these are often jumping off points for preferences.
- If you haven’t already done so begin to learn what you can about the financial situation should future care be necessary and with your family member consider consulting an elderlaw attorney.
- Start a caregiving journal to record goals, plans, actions and concerns.
- Know your family member, look for yellow flags, don’t wait for a red flag crisis call in the middle of the night. Be alert for subtle changes in everyday behaviors.
For more information on caregiving statistics and anticipatory caregivimg resources, please visit www.caregiver.org. Portions of this article appear in a blog post by E. Ayn Welleford, Gerontologist, PhD and Chair of the VCU Department of Gerontology at www.liftcaregiving.com.