As Laura said in her blog, “The Selfish Caregiver:”

“I’ve often pondered if I regret not telling her to shove it and just moving back and forcing her to deal with it. But as much as I believe in caring for your loved ones when they need you, I also believe that a person doesn’t give up their autonomy just because they get sick. And I’m pretty sure that me, moving back into her house and giving up the stuff she knew I loved, wouldn’t have been selfless–it would have been me, assuaging my own guilt and pissing her off by treating this incredibly stubborn, independent woman like a child. So I respected her wishes, even though it killed me.”

Autonomy is a really important value to consider in making caregiving decisions. It was a big factor in my own caregiving experience—one that I revisit several times in “What to Do about Mama?”

• Talk about what is most important to all of you—autonomy or safety. (WTDAM p.54)
• We would like to emphasize again, however, how important it is to respect care receivers’ autonomy by seeking their opinions and preferences throughout the care-planning process. Promoting the independence of care receivers is key to helping them maintain their dignity. (WTDAM p.189)
• Still, we did a lot of things wrong: We did not include Mom in our initial discussions. Ultimately the decision was hers, but she was strongly pressured. We did not discuss our values or explore other options to moving north. What took precedence? Autonomy or safety? (WTDAM p.32)
• I had the expectation that when you moved here that our relationship, which I always considered to be good, would become even closer and warmer. I felt that living in the safety of our home would allow you to be more independent and active for a longer period of time. I think our first two years were really quite good, but there was always an undercurrent that somehow you perceived me as a threat to your autonomy. (WTDAM p.27)
• Caregiver Experience: Respect for care receiver autonomy. See Nathan’s Story (WTDAM p.190)

And by the way, I really enjoy Laura’s blog. She is a young woman wise beyond her years, having lived through the loss of both of her parents (as well as a good friend) in a short period of time. Also, she doesn’t mince words.

I think that young adults often feel that caregiving doesn’t apply to them. Two of my three children have reacted to my book noting that has a negative tone, but that it is probably helpful “those who need it.” My response? As I stated in my March 9th blog “Long-Distance Caregiving:”

“As much as I support being ‘positive,’ the truth is, who would ever choose to lose their health and abilities on the end-of-life path that we will all travel? And what caregiver would choose this debilitating journey for their loved one? It is never easy.”

Unfortunately, that lesson is now hitting home. My daughter-in-law’s mother had a recent and sudden diagnosis of stage four colon and liver cancer with a very poor prognosis. Caregiving has now become more relevant.

Barbara Matthews