When I reflect on my time care giving, more “case management”, for my parents or observe family and friends in a similar role, the one consistent lesson for me is “respecting the heart”. That seems to be the phrase that captures what I have learned and feel as time has passed and the experiences are internalized.
For my own experience with my parents, this was demonstrated by my father. Even though he was years older than his partner, he was cognitively and physically capable and did not need to be in a care facility. I suggested that he did not need to leave his cherished home on the Gulf Islands but rather could be near to her and visit. He would not hear of this and, even though it likely took years off his health and life to be in institutional care, he had to follow his heart and his heart was with her.
Managing care meant contending with a variety of perspectives from siblings, both in how to proceed and in the emotional responses to dementia and declining health. It appeared to me that emotions such as grief and helplessness seemed to limit engagement and support. Though I did not speak up much at the time, I had strong views then about what I felt was appropriate or not. My gut, and some helpful resources, told me that sibling cooperation took priority over my views. In retrospect, I am more empathetic to individuals and how they must protect their heart in how they perceive care and interact as care givers with loved ones. I see this too as I observe friends and family deal with this in different ways. I might not agree but have to respect it. It makes me think back to ways I tried to protect and cope myself: varying visiting times so as not to create an expectation and possible disappointment, modifying explanations of my schedule, and needing essential time alone in transition between visits and other demands in my life.
It is hard sometimes when the person needing care is cognitively competent and chooses a situation of risk, such as being physically frail but refusing needed assistance, fully knowing the possible consequences. It is tempting to want to take control and minimize or eliminate that risk. However, sometimes caregivers just need to, with great difficulty, step back and respect the choice that a loved one they have has made. Often the person has they have knowingly made this choice as one of control and dignity of self over safety or even longevity.
I have watched a dear friend care for his partner who has early onset dementia. He has chosen years of personal care, finely tuned travel, and difficult decisions. I have seen this bring both the joy and stress of added time together. The clear message being that his heart dictated his path and he would not have chosen any other way for as long as this was possible.
“Respect for the heart”. It can be admirable, a heartache, hard to observe, and difficult to accept but it might too, be the “heart” of the situation or decision and, if so, must be considered and acknowledged.