Tonight's picture was taken in November of 2003. Mattie was a year and a half old and Peter captured us in the kitchen dancing together. Mattie loved music and he was the boy in constant movement.
Quote of the day: I had friends saying, ‘Oh, I really wanted to call to see how you were doing, but I didn’t want to bother you.’ I thought, ‘Call me. Tell me a funny story. My day was horrible, but if you make me laugh, it gives me a little break.' ~ Meritxell Mondejar Pont
I was talking today with a friend about her role as a caregiver. She provided care for a loved one who died from cancer. After the death, my friend continued serving in a caregiver role to those left behind in the family. Why am I mentioning this? I am mentioning it because it re-triggered my own feelings about the caregiver-caregivee relationship.
I come from a long line of family caregivers. My maternal grandmother cared for many people and in turn my mom was my grandmother's primary caregiver. As a teenager and young adult, I observed my mom caring for my grandmother, who had a major stroke. The stroke left her partially paralyzed and with a host of cognitive and physical disabilities. When my grandmother died, my mom had to find her way back into the world. A world in which the majority of people aren't caring and meeting the needs of a very ill individual. That was a big adjustment, but with my grandmother's death the caregiver-caregivee relationship ended. The people left behind for my mom to care for were my dad and me. But that dynamic did not change because of my grandmother's illness.
This is where my caregiving role for Mattie differed from my mom. When Mattie was battling cancer, we had a whole community of people helping us daily. Whether that was giving Mattie gifts, coordinating meals every day for 15 months, or it was visiting us and sitting through scans and scan results. Though I was Mattie's caregiver, Mattie's community in essence became my caregivers. They understood that I needed a lot of support, in order to effectively help Mattie. But what happened once Mattie died? Well this was the hard part to accept..... many of the members of our community pulled away. After all, the primary purpose for getting involved was gone. What wasn't as transparent to others (or maybe it was and it was just frightening) was the fact that surviving the loss of an only child was devastating and required great support.
I am lucky that I had one particular friend who maintained this caregiving role with me for an entire year after Mattie died. But after that year, the nature of our relationship began to change. I couldn't understand it back then. In fact, I remember feeling abandoned by this friend. I got so used to someone looking out for my every need and caring about me, so when my friend was pulling away from doing this, I was confused. I am not sure what I needed to hear from her back then that would have eased my anxieties, fears, and sadness. I frankly think this is the challenges caregivers and caregivees face with each other. Or at least this is the conclusion I came to after chatting with my friend today.
Now that Mattie has been gone nine years, I have had the opportunity to further reflect and understand that if my friend did not change the dynamic we had with each other back then.... of her being my caregiver, I am not sure our relationship would have ever grown beyond that. When someone is a caregiver, it is a very one sided relationship in a way. It has to be given the unequal nature of needs. A caregiver is typically healthier and is therefore selflessly giving of one's own time and energy to meet the physical and emotional needs of another person. Would I have wanted my friend to be my caregiver for the rest of my life? Well now I can safely say, NO. I couldn't have said that 8 years ago.
I usually am not a big proponent of time, but in this case, time has enabled me to see that when my friend pulled away from her caregiving role, she was in essence forcing the change. Certainly the change could have gone either way..... we could have developed a friendship and or we could have migrated in different directions. But what I do know is a caregiver-caregivee relationship is not a friendship. A friendship is built on two people meeting each other's needs and growing together. Both relationships (caregiver vs friendship) require work for them to be effective, but I just wish I had this insight 8 years ago, when I felt my world was coming to an end when I lost my 'caregiver.' What tonight's blog shows me is my own emotional growth and with that my ability to share this insight with others who will be walking in my shoes.
