There are so many posts/blogs related to caregiving and caregivers that I have been stuck about where to even start. I appreciate the basics, so I'll start there: what is caregiving and who are caregivers? The American Psychological Association addresses it here: http://www.apa.org/pi/about/publications/caregivers/research/methods/definition.aspx Is it about the number of hours, the assistance provided (whether it is activities of daily living/ADL's - dressing, bathing, toileting, transferring, etc and/or instrumental activities of daily living/IADL's - managing finances and meds, shopping, cooking, etc)? Is it about your relationship to the individual? Is it family, friends, neighbors, professionals? YES, it is all that AND MORE. Other general definitions simply state it is one who provides care to another and their needs. I really like this definition: "Caregiving refers to the provision of assistance to another person who is ill, disabled, or needs help with daily activities. It often requires attention to the physical, mental, social, and psychological needs and well-being of both the caregivers and the elderly person requiring care" (from http://utahcares.org/caregiving-2/) A caregiver may provide some long-distance care, they may identify with any gender, they can be any age/ethnicity/religious persuasion. If you are attending to another's physical, medical, emotional, social, psychological, legal, etc needs, YOU are a caregiver. They may be unable to express their appreciation but I believe it's there.
When I provided care to my Granny I was later judged (and I surely did feel judged, invalidated, even) by a professional in the field to not be 'entitled' to refer to myself as a caregiver. I assume it was because I did not provide regular ADL care? I will not detail here all that I did do, because I am not defensive about it anymore. But I cite it now because it's my firm belief that no other person can understand our individual experience and journey; judgment really serves no one. While caregiving has many similarities/commonalities, each person and situation is unique. What is of service is support, kindness, self-compassion, education, empathy/sympathy, and resources, resources, resources (internal and external)! I also found a sense of humor to be invaluable (and sometimes some wine)! I did not always follow the "#1 rule in caregiving", which is take care of yourself first, I didn't reach out for help a times, feeling I had to do it all myself. This is part of why I formed IDS: to support others who may be doing these same things.
There is a movement away from referring to it as "caregiving" to referring to it as "care partnering". In many ways I appreciate this as I strongly believe words and language have great power. Possibly folks feel less burdened/exhausted/burned out/frustrated/sad to be able to reframe it from less of a "job" to an empowering partnership with your loved one? And certainly partner as long as it's possible: I included Granny in as much as I could for as long as I could (maybe too long with some things that she was unable to truly understand, but I would ask anyway). There came a point for us where partnering was not feasible as she was not able to participate and engage in that way. But sometimes it really did feel like a partnership and she trusted and loved me to her end. At times (like this moment, lol) I still feel the sting of guilt that I didn't do enough or well/good enough. But I wager if I could ask her right now she would say I did my best. We are all just doing our best at any given moment. I don't know that there's a "measurement" or "degree" of partnering with or caring for another. But there definitely is love, being our flawed human selves who get up another day and try again.
~Take good care, Suzannah