"Yes, yes, yes...."
Such were my answers recently to a quiz about caregiving fatigue that I took on a whim as I was researching resources about caregiving. I found the replies to the questions shocking because I thought that I was handling my caregiving responsibilities so much better than a couple of months ago.
It seems as if so many people I know are going through difficult times in the care of their elderly parents. There are many mixed emotions: guilt over not doing enough for the parent, guilt over doing too much and neglecting other family members, anger over siblings not doing their "fair share", anger over siblings interfering with the established care, frustration with the medical establishment for not taking the elderly seriously, frustration with the elderly parent for not taking the caregiver's other responsibilities seriously, guilt over doing the "right" thing and caring for the parent who cared for him in his childhood versus wanting to live one's own adult life before getting too old to enjoy it.
For many of us who are in the caregiver role it seems as if there are no specific answers. Each person's situation is different and each, I would surmise, would say that her commitment has to be the way it is. "Mom wouldn't understand/like if someone else took care of her." It is just the way things are and how things have to be.
Or is it?
I realize that there is a big need out there for care for the caregiver. I absolutely agree that if the caregiver gets sick, everything else can fall apart. My heart breaks when I meet someone and they start telling me about their extended family care needs. Even before the words are out explaining about a family member, I'll recognize the tell tale signs of caregiving burnout: the pooling, panicky, blinking eyes; the "need to reassure" statements; "Things could be worse..., I am blessed..., She did so much for me when I was younger..., It's the least I can do..." All indications that the person is hanging on to sanity with a thread. The loathsomeness and loneliness of feeling that she has to keep these thoughts to herself or be labeled selfish.
I do not have any answers to this quandary. All I know is that no one who experiences caregiving is going it alone. There are many people in the same situation and many feel the same way. I know that each day I wrestle with some aspect of the difficulties in caregiving. Ultimately I want to go through this experience with grace, truth and love. As I travel down this road, I want to say that I learned something positive and that I was joyful even in the midst of struggles.
I can honestly say that nothing has been further from the truth.
So, what to do about it? I really do not know. Because for all the articles written about caregiving burnout and all the advice of how to prevent it, there comes a time when there is nothing one can do but to experience it. You have to go through the fire to come out the other end. Even with the best intention of following the "what to do to prevent" it, burnout still happens. So, I am trying to write my experiences as they happen with the hope that I could help someone else one day. Although I am coming to the conclusion that the person the journaling really helps is me: it gives me a sense of purpose to what seems like a waste of years. (Again, in just writing the sentence I need to clarify what appears to be selfish and fills me with self-loathing. The wasted years is my struggle rather than the care I give.)
What about you? Have you found yourself in a caregiving role? Are you experiencing any caregiver burnout or fatigue? What do you do to prevent it from happening? Have you found any tips?
Let's resolve to join together and share our experiences. If for nothing else, we realize that we are not going this alone. There is help in sharing the journey and collectively caring for the caregiver.