"Bless (his) her heart." It's a comment we hear alot in the south. Usually I hear it when the person has done something we don't think is exactly appropriate. After having read the posts to Sue's blog I decided I'd have a try at getting everybody's blood boiling.
I won't try to speak for Sue, let's just say that if I were writing her message I would not have meant it to be chastising to caregivers in any way. I don't think Sue did either. I would not have meant caregivers should neglect other responsibilities in order to be seen on the board. I don't think Sue did either. I believe Sue's comments were an innocent observation that caregivers need support from other caregivers just as survivor need the support of other survivors.
I remember posting to a survivor's thread once and receiving a sort of chastisement that I am not a survivor and really don't have much right to post to a survivor's topic. I decided I should be a little more selective about my posting because maybe my comments aren't received very well from stroke survivors. I still post to survivor's topics, but not as often.
Burn out? The last time Bill was in the hospital (third time in a month) a nurse told me, one more time, how good it was that Bill has me to take care of him and how I just need to remember that. Honestly, I was rather irritated after another comment she had made that I won't go into here. I looked at her and told her I am well aware of my husband's need for me to care for him. Then I asked, "what about me? Who is here to care for me when I am tired, when I am ill, when I need a day off?" She looked at me as though I had three eyes. The nurse care manager who was standing with her just nodded her head in agreement. She had NO response. This is an RN who deals with cardiac care patients everyday and she had no idea h
ow to give a caregiver a hug or a word of encouragement. She did comment later when my husband was getting ready to come home how concerned she is that her 25 year old daughter is close to having a baby and she just doesn't know whether she is ready to care for a baby or not. I just found it curious but I'm not sure whether I'm a bit "weird" or not.
When I am feeling more than burned out, when I'm feeling like a pile of ashes left by a bonfire, I find strength, love and care at the Stroke Network. I am invigorated anew when I read a post by a bewildered caregiver just beginning our journey. I'm comforted when I read responses posted by stroke survivors supporting one another or thanking the caregiver once again for giving to another without condition.
I wonder and worry when I haven't seen a post anywhere by one of the names I've come to know as "caregiver". In my heart I know though the reason for their absence. I know there are 24 hours in a day and some days there just aren't enough hours to find our way "home". Believe me, if anybody "gets it" about caregiving we do. Four years, deteriorating cognitive ability due to vascular demntion, incontinency, inability to carry on a conversation or make decisions...yes, we caregivers get it. You see, we caregivers are the ones to care for those unable to post and be an active part of The Stroke Network. We are those who know the road the "newbie" will travel and we are the ones who want to provide the encouragement, strength and hope only we can provide.
Merry, Merry Christmas to all!