Any experience is different for each individual. There is no standard way of responding to anything. On top of this, as a care giver you feel like you are the only one dealing with issues. On top of that, you feel guilty, because you know there are other people with far harder situations to deal with. I am certain too, that the patient feels completely alone with the diagnosis reminding them that they are no longer who they once were.
It becomes a circle.
It would be totally remiss of me to say to anyone "I know how you feel."
You know what I would like to say and hear: "How do you feel?"
Do you realize how guilty I feel being the well one? Do you know how ashamed I am when I complain and moan about something trivial like a door banging or a burnt piece of toast? Do you understand that part of me is dying and I am saddened that it is only emotional as it can't match the physical time left for my husband?
Do you know that I watch him sleeping and whisper "get well" for hours? Do you know the times I've cleaned the bathroom in a day? Found the missing belt in a day? Changed the odd socks and shoes, quietly, without words? How many times I have to alter my day? How many times I reassure that yes it is OK that people see him with me? How many times I have to lie and say everything is great? Do you know how many times I stop myself from telling him something, because I know it's too confusing? Do you know how many times I have to hear how fat I am, how old I look? When will I exercise, when I will I run, when I will get more money?
Constantly caring and constantly questioning - am I doing the right thing? And now? And now?
The well is not endless. Its not an award I want, it's reassurance. It's not advice I want, it's a listening ear.
It's not an hour given with an annoyed tut. It's an hour offered honestly and thoughtfully.
Loneliness, love, shame, sorrow, laughter, guilt, bitterness, despair, determination, hope, bewilderment, depression, curiosity, wisdom, anger turned inward, low self esteem, emptiness all come way before tiredness.
How do you feel?
This is a very brave post, Jayne. It is good that you shared it.
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