The Care Community
When You Think the Unthinkable

He sat in the isle seat on the second row of a conference on long term care. He looked to be in his early forties, and I still almost feel the intensity in his eyes as he locked on every word I said. At the end of a lengthy discussion period when the audience seemed to explode with their concerns, he began to speak. Haltingly at first, he told of his wife having a debilitating disease that demanded every moment he could give and still earn a living. The disease was not one that would soon take her life, but it could not be cured nor really improved to any great extent. 


He told his story and then paused because he did not know how to say what he really needed to say. I said, "Sometimes you wish it was over don't you." I think he could have kissed me. Gratitude and tears filled his eyes, and he said, "I love my wife very much. I will gladly care for her as long as she needs me to do so, but on occasions I seem to have some kind of pity party and feel sorry for myself, and end up feeling horrible guilt. How could I even think such a thing?"


I said, "The reality is, how could you not have thoughts like this? when long term care robs us of every moment of our time, every thing we enjoy doing, every activity that helped us relax, and we suddenly find ourselves locked in a world we did not choose or create, we have some losses to grieve, and they need to be grieved. What could possibly be more normal than that? These feelings have nothing to do with whether or not you love your wife. They are simply the normal reactions to the losses you face."


It is hard to even think these kinds of thoughts much less express them. We feel guilty for allowing them to cross our minds even for a second, and we know others will think we are the worst people on earth for having such thoughts. Fortunately, I had met another man in the crowd who was giving similar care to a wife. At the break, I introduced them and watched the magic of sharing deep and foreboding thoughts work its magic. I wished the meeting had ended right then and they could have talked the rest of the day uninterrupted, but I noticed they exchanged cards and were setting a time to get together.


The truth is, at times we all think thoughts we think are unthinkable. That is called normal human reactions. I will often say in these blogs that my calling in life is to run around helping people discover that they are normal. There are no super people. If you discount the really mentally unbalanced people in our world the rest of us are really all about alike. We may put on a good show, but deep inside of us we are and will always be just basic human beings with all of the thoughts, feelings and reactions that go with that condition. 


Too often, these feelings and the guilt involved do not go away when the person dies. The guilt can make the grieving experience much harder and make it last much longer. The regrets we feel, can haunt us in the night, and we have no way to express them for fear we would be judged as not loving or caring. We can be left thinking we did not love as much as we should have and spend the rest of our lives punishing ourselves in payment. I have seen folks who could not move through the grieving process, because they seemed to need to suffer to make up for their lack of loving enough. The pain helped them avoid having to think about how they thought the unthinkable thoughts during the ordeal. 


And we all need safe places and safe people where we can voice these "unthinkable" thoughts out loud. The comments section at the end of each article is a safe place to unload these feelings of guilt and remorse. A place to tell about thinking the unthinkable in your time of stress. I look forward to hearing from you. 


If you would like to respond to this blog, please log in, type in your response in the Comments box and click save. I look forward to hearing from you.



Posted on Monday, January 01, 0001 (Archive on Monday, January 01, 0001)
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Bargaining is a stage of grief, Laura. Hindsight is 20/20 and the what-if's and second-guessing seem to come at us with a vengeance during grief. Truth is we can only do what we think best in the moment we need to decide, and that best is good enough. My understanding of hospice care, unless I'm mistaken, is it is very gentle, caring, easing a person's way to the next life or whatever you believe about what happens after death. When hospice is indicated/initiated, the signs of death are already there, they aren't usually started by hospice. Correct me if I'm wrong, though. Mary
Actually, the truth of the matter is I feel responsible for her death. I put her in Hospice and she died 3 days later... The guilt eats at me and yet I'm not sure I could have prevented it this time yet I can't help but wonder the what ifs...
Thank you for your response. Nothing feels normal to me anymore. I cared for her for 16 years... She couldn't eat, smile, 100% dependent for all cares... I can be just fine and all of a sudden I can feel the tears burning in my eyes and it's seldom I'm in a safe place to cry such as a work, in the store, etc. I don't have a clue what is normal and what is not... I feel more overwhelmed now then I ever have before and yet people think I should be doing all these things for me now... I wouldn't even know where to begin... laura
Even though others seem to try to take away permission for you to miss her and be sad, you have permission to feel whatever you're feeling, Laura. It was a big part of your life and role as caregiver and it is always difficult to lose a child no matter the circumstances. Mary
For 16 years I had been my daughter's care giver from a degenerative disease. She has been in a "wakeful" coma like state for years. More then once I felt this way where I would tell her it was okay to go. Thank you for telling me this is "normal." On Aug. 15th 2008 she passed. The guilt I feel for feeling that way eats at me. I didn't expect to feel such deep sadness and pain from her passing. I was so numb the first month and the last 2 have been hard. People think because of her condition I shouldn't be as sad since she was ill and debilitated. The anger I feel towards them alarms me. Maybe I shouldn't be as sad and no, I wouldn't want her back in pain BUT I miss her and I even miss taking care of her... I feel so lost... Laura
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