Monday, January 20, 2014


My mother has dementia. I don't know whether she suffers from it, nor if she still knows herself, or me and my daughter... The doctor spoke about "terminal dementia". I didn't understand what that meant, except that it sounded ominous. So he explained that her brain doesn't know anymore how to regulate certain functions like the regulation of fluids. So her primary caregiver, her husband who is doing a fine job of it, has to see that she drinks enough in order to avoid dehydration. She has days that she enjoys company, on others she sleeps, cannot be reached. I call it: she is not home. My mother is a smart woman, she spoke four languages, has traveled, was really a beauty and she knew how to party... The hardest thing for her husband is that he knows that at a certain point he will not be able to take care of her at home. So he makes all the preparations and follows all steps to see to it that she then will have excellent care. My daughter sees my mothers smiles and the good moments. I see her refusing to eat. She often has to be coaxed to eat... She sometimes tries to speak, yet words fail her. With a gesture, she'll abandon the effort. In the beginning of the disintegration of her mind she tried to cover up mistakes, things she had forgotten, yet on good days one could still have brief, yet meaningful conversations with her. My father a stern and strict man has developed the care giving side of himself. For that I am grateful. So her life is still in her usual surroundings and in a place she feels safe... Yet: terminal dementia is a terrible thing to hear, a terrible fate to bear for all involved so all feast are celebrated, still celebrating life, incontinent and all. Every day a small loss, a small goodbye.

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