Ramblings on love, hate, and a life worth living
March 1, 2010 32 Comments
February has been a mixed month for my mother, the most painful part being when she went down with fever but could not tell us where the pain was. Being a dementia patient in an advanced stage, she cannot communicate her problems to us, which means we have to be detectives. Much investigation and deduction was attempted, without success, medication given to control the fever. Two days into the problem, she broke and swallowed a tooth–ouch! She broke another tooth again, the next day. Ergo, a tooth infection. Fever’s under control, and a dentist was requested to make a home visit to assess her dental status 🙂 A major project is now to be planned–a trip to the dentist to remove another tooth that is tethering on a breakdown, and to clean up the stuff left behind by the two not-so-neatly broken teeth. That she is fully bedridden makes the challenge more, well, challenging. Ah, well.
But what’s prompted me to write this blog is something quite unrelated, actually, a few unrelated things, that happened these last two weeks.
Firs, I’d like to share a memory dating around seven years ago. Seven years ago, I was still naive about dementia and how it affects people, still thinking increased memory loss was like losing ten keys a day instead of one. My mother was in her own denial mode, unwilling to admit to any memory loss. The world around her (as I can see in retrospect) bewildered her, and she was not going to tell anyone that. She was a fighter, she was. Often I saw her writing with a fierce concentration in a diary, and snap it close when I entered her room. One day, she left it open near her breakfast tray, and there it was, written with a red pen, written so angrily that the pen had torn through the paper. There were many broken sentences on the page, and I stopped short when I saw my name. She had written that she hated me, written it again and again and again, and written about others she hated, and at the end, there was: I hate hate hate the world.
Frankly, I was very upset. I don’t think anyone likes being hated, and having to look after someone who spent her time scribbling that she hated me, and everything and everyone around her, was not just disconcerting, it was disgusting. I don’t remember what I did that day, I think I hit a couple of pillows, I wept, I despaired. Then I moved on with what needed to be done, but that thorn was there inside me for days. The hurt reduced slowly, as I began grasping how hostile the world appeared to her. Then I forgot about it.
I remembered it a few days ago, when I was standing with her, holding her hand. She was smiling at me, and it suddenly struck me that her smile wasn’t just a simple one, it was a full smile that reached her eye and gave her face a character I had not seen for years. Though bedridden and helpless, and unable to speak, she seemed so much at peace. I bent over her, kissed her forehead, and said, as I do every day, I hope you are happy. I want you to be happy. I love you. And my mother, who finds speech an ordeal and rarely utters more than 4-5 words a day, spoke up for once. She said, very clearly: I love you, too.
I think few gifts can be more precious than my mother spending all her speaking energy of the day to say such a thing.
The reason I am writing about this is also because of something that happened around the same time, a conversation with some acquaintances.
I do not socialize much. Firstly, there is a problem of time, but even more, there is the problem of my life being on such a different track that I can rarely find enough to talk about to others. Most of my “circle” is therefore confined to those in similar dementia/ caregiving areas, or fellow writers who know nothing about this part of my life. Still, I have neighbors and acquaintances and occasionally get chatting with them, sharing updates.
So this woman asked after my mother, and I said, “She is bedridden, unable to turn herself, barely able to speak, but still seemed happy and at peace most of the time. She smiles a lot, and holds my hand, and I think she is happy most of the time.”
And this woman said, “It must be awful being dependent like this. What sort of a life is this!” Shudder, shudder. “Wouldn’t she be better off dead?”
I repeated my statements on my mother generally seeming content, even described it a bit, but this woman only repeated her statement about my mother being better off if she were dead, shudder, shudder, and a roll of eyes.
I didn’t know what to say, and I excused myself and walked off, scared I would end up being outright rude to someone who was only expressing what she considered “sympathy” .
I am sure most of us have days we would rather not have. Days when we wish some strange and wonderful force would pull us out of the time and place, and plunge us into a better past, or a better future (and we are sure nothing can be worse). When the woman said that thing about dying, I tried placing myself back into such a day and having a friend walk over to me and look soulfully into my eyes and say, “Swapna, you would be better off dead.” And I shuddered.
So what is it that lets people tell me (and this woman was not the first) that my mother should die? And persist in saying that even after I confirm by examples and descriptions that my mother seems happy enough? Not as if people should die if they are not happy; the world would be empty in a jiffy if that algorithm was applied. What really feels odd to me is that always, always, this statement is delivered in a tone dripping with sympathy.
Okay, so maybe she wasn’t wishing my mother dead, only using a twisted way to express sympathy with me because I was taking care for such a dependent person. She chose to do this in this extreme way though I had not expressed any overwhelm to her. But does this woman really think I’d be better off if I continued to look after my mother while a part of me wanted her dead? How could caring be easier if the carer resents the patient for living?
I am fairly sure this woman had not registered my description of my mother’s general state of content. She could not hear a word beyond “bed-ridden”. I am also sure that if this woman had seen my mother when my mother was active enough and frustrated enough to hate the world, this woman would not have dreamed of saying she would be better off dead.
I have been rambling awhile, and I’m not really sure what the point of this blog post is, if a post must have a point, that is. Maybe I am wondering why people use the concept of death so easily when applied to people in a state they do not identify with. Why many of us don’t understand that someone may be happy even if he/ she does not possess something we consider essential for happiness. Or perhaps, why people do not think through what they say.
Or maybe all this verbiage is my way of saying that a life that appears troubled and empty from outside may be very worthwhile to the person living it and to the persons around him or her. That sometimes, the gift of a person’s presence comes in sparkling moments. That, as HH Karmapa said at TED India a few months ago, “there are symbols of happiness in every breath we take.” And may we all see them, and understand that others may be seeing them in their lives, even if we cannot understand how.
My blog entries of my experiences of looking after my bedridden mother(she is in late-stage dementia) are available here: Late stage care (Caring for mother).
Resources to understand late stage care are available here: Late-stage dementia care page of Dementia Care Notes
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