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The Oxford dictionary’s definition is: great physical or mental suffering. This is what the last few days have been to me.
To begin with the responsibility of judging my Mom’s state of health, not having any medical background, and being solely responsible, is a very heavy burden indeed. As she is incapable of actually telling me what she feels, I have to do a lot of guessing. She is also in the habit of trying to mislead me, depending on the whim she has at the time. If she doesn’t want to do something, she can invent a physical reason for her “inability” to do it. If she doesn’t want to go to the hospital, she will never tell me the truth about her symptoms. If she needs extra attention, like little children, she has no compunction to invent some symptoms. This puts me at such a disadvantage in trying to assess the true nature of her state of health.
This thing about a second childhood is quite true. It was clearly manifested by my Mom over the past few days. Fortunately most people understand that this is a normal state where some elderly people are concerned. Otherwise it would have been extremely embarrassing. The childish tantrums, screaming and pretending to cry are sometimes tolerated in a three year-old girl, but definitely not in a woman over 100. Though her behavior has reverted to that of a child, she could in a split second turn into a full adult again, and your treatment of her has to change just as quickly. I have been walking this tight rope for the past three days for eleven hours every day. Tied to her hospital room from nine in the morning till eight in the evening has been torture. To see her physically deteriorating in front of my eyes is both painful and frustrating. The frustration because I try to get her to do what needs to be done for her to regain her health, and she is fighting me every step of the way. I don’t know if she is deliberately trying to die, or if she is now in such an unthinking state as to just refuse anything just for the sheer pleasure of being contrary. Every meal time is torture. You would think I am trying to poison her, instead of desperately trying to help her. For every mouthful I have to negotiate, plead, blackmail or coerce her. She refuses, shuts her mouth, screams at me, pretends to gag, or even cry. By the time she has eaten the minimum acceptable amount, I am exhausted and she is smugly triumphant and in a very good mood, like having won a game. The same with every swallow of any sort of liquid.
The hours between meals is spent in continuously trying to make her physically comfortable, which seems to be an impossible feat. She is both cold and hot, her back hurts and the cushions must be rearranged, her neck is uncomfortable and needs support, her legs hurt and need adjustment of the level of the footstool. She is thirsty, but when given to drink, doesn’t like the taste of the water, a juice is offered which after a sip is rejected and the water is requested again. One sip and then rejected a second time. Then the cushions have to be adjusted again, and we start the whole thing over again. This state reaches an unprecedented pitch if I am on the telephone, or if there are visitors. She resents any kind of diverted attention from herself.
Real torture is not just physical exhaustion, it is the mental and emotional anguish caused by being locked up in practical solitary confinement with someone who you dearly care for and love, but who is no longer there mentally or emotionally. If it wasn’t for the visits by family and friends I do not think I could have endured it and might have suffered a breakdown. My greatest fear is losing my temper if pushed beyond my limit. I know she is not aware of how her behavior is eroding my nerves and very adversely affecting my health, both physical and emotional.
When she was first diagnosed with Alzheimer’s disease I looked it up on the internet to try to find out what was in store for me. All I could find was a great deal of literature about the support needed by the primary care-giver. Not having had any experience in the extent of the effect such a disease has on the care-giver, I was impatient at all this literature and was impatiently searching for more information about the disease, it’s progress and the handling of the patient.
Now I understand why all this emphasis was given to the support to the primary care-giver. The patient is supremely oblivious to anyone or anything outside their own body. Their universe becomes their physical being and nothing outside that has any meaning. Relationships have no weight as they no longer exist in their mind and the people who are there are instruments for their service. The blank look that does not change, and just a demand for help or for a service. Pain. Pain. No recognition, no more love or care, just need, need, give me, give me. Torture. I am out in the cold. No more mother/daughter, just strangers, one demanding services and one complying. The anguish can only be described as torture. No solution. Then in a split second she is back, and my heart breaks all over again. God please help me, give me the strength and the wisdom to cope.
17 Jan. 2014

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