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In between bouts of complaints mixed with abuse, and bouts of quiet only interspersed with gagging and heaving noises, I take the time to escape into Facebook, my life-saving friend and companion. On Facebook I read about what is going on in the world and this takes me out of my very little, tight , hellish world into another bigger, more interesting and varied one.
Yesterday I had a visit by the pain management doctor. An excellent man. Very understanding, very clear, very helpful. He diagnosed the case as per the medical evidence before him. Ruled out “for now” the possibility of any malignancy as there is no medical evidence to show, and requested a nephrologist, a specialist for kidneys to see her and run the case. But most importantly, that she simply MUST be hydrated. She categorically refuses to drink. The tongue fungus is back and am treating it with the pertinent gel, but drinking is of the essence, yet she still refuses.
All day yesterday she would not eat or drink anything, I really don’t know what she is subsisting on. Today I forced her to take one sip of milk with coffee which she likes, she nearly spat it in my face, and maybe three sips of water. Then I get telephone calls that I simply MUST make her drink. I wish those giving instructions remotely would come here and DO it themselves. Maybe then they would be a bit less arrogant about dispensing instructions!
The worst part is the total, constant abuse. Caregivers are human. It gets to us after a while. I am her daughter and I love her deeply and have reached a point where I am losing my temper, and worst of all, with her! This is an untenable situation. She is alienating all the people that are helping her and there does not seem to be anything I can do about it. When things reached an unbearable pitch, I burst into tears and shouted to God to please take me. This helped only temporarily, but really diffused all the pent-up frustrations of the morning. Then immediately afterwards they started building up again.
I am promised a visit by the kidney specialist mid afternoon. A nurse to be sent to set up a cannula and we start IV drips, and another woman to help in the general care. Nothing has materialized and nobody has shown up. I am left to my own devices, I feel so alone, but nobody can do anything more. She just told me that she feels she is dying, that she will rest and give me rest as well. I am not sure what is going on, but am feeling numb. Too emotionally drained to react anymore. Come what may, Thy will be done.
The wind is high today, whistling around the house. Sounds very ghostly, like the sound effects in a scary movie. Very appropriate for the drama taking place indoors. We are now starting a new round of complaints. Her legs are shackled and she needs them massaged. I do that, but of course I don’t do it right, till she angrily tells me to stop, with a sarcastic : thank you very much! If I get this from my own daughter, no wonder the rest treat me as badly as they do.
I am no longer sure if she is hallucinating or if she really believes that she is being abused. I hope to God I can continue to give her the care that she needs. But I really need help. The shift of an Alzheimer’s care giver is four hours, I have been at it for nearly six weeks now at an average of eight to ten hours. I NEED HELP. Only God can provide, for humans are limited in their means and can only provide so much. Distraction. That is what I now need. I am so looking forward to having some friends over next Friday. I NEED this. The break will give me the charge I need to carry on.
I would be really surprised if what I have written makes sense. Each of these sentences has been interrupted at least twice. Enough. I should end this before it turns into utter nonsense.
25 February 2014