July 24, 2014

The Ah Ha's are Coming

Neither of my mother’s two doctors, her internist nor her neurologist, have diagnosed her with dementia. Regardless, the diagnosis fits. There are so many symptoms and behaviors that she exhibits for which there is no other explanation and the disease explains SO much about what is going on with her that has been a mystery to me and to other family members, now and for a while.

If we accept that my mother not only has dementia, but is currently at the end stages of the disease, then it only follows that she has had dementia for a very long time. In the past, my cousin and I have made passing comments, almost jokes, about the fact that my mother acted demented, often, but I never really considered dementia a possibility that her doctors should investigate. I do remember insisting that she go to NYU for cognitive testing. The tests required a series of visits during which she had to complete puzzles and other tasks. The tasks were hard and she didn’t like them and, frustrated, she aborted the testing process and claimed the whole thing was “pointless”. Later, in 1995, when she was first diagnosed with epilepsy after a series of small seizures or mini strokes, the epilepsy became our main focus. I should have realized that my mother could have both epilepsy and dementia simultaneously. But, in my defense, I am not a doctor! We attributed a lot of my mother’s behavioral issues to untreated chronic depression, which I’m sure was also a huge factor.

Now, thinking back, the dementia explains a lot. We have had so many baffling issues, fights, arguments and misunderstandings in the past that were so illogical and irrational that I often doubted my own sanity.

Dementia explains my mother’s increasing forgetfulness over the years. Often, she would generalize her conversations and once she had shared information with one relative, she would become frustrated when another relative would not understand what she was talking about because she believed that she had shared the information with that person as well. This happened often.

Dementia explains why, on a day when we were gathered at my mother’s house for brunch to help my daughter gather seed ideas for her college essay, my mother was frustrated at being left out of the conversation because she was unable to follow the threads of ideas as Elsa’s topic began to materialize and gel.

Dementia explains why my mother could never remember or learn how to solve simple issues with her computer and email (such as closing open windows) even after repeated tutoring sessions will all of my family members and carefully written notes and reminders nearby. She simply could not take in  and make sense of this new information.

Dementia also explains my mother’s gradual growing distasteful and hurtful mistrust of me, her only child, which was completely unfounded and caused me to doubt my loyalty and performance as her child. Was I not attentive enough? Respectful enough?

Dementia explains why my mother accused both her devoted former aid of five years as well as her own niece who volunteered to be a caregiver one weekend of hunting for and stealing her cash supply.

Dementia explains why in 2010, her lawyer called me in tears because a three page will that was supposed to take two office visits and no more than three hours to execute ended up taking weeks because my mother refused to accept the limits of NY State laws.

Dementia explains why my mother complained that her balance was off several weeks ago when she could still walk, a prior side effect of her epilepsy medication. Her nurse thought she was misunderstanding a feeling of weakness, but dementia interferes with balance as well.

Dementia explains why now, my mother can no longer walk and spends most all of her time sitting in a chair. She needs pillows to hold her head up as she sits.

Dementia explains why recently she asked me how horses are mounted prior to being exercised at the racetrack, thinking about a series of jobs I had as an exercise rider 30 years ago.

Dementia explains why some days my mother has no speech, no words-just facial expressions. Other days she speaks normally and with a complex vocabulary. Yesterday, she was using nonsensical words and jumbling up her sentences.

Dementia explains why my mother’s sleep cycle is off, and how she is often awake during the night and sleeping most of the day.

Dementia explains why my mother panics and pleads for help, calling neighbors on her cell phone, not understanding that her brain and her body are ‘trapping’ her, not some outside person. It explains why she called the police at 4 am.

Dementia explains why my mother accused me of dropping a kitten off in her apartment and later, why she accused the sub nurse of smothering the kitten.

Dementia explains why my mother can no longer take care of her own hygiene. It explains why on many days, she refuses to bathe.

Dementia explains why my mother feels that she needs to use the toilet every five minutes, or, fails to feel the need to use the toilet.

Dementia explains why my mother cannot feed herself any longer. Her arms are too weak to lift her fork. Her hands are too rigid to curl around the stem of a utensil. She cannot control the movements of her arms and fingers.

Dementia explains my mother’s sudden and rapid decline, beyond her IPF diagnosis in January of this year. At Christmas, she was so different.

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