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.

Holding Hands

Reading the booklet entitled "Dementia" by the University of Western Sydney has been extremely helpful. Although my mother is awake in the above photo, she was sitting up with her eyes closed during much of my visit yesterday, looking and seeming very distant. Rather than just sit across from her and stare, I remembered the advice to touch the person with dementia. So I moved next to my mom and held her hand. She squeezed back and held tightly the whole time I was there. I also talked to her as if speaking to a healthy, responding person. To my surprise, she reacted with smiles, chuckles and more hand squeezes. 

But yesterday was not a speaking day for my mom. She was without words and, only if pressed, answered questions with one word answers and uttered those with great effort. Just the day before, she had been arguing with me on the telephone about not being served what she wanted for dinner, using many words and speaking easily (albeit without logic.)

My mother's breathing was labored, even while on the oxygen machine. He levels were good, though, above 90, even after she clumsily removed the oxygen tubes from her nostrils. Then her chest heaved and she labored harder to breathe.

It seems now each day will be different and we'll never know exactly what to expect. 

de-men-ti-a

• ·      describes a set of symptoms that may include memory loss and difficulties with thinking, problem-solving or language 

• dementia is caused when the brain is damaged by diseases, such as Alzheimer's disease or a series of strokes

• ·      dementia is a terminal illness

    Who knew? Not I! More to follow…

Click here to view the best informational booklet I have seen:

TYPES OF DEMENTIA:

From About.com

Sources:

·      American Psychiatric Association (1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: Author.

·      Vascular Dementia. Mayo Clinic. 2007. http://www.mayo clinic.com/print/vascular-dementia/DS00934/DSECTION=all&METHOD=print

Head Trauma

Dementia due to head trauma can result from a single major head injury or from repeated head injuries, such as in professional sports. The degree and nature of impairment depends on the location and severity of the brain injury. People with dementia due to head trauma often experience amnesia, memory loss, irritability, attention problems, depression, apathy, and other personality changes. This kind of dementia is most common among young males who engage in risk-taking behaviors.

Huntington's Disease

Huntington's disease is an inherited condition affecting cognition, emotion, and movement. It can occur as early as 4 years of age or as late as 85 years of age, but it usually develops in the late 30s or early 40s. The primary symptoms of dementia due to Huntington's are difficulty retrieving memories, problems with executive functioning, and impaired judgment. Memory problems become more severe as the disease progresses, and delusions and hallucinations may occur. Children of those with Huntington's disease have a 50% chance of also developing the disease.

Lewy Body Dementia

Lewy body dementia, named for Friederich H. Lewy, who first described the deposits in the early 1900s, is characterized by deposits of the protein alpha-synuclein inside brain cells. While many symptoms of Lewy Body dementia resemble Alzheimer’s, three symptoms set it apart from other types of dementia: vivid hallucinations, varying levels of consciousness or alertness, and severe sleep disturbances.

Lewy Body Disease

Lewy body disease is characterized by deposits of the protein alpha-synuclein inside brain cells. These deposits impair perception, thinking, and behavior. The deposits are called Lewy bodies, named after Friederich H. Lewy, who first described the deposits in the early 1900s. Lewy bodies are also found in the brains of those with Parkinson's and sometimes those with Alzheimer's, making diagnosis more complicated. Three symptoms set Lewy body disease apart from other types of dementia: vivid visual hallucinations, fluctuating alertness, and severe sleep problems, including acting out one's dreams or making severe involuntary movements.

 Mixed Dementia

Sometimes, dementia is due to multiple medical conditions. In these cases, it's often called mixed dementia. The most common form of mixed dementia is due to both Alzheimer's and vascular disease. Because dementia can be due to so many disorders, obtaining an accurate diagnosis is imperative in order to properly treat the dementia.

Normal Pressure Hydrocephalus

Normal pressure hydrocephalus occurs when there is an abnormal increase in cerebrospinal fluid in the brain's cavities, which puts pressure on the brain. In addition to typical symptoms of dementia, people with dementia due to normal pressure hydrocephalus often experience problems with walking and balance, as well as impaired bladder control.

Vascular Dementia

Vascular dementia is the second most common cause of dementia. It results from reduced blood flow to the brain from either a narrowing or complete blockage of blood vessels that deprives blood cells of vital oxygen and nutrients. Vascular dementia can be caused by multiple small strokes, a single large stroke, diabetes, or hypertension.

Vascular Dementia

Vascular dementia is the second most common form of dementia and results from impaired blood flow to the brain. This can occur either by a narrowing or complete blockage of blood vessels in the brain, which deprives brain cells from the nutrients and oxygen they need to function. Vascular dementia can result from several small strokes that occur over time, after a single major stroke, or from conditions that don't block blood vessels, but simply narrow them, such as diabetes or hypertension. Vascular dementia often progresses in a step-wise fashion. For example, the person might stabilize for a period of time, then suddenly get much worse, then continue to alternate between stable periods and sudden drops in functioning.

I can't tell which type of dementia my mother has. Her symptoms match several descriptions including Head Trauma, Lewy Body, Mixed and Vascular. My mother's personality has changed, she is irritable, she has hallucinations, she talks about 30 years ago as the present, she sleeps a lot, she cannot walk or stand and she has lost lots of her vocabulary. Everything she does takes tremendous effort and makes her tired. She spends most of her day resting or sleeping in a chair. She doesn't dress or go out. She needs assistance to maintain hygiiene. Her decline since January is significant.