dementia & a daughter’s care

Dementia describes a group of symptoms that impacts normal functioning, specifically with language, memory, thinking, judgment and behaviour.

Alzheimer’s disease (AD) is the most common form of dementia, a new case is diagnosed every 5 minutes.

AD begins slowly. It first involves thought, memory and language. People with AD may have trouble remembering things that happened recently or names of people they know (more so than normal age-associated memory loss).

In AD, over time, symptoms get worse. People may not recognize family members or have trouble speaking, reading or writing. They may forget how to brush their teeth or do other daily tasks. Later on, personality changes (anxious or aggressive) and confusion (wander away from home) may set in. Eventually, they need total care. This can cause great stress for family members who care for them.

Here is an exerpt from Sunita Pilley’s article in Elephant Journal describing her experiences with her father, Alzheimer’s and a Daughter’s Memory. It’s a beautiful piece about the realities of caring for someone with dementia, as well as making bigger connections. Much love xo.

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I’m doing my daughterly duty with compassion, and even though it’s exhausting, I don’t care. My dad’s comfort is worth it. I just don’t know how my mother does all of this 24/7; I really don’t. Thankfully she has angels in her life.

I don’t know. This sucks. Not just that I have to take care of him, but that I can’t talk to him about anything. I kiss his hands. The same hands that once expertly clipped aneurysms, now gently yet nervously fidget with no stimulation. These are the same hands that used to pick me up when I was a child.

When my father was diagnosed with Alzheimer’s disease, my family didn’t have any emotional conversations about it; I suppose we were all in shock. One day he was a renowned neurosurgeon with over 25 years experience, and the next day he was asked to see a psychiatrist before returning to the hospital. He hadn’t harmed any of his patients, but there was evidence that he was forgetting things enough for people to be alarmed. And when the psychiatrist asked him what year it was, dad said 1993. But it was 1997.

I was barely 25. I thought Alzheimer’s was a disease for old people, like really old people, and my dad was just 63. As a neurosurgeon, he knew the precise meaning of this, as he and the brain were on intimate terms. What tragic irony.

I will never forget the brain.

I felt so sad for him, for his tacit acknowledgement of his forgetfulness, and for his utter certainty that he would never forget the brain. Here was a man who was so passionate about the brain that before medical school, he received a Ph.d in zoology based on his study of, what else, frog brains.

But my dad was more than a neurosurgeon. There was a silent reverence that people had for him that I understood because I idolized my father in a way, even though we had some rough years together during high school. I wish I could tell him now that I knew he was trying his best. I wish I could tell him that he taught me well.

My dad was not a god. He had faults like everyone else, but I choose to remember him, overall, as a very loving and generous personSometimes when I hold his hands, I silently convey all of this to him, and somewhere, beyond the brain, I know he understands.

The early stages of Alzheimer’s disease are the worst. The repeated asking of the same questions can be mind numbingly torturous. It was beyond annoying, and if we didn’t answer him right away, he got crazy angry.

My dad was a constant practice of patience and selfless service.

Dad doesn’t recognize anyone anymore, except my mom and sometimes not even her. The trauma of the diagnosis and the horror of the first five years have come and gone. The rising action and the climax are over. I anticipate the resolution could drag on for some time.

I have learned many lessons from my father not only from his general character and way of being with people, but through stock phrases he was fond of repeating. Whenever my brother and I fought over something, and my father overheard the inevitable, that’s mine, he would remind us in a stern tone, There is nothing called yours and mine here.

My dad taught me the importance of what he called, one-pointed focus, and he gave me the freedom to choose my own path. From him I learned real passion. He was deeply interested in his work, and he studied it voraciously throughout his career. I couldn’t believe those were my dad’s hands. The same hands that used to help my mom fry our family’s constant supply of plantain chips could also delicately operate on a spinal cord. They are a perfect union of working man and artist. And when I look at my hands now, I see not just our physical similarities, but also some greater connection of consciousness between him and I and all things.

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