Coping With An Irreversible Disease Really Sucks | The Odyssey Online
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Coping With An Irreversible Disease Really Sucks

How my family has dealt with being one of the 5 million families in the US affected by Alzheimer's

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Coping With An Irreversible Disease Really Sucks
Morgan Lee

The first time I heard the term "Alzheimer's Disease" was back when I was probably 13 years old when my grandmother was first diagnosed with early stages of dementia. At the time, it wasn't necessarily something I could comprehend, simply because I really didn't understand the magnitude of what would later turn out to be Alzheimer's.

My great-grandmother lived into her nineties. She was active, healthy, and sharp as a tack all the way until the end. The end actually came when she broke her hip running to Happy Hour at her nursing home, believe it or not. Until this point, my family never really recognized signs of Alzheimer's in our family at all, so when my grandma slowly started showing signs, our family was absolutely rocked.

Alzheimer's is essentially a form of dementia that affects memory, thinking, and behavior of the victim. It's a neurodegenerative disease, meaning that the problems associated with Alzheimer's are due to progressive cell death in the brain. Genetic, environmental, and lifestyle characteristics all contribute to the onset of the disease. There is a lot of unknown in the field currently. There's no treatment, only ways to possibly slow the onset down, but unfortunately, no way to reverse the disease or symptoms.

Now that we got the science background, here's what it's like having a loved one experience Alzheimer's Disease: absolutely excruciating.

When I first visited my grandmother in her original memory care facility, I was shocked to see what the various stages of the disease looked like. For my grandmother, I just never felt she was truly comfortable. She no longer could really communicate what she needed, similar to a young child. She absolutely hated being touched and seemed to be genuinely afraid of her surroundings.

There was one woman in the facility who still seemed to be fully functional and even had been able to trick employees into letting her escape. She was still sharp, but it was obvious her condition sometimes struck when least expected, and as a result, she would immediately become frustrated and very angry.

We are lucky with my grandma, she's what we call a "nice Alzheimer's patient". My grandma has always been the sweetest, most happy-go-lucky woman, similar to my own mother (no wonder). When my grandma began to show obvious symptoms of the disease, she was almost comical about it. When we would ask her a question or say something that confused her, she would simply laugh and say "well, I don't really know". In other patients, the lack of memory or brain function can often lead to frustration or anger (rightfully so) and the person can become resentful. Once again, my grandma has never been this person.

On the other hand, there were several very late-stage patients who couldn't even hold their heads up when sitting upright.

The memory care facility seemed to be very representative of the end of life. It was the end of the road for a lot of the patients and it has been extremely difficult to accept that because of this disease, the grandma I grew up with is pretty much gone now, despite her being alive still.

There has been some silver-lining to this experience, however. This would be the unconditional love I've witnessed over and over again in my family.

Every day, my grandfather takes a taxi (because he can no longer drive) to my grandma's new Catholic memory care facility, where he eats watered down mush for 3 meals and stays by her side from the time she wakes up until she goes to sleep in her little room at night.

My mom and her five other siblings switch off being in Portland, traveling often from Northern California to go up, give my grandpa a break, and see my grandma.

Throughout my time visiting my grandma, I also saw many glimmers of my grandma and who she was growing up. She always loved chocolate and so when we got her a chocolate dipped cookie, it was like watching someone who never had tried chocolate devour the cookie with a smile and giggle after each bite. I also found it fun to list her children's names. I would talk to her about how grown up her six kids were now and although she couldn't quite articulate, she seemed to light up with each name said, showing her memory was still alive, just deeper down than we thought.

Although this disease has been so difficult for my family to experience, it has been something that has also brought us together. The grandmother I once knew may be fairly gone now, but she still shows me that life is what you make it.

Alzheimer's is a deafening disease as it silences the person who once was, but through all of this, I still see beauty and God in my grandmother and family every day because of it. Each step of the journey can worsen her mind, however, each step gives way to little miracles that make it bearable.

To help make a change, donate any amount to Alzheimer's research at https://act.alz.org/site/Donation2?df_id=32112&321....

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This article has not been reviewed by Odyssey HQ and solely reflects the ideas and opinions of the creator.
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