The Aftermath of Alzheimer's Disease

The hardest thing I've ever had to deal with was early exposure to Alzheimer’s Disease. Nothing has caused me as much pain as having to watch this illness strip away every sense dignity from someone I love, until all the aspects of their identity and who they are disappear.

My first experience with Alzheimer’s was when I was eight. I grew up in my grandparents house and was very close with my family. My grandmother’s brother, my Uncle Louie was diagnosed when I was 8 years old. My mother was appointed his conservator, and I generally saw him on a biweekly basis. Everyone always talked about the care he needed, his lapses in memory.

I didn’t see any of that. Somehow, he never forgot me. He would forget my mother, he would forget his wife had passed 15 years prior, but when I walked in a room he always knew my name right away. He’d take me down to his piano and teach me how to play as though nothing was wrong. I’ll never know why he held onto my memory, perhaps I was a trigger for him. Either way, I was too young to comprehend what was happening and unable to see the big picture of what family was going through. I was also too young to realize that Alzheimer’s Disease affects everyone differently.

He lived with Alzheimer’s Disease for 8 years, and was the first person that I had ever lost.

In 2004 I was 13 and my grandmother was diagnosed with Alzheimer's. I'd lived with my grandparents for the majority of my life (single working mother). Before the disease my grandmother (my Bubbe) was a powerhouse. She was brilliant, a tough cookie, the boss in charge. She was someone who just emanated pure strength. She was my Margaret Thatcher.

Myself and my grandmother gardening in the backyard

Having a loved one with Alzheimer's disease is so hard, but nothing has broken me down more than living with it. I watched my personal Wonder Woman heroine slip away. I was a little older this time around, much less egocentric and able to see the things around me.

It all started with basic memory loss. A lot of short term information gone. What we did that day or earlier that week, the basic mix-ups of time and place. Eventually it progressed and her judgement became questionable. It's not easy to watch your mother tell Margaret Thatcher that she's taking her keys away so she can't drive anymore. Let me tell you, she didn't forget how angry she was for weeks.

Everyday I'd watch her lose a little more, and get frustrated when she couldn't complete her thoughts or struggled with basic tasks. It must be so hard being aware that you have dementia, knowing that there is nothing you can do.Then the personality changes started happening.

My mother and stepfather couldn't do it by themselves anymore and we required a live in aide. It seemed like overnight Bubbe became this angry, violent stranger. When I was younger she would scold me for using the word "putz" or "schmuck", now she was cursing people out like a sailor, and lashing out at them, sometimes physically. I'd wake up in the middle of the night to hear yelling at an aide who trying to help her, or at my grandfather.

I love that stubborn grandmother of mine so much. She would refuse to get out of the car because she didn't want to and sit there for an hour. She would stand in the yard and make everybody late and wait for her as she pruned plants. She wouldn't let anyone give her a shower if she wasn't in the mood, or do anything she didn't want to.

She was like that throughout my years in high school and being at home was so hard and mentally taxing I wound up being diagnosed depression.

It's different when Alzheimer's is in your home. There's no escape, it's always there. You don't have the luxury of leaving. You don't get to pick and choose when you want to visit or deal with it. It's the first thing you think about when you wake up, and the thing keeping you up late at night. It becomes your life.

I don't know that my mother knows that the reason I didn't go to college right after high school is because I didn't want to leave. When I was younger I had thought it was because of my boyfriend at the time, but as I got older I realized it was because I was so attached to my grandparents I feared being without them.

I went off to a state school about 40 minutes away and came home every other weekend. Staying away didn't help, the depression grew worse until I dropped out of college my second semester and moved to Florida. I couldn't do it anymore, and the guilt was eating me up. I just couldn't watch it, and it was selfish of me, but it hurt too much to stay.

When I came home from Florida to visit was the first time Bubbe didn't recognize me, and that was brutal. The illogical little girl in me hadn't realized that just because my Uncle Louie never forgot me, didn't mean my grandmother would always remember. Even though I spent my entire childhood with her, I became another memory stolen by Alzheimer's Disease.

I started blaming myself. Was it because I left? If I had stayed she wouldn't have forgotten me. Did she not love me enough? Feelings are illogical, and I will admit that my thinking about it was pretty irrational. I let the guilt and insecurity get the best of me.

I moved back from Florida two years later, and that was when the doctors had adjusted her medication regime and the next personality shift happened, she became this docile little lamb. Quiet, sweet, constantly staring off into space. I think that was the hardest transition for me. Even when she was angry she was still my rock, my no-nonsense Bubbe.

She didn't talk much anymore. It took a lot of effort and persuasion to get one-word answers and acknowledgements. Eventually my grandparents were no longer able to be cared for at home and they had to be moved into a facility capable of caring for people who needed around the clock care.

This disease stole everything from her. Her sanity. Her memories. Her sense of self. It took the strongest person I know and left her a shell a person. This disease stole my Bubbe. It took her away from me in the worst possible way, because it was slow and painful. When I look in her eyes I don't see that fire, that spark that was there.

Even as I write my story, I can't stop the tears streaming down my face. Not living with her doesn't change the fact that I think about Alzheimer's Disease everyday. I can't stop the anxiety and overwhelming fear every time my mother loses her car keys, or forgets something I've just told her. I never know- is this human? Is this she starting to show symptoms? Is this the beginning of the reoccurring nightmare? Will this start another vicious cycle that I can't seem to escape?

I'm 25 years old and have had Alzheimer's Disease affect my life for 17 years. It has broken me down to my core every day for the past 13 years. It has destroyed me and continues to hurt me more than having an absent father, any breakup, or physical pain every will. Last year I lost the most important person of my life, and I can honestly say as painful as it was, this prolonged agony has been the greatest torment of my life.

I do not accept a world without a cure for Alzheimer's Disease. It's unfathomable to me. I have to fight for a cure and do everything I can to make sure no one else has to suffer the way my Bubbe did. I've been a part of the Walk to End Alzheimer's Norwalk Chapter since 2014. Either walking, volunteering, and this year I'm honored to say I've been asked to be on the committee. Please help to support me in my walk this year, click the link below to learn more or check out my walk page.

My Walk Page: http://act.alz.org/goto/alisonmadar