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My name is Deirdre Lovell, and I'm the daughter of Evadene Lovell.
Tell us about yourself and your mother, what is life like?
Four days out of the week my mother is at the New York Memory Center. The New York Memory Center is a daycare center under the auspices of the Alzheimer's Association that takes care of adults of all ages. Most of them are senior citizens who are suffering from memory related illnesses. One of the biggest problems for the elderly is isolation. As they develop during the stages of the Alzheimer's disease or dementia, they become more and more isolated. People are less likely to engage with them because it's awkward. Mental illness is awkward. People have a very hard time with it, even relatives.
The diagnosis of Alzheimer's or the recognition of memory related illnesses in families is a tricky thing. They know that they don't know. It's that moment that it starts to accelerate. I noticed a great change in my mother in about 2005. I noticed that she was particularly irritable and snapping. I said, "You're having a second menopause, shame on you." It actually wasn't. It was her managing her anger about not being in control. You have to be very careful about the way you approach her and criticize or offer assistance. All of these things are very threatening to a person who is already nervous about what they're doing.
People say Alzheimer's is the long goodbye, what do you think?
The importance of the disease is only superseded by the importance of us understanding the brain. Alzheimer's disease, the discovery of what the disease is, has actually forced us to look more completely at the whole self, at the intensity of and the power of the human brain. It's quite an instrument. I don't believe that science has really ever equated the power of the brain with more than intelligence. It is everything. I can tell you that who we think we are is much more important than who we really are. Because your perception of yourself, and the way other people perceive you is really how you move in the world.
When you have Alzheimer's, it doesn't matter that you have money. It doesn't matter that you have a family. It doesn't matter that you are comfortable or not. None of it matters. That is the hardest thing to watch. It's like watching a person walk away from society. It's like watching a person go on walkabout. They stop caring about their identity because they can't hold on to it anymore. They can't grasp it. It's meaningless. There is a great loss. There's a mourning. It's as though someone dies, and it's you, and you're there, you're still there, but you died.
What’s it like for you when you’re thinking “This is not my mother”?
For me, it's very painful. One of the tenets of how I get from day to day are the four agreements, and one of the four agreements is never take anything personally. Don't take anything personally because it's not her. It's at that point that you have to become very clinical, and very impersonal, even though you're being kind and respectful, "It's not my mother. That person, that is not my mother."
It's mind blowing that we have all of these things that we are conditioned to do in our society, in the way we live, and then suddenly all of it goes to hell in a handbasket. It's like they can't make sense of any of it. The hardest part for me is watching her have to give it up. She's not giving up gracefully, which makes it even harder because she's proud. My heart hurts for her, as it would because I know who she was, and I know who she is now, and I know that she can't help being angry because she's hard wired that way. Like, who are you before you became you, before you put all these things on that make you the diva that you are? Who is that? Whoever that is, is who you get when you're drunk, and when you have dementia and Alzheimer's.
There is that bond that only mothers and daughters have. It doesn't matter how you feel about them at any given day. You may not even like them very much at all, or you may worship them like, "My mom is my best friend, oh my God," but there is this connection. You can't identify it by anything other than, it's a vibration. It's like, I know that I would have been able to find her if I was an adopted child. I'm happy to say that we haven't gotten to the stage where my mother doesn't recognize me. I'm really happy about that because that would really, that would do it for me. It would devastate me. She does call me her mother sometimes, and I think that's a dig more than anything else!
What did your mother do before Alzheimer’s set in?
My mother was a beautician after the war. After graduating high school she went to Washington DC to work for the war department in the Navy, and she was “Rosy Rivet.” She put detonators in bombs during World War II, surviving that, because she talked to me very often about girls having their fingers blown off, and then standing for hours in rubber boots because there was acetone on the floor. It had to do with preventing igniting the bombs.
When the war ended she stayed in Washington DC, and went to a beauty school. She became a hairdresser, and moved to New York to start a business. It became very successful, she owned a beauty parlor on Fulton Street, in Brooklyn, which was right across the street from what is now the Brooklyn Restoration Plaza, which is a cultural business center, but it used to be the Sheffield Dairies. I remember it very well because I used to jump rope in front the big old dairy. She ran that business for about 20 years. She decided to come out of business because of the change in trends, fashion. Also, the community was on a real downturn. This was after the Vietnam War, so in the '70s. There was a huge surge in drug abuse, so the neighborhood changed a lot, and it became very dangerous, and customers didn't want to come to that area of town anymore. Then she went to work for the City until she retired.
Your mother’s family history is quite interesting, can you tell me about that?
Part of my mother's heritage is my grandfather's migration from the South to western Pennsylvania, and apparently my grandfather had the privilege to go to a historically black college in South Carolina; he was an engineer. He was working at the Navy yard in Newport News, Virginia when my mother was born. The Depression hit. The stock market fell and all of a sudden there was a panic, so my grandfather had to leave Newport News, Virginia. They went to western Pennsylvania, and as an engineer he's thinking that "I'm going to go north and it's going to be better and I'm going to be able to get a job, because I'm an engineer." Mm, mm. He became a coal miner, and those were the days when mining was extremely dangerous, and still is.
Those were what they call the canary days. Miners were only extracted from a dangerous situation if the canary died. She told me about the explosions and the collapses and how coal miners could never be identified when they came out because they were all black. Everybody was black when they came out of the coal mine. We never knew who was who until you got up real close so you could see the eye color, or until they wiped their faces.
That was a really funny story that she used to tell, but it was all part of growing up in this incredible rural environment, where farmers, people shared everything across cultural and racial lines because the environment was very harsh. People really depended on one another for survival. Families were large. I think that is such an important part of her memory and a very profound part of her memory. It's all part of recognizing who she was in the world, because she said, "I never realized I was poor until I came to the city, I never knew we were poor."
This was her “go to” story. It was something that she could always sound articulate and she knew that people would listen, because it's interesting and it's fascinating. She remembered this story well and it was on auto play. I realized within a couple of years that it was the same story over and over, no matter who she talked to. It was the same story without variation. Then I noticed after a couple more years that regardless of what the conversation was about, this was her story, this was her conversation. It didn't even matter that we were talking about travel or the price of kale. It was, "Oh, I was born in Pennsylvania, my father was a coal miner."
A couple of years later, and this is where we are now, there are a few stories because there's the Pennsylvania coal mining story, then there's the detonators and bombs stories, and then Rosy Rivet story. Then there's the hair dressing stories. Now, all the timelines are crossing over. Where she was in the 1920s gets confused with what she did in the 1960s. Where she was in the 1960s gets confused with the events that happened in the 1920s. She doesn't remember where she was when, so all the timelines are crossed over now and that's harder for her. Now, she gets a little frustrated so she doesn't tell the story so much anymore.
Did you live with your mother before she had Alzheimer's or did you choose to move in with her once she got the disease? How has your life changed?
After 9/11, I went to Texas to work. Between 2002 and 2007, I lived away from home, but I came home couple of times a year just to check in on her. I noticed that things weren't going so well.
I came back to New York from Texas to be with her. I did have to make a decision to live in New York and to supervise her care, because I realized that she was getting to the place which she couldn't be completely independent anymore.
It has a tremendous impact on your life, because you have to figure out a way to care for a person that needs you and you have to figure out a way to earn a living. Everybody has different situations. I happen to have a pretty decent situation, but it is a financial strain, it is an emotional strain. I have to be very careful about my own health, because I'm finding that I have very little time to care of my personal needs, my fitness needs, my own healthcare. When I'm not taking care of my mother, I'm taking care of her home. It's an old house, so it needs a lot of love too, and it needs a lot of attention. The things that I desire, the things that I want have to go on the back burner.
I swore that I would never institutionalize my mother because I don't want to see that happen to her. You are still in more control about what happens to them, but what you can't control is the direction that the disease will take because you just don't know. She could wake up one day and not be able to walk. That's very possible because that's the way Alzheimer's behaves. Every single human being that contracts this disease has it in a different way. They experience something completely different. It just lets us know how broad the human experience can be, and how incredibly powerful the mind is, in terms of what we're able to manifest just by thought, and how we manage the things that we create in our lives.
What do you have to say about the way society sees people living with Alzheimer’s?
The health of the citizens of this country is so important, and it's almost diabolical that we're not better at it. Everyone is impacted by the health of the nation, every single one of us. Mental health, it is physical health. There is no physical health without mental health. There is no healthy economy with unhealthy citizens. It's impossible. Our need to, not simply research illnesses that are causing physical, psychological, economic problems for a family, but our ability to look at the way our society operates on a whole, and its impact on the mental health of every one of its citizens.