The Matriarch

She was tough. She loved fiercely. She conquered everything she touched. She loved being strong. She had strong feelings. People listened to her. And she wanted to be heard. Her kindness mattered. People wanted to be a part of her world. Family was what was the most important to her. She did anything for family. And Friends. You were lucky to be a part of that group. And you knew you were lucky. Her rings were BIG. Her charm bracelet was loud. You could hear her coming. Everyone commented on her jewelry. She was happy to show it off. She would let you touch it. Divine is a word to describe her. She shined. In fact she glowed. She always had platinum blonde hair. She always said that when she dies, her roots better be done… She was classy AF. Still is. She demanded respect. She got it too. She was a dancer. She had passion. She was confident, when being confident wasn’t cool. She was a strong business woman. She could hold her own. She was beautiful. Still is. When I was a kid we would go to Frederick & Nelson. She loved that store. She would wear her long fur coat when we went. She was a looker with that coat on. She wore it so much, after twenty some years she cut it and made it short. People would watch her walk in that coat. She was smokin’ hot and I was the cool 7 year old holding her hand just watching people watch her. She would even wear her black sun glasses too. She had a green thumb. She planted avocados. There were avocado starts all over the house. She was known for them and if you asked, she would give you one. (I like to think maybe that’s why I love plants so much…?) She was a cook. When her and my Uncle had parties, she was the cook. There was no catering. She did it all. People talk about her cooking to this day. Her crab salad. OMG! HER CRAB SALAD!! She was (still is) a night owl. She would go to bed at 3am and up at 1pm. That’s just the way it went. She danced for a living. She taught dancing. She lived to dance. When she slowed down, so did her dance, it was so odd. Maybe this was the start of the change? Not sure. She was fine with it, but would still give it a shot. She had a problem with her foot, so we just blamed it on that. She is my Aunt Dorothy. And at 52, I still call her Aunt Dorothy.

My Aunt Dorothy has been diagnosed with Dementia/Alzheimer’s. The disease is so difficult. There is not a “definition” that fits this disease. She is defiantly different than others with this disease. We all saw signs. We now know the signs started years ago. She slowed down. Things weren’t as important anymore. Which was fine. We all get older. The driving became an issue. But she didn’t want to get rid of her car, because she would drive again. And we all knew she would. But she didn’t. She would tell you that she forgets. But we all do. We knew what she was talking about. But not Aunt Dorothy. This disease wouldn’t take her. I remember years ago (2015) she told me, “My Doctor told me I have Demencia…” I remember looking at my husband and kind-of giving him the look of, “…did you just hear that?” But, it was Aunt Dorothy. Demencia was not Dementia. Right? I never asked my Uncle. In fact, I blocked it out. Nothing could happen to the Queen. Her elegance would stop it. We all love the Lord and we just knew he had this. She was a staunch Catholic. The Lord knew that. So, not her. It hurts.

I had the shear pleasure of living with her for 7 weeks, last year. As I was going through Proton Radiation, I lived with my Aunt & Uncle. They so graciously opened up their home to me. It was my safe space as I was going through so much. I am so thankful I got to be by my Aunts side. I just don’t want her to forget me. Ever. I was scared she would see me and just look at me like – who are you? She never did. I would great her as soon as she woke up. I always go straight to her and say, HI!. Typically, louder than normal. I wanted her to know I was there. She did. Or did she? I never want to know if she didn’t. I always hug her and tell her how much I love her and how much she is loved.

After living with her and seeing/noticing her patterns, I started Googling, TikTok-ing, etc.; to learn more about this disease. I’m passionate about this new knowledge. The crazy thing is there is nothing the same. Yes, the memory is gone. But, not all the way. And it does come back in some moments. Sleeping is difficult. She struggles with that. Therefore, everyone around her struggles with sleeping as well. I have learned that is very common. We will be having a conversation and she will remember people being talked about and then a minute later, she will ask who we were talking about. You learn to just move on with conversation. Which is hard because you want to explain what you were just talking about and for them to remember. But they just don’t. They can’t. But then sometimes she remembers a lot… This disease is just tough.

My Aunt had lung cancer, like 30 years ago (YES – 30) and she survived. She beat the hell out of lung cancer… So, it’s so hard when you see her now and say, WHY? She was so tough. Now she is just so fragile. She still dresses up. Still makes comments if you weigh too much. She doesn’t like jeans with holes in them and will let you know that. She eats good, still likes her Chardonnay, loves going out for dinner – her Chardonnay, BTW, is half Chard, half water. We found it is what works best. She has never really questioned it and we have never explained why we get up and go talk to the waiter right after we order. It’s just a thing. Dessert is her favorite and she will have a chocolate sundae any time of the day. This is semi new. When I was growing up, she did not eat desserts. She was a dancer and watched what she put in her mouth. She would advise others to do the same…

We have cried many tears over this. The fear of her not knowing her family; and you knowing that. It’s so scary. I never ask why her. We love the Lord and have learned that we need to let God take the wheel. I have never questioned this. Because of this situation, I have seen things God is doing around my Aunt. My Uncle is so incredibly patient. He was/is your typical 70’s, 80’s business man. Men took care of business back then. He was short on patience. He made people nervous. Business was his game. It still is… If you couldn’t keep up or see it how he did – you needed to move out of the way. The patience he has for my Aunt, makes me cry. He very softly explains to her. He wants her to understand what is going on around her. Her questions are hard sometimes and it’s just a new, lack of understanding.

My Uncle now cooks. Seeing him cook is so cool. (He’s a really good cook too…) He never had to cook. Ever… If my Aunt knew this – She see’s him cook, but her “knowing” is different – she would crack up. Actually she would probably take the food out of his hand and make him go sit down. It’s that stuff that literally is fun. She still remembers cooking. She remembers recipes at times. She was such a powerhouse in the kitchen. It is so strange to think her cooking days are long gone. Those are the things that hurt. Watching her at the table, waiting to eat and simply not knowing how important the kitchen was to her. She has no clue. That hurts.

About 3 years ago, she asked me to come into her bathroom, she wanted to show me something. I go back and she forgot what she was going to show me. It was fine, we chit chatted and I saw something by the bath tub that I hadn’t seen in YEARS. It was an ashtray. It was my Gramma’s. It is gold. It is in the shape of a beautiful flower. You pull the leaves out and it is a little ash tray and the part of the leave that hooks in to make it a flower, is the part where the cigarette actually lays. I mean, your like, ashtray? Yeah. It was so cool. And when my Gramma had a party, all of the women wanted to use that. I wanted to be a smoker back then, just to use it. I remember just carrying it around pretending I was a smoker. (My Gramma would be mortified – HA!) After looking at this, she remembered why we came back to the bathroom. When I was in 3rd grade, she bought me a perfume maker. She just asked me to give her the first bottle that I made – SHE STILL HAD THAT BOTTLE! It was so cool. The perfume was gone. I thought it evaporated or something. She told me she wore it until it was gone. WHAT?! She actually wore it. Makes my heart so happy.

This is my Aunt Dorothy today. She is still absolutely gorgeous, inside and out, but just in so many different ways. The future is so unknown; but man, she is soooo loved and kind and funny and loving…

According to Wikipedia; this is the definition of both Dementia & Alzheimer’s:

Dementia is a syndrome associated with many neurodegenerative diseases (most commonly Alzheimer’s), which is characterized by a general decline in cognitive abilities that impacts a person’s ability to perform everyday activities. This typically involves problems with memory, thinking, behavior, and motor control.^[10] Aside from memory impairment and a disruption in thought patterns, the most common symptoms include emotional problems, difficulties with language, and decreased motivation.^[2] The symptoms may be described as occurring in a continuum over several stages.^[11][a] Dementia ultimately has a significant effect on the individual, caregivers, and on social relationships in general.^[2] A diagnosis of dementia requires the observation of a change from a person’s usual mental functioning and a greater cognitive decline than what is caused by normal aging.^[13]

Alzheimer’s disease (AD) is a neurodegenerative disease that usually starts slowly and progressively worsens,^[2] and is the cause of 60–70% of cases of dementia.^[2][14] The most common early symptom is difficulty in remembering recent events.^[1] As the disease advances, symptoms can include problems with language, disorientation (including easily getting lost), mood swings, loss of motivation, self-neglect, and behavioral issues.^[2] As a person’s condition declines, they often withdraw from family and society.^[15] Gradually, bodily functions are lost, ultimately leading to death. Although the speed of progression can vary, the average life expectancy following diagnosis is three to twelve years.^[16][12]

These two definitions describe how it all started, how it’s going, and what we might expect. It is sooo different for everybody. It is so hard for everyone suffering with these diseases. I follow several people on social media, simply to learn about this disease. These three are my favorite. You can find them on Face Book or Instagram:

Dan Salinger ( https://www.facebook.com/dansalinger1122 )

Kameron & Sarah ( https://www.facebook.com/p/Kameron-Sarah-100092567840534/ )

debrakostiwcmds ( https://www.instagram.com/debrakostiwcmds/ )

With these three, I have found that everybody’s story is the same, but so different. It’s hard. You get frustrated; but damn it, we LOVE this person. Who you love, has changed, so much. But, we love them anyway. Always. This person, is my Aunt Dorothy.

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