Monday, October 30, 2023

A Caregiver's Nightmare

I woke up in a sweat startled from a terrifying nightmare. Believe it or not I still dream about Mama and sometimes the dreams are not always pleasant, this was one of them. Many times they are anxiety dreams that I didn't visit her or that I forgot to call her. Even though it's been years since Mama has passed, I still have these dreams and I know many caregivers probably do too. This particular dream was bizarre and disturbing.


Mama was in the hospital once again, but only this time there were many family members in the room around her bed. Spoiler alert, family never visited her in the hospital, and only rarely in the nursing home. Everyone was talking very loudly at the same time. They all wanted to tell me what I should be doing for Mama. It reminded me of our family holiday dinners around the table, but not in a good way! The distorted voices were chaotic and frenzied. All of their movements were in slow motion. I couldn't get a word in, which was very unusual for me. Nobody could hear me as I tried to speak. I screamed "I make the decisions, I'm the one that's always here. Where were you all when I needed you?" But no one heard.


I jumped out of bed and realized it was a dream. I slowly tried to catch my breath as I wiped the sweat off of my face. I knew it was a nightmare, because in reality I made sure that my voice was always heard when it came to Mama. I know most caregivers try to listen to everyone, but believe in yourself and follow your instincts. No one knows your loved one like you do.

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Sunday, May 14, 2023

Everyday Was Mother's Day

When I was a caregiver for Mama, everyday was Mother's Day. Like it or not, it was all about her. Whether it was doing her nails, bringing her favorite snacks, taking her out for dinner, a walk through the neighborhood, getting her hair done, making her laugh extra hard or just playing our nightly cards and singing... everyday was a special day.


I felt terrible for other mothers in the nursing home who only had their annual obligatory Mother's Day visits from their sons or daughters. It seemed as though they just didn't make the time or feel the need to keep a strong connection with their mother for the rest of the year. It made me feel sad, so whenever I'd see a mother without a visitor I'd try to engage them in small talk or at least try to make them smile. Sometimes a direct simple look into their eyes and a hello would make them smile. Mama would always get jealous whenever I did this during our nightly visits because it was our time together. She'd often say "did you come to visit them or me"?


As a caregiver you don't have to stress or limit yourself to that one day. Any day could be that special "Mother's Day". Call her, visit her, make the time you spend together count. After all if it wasn't for your mother... you wouldn't be here.


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Wednesday, February 8, 2023

Mama and Her Never Ending Birthdays

I'm going down memory lane because it's that time of year... Mama's birthday. Douglass and I would always do something special for her birthday. When she was physically able to make the trip, we'd take her out to eat in a restaurant. It didn't matter where we went to eat but she always wanted Italian. If not, we'd bring her over to our home for a night of birthday celebration and cook her favorite meal - spaghetti and meatballs. We usually bought her flowers and clothes but she really loved it when we bought her balloons. She would insist on attaching the balloons to her walker, and in later years to her wheelchair.


She kept the balloons attached to her walker for weeks. She would do this for the attention and the joy of getting noticed (as if she needed more attention). She played the "birthday card" until those balloons had their last ounce of helium in them. She'd continue to get extra birthday cake for weeks from visitors and the staff because everyday was her birthday as long as she had her balloons! And if you knew Mama or have read anything about her, you know she loved her cake. 



Whenever I see balloons I think of Mama and her never ending birthday. It lasted as long as the balloons and the endless amount of cake. So this year Douglass and I will toast Mama again and be on the lookout for any stray balloons. We learned early on to always know your loved ones "happy place." Happy birthday, Mama.
 



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Thursday, December 29, 2022

My Nerves Are Shot

Over the years many people have asked me how I came up with the title "Dementia-Mama-Drama". Here's an excerpt from our book "Dementia-Mama-Drama" now on Amazon Books that may further fill in the blanks...

"My nerves are shot!" You don't know how many times I heard that from my mother, one of the original drama queens. I think the first sentence I ever formed as a child was “Mommy, mommy my nerves are shot." 

My mother had me late in life, I was the miracle child. She would always talk about how long I made her suffer during labor. She carried me for nine long months and of course I was late (as usual). She endured twenty-seven excruciating hours in the delivery room and finally gave birth to me. Mama enjoyed telling this to anyone who would listen. That was the beginning of our story together and it explains a lot! 

I’d ask her "How are you feeling tonight?" She'd say "I'm dying,” then start to feign a highly dramatic cough, throw her head back and pretend that she just died. I'd say "Ma, are you okay?" She'd sit up all proper as if nothing happened. "Whaddya mean, am I okay? My nerves are shot." That was just another typical day with Mama. 

Over the years, when friends would ask how we were doing, I’d say “Another day, another dose of Mama Drama.” Then it clicked and we crowned Anna with the perfect title: Dementia-Mama-Drama. 

I had my own daily drama too. I had to deal with the staff at the nursing home - the doctors, the nurses, the social workers, the residents, her roommate and of course, the star... Mama. I knew every staff members name and their shift. It was a twenty-four hour job just getting the phone calls from everyone including Mama. 

Well I told you how I came up with the name Dementia-Mama-Drama, but did I tell you that MY nerves are shot? 

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Saturday, May 28, 2022

The Neighborhood Winemaker

Going through some old photos one stood out from the rest. It was a photo of mama and me having a glass of red wine. It brought back memories for me of her telling the story (many times) of her father making homemade wine down in their cellar. She would say she never loved the taste of wine back then but when we drank it, it brought back her memories of her father who she always missed. 

It became another ritual for us to drink a little red wine with her favorite meal, spaghetti and meatballs! She'd go into detail of how my grandfather would go up and down the cellar stairs in Harlem carrying the bottles of his labor of love. She was very close to him because she was the baby of the family of thirteen and she even named me after him.

Even though Mama is gone, Douglass and I often remember Mama’s story of my grandfather making wine as we enjoy our spaghetti and meatball dinner with some red wine. We always toast Mama saying how we miss her and her stories. And I wish I could’ve met my grandfather, the neighborhood winemaker.

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Thursday, March 31, 2022

A Kiss is Just a Kiss

Since I recently moved, I was going through a few boxes of Mama’s that I kept and came across a bunch of greeting cards. Mama loved greeting cards but especially Valentine’s Day cards. After reading a few of them I started to realize how important they were to her and of the love she shared with my dad. Memories of the two of them flooded my mind and I began to remember their 40th Anniversary celebration party that I threw for them.

I planned a party for a few family members and friends at their favorite neighborhood Italian restaurant. Everyone was eating and drinking and joking, there was a lot of love in the air. When it came time to cut the cake and make a toast I wanted to take a photo to commemorate their landmark anniversary. I had to tell them to kiss each other, they laughed and of course did it. I remember it very well, it was one of the first times I saw them kiss in public!


Anniversaries are full of emotions in many ways, but I never really saw my parents kiss in public. I come from an Italian background jam-packed with emotions, sometimes too many or sometimes over the top. Oddly enough my parents never showed much public display of affection. I thought this wasn’t “normal” for an Italian couple. Nevertheless they had a very special yin and yang relationship. They were always in synch and really loved each other ever since I could remember. They laughed, they played cards, they entertained company serving fabulous food... but they never kissed in public.


Mama may not have always kissed my dad but she always loved to send greeting cards. It became more challenging as she got older. On Mama’s last Valentine's Day, I remember she was still able to write out a Valentines message to me. She couldn’t get a card so it was written on a leftover napkin she had in her purse. It was heartfelt and I hold it close to me until this day. It read “ Vini you’re great, love Mom”. 

I will always treasure that Valentine's "card" and when I made my parents kiss on their anniversary. Perhaps I was playing Cupid! 

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Monday, December 20, 2021

Joy and the Purple Christmas Tree

Christmas trees always put a smile on Mama's face. It didn't matter what mood she may have been in, she would see a Christmas tree and automatically light up. It was almost childlike and very contagious.


I drove by Mama's old nursing home the other day. I wanted to see if the Christmas decorations were the way I remembered them and the way Mama loved them. They didn't seem as bright and cheery this year but maybe it was because Mama was gone.



This year I put up the little purple Christmas tree again (yes purple) the one that Mama loved to see every year at our place when we brought her over to celebrate. It still brings me joy remembering her smile and her saying "only you would have a purple tree"! We'd eat (pasta of course) play cards and sing during our Holiday celebration around that purple tree. I didn't realize it back then that we were making memories... I thought we were all just having a good time. 



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Thursday, July 29, 2021

Elephants Never Forget

    Many people over the years have asked me why was I so protective of my mother and why I took the drivers seat in the role of caregiving. The answer for me was simple, I put myself in her place and I felt complete empathy. 

    Here's an excerpt from our book "Dementia-Mama-Drama" now on Amazon Books that may further fill in the blanks.

    Elephants never forget, but people do. Like Mama, some people get Alzheimer’s. 

I enjoyed Yoga for many years and decided to study and get my degree so I could also teach. The concept of mind, body and spirit is important and helpful. I received two degrees in Yoga, the second one being in “gentle yoga” to help Mama and others like her. When you graduate and become certified, the instructors and Swamis assign you a spiritual name. The name is carefully selected for you based on their understanding of your overall persona. Most students use it when they start teaching. The name given to me was Vinayaka and I loved it.

Vinayaka is a man with an elephants head and he symbolizes overcoming obstacles and was the protector of his mother. How perfect, that was my life story - overcoming obstacles was my middle name! I had obstacles every day when I was a caregiver for Mama. I was very attached to my chosen name. Vinayaka is also another name for Ganesh, a sacred deity. Many people said I was a saint when I was a caregiver, but I just did what came naturally. I learned to overcome many obstacles and was the protector of Mama up until the very end. Maybe it was all something that was just meant to be. Cosmic, Kharmic... call it what you want. 

During our nightly exercises with Mama I'd add some Yoga exercises to the mix. It was like when a parent would sneak some vegetables into the meal. I’d add three part breathing, gentle basic poses and sometimes we'd chant the Yogic “OM” mantra. She was a trooper and did the exercises even though she usually didn’t want to do them. 

Mama always got a kick out of the chanting because she loved to sing. She preferred show tunes, but who wouldn't? She didn’t know what she was chanting and it always made her laugh. Her laugh was contagious and the three of us couldn't stop laughing. Laughter is one of the things that always helped us overcome our obstacles and that's what this "elephant" will never forget.



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Monday, May 31, 2021

Anniversary Of Our Book - What A Year

It's the one year anniversary that our book "Dementia-Mama-Drama" was published! The past year was a stressful and isolating one that we all will never forget. Most of us learned a lot about ourselves and we discovered new things that we did but thought we could never do. Zoom became a common ground for social get togethers and family became even more important.


As for me, I'd rather focus on the positive things that happened for us. Since our book was published, "Dementia-Mama-Drama" was part of The Easton Book Festival. I was a guest author on Memory Cafe and was interviewed live on Leeza Gibbon's Leeza's Care Connection. I was also asked to be part of the AlzAuthors family along with being interviewed on the AlzAuthors Podcast! I was even on a panel with other caregivers for medical professionals discussing Alzheimer's and caregiving for the John Hopkins Alzheimer's Center. OMG, even more events are scheduled for later this year. 

To celebrate all this, I thought it would be a great time to repost one of my first blog posts. We've come along way since then and I know that Mama would've been so excited that her story was being shared with a new audience.

"WHAT'S DEMENTIA, MAMA?"

On one of my daily visits I asked Mama what she knew about Alzheimer's or Dementia. She said it was a disease and that she gets sick just thinking about it. She didn't really want to talk about it. Her response was "I like what I am and that's it". Once again she changed the subject and broke out singing another version of "Some of These Days". Here's the video from our visit.


I usually didn't put Mama on the spot about the subject, but I just wanted to hear her feelings about it at this particular moment in time. 
Some days that's just how we dealt with it.

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Friday, April 30, 2021

A Dynamic Duo

It was recently the anniversary of my Dad's death. I tried to remember things that I missed about my father, but the memories weren't as clear as they once were. I can still hear his almost childlike hysterical laugh when we watched Saturday morning cartoons or The Three Stooges. Thankfully I remember a few things, like how he taught me which subway lines to take or how to get a good deal by bargaining (if possible) when shopping. Oh and of course he taught me to always look down as I walked on the street in case someone dropped money. That was my Dad!

Then I thought about Mama and it was totally different. It's like she’s still here with me. The many memories of Mama are still crystal clear and I realized why. It's because of our book "Dementia-Mama-Drama" and the fact that I'm always on social media sharing our stories and photos while being an advocate for caregivers. It's like she never left.

Mama is still very much a part of my everyday life. I am very comforted by the fact that so many people have had the opportunity to meet her through her story that lives on in the book. That is one of the things she wanted most, not to be forgotten.

Perhaps my Dad’s story will be out there someday, because he was certainly a memorable character too. They were very different from each other... like yin and yang but definitely a dynamic duo. 

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Friday, March 12, 2021

Happy 75th Birthday Liza - Mama Meets Minnelli

In celebration of the 75th birthday of Liza Minnelli I’d like to share a memorable moment when Mama met Minnelli. She never forgot it and talked about it often, Liza was one of Mama’s favorite singers. Proving once again the power of music and the ability to spark memory in those that otherwise seem to have lost that ability. Thank you Liza for the memory and Happy, Happy Birthday!

Here’s a popular excerpt about Liza from the book “Dementia-Mama-Drama” on Amazon Books


There are other things in your life that you never forget, like when Mama met Liza Minnelli. Meeting Liza epitomizes the New York City experience. It was a chance meeting on the street, no anticipation, just another day in the city. 



Douglass and I were walking down the street in the West Village to visit Mama at the nursing home. As we passed by an outdoor café, an extremely animated woman caught my eye and I slowed down. Could it be? No way. Is it? OMG, it’s Liza Minnelli! I said to Douglass “Slow down, listen to me, there’s Liza.” He kept walking and looked at me like I was nuts, he didn’t believe it was her. I looked at him and said “Mama is finally gonna meet Liza! Go back to the apartment and get the camera” (we didn’t have a camera phone back then). I ran across 12th Street to get Mama who was sitting on the bench outside the nursing home. I told her “Hurry, get up, come with me and walk to the corner - Mama, you’re finally gonna meet Liza Minnelli.” Well, I never saw Mama walk so fast with her walker. Douglass now had the camera and the three of us tried to act casual as we strolled by the restaurant. Then we realized that Liza was now standing directly in front of us on the sidewalk smoking a cigarette. Oh my God, “Vin with a Z” was taking “Anna with a Z” to meet “Liza with a Z”. We were totally Z’d to the max! 


I lightly tapped Liza on her shoulder and introduced the three of us. She was very gracious and warm, acting more like an old friend than a celebrity. Insisting on taking a few pictures with us, she hugged us all repeatedly and then signed an autograph for Mama. Liza kept talking and talking as if we had known her for years, just like you would expect her to do. She even joked with me, calling me "Daddy" since my name is Vincent just like her father, Vincente Minnelli, who also suffered with Alzheimer’s.  

 


Liza made our day, but even more importantly she made Mama's day. It was a most memorable meeting, especially for Mama. She loved Liza and went to many of her shows with us. She always kept the photo of the four of us by her bedside in the nursing home. Mama never forgot that day and would proudly tell people about the time she met Liza Minnelli. When we ran into Liza a few years later, I told her about that day and how much it meant to Mama. She was very touched and said “Oh baby, I’m so glad." 

I’ll be eternally grateful to Liza for being so giving to the three of us on the street that day and leaving Mama with a lasting memory. Mama met Minnelli and it meant the world to her. She would tell the story again and again and again. To quote a song from Vincente Minnelli’s MGM film “Gigi”... “Ah yes, I remember it well.” And so did Mama!


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Sunday, February 28, 2021

Just Another Day At The Spa

When we lived in NYC, a feel good fix for Mama was getting her nails done. She loved having her hands massaged, it was heaven for her. She'd occasionally doze off as the manicurist worked on her hands. For the next few days following her "beauty treatment" as she called it, she'd show off her nails to all her friends at the nursing home.

Years later in California, Douglass or I would do her nails since she really enjoyed the "beauty treatment". One day as Douglass was finishing Mama's nails, I started to sing "After You've Gone" to keep her from dozing off. Well it woke her up and then she started...

Mama: Why are you singing that song Vincent? Are you doing my nails to get me ready for my casket?

Vin: You love that song and you were starting to doze off. Casket? What?

Mama: Yeah casket! When I die I want to be laid out in a beautiful gown and have everyone come see me.

Douglass: Anna, when did you ever wear gowns?

Vin: And who do you think is going to come see you in your beautiful gown? Besides you said you wanted to be cremated.

Mama: Ok, ok. No more talk about this death crap.

Vin: You're the one that brought it up.

Mama: Well I don't wanna talk about it anymore. Deal the damn cards, will ya? 

Douglass: Okay, let's play. Your nails are dry now.

Mama: Thanks Douglass. My son is a little son of a bitch, always giving me a hard time.

We dealt the cards and Mama glared at me belting out "After You've Gone" changing the words (of course) to "After I'm Gone." 

Oh yeah, just another day at the spa.

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Friday, January 29, 2021

Recipe For Happiness

Mama always loved food. Mama + Food = Happiness... that was the recipe. Food was something we always talked about, even till the end. When all else failed, I knew the topic of food would never fail. We'd talk about what she ate, what she was going to eat or what she really wanted to eat. As her memory got worse I'd ask her about what she ate that day to see if she remembered. I'd check the menu on her bulletin board daily so I always knew what she really ate. If she didn't remember, she'd say spaghetti (her favorite) or meat and potatoes (always a safe answer).

She constantly talked about cooking and how much she missed it, so I'd ask her about some of her favorite recipes. It became a running joke for me and Douglass because every dish always had the same ingredients. She'd say "a little salt, a little pepper, olive oil and a lot of Italian cheese". It didn't matter what the dish was, it was her stock answer. 


Looking back, it did hold true to most of her recipes. At times it was funny and I'd egg her on to see how far I could take her and what other ingredients she might add on that day. Sometimes she caught on and would give me a look. Then she'd laugh and say "shut the hell up, enough with my damn recipes". It was when she caught on that I thanked God for Mama's recipes and of course "a little salt, a little pepper, olive oil and a lot of Italian cheese".


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