Where's the Other One?

It was a rare night that Douglass and I both didn't visit Mama at the nursing home. But this night we were running late so I went alone as he prepared our dinner. I walked into Mama's room slowly trying to sense her mood as I always would do. She saw me and reacted quickly without missing a beat, here's how the conversation went...

MAMA: Did you bring me a piece of cake or a snack? They starve me in this place.

VIN: I don't think they starve you. In fact I know they don't starve you. The staff tells me that you're always asking for seconds.

MAMA: Oh Mister know it all, where's the other one? Where's my Douglass? Why isn't he here tonight?

VIN: Ma, he's home getting dinner ready.

MAMA: Oh, I miss him.

VIN: You just saw him yesterday.

MAMA: Yesterday, last week... who knows anymore? All I know is he's not here now, right?

VIN: Right but he'll be here tomorrow. He sends his love.

MAMA: You are very lucky to have such a good man, I love him.

VIN: Me too! (We both laughed)

I wheeled Mama into the main room and set up our table. I gave her the piece of chocolate cake I brought with me that she was "dying to have". She smiled dropping some on the floor after eating it so quickly.

MAMA: Thank you dear, that was delicious. You know I love cake.

 

VIN: Of course, I know you have to have your cake.

MAMA: Will you bring the other one here tomorrow?

VIN: The other one?

MAMA: Our Douglass.

VIN: Yes Mama tomorrow we'll both be here.

MAMA: Oh good, but please don't forget the cake! I'll be dreaming about it all night.

VIN: I have to go now, dinner should be ready. Good night and sweet dreams.

                       *   *   *

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Movin' With Mama

    Over the years many have asked me how we moved Mama cross country from NYC to suburbia in California and why. It wasn't an easy decision for us but hopefully this excerpt from our book "Dementia-Mama-Drama" on Amazon Books will fill you in. Little did we know what lie ahead...

    

    Mama didn't move many times in her life. She grew up in Harlem and my parents lived in the same apartment in the Bronx for almost forty years, all she knew was New York. Her first big move came when she wasn't able to take care of herself and live alone any longer. She needed to be in a nursing home. It was extremely important to us that she was nearby. I really pushed to get her into The Village Nursing Home just a block away from Douglass and me. It was as tough as getting your child into a good school!

    After she lived there for nine years the nursing home was sold and would be closing. We were very anxious and didn't know what to do. I looked for places to move Mama, but there weren't any nearby. As this drama was going on, Douglass' mom in California became very sick. We received a call that she was getting worse and immediately flew to see her. When we got there she was too weak to do anything that we had hoped to do with her. A few days later, she passed away.

    When we returned to New York we had big decisions to make. There now was an opportunity to move to California where it would be more affordable and a much needed change from city life. Fast forward, Douglass and I bought his mom’s place and brought Mama with us, it all happened very fast. Before moving we researched many nursing homes and found a few nearby. We chose one that we thought would be a great place for Mama, but shortly after being there it wasn't what we had hoped it would be. At least it was within walking distance from us and it had a beautiful garden that she loved. 

    We packed up Mama for her very first plane ride. I worried that she might freak out knowing her anxieties but surprisingly she loved it! She sang "California Here I Come" in the cab to the airport, on the plane (many times) and when we landed.  

    Her first flight had to be special so we flew first class. Our plan was to keep her distracted. We kept her entertained the entire flight by singing and watching video clips of old musical numbers and playing tic-tac-toe. When this didn't work we'd plug her into our iPod. The earbuds kept falling out and she'd curse out loud, it was quite comical. She kept saying that she loved the flight and felt like the plane was hardly moving. Thank God, the flight was a hit. She was in seventh heaven eating nonstop and lucky for us they served lasagna! The biggest treat for Mama was when they rolled the ice cream cart down the aisle and she had a custom made sundae with the works.

 

    When we landed we were exhausted but still had to drive from the airport to the new nursing home. For Mama the reality of being in a different place and in a different time zone was overwhelming. She finally had a meltdown, crying hysterically and not making much sense. She didn’t even acknowledge the beautiful rainbow that appeared as we drove over the Golden Gate Bridge. I thought the rainbow was a sign from Mama's favorite, Judy Garland. Douglass and I looked at each other and started to doubt our decision to move.  

    After getting her into bed, we stayed with her until she was finally calm and fell asleep. When Douglass and I got to our new place we had take out, then just collapsed and went to bed. For better or worse we were ready to begin our new chapter in suburbia.

                      *   *   *

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Caregiving - The Show Must Go On

There are days I couldn't face visiting Mama and rare though they were, I had to listen to my inner voice and not visit. It would only make it a bad visit for the both of us and it took me awhile to figure this out.

Caregivers have to be strong and in the right frame of mind when visiting their loved ones. This is especially true when visiting a nursing home which can be depressing. At times communication with the staff can be challenging and it can wear the caregiver down but "the show must go on."

In our situation my husband and I made a good team. I would talk to the staff to get the updates on what was going on with Mama while he would keep Mama occupied by playing cards or doing her nails. 

I'd always make sure I was "up" and did some deep breathing before going inside for the "show" to begin. Mama was always "the star" but we were the best "costars" she could have. We brought humor and music to our nightly visits and those were the coping tools that worked for all of us. I would joke and say that we were the twisted trio.

From my experience the best advice I could give to caregivers is to make sure it's all about them. You know your loved one best, so use whatever it takes to help them be in their happy place so that the show can go on.

                        *   *   *

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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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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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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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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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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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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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