Mother's Day Memories of Mama

This is the first Mother's Day without Mama. We will be remembering our mothers. We'll be together... but alone. 

Douglass & I remember last Mother's Day & we laugh. We are lucky to have so many funny things that happened that didn't necessarily seem funny at the time, but do now.

It was tough to transport Mama from the nursing home & get her in the car so we could have her over for dinner. She was pretty much confined to the wheelchair, was overweight & needed both of us to get her in & out of the car. She would carry on & scream - scared & unable to stand on her own as we tried to maneuver her. We'd realize how silly the situation was & she'd start laughing hysterically & she would sometimes even wet herself. Okay, once I did too!

When we finally got her situated in the wheelchair, things got better, but then she'd constantly complain about her ass. "Oh, my ass is killing me, my ass is killing me". This would go on throughout the night. Once again, we had to crack up (no pun intended) because it was funny. 

If you receive the blog through email you may be unable to view the above video, so here's the YouTube link: http://youtu.be/VphxCw6XILU

From the moment we picked her up she'd say "thank God, you're here... I'm starving." The "I'm starving" would continue until we ate. She'd sing nonstop - you couldn't shut her up! She would have a song for almost anything that we talked about. She would often say "Okay, enough singing, I'm wearing myself out. Besides my ass hurts & I want some coffee & cake. When are you gonna take me back? Oh my God, I'm exhausted."

Ever since I can remember, Mama would drop her food. It would land on her, on the table, on the floor but she would still continue shoveling in the food. Mother's Day was no different!

We'd keep her busy after dinner by playing cards, watching old musicals & making phone calls to family. Sometimes she didn't want to bother making the calls, other times she'd be very eager to hear familiar voices. Eventually we'd give in to Mama & she'd finally devour her "coffee & cake".

This year there won't be any presents for Mama. There won't be any special pasta dinner for Mama. There won't be the nonstop laughing or singing. There won't be the total exhaustion Douglass & I felt when we'd collapse on the couch after bringing Mama back to the nursing home & put her to bed. This year we don't have Mama, but we do have our memories of Mother's Day.

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"I love you too, dear - but not that way"

When Mama lived at The Village Nursing Home in NYC, she had many friends. This was a big difference from The Rafael Home in CA, where she had very little social activity or friends. In NYC, besides her friends, even the visitors of other residents would stop by & say hello to Mama & she loved it! She especially enjoyed sitting outside on the bench (right on 12th Street) & watched the people passing by - it was quite a diverse group. Some of them would stop & chat with her as they walked their dogs, pushed their baby strollers or on their way home from work. Some of them even called her by her name, "Anna with a Z."

One of Mama's best friends at the Village Home was Joyce. Joyce had suffered a stroke & was wheelchair bound. She had great difficulty speaking, but remarkably Mama was able to understand her most of the time. Joyce was a big smoker & loved to go outside just like Mama. They had their spats, but they were inseparable. This is the first conversation I heard between them when I met Joyce while visiting Mama. Remembering this encounter always brings a smile to my face & reminds me that these two old gals always told it like it was.

Mama's Bench in NYC

Joyce: I'm a lesbian... well, I used to be.

Mama: That's nice, as long as you're happy.

Joyce: (pause) My daughter is a prostitute.

Mama: As long as she enjoys what she's doing & is good at it.

Joyce: (looking at me now) I LOVE your mother.(She reaches over to hold Mama's hand).

Mama: I love you too, dear - but not THAT way.(Mama gingerly pulled her hand away & patted Joyce on her knee.)

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Saying It Out Loud

I believe in being honest, sometimes a little too honest, but that's me. I'm not sure how to say this, maybe it's because I don't know if I've fully accepted it. The fact is that Mama, my best friend has died... there I said it! We all assumed Mama would die from Dementia, but a few months ago, a new disease crept into our lives called Myelodysplasia. I knew nothing about it, only that it's a form of leukemia Robin Roberts of ABC News had. She was much younger & fortunate to find a bone marrow donor. Mama was too old for that & chemo was not an option at her age. We only had one other alternative - blood transfusions. We'd call those days "transfusion confusion" that's what we'd tell Mama. She'd get confused going to the hospital so often for her transfusions, which were becoming more frequent. She'd say "Why do I need more damn blood? I have enough of my own. When are we gonna get the hell outta here? I'm hungry & my ass hurts!"

I've been avoiding saying it out loud - Mama is dead. You may have guessed from our last few posts, but I wasn't quite sure how to handle it & I needed to say it. As you know Douglass & I've been her caregivers for over ten years! The entire process has been surreal, but our daily ritual continues. We still check the phone for her calls, still check the time for our visits & still think we should be singing, playing cards, asking Mama questions & cursing with her to make her laugh. But, Mama is dead - her body is no longer with us & we are grieving.

I promised Mama that we'd continue with our blog. She loved performing for all of you & being interviewed. She particularly loved watching her videos & seeing her photos, she was always posing & sang along to her videos! We're sure it gave her another reason to keep going. We still have many of our conversations, videos, songs & photos that we'll continue to share.

Douglass & I will remain advocates for Alzheimer's & Dementia, but also for this disease which is new for us, Myelodysplasia. Please check out the site "Be the Match" for more info. 

Mama may have left her physical body which was failing her, but her energy is still very much alive. Her spirit, her sense of humor, her neurosis all still live thru me! Not a day goes by that I'm not in touch with her on some level. We always had a strong connection & she will continue to be our Dementia-Mama-Drama. She loved the attention, the recognition & showing others that we can still laugh & sing when everything seems unbearable. Mama, you are loved, you are missed & you are finally a star!

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"Good Night My Love"

I was feeling guilty that Douglass & I couldn't get back in time for our nightly visit with Mama. When she had the nurse call me (for the 2nd time) on my cell phone, I reminded her that we wouldn't be back in time to visit. Her tone became lighter & she started to sing me a song from one of her favorite performers, Shirley Temple.

”Goodnight my love, Your Mommy is kneeling beside you, Goodnight my Love, To dreamland the Sandman will guide you. Come now you sleepy head, Close your eyes go to bed. My precious sleepyhead, You mustn't play peek-a-boo..” (this went on for awhile - how does she remember these words?)

I listened as she finished the song & said thank you, Mama. I told her that it was a very nice rendition of the song. I love you & sorry we can’t be there tonight, but we’ll see you tomorrow. Thank you for being my best friend & making me smile (I was having a stressful night & she sensed it). I love you.

She said thank you. I love you too, my son.

I said goodnight Mama.

She said goodnight & repeated "you're going to see me tomorrow, right?"

I said of course Mama! Then I started to sing "Goodnight My Love" as tears welled up.

I knew that Mama was getting weaker & I wasn't sure how many more songs she had left in her. But she still was able to cheer me up & bring a smile to my face. I guess mothers always know what to do. 

If you receive the blog through email you may be unable to view the video, so here's the YouTube link: http://youtu.be/kO_MXoXJUCI


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Memories of Mama Meeting Minnelli - Happy Birthday LIZA!

There are certain things in your life that you never forget. The first time Mama met Liza Minnelli was one of them. Meeting Liza epitomized the NYC experience that we miss. It was a chance meeting on the street, no anticipation, just a typical day in NYC!

My husband & I were walking on Hudson Street in the West Village to visit Mama at the Village Nursing Home. As we were walking past a restaurant this animated woman caught the corner of my eye & I slowed down. Could it be? No way? Is it? OMG, it is!!! I said to my husband, there's Liza Minnelli! Slow down, stop & listen to me. He continued to walk & looked at me like I was nuts! I glared directly into his eyes & told him to go back to our apartment quickly, get the camera, a red marker & the Liza "Gently" CD. I must've looked possessed, because he quickly followed my instructions. I continued to "casually" walk across 12th Street to get Mama sitting on a bench outside the nursing home. I told her she had to get up quickly & walk to the corner so that she could meet Liza Minnelli. Well, I never saw Mama walk so fast with her walker! The three of us strolled by the restaurant & realized that Liza was now standing directly in front of us on the street smoking a cigarette. WTF? Liza is in our way & she's smoking a cigarette! Vin with a Z is taking Anna with a Z to meet Liza with a Z. We are Z'd to the max!

Lightly tapping her on her shoulder, I introduced us to the one & only Liza. She was gracious, she was cordial, she signed the CD, she smiled & posed for a few pictures with us & she hugged us all. Liza kept talking & talking almost as if we had known her for years, just like you may expect Liza to do. She even called me "Daddy", since my name is Vincent, like her father, Vincente Minnelli (who also suffered from Alzheimer's). She made our day, but more importantly she made Mama's day! It was such a memorable meeting, even for Mama with Dementia... she never forgot that day. She kept the photo taken of the four of us by her bedside in the nursing home. I reminded Liza of the incident when running into her a few years later & she was very touched by it.

Enjoy the one & only inimitable "Anna with a Z" aka "Dementia Mama Drama". Below is her video wishing Liza a Happy Birthday.If you receive the blog through email you may be unable to view it, so here's the YouTube link: http://youtu.be/NMMaaAdhhkQ

Meeting Liza was an unforgettable experience. It meant a lot to Mama & I am eternally grateful to Liza for being so giving to Mama during a chance meeting on a NYC street. Mama remembered the incident often & fondly, so Happy Birthday LIZA! May you continue to bring joy & share your love even with "strangers on the street". You are one talented, generous Dame... so enjoy your birthday & know how much you are loved!

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Over the Rainbow

How many times can you say good bye to a loved one? The answer for me was many times & it didn't get any easier. Sure some days I would say "Mama if you wanna die, then just die... it's okay." But then other days I'd repeat the things that "should" be said to help her ease on down the yellow brick road & go over the rainbow.

Mama & I said our goodbyes many times. 
We strolled down memory lane so many times that it needs repaving. We talked about going to the light so often, that we needed a new lightbulb. We went thru the entire list of people she missed, & it's a long one (after all, she did come from a family of thirteen.) I reassured her that she would see them again & would be at peace. I repeatedly said to her that she didn't have to worry about me & it's okay to let go. "Let go, go towards the light." It seems so cliché, but no one ever said it doesn't work!

But was I ready to "let go?" Her final curtain forces me to face my mortality & question who is going to be my advocate in the end? In the past, I knew I'd survive anything because my job was to take care of Mama, so I HAD to survive. What happens to me now? I've become sad, scared & vulnerable.

Since moving to Suburbia, Mama became my only true friend. I feel odd saying that, but it's the truth! We continued saying our goodbyes & helped Mama with her transition "somewhere over the rainbow", where her "happy days are here again." Now I take it day by day & will make the most of our memories. Unlike Mama, I can recall most of them & will continue to share them with you on our blog. The difficult part for me now will be my transition of life without Mama. 

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Dementia-Mama-Drama Shop

You Gonna Type or Play Cards?

Mama: Stop that typing!

Vin: I'm typing what you're saying.

Mama: You might type the wrong thing & get me in trouble... if you know what I mean.

Vin: Don't worry, if I type the wrong thing, I'll get myself in trouble.

Mama: (She laughs) Are you gonna play with your typewriter or you gonna play cards?

Vin: I could do both & it's an iPad not a typewriter.

Mama: Well, pay attention to the damn cards.(She starts singing) 

Vin: Are you gonna sing or play cards?

Mama: I'm gonna do both, then you'll have double entertainment. Come on Vincent "Mr Typewriter" let's play the friggin' card game already.

Vin: Okay Mama, it's your deal...

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So Happy Together

Mama's Nursing Home (like many others) has been quarantined for the last nine days due to a virus outbreak. It has been NINE loooong daze! The limited amount of recreation has stopped altogether leaving Mama with even MORE time on her hands & even LESS socializing. This did not stop Doug & I from visiting, even though visitors were "strongly discouraged". We all wore masks, just like the staff & residents. It seemed odd & Mama hated every minute of wearing it. 

Mama: I had a crazy dream last night.

Vin: What did you dream about?

Mama: I dreamt you got married. 

Vin: Really? How was the wedding?

Mama: I said to you in my dream "What the hell are you getting married for? The three of us are already so happy together."

Vin: Oh, so now you're saying you're HAPPY? That's a first!(Under my mask I say to Doug that we're already married).

Mama: Yeah, I'll be HAPPY when I can take this damn mask off & hear everything you're saying. I can't hear a damn word.

Vin: Ahhh, yes, "so happy together"... for the moment.

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Mama's Big Break - Some of These Daze

It's been a helluva year for us, the nonstop exhausting, emotional roller coaster ride that continues with "Dementia Mama Drama". BTW, I'm terrified of roller coasters - thanks to Mama! 

Mama was diagnosed with Myelodysplasia/Leukemia this year which is now more of a concern than her Dementia/Alzheimer's (and we thought we were challenged before)! In 2012 we've been to the ER 3 times, the hospital 7 times for transfusions & had the "final talk" at least twice. Mama seemed to be on deaths door a few times & we were prepared for the worse, but then she bounced back & we're grateful for that! We tell her that she's like the "Energizer Bunny". When she doesn't get that analogy we say "ya know like Liza Minnelli, she keeps on going & going" - she understands this concept.

Mama has always wanted to be a singer and an actress, as you may know from previous posts & videos. Singing has gotten & continues to get us all through a lot of our "drama". Music is magical & puts her in a happy place. So as a gift this year, Douglass & I have made a dream come true for Mama - she is finally starring in a film! Okay, so we created a short video montage & maybe it'll be Mama's "Big Break"! Hollywood, can you hear her?

Enjoy our video starring the one & only inimitable "Anna with a Z" aka "Dementia Mama Drama". Below is her video "Mama's Big Break - Some of These Daze." 

If you receive the blog through email you may be unable to view it, so here's the YouTube link 
http://youtu.be/_dEAdeUGX-0

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"It Could Be Our Last Holiday"

Throughout the years, I've always heard Mama say that we HAVE to spend the Holidays together! "Ya never know, it could be our last." I've been hearing this ever since I can remember - whether it was directed at me, my brother (from another mother) or the many other family members she helped raise. This is how Mama's mind has always worked: Holidays + Family = Happiness!

Wow, talk about "guilt trip", this can be a heavy topic for me in therapy & would probably take years to resolve, but thought I'd share it with you. It's not only about the Catholic/Jewish Guilt or the Italian/New York Culture, it's because family IS & ALWAYS HAS been very important to Mama. It's an essential part of who she was, is & always will be. Once family & friends started to die or lost contact, her sense of self started to decline, and so did her health. For me, this proves that we all have the need to be around people, something most of us take for granted.

What a switch that now, I AM the one saying "this could be our last Holiday together." It's so bizarre that I'm thinking & saying this, but there's a certain amount of truth to it. After all, her health has been getting worse. The reality is that this COULD be our last year to enjoy the Holidays together & we are determined to make the most of them & have a good time, damn it!

It kills me to have this thought in my mind, but that's the way it is. I've feared this every time my husband & I have gone on a trip or needed a break for a few days. We've been living with this heavy, dark cloud hanging over our heads, but obviously it's getting darker & hanging lower with her recent decline.

I know we "should" treat each day as if it could be the last & we do most of the time, but this is our final "letting go" process. The mix of emotions have fast forwarded my roller coaster ride & keeps me walking a tight rope. I'm not complaining (well maybe a little - that's what I do) but this is how I feel & I want you to know that you're NOT alone.

This Holiday will be bittersweet, but it'll be special. We'll make it as memorable as we can & reminisce about past Holidays when the table was filled with family, friends and non stop food from morning til night. I wish we were back home in NYC where it would be a little more comforting, but we're not. Even our last few years in NYC, the holidays consisted of just the three of us, but we still had a good time & friends were always nearby.

Be grateful for whatever time you have with your loved ones & enjoy it as much as you can, because each day is a gift. A cliché, but for me it's true now more than ever.The joy & laughs we share have increased & that means the world to her. We plan to make this Holiday the best we can, because "Ya never know, it could be our last."

Mama Speaks Italiano? Non Capisco!

Every once in awhile Mama starts singing Italian songs & says a few words or sentences in Italian. I'm surprised at this because I don't remember hearing any Italian spoken in our home while growing up other than curse words or Italian foods. We were American & my parents didn't speak Italian... so much for our roots, I remember her pot roast more than her lasagna.

Vin: I've never heard you speak so much Italian before.
Mama: I speak more Italian HERE than I did at home! They look at me like I'm crazy but I'm not crazy, I'm Italian!

Vin: No one said you're crazy, but it's funny that you've started speaking Italian now, doncha think?

She doesn't answer, but she breaks out singing a few songs in Italian (here's the video)

Vin: Mama, what the hell are you singing? It's in Italian!!! Do you know what the words mean? Non capisco (I don't understand.) What does it mean?

She starts to translate a few words, I don't know if she's right or just bull sh*ting me again. Besides, I understand Spanish better than Italian - remember I'm from the Bronx!

To add to the confusion, many of the staff at the nursing home occasionally speak to Mama in Italian (which is really odd because none of them are remotely Italian.) It can get pretty confusing, but also very comical & Mama plays right along with "her" version of Italian. Si grazie! Bene, bene. 

I think to myself what the hell is going on? Where am I & who is this woman? Then I take a few steps back & realize that Mama isn't the only one who gets confused these days... ah dios mío!

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Whatta Scare - Drooling with Mama

We thought it was just another night visiting Mama... then we saw her as we approached her room. She was hunched over, barely awake & drooling! My mother does NOT drool. She spills her food, spits out her food, misses her mouth & has always been very sloppy in the eating department, but she does not drool. I was scared, I really thought this was it.

My husband & I looked at each other - we were worried. Something was not right & I felt a warm rush go through my body. I started to wave madly at her & gently tapped her foot as she sat in her wheelchair with the ball game on the television. She wasn't near the tv or even watching it... this was not typical behavior for Mama.

I started to panic & was overacting (a trait I learned from Dementia Mama Drama). I was talking loud, trying to get a reaction from her, but she just seemed very lethargic with no response. I wheeled her out of her room & had my husband try to talk to her as I spoke to the nurse on duty to tell her what was happening. I wanted to make sure she didn't have a stroke or was given different meds. I asked about her vitals, "Everything seemed fine", said the nurse. But somehow I wasn't feeling "fine" about the entire situation. I was scared for the first time, I was really scared. I did not want Mama to go out with a whimper, drooling & without a song or a smile!

We wheeled her into the activity room & tried to feed her some snacks & kept trying to keep her stimulated... nothing was really working. None of the usual tricks worked  - the cursing, the bad jokes, the singing, she couldn't even raise her arms to exercise. I went back to the nurses station & insisted she check her vitals again & get her opinion on the situation. Once again all the vitals appeared fine, so we made sure she was put to bed even though it was earlier than usual. I kept in touch with the nurse throughout the night as they ran a few tests.

We were still anxious, nervous & uncomfortable all night. We hoped all would be fine in the morning. Tonight was very unusual... no card playing, no singing, no exercising, no laughing & no storytelling. When I called Mama later in the evening, we both said I love you (as we always do) but she was barely audible & told me she was saying her prayers. I told her to think good thoughts & not to worry. I was at a loss & could hardly sleep that night. I just kept thinking of the image of Mama drooling as I cried myself to sleep. The next morning we found out she had Pneumonia, which explained her scary behavior & was put on heavy duty antibiotics. It all really got to me because the previous week we found out that she has Myelodysplasia, a form of Leukemia. More Mama Drama... but this was a bit too dramatic, even for me to handle. This Halloween, Mama really gave me a scare!

Mama, You're Such an Actress!

The other night as I arrived at the nursing home I heard Mama ranting from down the hall. She was as I like to call it "Anna-mated." I didn't know what to expect when I entered her room, so I decided to play along & join her "show".

Vin: What are you, an actress?

Mama: Yes I'm a career actress. 

Vin: You're a career actress? Since when?

Mama: Well, ya gotta be an actress in this place. 

Vin: What do you mean?

Mama: Ya gotta be an actress here to get what you want - if you wanna get ANYTHING.

Vin: Why do you say that?

Mama: They'd ignore you otherwise!

Okay, enough said. I couldn't have said it better myself. "And the Oscar goes to ..."

Some of These Daze ...

It's Sunday, we are in the hospital & Mama is getting another blood transfusion. In between complaining, napping & talking, she starts singing. Singing is important & has always been a part of her life.

As far back as I can remember, Mama's sisters & brothers would sing & play their guitars at family gatherings. There was always music in the house. When I ask her about those times she says "If my brothers played, I felt good. Oh I miss those times, we always had fun singing together."

She tells me stories of how she "always wanted to be a singer" when she was growing up. I remember the sound of her voice singing in church, it's no surprise to me that she is most alive when she sings. It can change her mood & everyone around her. Singing is a powerful tool!

There have always been Talent Shows in both of Mama's nursing homes. She looks forward to being a part of them & has won many contests! As many of you may know from her videos, she will start singing when she doesn't want to answer a question OR to change the subject OR because she forgot what we were talking about.

A week ago was the annual Talent Show & she was riding high. This week she was in the hospital getting a transfusion, a definite low. The roller coaster ride continues with Mama.

This year I joined Mama & sang a few songs with her... something I would never do as I was growing up! I'd say "Oh nooo, they're playing guitars & singing those old songs again." Times have changed & now singing those old songs has become a part of our daily ritual.

We shot two short videos of the Talent Show. Here's one of the videos we'd like to share with you. She loves the applause & the attention, but then who doesn't? Especially for someone who still wants to be a singer when she grows up.

Any Phone Calls Today?

I noticed Mama was a little sad, so we wheeled her out to the garden which usually helps her mood. We were trying to see where the sadness was coming from...

Vin: What's going on with you today, Mama? You don't seem too happy.

Mama: Not a DAMN thing! Everybody forgot about me.

Vin: Nobody has forgotten you. Did you get any phone calls today?

Mama: Nahh, they're all dead.

Vin: Who is all dead? Whaddya talking about?

Mama: My family - they're ALL dead to me.

Vin: Okay, so you didn't get any phone calls today. Maybe someone will call tomorrow?

Mama: Nahh, no one is gonna call me - not even Aunt Jo... then I remembered she was dead. What the hell am I talking about - trying to get a phone call from a dead woman?

She starts to laugh hysterically & we gotta laugh with her. At least we were able to help change her mood & all was forgotten... for the moment.

Dementia Mama "Never Forgets" 9/11

I never lied to Mama even as a child. Okay, maybe during the teenage years when I stayed out past my curfew or answered "no, that's not alcohol on my breath." I have pretty much always told it like it was to both my parents... even after Mama was diagnosed with Dementia over ten years ago. I might sugar coat the truth or wait for her reaction, but when family members have died, were sick or when there were problems going on in my life, I told Mama the truth. That's the way I do it.

9/11 was no different... I felt Mama had to be aware of the tragedy that occurred on September 11th. It didn't matter on what level she was going to comprehend it, I thought it was important for her to be aware of the situation, after all she would be seeing it on television & in the papers. We lived in NYC & it all happened very close to where I lived & where her Nursing Home was - downtown in the West Village. In the first few days we weren't allowed to cross certain streets without showing ID's... that's how close we were.

On that horrendous morning right after the towers 
were hit, I ran over to get Mama & wheeled her into the middle of the empty street to see & hear what was going on all around us. We were able to see the flames at the top of the buildings as they burned. She didn't seem that interested, she just wanted to eat pancakes, but the fact was that we were there together! We would make our daily visits to the West Side Highway by the Hudson River to watch the recovery workers head further downtown as we joined the crowds cheering them on. 

On the anniversary of this infamous day, I still ask Mama what she remembers about September 11th. Her answers vary, but usually she'll remember the flames, the people in the streets & no cars. It's odd how certain things still remain in her mind, even with Dementia. It brings new meaning to the slogan "Never Forget".