I'm Famous... I Love It !!!

During one of our nightly visits, Douglass & I talked to Mama about our blog. We explained (again) to Mama that people from all over the world enjoy reading about her & love her videos. We read her a few comments & showed her some of her videos that we posted on YouTube...

Vin: Mama, what do you think about that? Everybody loves you!

Mama: I love it! I guess I'm finally famous.

Douglass: Did you always want to be famous?

Mama: I don't know, but when I was younger I wanted to be a movie star.

Douglass: So what happened?

Mama: Ahhh, it was too late!(she sighs) I would imitate all the stars, I was a "Creepy Jeep". 

Vin: I never heard that word before. What's a "Creepy Jeep"?

Mama: Someone who doesn't know what she wants. So now you know what's a "Creepy Jeep".

Douglass: What do you think about the fact that some famous people are reading about you now?

Mama: Why would they be interested in me?

Vin: Don't you think that you're interesting?

Mama: Well I guess so. I have a beautiful career...

Vin: What? Whaddya mean a beautiful career? 

Mama: You said I was famous. So, everybody loves me - that's my career. I have a beautiful career!

Douglass: Yes you do & you know that everybody loves you.

Mama: So, famous people may read about me & I read about them & thats all there is to it. Most of them have mansions & I can't even have my spaghetti & meatballs. So much for being famous.

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Having Your Daily Dose of MAMA DRAMA? If you're a Caregiver or an  Advocate of someone with Alzheimer's or Dementia, show your support with Dementia-Mama-Drama Products. A portion of sales will go to "Leeza'a Place" a place for Caregivers & Support. Please click on our shop: Dementia-Mama-Drama Shop

Does Anyone Hear Me?

Mama is sitting by the nurses station near her room. Douglass & I can see her as we walk down the hallway for our nightly visit. She is sitting in her wheelchair & is around a few other residents. There doesn't seem to be much conversation, only the energy that surrounds the nurses station. We say our hellos & she smiles & looks happy for a moment...

Mama: Get me the hell out of here! They're all dead in this place.

Douglass: You wanna go out to the garden to get some air & play some cards?

Mama: Yeah, anyplace where there's some kind of life! (I roll my eyes)

We wheel her down the hall towards the elevator to go to the garden downstairs. We pass by a few ladies that are in the hallway & Mama waves to them.

Mama: Hello. Hello ladies. I said HELLO! (No response from either of the ladies, just blank stares). What the hell is wrong with them? They can't even say hello? They're a bunch of morons in this damn place - especially that one with the fat ass.

Vin: Ssshh, they can hear you! They're standing right there.

Mama: To hell with them, I want them to hear me.

We get in the elevator & Douglass & I wonder if it's going to be a good night or a bad night. We wheel her out into the garden & it's beautiful & sunny outside.

Mama: Look at the sky, it's gonna rain.

Vin: It's sunny & clear. 

Mama: It's gonna rain. My hands & legs are killing me, that means it's gonna rain.

Vin: Your hands & legs are always killing you & its not gonna rain.

Mama:(She burps loudly as she eats her Oreo). Ohhh, I'm sooo sorry, I'm such a pig. Oh my God, it's gonna rain tomorrow. Do you hear me?

Douglass: Yes Anna we hear you, everyone can hear you.(Douglass & I start to laugh).

Mama: Oh, good I got some laughs (she starts to laugh) hahahaa. I'm sooo funny, aren't I? 

Then without a pause, she knows she has her audience & starts singing... "I'm singing in the rain, just singing in the rain. My hands & legs are killing me, but I'm singing in the rain"... She continues to laugh hysterically.

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Having Your Daily Dose of MAMA DRAMA? If you're a Caregiver or an  Advocate of someone with Alzheimer's or Dementia, show your support with Dementia-Mama-Drama Products. A portion of sales will go to "Leeza'a Place" a place for Caregivers & Support. Please click on our shop: Dementia-Mama-Drama Shop

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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Having Your Daily Dose of MAMA DRAMA? If you're a Caregiver or an  Advocate of someone with Alzheimer's or Dementia, show your support with Dementia-Mama-Drama Products. A portion of sales will go to "Leeza'a Place" a place for Caregivers & Support. Please click on our shop: Dementia-Mama-Drama Shop

"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."