Monday, December 31, 2012

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

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Friday, December 7, 2012

"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."

Sunday, November 11, 2012

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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Tuesday, October 30, 2012

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!

Friday, October 19, 2012

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 ..."

Thursday, October 11, 2012

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.

Sunday, September 23, 2012

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.

Monday, September 10, 2012

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".

Wednesday, August 29, 2012

A Mother's Work is Never Done

It's always an emotional roller coaster with Mama Drama. From the moment I enter her room I could tell by her face, how she is doing & what kind of mood I may have to deal with that evening.

Tonight as I entered, there was barely any energy with the tiniest of smiles & hardly a light of recognition upon seeing me. I knew it would be a challenging visit.

Vin: "Do you want some chocolate?"
Mama: "Whaddya think?" (She takes it & finally a little smile).
Vin: "Do you want to leave your room & play some cards?"
Mama: "Of course." (Okay, we're batting a thousand so far, thank God!)

I just don't have the energy to put on a show & work that hard tonight. There are other things that I'm dealing with in my life besides Mama - as most of you Caregivers do as well! I just wanted to stay home tonight & relax... but there's no one else that visits. I wheel her out of her room & she mumbles something.

Vin:  "What? I can't hear you".
Mama: "I said I LOVE you."
(OMG, what am I thinking about? THIS is what is important. This very special moment.)
Vin: "I love you too Mama."
Mama: "I don't know what I'd do without you?"
Vin: "Well, don't worry, I'll always be here for you." (I hold back the tears.)

Sometimes she can still play the role of Mama & I am her captive audience, I am her son again. It comes from a very real place. Sometimes I act the part of a needy son so that she can take the cue & realizes that "a mother's work is never done."

At times I do feel overwhelmed knowing that I'm the only one who can bring a smile to her face or change her mood. Its a big weight to carry, & some days it's not as easy as others. But like I tell Mama, don't worry I'll always be here for you.

Her energy is increasing & she starts singing an uptempo "Baby Face" replacing the original words. I know she is singing about me, because she looks at me with such devotion & motherly love that it makes everything else seem unimportant. I just wanna hear Mama's version of her song that she's singing to make me smile, because a mother knows. I now have tears in my eyes & a silly grin on my face. I applaud her & thank her. She says your welcome & knows that once again a mother has done her job.

I leave the nursing home in a good mood... we are both in good moods now. She is ready for sleep & I am ready for dinner (& maybe a cocktail.)

Sunday, August 12, 2012

"What Do You Know About Dementia, Mama?"

Mama & I have always had a strong bond & have always been honest with each other, we don't do the B.S. thing. However, since Mama was diagnosed with Dementia... I was at a loss. Should I tell her? What do I say? How do I explain this? Did the doctor tell her? What is the best way to talk about it with someone I've always been honest with?

I bring up the conversation about Alzheimer's & Dementia every once in awhile & ask her about it, to see her reaction & understanding. She usually gets annoyed or chooses to avoid it & changes the subject either by singing, complaining or wanting to go to bed. I asked Mama what she knew about the disease. Her response was "I don't want to talk about it. I like what I am & that's it"! (Above is a short video of our conversation). Notice her transition from answering to going into song & keeping me entertained. It must've been difficult for her to multitask like that. It was very disturbing for me to ask the same question. I was on eggshells, not wanting to upset or hurt her feelings.

I usually don't put her on the spot about this it, but I just wanted her "take" on her awareness of the disease at this particular moment.

"Some of These Days You're Gonna Miss Me Honey..." Some days, that's how we deal with it.

Monday, July 30, 2012

Ya Gotta Have a Big Mouth...

Once again it pays to have a big mouth & ask a lot of questions. It was Mama's fourth ER visit within the last six months! If I didn't push for her to be released from the hospital, she would have been there all weekend. And we all know that not much can happen in the hospital on a weekend.

Me: Is this test necessary? Was that test necessary?  I want to speak to the doctor now. She received her transfusion overnight & is very anxious to leave, I want her released. She is disoriented, remember she does have Dementia.

Nurse: Ohh, that's right she has Dementia. Well, the doctor won't be here for a few more hours.

Me: Oh, really? I just heard the doctor being paged. I need to speak to her & clarify the situation. I know the wait isn't necessary just to speak to her, especially if Mama doesn't need anymore tests.

After using my charm & refusing to take NO for an answer, the doctor magically appears within minutes. She agrees with me that yes in fact Mama is fine now & can leave. BTW, I was correct again... the test was not needed. Nor was the wait to have the test (that couldn't be done over the weekend anyway) which would have caused Mama more anxiety & confusion staying in an unfamiliar place. We packed her up & left... Phewww!!!

My ADVICE for other Caregivers... Speak up, don't take NO for an answer & keep asking questions. Be like your loved one with Dementia & KEEP REPEATING YOURSELF to EVERYONE - the nurses, the doctors, anyone & everyone. You know your loved one more than anyone in the ER or the doctor seeing them for the first time. Have your info available (meds, history, etc) most nurses or doctors do not read the charts or will ask the same questions that are already listed in the charts! Don't be afraid to speak up & question things & always ask about any alternative options. Don't accept the first suggestion & say what you feel your loved one needs (think Shirley MacLaine in "Terms of Endearment" - "Give my daughter the shot NOW... thank you...")

Hang in there & know that you can do it!

Friday, July 20, 2012

Mama Remembers Barbra & "Dolly"

It's been one year since I was lucky enough to win a contest to meet Barbra Streisand on the set of her  movie, "The Guilt Trip" in Las Vegas. I still can't believe I actually met Barbra, a real sweetheart BTW! I only mention it because the other night I said to Mama "It was one year ago when I met Barbra, do you remember that?" "Of course I remember that...YOU met DOLLY". (Well, I guess she told me).

Mama has always loved Barbra & it was such a big deal for her that I won, even though she knew she wasn't going to meet her. We made a short funny video where Mama announced that "her son won a contest to meet Barbra Streisand". She got so excited that she had a coughing fit & started laughing, it was really comical. Watch her video below that was from one year ago...
We continued to talk about the Barbra meeting & I showed Mama some photos that were taken in Vegas again to refresh her memory. All of a sudden, Mama starts singing her own "version" of Hello Dolly! Sometimes Mama is right on the money & it still surprises me & helps lift my mood during our visits. It was a very creative take on the song, but just the fact that she had the connection between the song & the singer, was pretty remarkable. I hope you enjoy the two short videos that were filmed one year apart.

Wednesday, July 11, 2012

I Am Not a Saint

For all of you that follow Dementia-Mama-Drama & may think that I'm some kind of a saint... I gotta be totally honest. I am NOT a saint nor have I played one on TV.

There are so many levels of being a Caregiver, it's hard to explain. The best analogy for me would be having a child when you never planned on having one - but wouldn't change it if you could.

There are days I have to distance myself & think of myself first. Those days are rare, but I do have them. Those are the days when I feel the Italian/Catholic/Jewish "guilt". Sometimes I just want to run away from the entire Caregiving situation & leave it all for someone else. The problem is there isn't anyone else - only a half brother who has left it all for me. And besides, I could never not be there for Mama.

Then there are other days that remind me of when I was growing up & how Mama & I would constantly challenge each other. The roles have changed, but the dynamics & the game is still the same.

Thankfully, there are those days where I can enjoy it all for what it is & be grateful that I still have Mama. We can still laugh, sing, tell stories, make up stories & play cards. That is the part I prefer to share & focus on with all of you, to let you know there can still be good days... if you just "let go" & be in the moment.

One of Mama's favorite saints was St Jude, which is the saint of lost causes. It's ironic that Alzheimer's Disease is considered a lost cause to many... but to me it's just another part of our life. Mama's other favorite saint was St Theresa, "little flower show your power in my most needed hour". So maybe I am a Saint, just don't call me Theresa!

Sunday, July 1, 2012

"That's My Baby"

As I walk into Mama's room, I notice that she is humming & holding one of her stuffed animals. She wins these as prizes at the nursing home during their bingo games. She looks up at me & she caught me slightly off guard.

Vin: Hi Mama, what the hell are you doing?

Mama: I'm singing to my baby.
(I start to freak out a little )

Vin: Whaddya mean your baby?

Mama: That's my baby.

Vin: Mama, that's a stuffed dog.

Mama: I KNOW it's a stuffed dog, but it keeps me company.
(A sigh of relief, she knows it's a stuffed dog & NOT a baby)

Vin: Ok, what song were you singing?

Mama: "Yes, sir that's my baby."

I wheel her out of her room & into the garden as we start singing together.
"Yes sir thats my baby, no sir I don't mean maybe..."

That's HER baby & That's MY Mama!

Wednesday, June 20, 2012

So Mama, How Was Your Day?

I am very proud that I was asked to be a guest blogger by The Alzheimer's Association for "The Longest Day". My blog entry, "So, Mama How Was Your Day" is featured on their site. It is dedicated to all those who have the disease, their caregivers & our memories. Here is the link to The Alzheimer's Association Blog:

What do you remember? If I asked you how your day was today, what would your answer be? "Another day, another dollar." "Nothing special." "TGIF!" Our lives are made up of our memories. When you're losing your memory the struggle to keep your memories can be the longest day. So I asked Mama what her day was like & you can see her answer in this short video.
Mama & I are a lot alike in many ways. We handle difficult situations thru humor. We both love food & music (which is very therapeutic for us). We are both worriers (okay, we're neurotic)! She was always very protective of me as a child & now I am protective of her as an Alzheimer's patient. The days are long for the both of us for different reasons. Hers, because of her dementia, confusion & loneliness. Mine, with the constant challenge of being a caregiver for Mama & trying to balance my own life. There's been a complete role reversal of parent & child. But it's a bond that can't be broken & I wouldn't have it any other way... because who else is going to do it? It's difficult when there's no other family there for support, but as Mama says "the hell with them" (and that's putting it mildly).

I've started recording videos during our daily visits as therapy for her & for myself. Her mood changes & she loves the attention. She feels she is finally getting her fifteen minutes of fame & I think I've created a monster! I am so thankful that she loves to sing & actually entertains me (on a good day)! I ask her questions & am always curious at what her response will be. Sometimes it's the truth, sometimes she makes something up or breaks into song to change the subject. Or she'll tell me to "just shut up & let's play cards!"

I only hope that thru research & awareness of Alzheimer's we can cure this disease. Hopefully one day it will no longer be the longest day for the patient or the caregiver. And we can all keep our memories.

Tuesday, June 12, 2012

"My Nerves Are Shot!"

"My nerves are shot!" You don't know how long I've been hearing this from my mother. I think the first sentence I ever formed was "My nerves are shot."

I will ask Mama "How are you feeling tonite?" She'll say "I'm dying", then start to feign a highly dramatic cough, throw back her head & pretend that she just died.

I'll ask her "Mama, are you okay?" She'll sit up acting like the Queen of Sheeba, "Whaddya mean?" she'll say as if nothing has happened.

So, when people ask me why I say "Mama Drama", this is just one of the many reasons why she continues to rule as the Queen of Drama. Then there's my own Daily Drama with Mama Drama, which is just dealing with the nursing facility, the doctor, the nurses, & of course, the Star... Mama!

So let's see... how did I come up with the name "Dementia-Mama-Drama"? Hmmmm... did I tell you that MY nerves are shot?

Thursday, May 31, 2012

"Let's Play Cards"

"I feel like a dead woman...
Let's play some cards, I'm getting tired of sitting around.

Let's do something it'll keep me busy.

I'm dying in this place.

Okay, deal those cards already. I can't shuffle with these hands."

We start playing cards. All is fine & forgotten - for now.

Sunday, May 20, 2012

"I Feel Blue Today"

As we entered Mama's room the other night she was singing to herself in a low voice, which was unusual for her. So I asked her...

Vin: Okay, what's the matter?

Anna: I feel blue today...

Vin: Well you don't sound blue. You're singing!

Anna:sing so I don't feel blue.

Vin: Well that's good, then keep on singing. And besides you don't look blue, you're wearing purple.

She laughs, takes a look out the window & sings "Blue Skies" full out. Her mood has changed... thanks again to the power of music & taking the time to care.

Sunday, May 13, 2012

Mother's Day with "Anna with a Z"

I remember when I was growing up, Mama was a mother to everyone! All of my friends loved my mother, they always wanted to visit & hang out at our apartment. 

Mama was always a second mother to many... starting with her nieces, my half brother, my cousins & even some of my friends. Everyone loved Anna! She often took the place of their absent parents. 

As time moved on & things have changed, the tables have now turned. She feels lonely, isolated & forgotten. She often says "where are they all now?" I try to smooth it over & explain that people have their own lives & most aren't nearby anymore. Sometimes she says "the hell with them", other times she recalls stories of her glory days with "her children". She would take some of them to Radio City Music Hall to see the Easter Show or the Christmas Show & even Frank Sinatra at The Paramount.

I have stopped making excuses for many & just try to be in the present moment with Mama. Aware that this could be our last "memory" of a Mother's Day together.

Wednesday, May 9, 2012

All We Have is Love & Memories

It happens to me more & more on a daily basis. I remember the past & think of it like it was yesterday. I can't believe how much time has passed since certain events have happened in my life. It seems like just a few years ago that I was a frantic fat five year old child singing along to Judy Garland records, a few months ago that I was graduating high school & a few weeks ago that I was moving into my first apartment. 

Then I think of today & I put myself into my mother's place & I try to think, what does she really remember? What is her time frame? I ask her questions just to check in with her & to see which of her stories are consistent. Which stories are true, which ones is she making up? Does she even know the difference? But all in all, does it really matter? 

All we really have in life is love & memories... sometimes it's just love, sometimes it's just memories. I am lucky enough to have both right now. But I know my mother is fortunate enough to have love & lucky enough to be able to make up the rest from her bits & pieces of her memories.

Saturday, May 5, 2012

"I Have Some Money"

During my visit with Mama the other night, we were cleaning out her bag. We do this often as she likes to wrap & save food that she doesn't finish at meal time. She pulled out her leopard change purse, took out a dollar bill, looked at it, then put it back in the purse. We started to talk about money.

Vin: Why haven't you ever saved any money?

Anna: Oh, your damn father was a gambler.

Vin: Well, why didn't you try to save some money separately?

Anna: Oh,I have some money!

Vin: You do?

Anna: Sure, I have a couple of hundred in the bank. When I drop dead, you'll have a couple of hundred.

I started laughing which made her start laughing. I put another two dollars in her purse. I told her that was for making me laugh. She looked at me & smiled... it was a good night.

Tuesday, May 1, 2012

Chanting "OM" with Mama - Mind, Body AND Spirit

Mama & I have our daily rituals during our visits. We sing, we play cards, we do breathing exercises & then we do some physical exercises. Some of the exercises we do, were ones that I learned while studying Yoga. Occasionally we even do breathing exercises that may lead to singing &/or chanting "OM". During this particular visit, Anna had some fun while chanting her OM's. She even commented that if anybody were to hear her, they'd think she was crazy - she also told me to go to hell... so much for positive energy. It's all about mind, body AND spirit!

Saturday, April 28, 2012

"I Have No Options"

Before Dementia, before cell phones, Mama understood the concept of answering machines... almost. She would call & go on as though she was actually talking to me... sighing, cursing, asking questions, pausing. Fast forward to now when she has the nurses station call me on my cell phone. They call my cell & my prerecorded message comes on if I am not able to answer.

The consistent message that she leaves is: "Hello, hello, HELLLLOOOOOOO. Nurse, nurse, something is wrong with this phone. No one is answering, can you dial him again?" A few minutes later another message: "Hello, hello, HELLLLOOOOOOO. Oh damn it, no one is there, this phone is not working. They have the wrong number! No one knows what they are doing here. Hello, nurse - I don't know what's wrong. No one is answering, can you hang this phone up for me please? Helllllooooo Nurse, can you hang this phone up? Thank you. Ohhh, mother of God!"

When I visit her later that day, I go over the basic mechanics of the cell phone (again) & compare it to an answering machine. I let her hear my prerecorded voice & tell her when you hear this, you leave your message & not scream... "Hello, hello, HELLLLOOO." My prerecorded message ends with "please select your options." She says "I HAVE NO OPTIONS."

We look at each other & start laughing.

Thursday, April 26, 2012

"They Make Me Forget"

Anna: I LOVE the puppies! They make me forget.

Vin: Maybe you shouldn't love the puppies so much, IF they make you forget.

Anna: (She gives me a playful look & pauses) What did you say? (then she laughs)

Does she "get it" or not? Do I "get it" or not? Who knows? It's just another day with Mama ~ ya never know...

Wednesday, April 25, 2012

What's Dementia, Mama?

I asked Mama what she knew about Alzheimer's Or Dementia; she didn't really want to talk about it. Her response was "I like what I am & that's it". Then she broke out into singing an original version of "Some of These Days" with her own special lyrics! 
I usually don't put her on the spot about this subject, but I just wanted her take on it at this particular moment.
Some days that's how we deal with it... 

Tuesday, April 24, 2012

Your Mother is Fine, But She Has Dementia

I don't know when I became fully aware of it, but at some point, I became my mothers caregiver. It is not a role I would have chosen, by any means. I do not have pets, children or anything else that could make my life more chaotic... that has always been my choice. But something changed when I felt I no longer had that choice or freedom - it's called Dementia. When I first found out my mother had dementia with the onset of Alzheimer's, I just dealt with it. It was what it was & back then not too much was known about this awful disease.
Ten years ago, I was in the social workers office checking in my mothers clothes & tagging them to admit her into her first nursing home. I was very emotional & fighting back the tears, my mother was NEVER going to go to a nursing home. I was separating her blouses from her sweaters & slacks, when the social worker told me that my mother made a remarkable recovery from her pulmonary embolectomy (a major surgery) & may appear to be fine, but she is in the beginning stages of Dementia!!! 
I didn't even fully understand what that meant. I am not a doctor, but I am learning about this disease by living through it & dealing with it the only way I know how... by being there, being supportive, asking a lot of questions, interjecting humor at the most inopportune moments & being the squeaky wheel at the facility. And of course by singing & playing cards with my mother, that's what we do.

My mother & I have always had a close relationship, other than during my rebellious teenage years. We usually "got" each other. We knew where we were both coming from, she was always very supportive & allowed me to be different, but was a bit overprotective & neurotic. We have always spoken our minds & have a very honest & VERY direct way of speaking to each other. The tables have now turned & I have become "the parent" & Mama is now "my child"

I decided to share my experiences as a caregiver with you in this blog & hopefully help some of you as I use it as part of MY therapy. I know many of you can relate to similar experiences & I want you to know that you are NOT alone!

She loves to sing, so there will be a lot of videos from "Anna with a Z" & she is still one helluva singer! Music is powerful & thankfully it can & does change her mood... & mine.  

Thanks for joining me on my roller coaster & please spread the word & follow us on our ride...

Sunday, April 22, 2012

Alzheimer's Can't Wait

Alzheimer's can't wait. We need a federal commitment in order to change the course of Alzheimer's disease. Tell President Obama millions of families are counting on him to fulfill the potential of the National Alzheimer's Project Act.

Please sign the petition at
& have our voices heard...