Wednesday, July 8, 2020

Day Care Dilemma

        What you may think is a good idea, doesn't always turn out that way. Sometimes caregiving is all about trial and error. I thought it would've been a good idea for Mama to get out of the nursing home a few times a week. But boy, was I wrong...


        An excerpt from our book "Dementia-Mama-Drama" now on Amazon Books.


        I finally knew what it must have felt like for Mama to let go of her fat little crying boy and send him off to kindergarten. I had the same anxious feeling when I sent Mama to senior day care.



  I thought it would have been a good change for Mama to get out of the nursing home a few times a week. She'd have a scenic ride in a van, be in a different environment, make new friends and engage in activities. These were things that she missed and complained about not having at the nursing home. I thought the perfect solution would be senior day care! Of course she took center stage and sang a song on her first day, just like I did on my first day of kindergaraten singing “Somewhere Over The Rainbow.” But that didn't last long, she gradually turned into the child I was in kindergarten. She would often get combative, refusing to go back to "school". The nursing home called me often to coax her into going since the van was waiting for her. This “perfect solution” was not working out so well and it was expensive. 

I tried reasoning with her repeatedly, but as time went by I realized that the bottom line was Mama needed her routine. She didn't like change, even though the nursing home was less than perfect. She complained that “there’s no life here and there’s nothing to do in this damn joint". It was easier for her to be there and complain, it was her comfort zone. 

After a few months, I gave in to Mama just like she always gave into me as a child. I told her that she didn't have to go to day care again if she didn’t want to go back. When I said that, she seemed just as happy as I did when she told me I could miss a day from school. We spoiled each other. We were two of a kind and it came around full circle. 



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Friday, June 12, 2020

So Happy Together

Here's an excerpt from our book "Dementia-Mama-Drama" now available on Amazon Books.



Mama's Nursing Home was quarantined for nine days due to a flu virus outbreak. It was nine loooong daze! The few activities that had been  scheduled stopped altogether. It left Mama with even MORE time on her hands and even LESS time being around others. This did not stop Douglass and me from visiting, even though visitors were "strongly discouraged.” We wore masks, just like the staff and residents. It looked and felt odd and Mama hated every minute of wearing a mask. 


Mama: I had a crazy dream last night.
Douglass: 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.

Under my breath I said to Douglass “we told her we’re married, she must’ve forgot.”

Vin: Oh so now you're saying you're HAPPY? You
never say you’re happy, that's a first.

Mama: Yeah I'll be HAPPY when I can go home! 

Mama always talked about going home. Like many with Alzheimer's, she’d repeatedly say “I wanna go home, I wanna go home.” I'd tell her she sounded like Dorothy in "The Wizard of Oz,” she'd laugh and change the subject. I was never sure what she meant by home. Was it where she was born, her last apartment or New York? I always got a different answer, so I never knew.

Douglass: So you’re not happy?

Mama: Well I’ll be happy when I can at least take this damn mask off and hear everything that you're saying. Everything is muffled and I can’t breathe. Everybody is wearing masks in this place, it’s crazy. I can’t take this anymore. Do me a favor, take this damn mask off me already and hand me my lipstick.

Ahhh yes, "sooo happy together"...


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Thursday, May 14, 2020

Mama, You're Such an Actress!

I didn't realize it growing up but Mama always needed an audience. It became more obvious once she was in a nursing home. She would sing a song or tell a joke at the drop of a hat as long as someone was listening, and she made sure someone always was...


Here's an excerpt from our book "Dementia-Mama-Drama" now on Amazon Books.


Ever since I can remember Mama was an actress. Well let's put it this way - she always gave me drama. From early on in life, her dream was to be an actress and a singer. The ironic thing is that
Mama was always an actress... she 
just didn't know it. And as far as singing, you couldn't shut her up once she started.

Her audience changed over the years. First it was just family and friends, but as time went on anyone that met her became her audience. In her later years her fans were the nursing home staff, the residents and of course the readers of our blog.

When people ask me if Mama was an actress, I gotta say yes. She was the one who taught me "never share a spotlight or a microphone". My mother the actress who was always ready for her close up and her audience.

One night as Douglass and I arrived at the nursing home we heard someone ranting rather loudly from down the hall, it was Mama! She was as I liked to call it “Anna-mated". Sometimes we knew what to expect when visiting and decided to play along joining the “Anna with a Z" show, after all she was the star.

Vin: What are you doing? Are you an actress?

Mama: Of course, I'm a CAREER actress!

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

Mama: Since I’ve been in this damn place. Ya gotta be an actress in here.

Vin: What do you mean by that?

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, so I scream and carry on. I’m a diva, damn it, I give drama! They should give me an award for the best actress.

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



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Monday, April 20, 2020

Grief Groups And Moving On

I never thought I'd be one of those people who went to a grief group. I'm all for therapy, but didn't really get the need to be in a group to discuss a loss. Perhaps I didn't know enough about them, but I felt it was just another way of holding on and not moving on.

I know I needed a form of grief therapy after Mama passed and went to a one on one with open arms and bleeding heart. The next step was group therapy, but I was still hesitant about it... nevertheless a new experience. I needed closure and knew that I wasn't alone. I was totally cynical about "group" therapy.  I pushed to join the first available group meeting because I wanted to feel better and move on! There was a wait list for the group... are you kidding me? That made me even more determined to get into the next group. Being relentless, I got into the group.

During the first meeting I was overly emotional almost from the start which surprised Mr Cynical. The weekly group meetings became a ritual and not alienating (as I had thought) but bringing a group of unlikely people together. Some were unprepared for their loved ones deaths, I was lucky that I knew it was coming. My yoga roots and experience were revisited in a different way by helping bring the group together through meditation and centering. I was surprised how I was able to return to Yoga after being away from it for a while, but then again I was moving on. After all Yoga is mind, body and spirit but I never thought I'd be using it as a tool while grieving.

Well like Mama would say "live and learn". I was an important part of a grief group and my preconceived ideas of  it all had all changed. I'm lucky that I've maintained a few close relationships from the group over the years. It was an important experience I didn't think I needed but I'd recommend it to anyone who has gone through a loss. Keep an open mind and "try it you may like it", it's all part of moving on.

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Saturday, June 22, 2019

Moments of Pride

June is a very special month for me for two reasons. It's Alzheimer's Awareness month and it's Gay Pride. Mama and I have always supported each other... we were proud of each other and were blessed!



She always accepted me for being myself... and she loved the New York Gay Pride Parade. She would sit outside the nursing home and engage with "her audience". She loved the attention (no surprise) and they enjoyed her bawdy sense of humor!

As Alzheimer's caregivers we were there with Mama for many years and made her smile and sing. Did I say sing? Yes, she sang for anyone and everyone. It was great therapy for all of us... it got us through a lot of rough times (and there were plenty).

It's June again and during this month when it's Gay Pride's 50th Anniversary I know that many other Gay caregivers are with their loved one and who knows... they might just be singing "Over the Rainbow".

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Tuesday, July 10, 2018

Sometimes Ya Need A Break

Being caregivers for Mama for so many years has taken a toll, so we needed a little break. A time to pause, reevaluate and gather our thoughts so that we could help other caregivers and continue her story.

Caregiving 101 was like second nature to me. I knew myself and Mama too well, we were both drama queens - highly emotional without any filters. If I wasn't feeling 100 percent, I knew I couldn't give 100 percent. I knew we had to distract Mama to make everyone happy... or at least get through it.


When we were caregivers there weren't many resources available to us. We were pioneers on a new territory, so we went with our feelings and what worked best for us. Men weren't the typical caregivers, let alone a Gay couple. Many times we did what was not suggested by the professionals, but back then we knew what worked for Mama... and us.

We used music, humor, pampering and pet therapy before it became "a thing". We took videos and photos before most did this (she wasn't happy unless the camera was on her). It became a therapy that worked for all of us. Mama always wanted her story told.  She didn't really care which story it was - she had many (remember I did say she was a drama queen). Lo and behold, "Some Of These Daze" was born. It's a play we worked on with Mama and will continue to develop until her story has been told.

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Saturday, August 12, 2017

Humor and Music Got Us Thru

I was asked by Precious Limson to be part of an article she was writing for My Angel's Homecare along with a few other caregivers. My story was featured in the article "The Truth About Alzheimer's Disease Through the Eyes of a Home Caregiver". Reading about the differences in our stories showed that there are many ways of dealing with Alzheimer's. 


This disease affects everyone - the patient, the family and society. It's not a cookie cutter disease and there are hundreds of unique stories out there... we all deal with it in our own way. Although we did not just "live and laugh because we knew it would all be fine", we did use humor and music to help us "deal with our daily dose of dementia". 

Here's the link to the article: http://myangelshomecare.com/the-truth-about-alzheimers/.

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Friday, May 12, 2017

Mothers Day Back Home

Mother's Day is here and my mind is flooded with memories of Mama. I've finally moved back home to NYC and oddly enough it's in the neighborhood where mama was born.

As I walk around and visit old familiar places, I continue to unpack things that remind me of mama, my family and my roots. The last few months I've been consumed with the process of readjusting back to my life in NYC. So writing about mama and sharing our experiences was just too emotional for me. I needed to let go for awhile until I was ready.

Since it's Mother's Day, I need to embrace it. I'm grateful to Mama and all the other "mothers" in my life that helped mold me and get me to where I am today. I love and miss them all.

If I could offer any advice or suggestions to those dealing with Alzheimers, it would be to call your mother. Or better yet visit your mother, give her a hug and say I love you. No matter what she will "get it" on some level and hopefully you'll get a smile from her as I did. And that's what Mothers Day is all about... being grateful and showing love. I wish everyone a very Happy Mothers Day.


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Sunday, July 31, 2016

Caregiving 101 - Say "I Love You"

Every night no matter what happened in our day, when I would leave Mama after visiting, I'd say good night (a few times), give her a big hug and a kiss. She would always smile at me with that big glowing smile and it would make all the drama worthwhile. Even on those few nights when I wasn't able to visit, when we spoke on the phone we'd always end our conversation with "I love you."   


I think of those times even though she is no longer here with me. And at night when I meditate and say my prayers, I still say good night Mama, I love you. I know that she is smiling. Caregiving 101, say I love you... you won't regret it and you'll never forget it.

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Thursday, June 30, 2016

"Here's a Mint" - Memories of Mama

During Mama's last year she often complained about her stomach. If she wasn't starving, she had heartburn or a tummy ache or a funny taste in her mouth. But the one thing Mama never lost was her sense of humor and salty tongue. This was a typical night with Mama, I still remember it like it was yesterday... 

Mama: My stomach is upset.
Vin: Here's a mint, it'll make you feel better. Let it melt in your mouth.
Mama: Well where do think it's gonna melt... in my ass?
Vin: Only if you put it there, Mama. Only if you put it there!
Mama: Oh, you're very funny. You're a regular comedian.
Vin: I learned it from you.
Mama: Yes you did, my son.


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Thursday, May 26, 2016

Mama's Recipe - Memories of Mama

Meatball Mama
Mama always loved food, the recipe to keep Mama happy was FOOD! It was something we'd always talk about... even up until her last few days. When all else failed, I knew the topic of food would never fail. We'd talk about what she ate, what she was going to eat or what she really wanted to eat. As her memory decreased I'd ask her about what she ate to see if she remembered on that particular day. I always knew what she had because I'd check the weekly menu on her bulletin board. If she didn't remember she'd make something up that was safe... usually spaghetti and meatballs (her favorite) or meat and potatoes (always a good answer).


When Mama was having a bad day I'd ask her about some of her favorite recipes. It became a running joke because every dish she ever made always had the same ingredients. She'd say "a little salt, a little pepper, olive oil and a lot of Italian cheese". It didn't matter what the dish, this was the stock answer. Looking back, it did hold true to most of her recipes. At the time it was funny and I'd egg her on to see how far I could take her and what other ingredients should would add. Most of the time she caught on and would laugh and tell me to "shut the hell up and enough with the damn recipes".

Mangia Mama!
And that's when she'd break into song and I knew all was good for the night. Thank God for music and of course "a little salt, a little pepper, olive oil and a lot of Italian cheese".

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Thursday, March 31, 2016

The Roller Coaster Ride - Memories of Mama

As a child I was always terrified of rollercoaster rides. I didn't like them... I even got nose bleeds the few times I tried to buck up and enjoy them. But I didn't like them and I'm certain part of my neurosis was instilled in me from Mama. All I heard from her was "be careful", "watch out", "you're gonna get hurt", "it's dangerous"... the list goes on. She was extremely over protective and neurotic of many things, but then again "the apple doesn't fall far from the tree." 


Many years later when I became a caregiver for Mama and rode the "roller coaster ride of Alzheimers" with her, this redundant term brought a new meaning to me. I realized that eventually we all have to face our fears and ride the roller coaster.


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Sunday, January 31, 2016

Role Reversal... Memories of Mama

Even before Mama was diagnosed with Dementia, the parent/child role reversal was there between us. When I was ten years old Mama came home late from a doctor's appointment and I was worried... 

Vin: How was the doctor's appointment? You're late, what did he say?
Mama: He said I'm too nervous and I need to relax.
Vin: That's what he always says. But are you okay, Mama?
Mama: Yes, I'm fine but I'm going through "the change".
Vin: What change?
Mama: "The change".
Vin: What's the change?
Mama: Ask your father. Do you want some ice cream?


A few years ago in the nursing home, Mama's visits from the doctor were becoming more frequent. I began to worry even more. I asked her what the doctor said... 

Vin: How was your doctor's visit today? What did he say?
Mama: Oh, I'm sick and tired.
Vin: He said you're sick and tired?
Mama: No, he said I'm fine.
Vin: You're fine?
Mama: Yes he said I'll be fine when my son gets me the hell out of this place.
Vin: I'll ask the doctor about that one. Do you want some ice cream?

And so it goes... some things never change. My memories of Mama.


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Friday, December 18, 2015

Christmas Joy & The Purple Tree... Memories Of Mama

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


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


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


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Tuesday, November 24, 2015

Caregiving Thanks - Memories of Mama

November is National Alzheimer's Disease Awareness and Family Caregivers month. It's also the month in which we celebrate Thanksgiving. It's ironic that it's a time to remember when many of our loved ones can't but it's also a time to be thankful... and I am. 


Mama was my caregiver for many years... after all that's what mothers do! The tables turned when she was diagnosed with Dementia and I took over the role of caregiver. I learned from the best because she taught me how to be strong and get through tough times with humor and music. It certainly helped us get through or at least soften our bumpy ride with Alzheimer's.  


Mama wanted her story told, so we've continued to do it through our work as advocates and in our play "Some of These Daze". Even though I became the caregiver, I learned everything I knew about caregiving from Mama, so thank you Mama. 

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Wednesday, September 30, 2015

My Mr Know It All... Memories of Mama

On a typical night, I would play parent and tell Mama what to do or what I thought may be best. I'd tell her to eat a ginger candy for digestion or we'd do deep breathing to help her relax (and me). Most nights we'd do some easy restorative Yoga exercises for mind, body and spirit. Here's a taste of a typical conversation... 


Mama: Okay, okay we'll exercise - whatever you say. You know best, you know everything.

Vin: I don't know everything, but I know some things that may be good for you.

Mama: So my Mr know it all... tell me. What's the weather gonna be like tomorrow?

Vin: How the hell should I know?

Mama: Well, I know! My hands are killin' me and that means it's gonna rain.

Mama was right. The next day, it rained. Once again mothers know best.

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Wednesday, September 16, 2015

Letting Go - Memories of Mama

We're in the process of trying to move back home to NYC and are constantly going thru and getting rid of things. I find things of Mama's and I know I have to get rid of some of them, but it's difficult. I still have paperwork from her first hospital stay. I have the last pack of graham crackers and Hershey bar still in her purse. I have things of Mama's that I'm attached to and things that I know that just gotta go. I've been learning how to let go gradually, but the memories always bring me back to Mama... 

I was Mama's everything. I was very lucky that way, she lived for me! I brought her happiness, but she may have depended on that a little too much. She even told me towards her "final curtain" that if it wasn't for me, she wouldn't care if she lived or died! OMG... How's that for a guilt trip?


The separation from mother and child is challenging. It can be scary, but it's the first step in growing. After your mother gives you life you immediately get separated. (Big screams from both) Pain, freedom, relief... that's the first time you both learn about letting go.

At the first day of school parents drop off their child with the teachers. It's another step of both learning how to let go. Deep breaths, have faith and move forward.

The letting go process continues thru the years... going away to college, getting your first apartment, falling in love, getting married and for some, having children. You get the picture, right? Then at some point, things start to change and the tables are turned. The child becomes the parent and the cycle continues.


You begin to learn how to leave your parent alone in their apartment. You let go slowly always with worry and doubt in your mind, something could always happen. You realize that you now have a child.
  
You may even have to go one step further as you both continue to learn to let go... this time it's in a nursing home. WTF? I would never put my parent in a home! Guilt again but then there's reality... I couldn't do it alone. More deep breaths.

My final lesson of "letting go" was when my mother left this world to go onto her next act. I talked her through it and tried to make it an easy journey and told her (through my tears) that it would be okay. I remembered how she let me know (through her tears) that kindergarten was gonna be okay and I'd be just fine. Full circle, right?

As I continue to go through my things and let some of them go, I'll hold onto others. I cherish the memories I had with Mama and will never let those go. After all, I was her everything.

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Friday, July 31, 2015

Filling In The Blanks - Memories of Mama

If life is made up of memories, what happens when you lose your memory? Is your life over? Or just the life you once had? Is your life just the pieces that you're able to remember? It's all a puzzle, it's a game where no one comes out a winner.

Do you fill in the blanks? Or just let your loved one fill them in and make it up... if they still can. These are questions that caregivers have every day. I know we felt this way and sometimes it was like we were all playing "The Wheel of Fortune". How ironic that this was one of Mama's favorite game shows.

There were many nights that none of us could buy a vowel and those were challenging nights, but thank you anyway Vanna White. We're still "filling in the blanks" as we continue to develop our play "Some Of These Daze" just like we promised Mama that we would.


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Tuesday, June 30, 2015

Am I Forgetting? - Memories of Mama

I think of Mama and miss her everyday... but my memory of her face is starting to fade and I feel sad. I still look at my watch to see if it's time for our nightly visit, and I still check my voice messages to see if Mama or the nurses called... what am I thinking? Sometimes I even forget what our daily rituals with Mama were at the nursing home. They say that "time heals everything" and "grieving is a long process", but that doesn't make me feel any better. 



Naturally I have my daily reminders of Mama, there's the "genetic thing" that I've inherited from her. Her love of music, singing and food, her nervous energy, her anxieties, the list goes on. I find myself seeing more and more similarities and think "Oh my God, I'm turning into my mother". I've heard many others say that, but I never really got it. It can be funny, it can be comforting but when your mother has Dementia, it can be scary. 



What's really scary is that sometimes I forget. I have to look at photos to remind me of my mothers face. As I go through my photo files, I look, I smile and sometimes I cry. And then I vividly remember her face like it was yesterday and I can hear her voice... it makes me stronger. It makes me more determined to keep the promise we made to Mama... to tell her story, our story... as "Some Of These Daze" continues to develop.

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