IMAGINE- A WORLD WITHOUT ALZHEIMER'S

IMAGINE- A WORLD WITHOUT ALZHEIMER'S

Last Sunday I walked with my husband, my son and his girlfriend, as we joined 5000 other people in New York City, in the Walk to End Alzheimer's. As I approached the park my eyes seemed to swell, thinking about my mother.

 I called her to say hello, and share with her, that I was walking in a park on a beautiful sunny day. I feared saying to her, that I was walking for Alzheimer's.  I do not know if my mom  knows what Alzheimer's is, or even that she has this disease, yet I could not bring myself to say the word. Regardless, mom was able to tell me in a cheerful voice to enjoy my walk, the park, as well as the rest of my day. As I hung up, I smiled thinking that she had just sounded like a woman, who did not have this disease.

 She has been sounding remarkably good on our daily phone calls . The things that she has recently said, sounds as if she is at the moment reconnected . Instead of her saying that she cannot remember anything ,she has been expressing it so differently to me. She asked if I could remember what I just shared with her. She seemed to be defending herself, by stating that it was a very long time ago for her to be able to remember. When we spoke of other things she announced, that she just got a "mental block, or that it's right there on the tip of her tongue."

She seems to be reawakening. I heard her tell her caregiver Elaine, that she needed to loose some weight, since it was not good to be overweight. Elaine and I were intrigued by what she said just said. We were happy that she was aware and able to observe all of this. Just saying something as simple as this, brought smiles to our faces, as we giggled about what Ruthie had just expressed.

When I mentioned to her that my doctor's office measured me, and that my height now was, 5'3 1/2'' and I had shrunken from 5'4", she laughed and quickly said," don't be upset, you lost only a 1/2"." Her quick response left me with another smile and feeling lighthearted.

 I found it interesting how she has reversed what I had said . Was she trying to transfer not remembering to me, as if it was a normal act in her life ? Can she be aware enough at this moment, to question me in reverse, as if to transfer her own feelings? All of this has left me wondering what could possibly be going on in her mind .

I guess I will never have an answer to this, and it will not make any difference.  For me I want to take a few moments and try to "Imagine A World Without Alzheimer's." A world free of this dreadful disease. A world where our loved one's lives, cannot be stolen from them, as if they never existed.

 Please join me in spreading awareness about Alzheimer's, so one day the world may be free of this horrific disease.

MOM REALLY MELTS MY HEART

MOM  REALLY MELTS MY HEART

 Mom and I now continuously say to each other how much we love one another. It was not always like this.  It makes me wonder, why when I was growing up, did I not feel all this love and warmth from her? Nor did I return it. I was certainly daddy's little girl.

 I am not saying that I did not know she loved me, what I am saying is the warmth and nurturing that I felt as a child was coming from my dad, not my mom. Was it me? Was it her? Or was it both of us? My dad showed me lots of love, and showered me with much affection. Could my mom had been in a crazy way, jealous of our loving relationship? This I will never know or understand, and it no longer has any significance to me.

Today, and since my mom has Alzheimer's, the love we share is for me unspeakable. My mom had a really good week which left us with some amazing conversations. Every phone call ,left her asking me when I would be coming to see her. Mom would reply that we have a really good relationship and the truth was and I quote her," because she loved me more than anything in the world." She so sweetly, added in that I was the best in the world, and the greatest there is.

All these words of affection and love  melted my heart . It was all so magical, words that I can never forget. Alzheimer's has left her with no memory, yet when she still is present, she constantly shares all her love with me. Could she be making up for all the years that this was not shared ?  Maybe, and certainly, yes for me.

Are we like a mirror reflecting back and forth to each other our images of love? The simple things in life that I might have once taken for granted, now shine through . The words we speak each day, unless mom is having a bad day are filled with the brightest of sunshine. Her laugh, her smiles, her kisses now are everything to me.

 At the end of each phone call, I always ask her to throw me kisses.  I have shared with her that without her kisses my day would not be complete. As our last phone call came to an end, she said " if you want your kisses, then why don't you come over, and I'll give you real kisses." I smiled to myself knowing that I would be seeing her in six weeks, and for today she was having an exceptionally good day.

I hold so dear to my heart all our bright days, never knowing when they may fade away. Instead of thinking about the long goodbye, I focus on the long hello, and embrace all that we still can share.



 

I WONDER WHAT IS MOM THINKING ?

 

I WONDER WHAT IS MOM THINKING ?

Mom recently had two wonderful weeks, that seemed to abruptly come to an end. This week started off with her sounding like she had just swallowed speed. She was on an adrenaline rush. Mom was saying some things that made sense and other things that I found quite difficult to understand. I wondered what was going on ?

Did mom have another UT infection, that was causing her to be in what seemed like a semi delirious state ? Probably not since she had started an antibiotic the week before. My brother suspected that she might have had an infection. I questioned what would happen if she really needed an antibiotic. Gil my brother, being a physician, thought that this would not be a problem.

I found her one day speaking about my father, who passed away seventeen years ago, saying that she was waiting for him to come home from work. The next day she kept rambling on about some lady and how she remembered what had happened with her. She was making absolutely no sense at all. The next moment she was telling me that I was the best daughter in the world. Of course, I loved hearing those words.

I decided to ask her some questions to see if she, or better me, might understand. As I spoke these words her answers were quick and responsive. "Mom are you happy?" "Yes," she said, "I'd rather be happy and have her hold my hand."  Okay I thought ,who is her ?  Then without skipping a beat she continued to say that she was happy to be alive. Her brain seemed to be firing and sparking all over the place.

The following day she only wanted to sleep. I'm sure this was out of total exhaustion. I only could wonder what I might find later, on the other end of the phone.

 Mom's journey, since she has Alzheimer's, has climbed mountains and has traveled through valleys. The rivers have flowed and at other times they have dried up. I never know what to expect. What might I experience next?

Towards the end of the week, her caregiver discovered that mom was impacted. After she was relieved from this, she bounced back to being aware and sounding better . Almost as if, what I had experienced all week, never happened. If my mom cannot tell me what is going on, how can we as caregivers, know how to help them?

In a strange way this fascinates me. How does the brain connect and disconnect so quickly ?  I only wish that my mom could explain to me what is going on. What is she feeling? What is she thinking? Since she cannot, all that I am left with is to wonder how Alzheimer's disease can remove her vibrant ways, and watch as she fades away.

Somehow, as upsetting as this can be, I have been getting use to her when she is acting this way. Yes it hurts, and I wish I could cuddle her,and take care of her, as she once did for me. Instead I take a deep breath and know in my heart that tomorrow could be a better day.

SOUNDS OF JOY

SOUNDS OF JOY

This is the second week in a row where mom has sounded really good.  She has been alert, upbeat and filled with clarity. We have been able to engage in our daily conversations. I have purchased my plane tickets to visit her, and will be arriving in eight weeks. I am hoping that when I get to her home, she will still be having her better days. Although eight weeks is still a long time away.

The last time that I visited her with my husband, her days were not great and being with her was painful to watch. It brought up sadness and frustration . As my trip is getting closer, I start to feel some different emotions . As of now I am surrounded with excitement, yet feel a small knot in my stomach.

Just today, mom so cutely said that she only hopes that she can remember when I will be arriving. She asked me to please remind her and hopes that she will not forget. I laugh with her as she speaks these words and reassure her that I will not let her forget.

Mom offered to help me make her "famous" meatloaf when I visit, since she cannot remember the recipe herself. Simple things like this excite me . I delight in each small thing she says, as if I was watching my son speak his first words, or take his first steps. Her good days come and go, so I always cherish those special moments.

 It doesn't matter what we may speak about, it is just that we are still able to speak. She touches my heart in so many different ways. I can no longer talk to my dad, and in reality the day will come when I can no longer speak to her.

Mom has no memory anymore of anything, including my dad, her marriage, her youth. Maybe she still has glimpses that come to her, yet as they pass by so quickly she has no way to share them. Yet for all this she does seem happy . In her world, she does not understand the difference.

My mom and dad met when they were very young. Mom was eighteen years old when they married. Dad was only twenty one when he shipped out to serve his country. At that time mom was also pregnant with my brother.

On October 25th this year, they would have celebrated their 70th anniversary together. My dad passed away seventeen years ago. He suffered for nine long months, while my mom traveled each and everyday to see him.

I wonder how difficult it would have been for him, if he had lived, and he would now be experiencing my mom, as she drifts away. My brother and I are now the only immediate family she has left.

Alzheimer's disease I believe effects the caregivers even more. We are the ones that watch how this disease destroys their lives, as they loose their memory and slowly disappear. We feel the pain that they may not even realize exists. 

The sounds of joy that my mom can still express are for me, what makes me smile. She fills my heart with much joy.  Everyday that she still knows who I am, is truly a gift to me. Mom has been so courageous and today as always she will remain my hero.