SAVORING THE MOMENT

SAVORING THE MOMENT

It is now almost a week, where each day I have found my mom to be, what one might say connected.
It is true that she has absolutely no memory anymore, of the past nor the present, yet she has been sounding so refreshed and so alive.

This last week there have been no dark clouds in her life, only beautiful colors of a rainbow. Mom has been extremely happy and her world seems to be filled with clarity. I hear the sounds of birds chirping when she answers the phone with "hi sweetie." She sounds so carefree as sounds of laughter accompany her world.

We have been able to have some conversations without her rushing me off the phone. We have sang some songs and spelled some words and she has been able to follow along with each breath that she takes. It seems to be like a miracle, as if she has escaped from Alzheimer's.  We have been able to be in the moment.

 Of course she is not the same mom that I had before, yet this lovely lady is still my mother.  A mother that can still tell me how much she loves and misses me. A mother that gets excited every time she hears the sound of my voice. A mother that still can tell me to have a wonderful day, and a mother who still shares with me how lucky we are to have our health.

The other day after I spoke to her I thought of my childhood and teenage years, and I thought how my mother always believed in me. I thought how supportive she was to me, and how she encouraged me, when I needed to hear those words from her.  For some crazy reason, I took most of this for granted.

I  realized today how my world has changed so drastically with our relationship. Now with every breath she takes, and with the simplest of things that she may say, I  hold on to each syllable that resonates from her sweet lips.

The words, "I miss you and I love you" have such a deeper meaning to me. These are words that she still can speak. I realize that as time goes by, because of Alzheimer's, she may not always be able to say them . I hold on tightly and I cling to all these loving words, as if I never heard them before.

Today, until no longer, I savor all the love that I receive from her.  I cherish even more, all the love that I can also give back to her. I think of this as savoring the moment, for I know all too well what probably lies ahead.

On October 21st, I will be on the Walk to End Alzheimer's as a tribute to my mom , her younger brother who has passed away, and for all the others who have suffered from this disease.  We are all in this together and we must share in spreading awareness. We must find a cure.



 

COULD THIS BE MAGIC ?

COULD THIS BE MAGIC ?

I belong to a support group with the Alzheimer Association that meets two times a month. I absolutely look forward to going there. It is a safe place to share all of my feelings with others, who I know truly understand. We all have a parent, who suffers with Alzheimer's.

Yesterday while I was waiting for the bus, to go to my support group, I overheard a gentlemen having a conversation with his mother.  It had me reflect on how those days for me and my mom, were now long gone. Like in a trance, I felt myself slipping deep into my thoughts. The days that  mom and I use to share about our lives were no longer.  It left me feeling empty and sad.

I realized that this was a day that I had not yet spoken to her. I usually call her mid morning. For the last few days I found mom so disconnected that it was painful calling her. No sounds of laughter or joy resonated from her. Trying to get her to laugh or sing, was not on the menu. She just wanted to rush me off the phone, and couldn't care less about anything I was saying. Mom was not responsible for her actions, it was her disease reacting.

Even the conversation of asking her if I was her daughter ,and did she give birth to me, she answered with "I guess so."  She was able to thank me for calling, and I also got her to throw me my daily kisses. Without these kisses my day would not be complete. I know that they will disappear, so as of now they mean the world to me. This was not one of her brighter days.

Later that evening I phoned my mom, and like magic, my mom and I were able to have a real conversation. She did not rush me off the phone,and there was sounds of laughter as we spoke about several different things. I knew that she was really listening, as she chirped in that she didn't want to interrupt me while I was speaking. After hanging up, I was floating on cloud nine.

The next morning she was still present, and with much conviction, she shouted how very much she loved me and wanted me to have a great day. She sounded so alive and for several moments I could forget that she had this disease.

Two days of such clarity. So clear with her thinking process. How can this be? Who can understand this disease? When hearing her alive and joyful I do not question, yet when she is lost, I ask myself why? Do the wires that connect in her brain, connect and disconnect? When she has a day of clarity  are  they all connected, and when she doesn't they are disconnected ? What causes several good days of joyfulness, understanding and clarity, and then for several days she seems to slip away.

I know that the researches are trying to find a cure or even a prevention for Alzheimer's. One that I only hope comes in our lifetime. To late for my mom, yet I wonder how much they truly understand. How does Alzheimer's appear and disappear so frequently? This disease is not new for her, she has been suffering with this for at least seven years.

Yes she has her good days and she has her not so good days. I could be flying high from the last few days, and yet I know too well, how easily this magic can slip away. I think of the good moments that we still can share, even if they are less than before. So could this be magic ? I do know the answer, yet my glass remains half filled not half empty. I am still grateful for whatever time we have left, and I must hold on to whenever the magic reappears.

 

IS MY NAME LISA ?

 IS MY NAME LISA ?

As my mom awoke in her home of twenty four years, she exited from her bedroom and saw her caregiver Elaine, sitting in her living room. Mom questioned if she was there to take care of her. Elaine answered that she was, and my mom then stated that she was hungry, and wanted to know if Elaine could make her something to eat. This was a good sign, for some days she is not very hungry.

As they entered her kitchen, she wanted to know where she should sit.  In some ways she has become like a young child, yet not totally. When I got to speak to her she wanted to know when I would be visiting, and added in, that she hopes I know that I could stay as long as I want.

These words that came from her lips just melted my heart. "Mom would you like me to come and live with you"? Her answer was, "I don't think that you would really want to do that". "In that case, I have a surprise for you, Gil's coming to see you today". Mom said "that's great so I'll see both of you" . With an upbeat tone she added in that she can hardly wait to see her kids. I knew that I would not be seeing her for another 2 1/2 months yet I said nothing. I could try to explain ,yet whatever I would say would not be understood and long forgotten.

As we continued our conversation she quickly forgot about my brother coming to visit her.
"Mom would you like to spell some words"? As I started our weekly exercise, starting at A and wanting to finish at Z, I asked her to spell England and then Hawaii. She stopped me on both, and said, "I never heard of those words". Mom never heard of England or Hawaii, what was going on? Can Alzheimer's have my mom's world fade to nothing? Yet fortunately there are other words she recognizes enough to spell .

I realized that at this moment there was some confusion. I decided to stop spelling and tell her again, that Gil was coming to visit her ."Oh my husband is coming", my mom replied. "No mom, Gil is your son. "I know he's my son, I just call him my husband". Okay mom I thought to myself, your close but you have this backwards.

Is there any harm if mom thinks that my brother is her husband? I don't think so.  He visits weekly, and he is the only male figure left in her life. The important part now, is that she still knows who he is.

The next day when I called, I heard Elaine her caregiver say, "Ruth, your daughter Lisa is on the phone". This morning my mom answered with, "no I'm Lisa". As I heard her sweet voice and I giggled, I said "Mom, I'm Lisa so what's your name"? Mom answered with "you tell me first". We both laughed as I said "okay mom it doesn't matter, we can just call each other sweetheart". I thought to myself how quick and sharp her answer was . Was mom trying to cover up her mistake, or perhaps her not knowing?

Once again it does not really matter. Mom somehow was able to understand her own confusion. So I started to serenade her with the song" let me call you sweetheart, I'm in love with you", as my mom joyfully joined in.

There are parts of conversations that we still can share. She has her good days and off days.  I do realize that mom is sliding backwards from Alzheimer's, yet somehow she is still able to hang in there. Her strength, her courage just absolutely amaze me. Several years ago, she became my hero ,and today she still can warm my heart with much joy. She brings a smile to my face, and although parts of her are now lost, I hold on tightly to all that we still can share.

INTERVIEWING MY MOM WITH ALZHEIMER'S

INTERVIEWING MY MOM WITH ALZHEIMER'S

"Mom, what does it feel like not to be able to remember something"? She answered, "it's not always so bad not to remember everything". Wow, I thought as she spoke these words.  Several years ago I had presented a similar question to her, for I often wondered what it must be like. I too sometimes forget some simple things, and for a second I think, do I also have the beginnings of dementia?  I quickly kid around about it, although deep inside the question still remains.


I have no fear asking her any questions, for I know that it will not upset her.  Immediately after I ask her something, it disappears from her memory.  Her answer to this same question, several years ago was quite touching.  Mom had said  "I know that whatever has happened yesterday to me had to be nice, whether I can remember it or not". 


Back to the present, I continue with," mom is all this scary to you"?  Her quick reply is "no it's not scary because if you cannot remember something, you just don't remember it".  With such wisdom mom was able to answer me so easily. She then started to reminisce about her own mother and growing up in Williamsburg and Coney Island.

 "Mom do you remember your mother's name. "Of course, it was Pauline Schnitzer". "Mom, what's your name"? "Ruth Schnitzer", and "what was your father's name"?  She simply says, "I cannot remember".  With some surprise in my voice, I say his name was "Louie."  My own father passed away seventeen years ago, yet I wonder if she knows his name.  She has to, it's my dad and they were married for almost fifty years.  She does not remember. 


"Mom how many brother's or sister's do you have"? "I have both a brother and a sister".  Wrong again.  My mom had only one younger brother who died from Alzheimer's six years ago.  I decided to lighten up and move away from this conversation.

As we continue to speak I did not understand what she was trying to say, so I responded with "mom I do not understand what you just said".  She must have felt a little frustrated for she answered, "if I was speaking French or Spanish then you could not understand me". "You are absolutely correct", and we both started to giggle like two teenage girls.  I was happy, because between some things she said there seemed to be quite a few times that she was lucid.  I was able to fantasize  for several moments that she did not have Alzheimer's.

I have been back home for almost a week now, and each day that I speak to my mom she seems to have some recollection that I was there. She cannot really express this, although she has questioned me everyday,  to when I will be coming to visit .  Now when I exit from her home, I can no longer have my real goodbyes, for in the past she has gotten quite upset.  So when I  leave I simply say, "mom I'll see you later".  

Today my mom shared with a light, upbeat voice that when she woke up she was looking all over her home for me, and could not find me.  For a moment it made my heart sink.  It saddened me that we lived so far apart, yet there was a sound of joy that came from her voice.  I  knew that she was feeling happy. 


Later in the day I phoned my mom again, just to hear her sweet voice.  Her caregiver Trudy said that after I hung up earlier , my mom  had been going around her home once again calling my name.  Her voice shouted, "Lisa, Lisa, are you here".  Hearing this made my heart ache.  Do I jump on a plane and run back to her ? It's been exactly one week since I was there.  Of course I cannot do that.  As I hung up the phone somehow it left me with a piece of my heart broken in two. For the rest of day I kept hearing Janis Joplin singing,"take a little piece of my heart".

I often wonder how this little lady who stands only 4 feet ten inches off the ground, can melt my heart each day in such a way that I cannot contain my love for her.  It seems to overflow with abundance . Although I know that my mom cannot remember anything, and may not always be able to express herself and all her feelings, I am still left with some comfort.  Deep in my heart I do feel that she is not suffering and is relatively happy.  I truly believe that it is the families that are the ones who suffer the most.  Either way Alzheimer's is a cruel disease that eventually takes ones life.

For me, because of my mom I have committed myself to spreading awareness about Alzheimer's and only hope that what I write can help other families find some comfort .  I wish all of you much love and I hope you know that I truly care and do understand.

Fact-Every 68 Seconds Someone is diagnosed with Alzheimer's.

WHAT BECOMES OF THE BROKEN HEARTED ?

WHAT BECOMES OF THE BROKEN HEARTED ?

This picture was taken in October 2011,with my son Logan, me, mom and my brother Gil.  Mom looks happy and what I remember about this day, was that she did not want to leave her home. We had to force it upon her. Although she's smiling in the picture, I would not say that she was really thrilled to be out.  I think she enjoyed being with all of us, yet having lunch by the ocean, and feeling the warm breezes blow by, meant nothing to her.

For me I loved the day, because it is not that often, that the four of us can get together, especially since we live in different states.

In the beginning of this week I phoned my mother because I really wanted to share something exciting with her.  Logan had just gotten an apartment with his girlfriend.  I was feeling so happy, yet my eyes were moist with tears.  My little boy, who has grown up, finished college, is working and living on his own for the last four years, was now taking his next "big" step.  As I see it, he and Julia after dating for two years, were now making a deeper commitment to one another.

As Logan takes each step through his  life, that are both exciting and thrilling to me, they also become  sentimental to me.  I called my mom to share all this excitement with her. With much enthusiasm, I shared everything including my happiness, as well as my heart pangs. Knowing that since she is a mother, she had to have similar feelings, while my brother and I took each new step.

While speaking to mom the phone just went silent, mom said nothing.  Not even did she make a comment, which she has been able to do, no words of wisdom, just dead silence. Mom had just put the phone down. Her caregiver picked up the phone and put my mom back on. I once again in a more simplified matter shared everything with her.  I then asked if she had anything to say. Wasn't she listening?  Didn't she understand?  Couldn't I speak to my mom and have her be excited with me?

Not this time, and probably not to many times in the future.  I questioned why can't my mom be able to be there for me?  I use to love to call her when I needed advice, or had something exciting to tell her. Those days seem to be long gone.

I felt both sad and lost. I could say that I felt like crying. I only wanted my mom back. Is that too much to ask? The answer is yes. Alzheimer's seems to destroy inch by inch someones entire being.

My thoughts went deep and dark, and I was beginning to feel such anger to this disease. I had to pull myself together and get back to the lighter side of life, or I could drive myself crazy. Yes, I had to remember the fun moments my mom and I share, the laughter, the words that are filled with love.

 Maybe this was just a bad day for her. Tomorrow will be better. I must lighten up and stay on the brighter side. I wish that I could remove this horrific disease from my mom's being, yet I know that's impossible.

September is World Alzheimer's Month. We all to need to spread awareness around the world. We need to find a cure for Alzheimer's . Hopefully this will happen in my lifetime, and if not, certainly for future generations.

I  like to send to all the families who have a love one with this disease, and to all their caregivers,  much love.

So although I felt a broken heart for my mom, I know deep in my heart, that broken hearts must heal.