THE WORLD SHE NOW LIVES IN

THE WORLD SHE NOW LIVES IN

In a few days I will be arriving in Florida to see my mother. I did this for the last three years, allowing me to spend an entire month with her. I usually feel a combination of excitement and nervousness yet this year, I am scared.

My brother recently sent me a video which upset me. Mom seemed far more advanced, almost as if she did not exist. She said a few words, was unresponsive not having much expression. I am hoping that with my daily visits she will somehow reappear.

This past Friday night as I was thinking I knew all too well that she had no idea of the day, time or year. She is unaware that I will soon be coming to see her. She most likely has no idea that I even exist. The world that is so present in my universe does not exist in hers.

It feels as if Alzheimer's has taken over. It has conquered and left mom with little awareness of any life on this planet. She is locked away in a land of make believe, a land of no existence. I am grateful that she appears not to be suffering.

This journey that we are now on is getting much more difficult. I am filled with guilt and sadness,  at moments wanting her to go to sleep. How could I wish for this with my own mother? Am I cruel, or am I humane?

While she is still alive she rarely ever smiles. When someone with Alzheimer's does not smile, and shows little emotion, it appears that they are nearing the end. In mom's case, I have to believe, given her constitution, the end is not so near.

I miss her deeply and being able to touch her face and hold her hand should be enough, yet it still sharply pains me. How I yearn to share my life with her and wish that she could really understand when I whisper the words " I love you".

Alzheimer's is a cruel disease that wipes away ones dignity and life as it enters and attacks their brain cells. Some people succumb rather quickly while my mother has Alzheimer's for fourteen years and still counting.

At this moment many scientists are searching for a prevention or cure and are hoping that within 15- 20 years it will come. That is a long time away but for future generations it would be a blessing.



 MY MOM MY HERO - A mother & daughters new found love. http://www.amazon.com/Mom-Hero-Alzheimers--daughters-bittersweet/dp/0615773982/ref=sr_1_1?ie=UTF8&qid=1454248406&sr=8-1&keywords=lisa+hirsch

SHOULD I FEEL HONORED TO BE CALLED MOM'S MOM?

SHOULD I FEEL HONORED TO BE CALLED MOM'S MOM?


Several months ago on my birthday I awoke with a strong yearning to speak to my mother. I was feeling as if I just wanted her to hold me as she once did when I was a small child. There was a feeling of emptiness knowing that this was no longer possible, yet I still just wanted to hear her voice.

I phoned the nursing home and spoke to the head of nursing and asked her if she would tell mom that it was my birthday. She brought mom to the phone and after she sang two words of Happy Birthday to me she just dropped the phone. Mom then told the nurse that I was her "mother" not her daughter.

My mother no longer wants to speak on the telephone and has trouble putting it next to her ear. She finds it too confusing and can no longer understand where my voice is coming from. I realize, again, how her world keeps shrinking more and more each day.

I have heard mom mix up words before so calling me her mother did not upset me. Maybe just the opposite for I know how much she loved and adored her own mother.

Life can be strange for there was a time when mom would call me once a week. She would share that she was calling because she did not hear from me and was worried. I remember feeling annoyed, even rolling my eyes, and telling her that I had not called because I was very busy; back then all I really wanted to do was just rush her off the phone.

What wouldn't I give to just to hear her phone me. Who would ever have thought that this disease, known as Alzheimer's, could invade her world and sweep it away as if it never existed?

In many ways I have become the parent and my mom has become the child. A child that needs to be taken care of and, sadly enough, a child that will never grow up.

Mom keeps reverting backwards into a world that one day will no longer exist. I now know that with this disease our roles reverse and somehow the past becomes the present.

So my sweet mom you can call me your mother whenever you wish, and I will always feel honored.



MY MOM MY HERO - A mother & daughters new found love. http://www.amazon.com/Mom-Hero-Alzheimers--daughters-bittersweet/dp/0615773982/ref=sr_1_1?ie=UTF8&qid=1454248406&sr=8-1&keywords=lisa+hirsch


 

LIFE OF A LONG DISTANCE CAREGIVER

LIFE OF A LONG DISTANCE CAREGIVER


A few years ago I recall defending myself from some other caregivers. They thought I should not consider myself mom's caregiver, reasoning that since I lived far away I did not care for her in the same way that they did. Their words stung me deeply and had me momentarily question myself.

I could feel compassion for their situation, yet I too, had the agony of hearing and seeing my mother disappear in front of my very eyes. One moment she knew my name and the next she had no idea who I was. My heart felt equally broken as theirs and I questioned why would they judge me?

Was I any less of a daughter to my mother because I did not live near her? Unfortunately, I could not just pick up and move to another state, and my mother refused to leave her home. I am my mother's daughter that will never change, no matter how many miles may separate us.

Before moving mom into the nursing home for years I spoke to her caregivers every single day to hear how she was doing and to help plan her day. I questioned what she ate, if she took her vitamins and if she gave them a hard time when she was being bathed. I also delighted in hearing how mom loved to sing along to the CD'S that I made for.

There were moments when mom sounded great and there were other times when I was so frightened yet unable to just jump in my car and rush over to her. I remember when they called an ambulance to take mom to the emergency room after her aides discovered she had bruises (from a fall) that she could not tell us about. Then there were the times she was hallucinating which was due to a urinary tract infection (UTI).

Once, when she was in the rehab hospital I spoke to the physical therapist who told me that my mother was not following instructions. I responded "how could mom possibly remember what you just said since she has Alzheimer's." The therapist answered, “oh I didn't know she had dementia.”

Then there was the time I received a call from a first response team who was not able to reach my brother. Mom's neighbors reported her "just sitting" outside her apartment on the curb. Her caregiver left for the day and because of confusion mom went to sit outside to wait for her. You would think that one of her neighbors would have just brought her back into her home. After all these years of knowing her how could they now just shun her like this?

The time was approaching to place mom into a nursing home my brother and I realizing she needed twenty-four hour care. Talk about feeling guilty and confused. How could we do this to mom? Her wishes were to stay in her home till she died.

Mom now has been in a nursing home for 3 ½ years and my brother and I know that it was the correct thing to do. I still call every day and speak to the nurses to see how she is doing. I may only get to visit her every few months yet the staff knows that I take a very active interest in her well-being. Mom no longer knows where she is living yet my brother and I feel secure with the care that she is receiving.

So with deep thought my question is am I any less of a daughter than the others since I am a long distance caregiver? The answer is clear to me. I am my mother’s daughter and no matter how many miles apart we are the love and concern I have for her is as deep as the bottom of the ocean. She is my mother and I will always be her daughter, which also includes being her caregiver.

 

 
MY MOM MY HERO - A mother & daughters new found love. http://www.amazon.com/Mom-Hero-Alzheimers--daughters-bittersweet/dp/0615773982/ref=sr_1_1?ie=UTF8&qid=1454248406&sr=8-1&keywords=lisa+hirsch

WHAT COMES FIRST DAUGHTER OR CAREGIVER?

WHAT COMES FIRST DAUGHTER OR CAREGIVER?

When I am interviewed for a podcast or radio show I seem to cringe when I am introduced as my mother's caregiver; for in my very soul, deep in my heart, I am first my mother's daughter and then her caregiver.

After looking up both words in the dictionary I found several different meanings. A daughter is a female child or person in relation to parents; a caregiver is a person who cares for someone who is sick or disabled.

A name I wish to be called is mom's "caredaughter". Although "caredaughter" does not exist in the dictionary I truly prefer the way it sounds.

In the last several years I know our roles have reversed, although what remains and cannot be taken from me is that I am her daughter .

Recently, I shared with a friend that on my last visit with mom it was so meaningful to just hold her hand. Since my return my friend asked, did I miss holding my mother's hand? My answer was simple. "No I don't miss holding her hand, what I do miss is not being able to share my life with her. Mom is still alive yet the world she now lives in is a world I may not exist in."

I then reversed the question and asked "can you ever imagine one day not knowing that you have two children named John and Alice, or that you are married for forty years, or that you have two sisters?" She looked at me and could not answer.

I have come to realize that unless you have a loved one with Alzheimer's you cannot really understand this disease.

Since mom is living with this disease for over thirteen years I know how fortunate am to still have this time to spend with her, yet throughout the years, I have been saying my "goodbyes".

Alzheimer's disease is not only mind boggling, it also can be a very long journey as we watch our loved ones disappear. They no longer live in our world so we somehow must learn to live in theirs.

Regardless of how many years mom and I may have left, today and always, she is my mother, and I will first always be her daughter. I love you mom, more than words could ever say.




MY MOM MY HERO - A mother & daughters new found love. http://www.amazon.com/Mom-Hero-Alzheimers--daughters-bittersweet/dp/0615773982/ref=sr_1_1?ie=UTF8&qid=1454248406&sr=8-1&keywords=lisa+hirsch 

WHAT"S IT ALL ABOUT ?....ALFIE

WHAT'S IT ALL ABOUT ?... ALFIE


I cannot get out of my mind the song Alfie; "What's it all about Alfie? Is it just for the moment we live?"

As I sit and ponder what really exists in my mother's mind I cannot help but wonder who she thinks she is.  Unfortunately, mom can no longer provide me the answers I yearn to hear.

In the world mom now lives in, each day, after she wakes up she is taken care of and fed by aides. We are lucky that after thirteen years of having Alzheimer's she still can speak.

After she is washed and dressed she is then placed in her Merry Walker where she spends hours walking the halls of the nursing home in search of something or someone.

Since mom became ill, I have never seen any tears fall from her eyes. Actually, as a child, I cannot even recall her crying after her own mother passed away. She once shared with me that she cried every day for over a year, in the bathroom, for no one else to see.

How I wish I could know who is that something or someone she is searching for. Is it her parents, or could it be me? Probably her parents since she frequently is speaking about them.

I realize how fortunate we are for that most days mom seems content as she throws kisses and tells all the employees that she loves them.

I read so much about Amyloid plaques and tangles yet the scientists are unable to understand what is really going on in the thinking process of people with this disease.

How I hunger to ask her; are you happy or are you sad? Are you frightened or are you okay? Are you lonely? Is there anything that you would like me to do for you? Is there something that you would like to tell me? Do you know what is happening to you? Can you understand how deeply I love you?

I know there is a universe that mom now lives in, one that is real to her. Yet for me I cannot help but wonder what is going on in her world. So as the song goes "What's it all about Alfie? Is it just for the moment we live?"

I realize there are things that I will never understand and questions that will never be answered, yet as her daughter I need to believe that in her world she is sound, safe and happy.

After all these years, as each day goes by, Alzheimer's still remains a mystery to all of us.



MY MOM MY HERO - A mother & daughters new found love. http://www.amazon.com/Mom-Hero-Alzheimers--daughters-bittersweet/dp/0615773982/ref=sr_1_1?ie=UTF8&qid=1454248406&sr=8-1&keywords=lisa+hirsch

 

ALZHEIMER'S-MY MOM I LOVE HER SO

ALZHEIMER'S- MY MOM I LOVE HER SO


One evening, several weeks ago, I received a call from the nursing home where my mom has lived for the past three years. One can imagine the uncertainty I felt when I answered the phone.

Immediately the nurse said "everything's okay I just need to tell you that your mom was unresponsive today.” As I heard the word "unresponsive" my heart sank. I asked many questions as she proceeded to explain what had transpired.

My husband said as he looked at me that I appeared to have lost all the color in my face. His first thought was that mom had passed away until he heard me repeating what the nurse was saying.

I did not sleep soundly that night fearful that I would get a call that mom had passed away. The next morning my brother rushed to the nursing home where tests were already being performed.

Mom's unresponsiveness only lasted for a few moments, yet it was something that was new and felt quite scary. The blood results found that mom (93 years in August), in several ways, scored like a 40 year old. Her constitution is amazing, she is on no medication and, except for Alzheimer's and macular degeneration and she is the picture of health.

The next day I booked a plane to go and see her. Before leaving I called several times each day to make sure that she was doing okay. Each time I was told that she was running around in her Merry Walker. Mom bounced back rather quickly and I was happy that I was going to see her, even if it was just for three days.

After returning home my body felt stressed and my heart ached as if I was going through withdrawal. I missed seeing her and could not stop thinking about her. Again I kept phoning the nursing home to see how she was doing. Mom was doing fine, it was me who needed to "mend".

I kept thinking is she looking for me? Does she wonder where I am? Is she missing holding my hand, singing songs, or our silly conversations? Does she yearn to see me like a teenage girl, or am I in this all by myself? Is my heart hurting alone or can she also feel the pain?

I write as if she is my lover. No, she's my mother, yet I love her in so many similar ways. I know the answers to all these questions for the second I am no longer in her sight, she does not know that I was even there. In fact, when I am with her, she does not always know that I am her daughter.

None of this matters for in my heart and I deeply believe that in hers, we share a bond that only a mother and daughter could feel.



MY MOM MY HERO - A mother & daughters new found love. http://www.amazon.com/Mom-Hero-Alzheimers--daughters-bittersweet/dp/0615773982/ref=sr_1_1?ie=UTF8&qid=1454248406&sr=8-1&keywords=lisa+hirsch



 

MY BIRTHDAY WISHES

 

MY BIRTHDAY WISHES

I will be celebrating my birthday July 12th and I, who never made a big deal about this day, now feel differently. I find it sad that the woman who gave birth to me has no memory of this day, or in fact, any other day. Mom for the last thirteen years has been suffering from Alzheimer's.

The sorrowful part is that each year as I get older I loose a little bit more of her. Having a child of my own I cannot imagine that I might one day not remember bringing him into the world; or perhaps that I even had a child.  How could a disease like this invade one's mind and destroy a life that once was? This thought sends shock waves and chills through my entire body.

Alzheimer's is a rotten disease yet mom has been one of the more "fortunate" ones. The disease has not left her agitated and she seems to have opened her heart to more love. It is I, who feels the effects of the disease.

In mom's mind she still remembers me (and my brother) as a young child. Her mind has traveled back in time to thinking she still lives with her parents. A place and time for her that she once felt safe, loved and secure. Everything else has pretty much disappeared, so how could she in her mind now have a daughter all grown up? It's almost as if time has stood still.

Forgetting my birthday is the easy part, it's when I think about how she now lives and all the things she can no longer do, that I get upset. The simple things like getting out of bed each morning, feeding herself, getting dressed, combing her hair or brushing her teeth. These are things she no longer can do, yet I do them each morning maybe taking "life" for granted.

Mom does not realize how different her life has become because she has no memory of what her life once was. For her this is a "blessing", and for me it is being able to "accept" how things now are.

So mom, whether you can remember holding me in your arms as I took my first breath or tying my shoes as the laces came undone; this no longer matters. As long as you are not in pain and seem to be "relatively" content then I guess for now, as I blow out my birthday candles, there is not too much more that I could wish for.

I love you mom and will always be grateful that you are the mom who for many years put candles in my cakes; and as the years went by, you watched me grow up into a young lady, get married and have a child of my own.

I cannot thank my parents enough for bringing me into this world and for all the love that they gave me. I know that if mom could find the words she would surely wish me a Happy Birthday and share with me how very much she loves me. If only she could remember.

Other blog postings My Mom My hero can also be found

http://www.huffingtonpost.com/lisa-hirsch/

 

MY MOM MY HERO book is dedicated to my mother and yours. 
Available on Amazon & Kindle & Audio.

http://www.amazon.com/Mom-Hero-Alzheimers-A-daughters-bittersweet/dp/0615773982/ref=sr_1_1?ie=UTF8&qid=1389797650&sr=8-1&keywords=lisa+hirsch

A DEEP & PURE LOVE

 A DEEP & PURE LOVE –ALZHEIMER’S


Many moons ago my mom's world was sunny and bright. It was filled with excitement, love and joy. She had no idea that one day her entire life would vanish, as if it never existed. Truth be told, neither did I, for I had never heard of Alzheimer's.

Mom as a child loved to read and as I was growing up she always stressed this to me. Even into her later years mom yearned to continue learning. Her passion for knowledge was important to her. She loved to read and, through reading, taking college courses, she continued to stimulate herself. Sadly enough she can no longer do either of these things.

Today, because of this dreadful disease, almost everything she learned has disappeared. She has been robbed, even more, by having the memory of her entire life swept away as if it never existed.

My brother just returned to Florida after visiting me in New York. As he was here I continued to place my daily calls to the nursing home. With each call I reminded the nurses that my mother would not be having any family visitors for the next two weeks. I was well aware of her being all alone and somehow I was trying to protect her. Yet in her world she had no awareness of this.

This realization had me wondering about all the other people who live in a nursing home (especially those with Alzheimer's), and have no family or friends who come to visit them. Perhaps they are "locked away" without any key to free themselves from this awful world they now live in.

Although the facility my mom now lives in has no fancy hallways, activity rooms or bedrooms, the nurses and aides all seem to be committed and happy. When I think of the kindness and care that my mother is receiving I feel a sense of security, and know that this is what is most important.

My heart could easily break in two, if I allowed myself to think how my mom just wanders the hallways alone each day. She appears mesmerized, lost in her world not knowing where to go and what to do.

After hearing that someone from my Alzheimer’s support group mom just passed away I was filled with many different emotions. Some wanting my mom to be at peace while at the same time realizing how final that would be.

I do know that in some ways I am fortunate that my mom is still alive for the love I feel for her is deep and pure. I also know that each day I lose my mother a little more yet at the same time I also get to love her more.

 

 

My Mom My Hero Book is available on Amazon.

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INTERVIEWING MY MOM WITH ALZHEIMER'S

INTERVIEWING MY MOM WITH ALZHEIMER'S
 

I recently watched the powerful documentary Glen Campbell’s-“I’ll Be Me”. It left me with a feeling of respect, as well as pain for his family. Since my own mother has Alzheimer’s for the last twelve years, I completely understand for I have been walking down a similar path. The film also reminded me of something I had written in September 2012, which was a conversation that I had with my mother.
                                                               *****
On one of my many visits to Florida to see mom, I had decided that I wanted to interview her. The way she responded touched my heart in a deep profound way. I would love to share this with you.                     

"Mom, what does it feel like not to be able to remember something?” She responded, "It’s not always so bad not to remember everything.”

Several years earlier I had presented a similar question to her, where her answer was quite touching. Mom said “I know that whatever happened yesterday to me had to be nice, whether I can remember it or not.” Through the years that mom has Alzheimer’s there certainly have been moments when she becomes her own Buddha.  

I never fear asking her any questions, for I know that immediately everything disappears from her memory. Since this disease runs in my family when I forget simple things I am quite aware of it. It’s funny because I never think about getting cancer for my mom has been cancer free. Yet when it comes to Alzheimer’s I do kid around about it, yet deep inside the question still remains.

Back to my past interview: 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 wisdom mom was able to answer so easily.

She then started to reminisce about her own mother and growing up in Williamsburg and Coney Island, Brooklyn."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 sadness I say his name was Louie.

I wonder if she knows my father’s name. Better yet does she remember him? How could she not for they were married for fifty years. She has to, it's my dad! She does not remember. 

"Mom how many brother's or sister's do you have?” “I have both a brother and a sister,” she answers. No mom, I say to myself, you had only one younger brother who died from Alzheimer's.  I decided to lighten up and move away from this conversation.

I have been back home for almost a week now and each day that I speak to her she seems to have some recollection that I was there. Mom said that when she woke up she was looking all over her home for me, and could not find me. It saddened me that we live so far apart. It makes my heart ache. So, do I jump on a plane and run back to her?

I often wonder how this little lady who stands only 4 feet ten inches can melt my heart in such a way that I cannot contain my love for her. 

                                                                ****
 
This interview took place when mom was still living at home. Since writing this in 2012 so much has changed. Mom has been living in a nursing home for almost three years. She still speaks about her parents and most of the time does not know my name.

Most of her memory is gone yet, on a more positive note, she is still mobile and able to speak. For this I am quite grateful.

ALZHEIMER'S- DOES MOM KNOW IT'S MOTHER'S DAY?

ALZHEIIMER'S-DOES MOM KNOW IT"S MOTHER'S DAY?

Several months ago I was asked to write a letter to my mom which was then published in a book called "Letter to My Mom". Reading other letters, I realized that I was not the only one who, at one time, had a fractured relationship with their mother. Actually a relationship that needed healing.

Mom for the last twelve years has Alzheimer's and since she became ill, my relationship with her is totally transformed. I'm not sure why it changed yet I am so grateful that I was given a second chance to love her unconditionally.

I have realized that my mother taught me so much about life, even when I was unable to recognize it. She was a lady who showed me strength, integrity mixed with "tough" love. Whether at the moment I realized it or not, I now know that she was always there for me and loved me with all her heart, only wanting the very best for me.

As Mother's Day approaches I once again reflect on what the meaning of a mother is to me. I would like to share some definitions that I have found.

"A mother is someone who loves unconditionally and places the needs of her children above her own, on a personal level, and not only with words, but also actions."

"A mother is the woman who raises you, who is there for you to hold and comfort you when you are sick or hurt, the woman who laughs with you, who cries with you, who loves you, even when you aren't exactly lovable."

"A person who gives birth is a mother. A person who raises a child is mother. A person who loves and cares for a child is a mother."

Twenty eight years ago I myself became a mother. I vividly remember when I was pregnant and the day that my son entered the world. I melted as I held him in my arms for that very first time. I was so nervous since motherhood was something brand new to me. As challenging as it sometimes can be, for me being a mother was one of the greatest gifts in the world.

I'm sure that as a mother I could have handled some things differently, yet I hope that my son knows how very much I love him. As my mom drifts further and further away and our roles have reversed, it is a privilege for me to love, cherish and care for her as she had once did for me

So today on Mother's day I want to take the time to honor my mother. Even though mom has no idea that it is Mother's Day, I do, and I want to celebrate who she is.

Each one of us who has a mother with Alzheimer's, or has lost a mother to this disease, knows that whether they can recognize us or not, that they will always be our mother.

I would like to ask you to take a moment and reflect on how lucky we are to have had our mother's. This disease might have stolen them from us, yet not all the love that they feel in their hearts for us.

How lovely it is if we can all celebrate our mothers whether they had dementia or not. I love my mom deeply and would like to wish all the mom's a very Happy Mother's Day.




As Mother's Day approaches MY MOM MY HERO is a
wonderful gift for your mom or to give yourself honoring your mother.
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PEOPLE ASK-HOW IS MY MOM DOING?

PEOPLE ASK- HOW IS MY MOM DOING?


This is my mother 26 years ago. A lot has changed since then. My dad passed away 22 years ago and my son Logan is now 28-years-old. For the last three years mom has been living in a nursing home. Except for Alzheimer's and macular degeneration she takes no medication and is in perfect health.

In many ways my family has a lot to celebrate and be thankful for. Occasionally friends will ask this one question of me. "How is your mom doing?" I often answer, "my mom is doing good considering that she's had Alzheimer's for the last 12 years."

Several weeks ago I stopped to really think about this question. I thought about mom, a lady who has no idea about the life she once lived.

She no longer understands that she needs to get dressed each day, brush her teeth, or comb her hair.

She never thinks about what she'd like to eat, or what restaurant she'd like to go to.

She has no idea what has transpired in the world or that we just celebrated Thanksgiving.

She has no fear of Ebola or terrorism.

She does not understand that her only grandchild just got married. In fact she does not really remember that she has a grandchild.

She no longer needs to think about what friend she might like to spend the day with, or what movie she would like to go see.

She no longer has to make any decisions on whether she'd like to take a walk in the park, stroll on the beach, or go to her favorite museum.

She does not remember that she was married for 50 years. She does not remember giving birth to her two children.

She never has to decide where she'd like to go on vacation or what country she'd like to travel to. Life for her has certainly become "carefree".

Mom has no understanding of how her life has been wiped away by such a horrific disease. So how is my mom doing? She'd doing good, and how am I doing? I'm also doing good, which is a conscious decision that I have made.

Today there is no cure for Alzheimer's. So as long as I believe that my mom is "happy" and not in any pain the only thing left for me to do, is to love her completely.


 

THE POWER OF TOUCH

THE POWER OF TOUCH

I have read that physical touch is one of five ways people communicate and receive emotional love. It is also stated just reaching out and taking someone's hand can be the beginning of a journey. For me holding hands was the most tender moments that my mother and I shared during my month long visit.

As our fingers were intertwined like never before, as we held each other's hands, it felt to me as if I never wanted to let go. It was at that very moment that I became aware of how meaningful human touch was with my mother. Mom's fingers spoke words to me. They told me how much she loved me as I felt her warmth and tenderness like never before.

Every once in a while she'd open her eyes, look at me, squeeze my hand and smile. How I yearned to know what she was thinking, although on this day most of her words remained silent. Suffering for twelve years, Alzheimer's disease has been removing her use of language.

On this particular day as I played some of mom's favorite music she held my hand tightly as she either hummed along or softly spoke a few words to let me know how beautiful the music was. Heavens doors seemed to open as we listened to Susan Boyles sing "I Dreamed A Dream", Andre Bocelli and Pachelbel Canon in D major.

We held each other's hands for hours as if we were young lovers. Yet this was different it was my mother that I was touching. We needed no words, just holding hands said it all. We both held on so tenderly as if never wanting to let go. Each day thereafter I hungered for my mother's touch, meaning more to me than I could have ever imagined.

I am now back in New York while mom remains in Florida. Not only do I miss her deeply I very much miss the caressing of our hands. I miss her touch, her warmth her tenderness which filled my heart with love.

What does the human touch mean to you? Is it feeling the warmth and caring of another human being? Or is it perhaps feeling loved? Is it embracing another person?

Whatever it means to you, for me, it was an intimacy so different than one that I could have ever dreamed I would be able to share with my mother. It is for me a love that has come full circle and now is complete.
 

ALZHEIMER'S- IS THS A LIFE WORTH LIVING?

ALZHEIMER'S- IS THIS A LIFE WORTH LIVING?

As my month long visit comes to an end my trips each day to see my mom get harder and harder. I can feel my emotions surfacing, taking over as if I were riding a roller coaster.

I awake each morning  feeling like I could cry. I feel the pain of leaving her. In some ways I think I am deserting her. How I wish that I lived near mom so I could cuddle and care for her. I have this burning desire to protect her, as if she were my own child.

In many ways our roles have reversed, yet I yearn to hear her call my name. Even if it is for a brief moment I want her to know that I am her daughter.

Saying goodbye never gets easier. It’s not just leaving a parent, but also not knowing how much more of her will be left when I return.

I wonder if mom could have a sixth sense for on one of the final days of my visit my husband and I found her in bed. We caught her having a dream as she was having a lengthy conversation with someone. After she awoke she continued speaking to us with phrases that had a "philosophical" meaning. She shared her feelings on how we should appreciate our life and be kind to one another.

Could mom possibly know what I was feeling these last few days, or could this have been a miracle from above? Did she want to send me back to New York feeling complete? I felt like she was a Buddhist or an angel who had just spread her wings.

I realize that life is not fair. Some people die young and some live to an old ripe age. Some people in their nineties are still driving their cars while others have moved into nursing homes unable to care for themselves. None of us know what lies ahead and for this we need to be grateful for each day that we are alive.

Mom lives a life I hope never to endure for myself or any of my other loved ones. Her life was once so full and now she is locked away in her own universe. It is hard to explain yet sometimes it appears that she is trapped in the unknown world of the “Twilight Zone”.

Who am I to really judge if this is a life worth living. I wish that I could wave a magic wand and bring her back into the real world. Alzheimer's disease is a true mystery that also fascinates me.

I only wish that mom could understand all the love I have for her. I am fortunate to have been given a second chance to love her in a way that I never realized existed. Mom has become my hero. Her strength and courage inspires me each and every day.



 

ALZHEIMER'S -THE SUN WAS TRULY SHINING

ALZHEIMER'S-THE SUN WAS TRULY SHINING

As the first week of our visit came to an end, I was hoping to mom become more aware. Fortunately, during week one, each day mom seemed to become a little more alive. I could see she was yearning for the warmth of our human touch. I only wished that she would recognize me as her daughter. Alzheimer's disease has stolen from mom not only her identity but those whom she loved.

Since our arrival, each day was either cloudy or raining with only hints of sun peeking through.
The weather was not cooperating although this was not why we came to Florida. It was to spend some quality time for the entire month with mom. As week two began I awoke to the first day the sun was shining. There was not one single cloud in the sky. It was a crystal clear day and I felt the warmth from its rays, yet I could also not help but feel a pang in my heart.

My heart ached and I knew it was somehow connected to mom and the sunshine. I wondered how I could feel so sad on such a sunny warm day. I soon realized the heaviness I felt was that I could not share this day with mom. I knew she was probably incapable of enjoying it.

Truthfully speaking she has no awareness of what is happening in "our" world. She cannot recognize whether the sky is cloudy or filled with brilliant sunshine. She does not care and the world she now lives in could be described as a safe haven.

I wished that I could have taken her out to feel the warmth of the white sand as we strolled on the beach. I wanted mom to be able to put her toes in the sparkling water and feel the suns reflection on her body. This was a pastime that we once shared, one that I knew she loved. I was feeling sad just knowing she was missing out on this glorious sunny day.

As my husband and I approached the nursing home I realized that I had to quickly shake off these negative thoughts and feelings that were embedded in my soul.

As we approached mom, her first words were "I'm too young to die." She then tenderly touched my hand and kept repeating "stay with me," as we circled the hallways of the facility. I wondered what could she possibly be thinking?

On the tenth day my cousin's family came to visit mom. Mom had seven visitors all at once. I was hoping that all the noise and attention would not disturb her. Sometimes the sound of noise can be disorienting for those who suffer from Alzheimer's. I know that mom had no idea who anyone was, yet the mere fact that my cousin wanted to come and bring her family meant the world to me.

The following day I was pretty certain  we would find mom curled up in bed feeling exhausted. Instead we found her walking around in her Merry Walker filled with lots of energy, beaming with happiness. She immediately asked my husband if he would be her "boyfriend" quickly adding that she was only kidding. For that moment mom was back, quick witted and sharp as she could  be.

As the day came to an end, this visit with mom is one that I hope never to forget. It became a day when that the sun was truly shining!

ALZHEIMER'S-COULD THERE BE A SILVER LINING?

Alzheimer's -Could There Be A Silver Lining?

Since my mother lives in Florida and I reside in New York it had been a while since my husband and I had visited her. What made this trip extra special was the fact that we would be seeing her every day for one whole month. This was not one of my usual quick three day visits. It was one we did the year before with both of us knowing how meaningful and rewarding it would be. 

Upon arriving at the nursing home I nervously asked my husband to sign in as we proceeded to the second floor. Although many of the patients on this floor have Alzheimer's it is not a locked unit. Fortunately for us mom has never been one of the wanderers. She has never been on any medication for agitation, depression or any other ailments. Except for Alzheimer's and macular degeneration, at the age of 91, she is in "perfect" health.

As I exited from the elevator I quickly hurried to the nurse's station to introduce myself to a new nurse whom I never met, and to find out where my mom was. Was she walking around the second floor in her Merry Walker or was she still in bed? I was told that she was "off and running". I circled the floor and found mom in a corridor all alone. As I observed her I noticed that she was walking much slower. The good news was that she was still mobile.

I went to her and softly kissed her cheek as my eyes filled with tears. Mom was happy to see "someone" yet she had no idea that I was her daughter. It appeared that she was slipping further into the disease. The first thing she said to me after I kissed her was "kill me". I asked her what she said as she quickly corrected herself and said "kiss me." I wondered if this was a Freudian slip, did she actually say it in a moment of clarity, or was this something that she might have really wished for?

On day two mom, as soon as she saw us, said that she was very tired yet that she also felt happy. Was there some recollection to who I was?  Was it the sound of my voice, my touch on her skin, or were my kisses different than the ones she receives from the nurses and aides?

As we went into a sitting room that we nicknamed "the living room" we took mom out of her chair and sat down together on a couch. Mom held onto my hand and squeezed tightly, as if she never wanted to let go. The way she kept smiling at me made me want to believe that she was aware that I was her daughter.

We played some songs from You Tube that I knew she was once familiar with. She became alive as she sang along to Frank Sinatra's "My Way" and "New York, New York". It never stops to amaze me how much music cheers the soul of those who suffer from this disease. It is the best "healing" medication there is.  The magic of music somehow opens up their world; a world that no longer exits.

The following day mom refused to get out of bed. We found her laying in a fetal position looking, should I say, lost and trapped into her own world. She hardly spoke and refused to get up. I once again held her hand and was surprised and a little relieved when she threw me a kiss and told me that she loved me. It was a difficult visit just seeing her trapped and lost in her own world.

Unfortunately mom cannot describe or tell us what might be bothering her. Maybe she didn't sleep last night or maybe she was not feeling well.

On day four I was feeling anxious and filled with anticipation on how we would find mom. It turned out to be a day filled with miracles. Mom was up and about in her Merry Walker. As we approached her she told us that she was looking all over for us. We went to "hang out" in the living room and seeing how lucid mom was, I asked her to spell some words. This was something that she did well. We ambitiously asked her to spell orange, purple, yellow, sunshine, apple, and with amazement, she quickly spelt each word correctly.

This disease remains such a mystery to me. I have witnessed things with my mother's mind and after thirteen years with Alzheimer's I am still baffled. Since entering the nursing home why does she runs around searching for her parents? She speaks about them in such present tense and only wants to go home believing that they are worried and waiting for her. She repeats this same scenario almost every day.

 I wonder how she can still spell when spelling takes a memory and how can hearing music bring back the words that have long been forgotten? How can she be lucid one moment and then disappear into her world the next?

Yes, Alzheimer's is one of the cruelest disease's that eventually takes your life. Some people live with it for years and others succumb rather quickly. My mom has Alzheimer's for many years and if there could be any silver lining then I have found one. Mom cannot remember anything in her life that caused her any pain or suffering. She does not really understand what has happened to her and if she does the thought passes through her brain so quickly that she can "peacefully" go back into the world that she now lives in.

As her daughter first, and her caregiver second, I believe that I am the one that feels her pain; yet I too have been so fortunate to have been able to live in the world of being thankful & grateful for whatever mom and I still can share.

MY HEART IS ACHING

MY HEART IS ACHING


For the past two and half years my mom has been living in a nursing facility that specializes in dementia. She is now also on Medicaid. I presently am visiting her and my thoughts have traveled back, to when I first realized, that this would soon be our family's new reality.

My Heart is Aching (written March 2013)

During the week, I discovered that mom's money would shortly be running out. We are now getting closer to the moment, when she will have to go on Medicaid, and be admitted into a nursing home. Her condition is progressing, and my brother and I do not know how long she will be able to stay in her home.

I as her daughter, feel so saddened, and am left with a heaviness that I can hardly explain. I honestly feel a little lost. How can I do this to my mother? How can I abandon her? How can I just put her into a nursing home, when she still has moments of aliveness? How cruel can I be? What now are my choices?

I have so many things to think about, and hope that I will be able to do the best I can for her. I do not want to upset or hurt her. The strange thing is that mom will probably not even realize what is happening and, if she does, she immediately will forget it. Her wishes and my promises to never leave her home will be broken.

My emotions are running wild. I know in my heart that I am not alone in this. I know that this scenario happens every day to so many other families. My writing and being able to express myself helps ease my pain.

The nursing homes are filled with so many people and have long waiting lists especially in the Alzheimer units. The beds do not free up quickly, the victims of Alzheimer's can live for years and years with this terminal illness.

I was aware that this would be happening, just not realizing when I would have to face this. Now what? Was I living in denial, or choosing to live in the moment? Maybe we have some more time? Could mom bounce back again? Are our calculations incorrect? I think, I pray, and I wonder.

I passed a homeless man several days ago and felt so troubled by seeing him. He had no place to live, no shelter, nor food to eat. It was an epiphany that hit me, for I flashed on my mom.

has stolen her life from her, yet not the love I know she can still feel. Nor the warmth and comfort of her own bed. I must stay grateful for all the blessings that we have in our life, and know that the world still has some miracles.

Aftermath:

I awoke with only thoughts of my mom. I felt queasy and I was left with frets of fears, along with all the many decisions that will have to be made. Do I bring her back to New York? Can I even find a nursing home for her? Or should I have her remain in Florida, where she and my brother both live?

As I spoke to mom and shared how much I missed her, without telling her how my heart was aching, she said "do not worry, for we will get to see each other soon." At that very moment my heart broke in two.

I know that I must lighten up. Oh how I despise this horrific disease that robs you of your dignity and your life.

I cry out wanting only for my mother to hold me as when I was a young child, to comfort me as I snuggle into her arms. I want her to reassure me, that everything will be okay!

LIFE OF A LONG DISTANCE CAREGIVER

LIFE OF A LONG DISTANCE CAREGIVER

I remember, several years ago "defending" myself from a few caregivers who thought that I should not say I was mom's caregiver, since I lived so far away. Their tone was less than complimentary accusing me of not physically caring for my mother each day. Their voices stated how could I speak about being mom's caregiver, what could I possibly know. They had the burden of living with their parent and taking care of them with what seemed to be a shift of twenty four hours a day.

At first I felt hurt. How could they think that the pain of seeing a parent disappear was any different than what they were feeling? I wondered if I was any less of a daughter to my mother because I did not live near her. Did I not feel the same amount of pain or maybe more? What difference did it make? I was and am my mother's daughter, and that will never change no matter how many miles or oceans separate us.

My heart breaks, my eyes fill and swell with tears the same as theirs. My feelings of affection are as deep and I tremble every time my mom forgets my name.

I do have great compassion for them and I could feel and share their pain! Yes I did not live with my mother so maybe my long distance care giving was easier, yet I too, had the agony of hearing and seeing my mother disappear in front of my very eyes. One moment she knew me, and then while still on the same phone call she had no idea who I was or who she was speaking to.

I spoke to mom's caregivers every single day to hear all about mom's conditions. Sometimes mom had a moment of clarity and at other times she was going by ambulance to the emergency room after the aides found her bruised or with a UTI (urinary tract infection) which had mom hallucinating. I heard about how mom loved to listen to the CD'S that I made of her favorite show tunes. I questioned what she ate, if she took her vitamins and what were the plans for the day.

There were times when I was so frightened and hurt since I was not able to just jump in my car and rush to take care of her. Once, when she was in the hospital in rehab I spoke to the physical therapist who told me that my mother was not following instructions. My answer was "how could mom possibly remember what you just said since she has Alzheimer's." Hearing the response "oh I didn't know she had dementia" was upsetting since hospitals are not required to list the disease on the patients chart.

I once received a phone call from the First Response that mom's neighbors reported her "just sitting" outside her apartment on the curb. Her caregiver left for the day and because of confusion mom went to sit outside to wait for her. You would think that one of her neighbors would have just brought her back into her home. Maybe they were frightened or afraid of "catching" Alzheimer's. After all these years of knowing her how could they now just shun her like this?

So with deep thought my question is, am I any less of a daughter than the others since I am a long distance caregiver? Or do I feel less pain or love my mother any less? Thankfully for me I do have the answer.  My love for her is as deep as the bottom of the sea and as vivid and bright as all the stars that light up the universe. She is my mother and I am always her daughter.



MY MOM MY HERO book is dedicated to the people we love. 
Available on Amazon & Kindle & Audio

ALZHEIMER'S -IS THIS THE LONG GOODBYE ?

ALZHEIMER'S-IS THIS THE LONG GOODBYE?

My best friend's mother just passed away after suffering from Alzheimer's for the last several years. As she sat by her mom's bed for the last week watching her fade away, I could not help but wonder what it will be like for my mom when her time arrives. As I received the news, uncontrollable tears began to run down my face. I knew a great deal of the sorrow that I was feeling was connected to my own personal grief.

At the Alzheimer's support group I have been attending for the last four years, my group leader has been telling me that I was in a grieving process. The first time she said this to me, I responded that I was not, because my mom was not dying. Now I understand all too much.

It's funny because just the other day one of mom's nurses reassured me, with delight in her voice, that my mom was doing great. She shared with me how blessed my mom was and that she'll be around for quite a while. After hanging up the phone my thoughts and feelings ran rampant.

Yes, I understand that I am lucky to still have my mom, yet I also know how much more Alzheimer's can rob from her. Just thinking of how much worse she could become, as her disease progresses, leaves me feeling nauseous and sick to my stomach.

I must confess, that at moments throughout the years, knowing that there is no cure, I have wished that my mom could just close her eyes and go to sleep. I know that if she understood or could see what was happening to her, she would also wish for the same.

Today, I am in mourning for my best friend's mom and maybe also grieving for mine. For now I know that I must express what I am feeling to free myself from these haunting thoughts. Maybe for my mother and our family this will be a long goodbye. Whatever it is I need to get back into the space of being grateful.

I have been in Florida this month with my husband to hopefully spend some quality time with mom. If I can see her smile, hold her hand and hear her say she loves me, I will be able to come from a place of feeling thankful.

Mom has not only inspired me for the last 13 years, she has also become my hero, and for that I consider myself one lucky lady!