Wednesday, April 27, 2016

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.


 

Tuesday, April 19, 2016

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.
 

Wednesday, April 6, 2016

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.



 


Monday, March 14, 2016

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!



Thursday, March 3, 2016

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.

Tuesday, February 9, 2016

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!

Saturday, January 30, 2016

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




Thursday, January 14, 2016

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!



 

Monday, December 21, 2015

LUCKY, LUCKY ME!


LUCKY, LUCKY ME

I'd like to share with you my journey, feelings & emotions regarding my mom who has Alzheimer's.
My Mom My Hero.  Wishing everyone a peaceful, healthy 2016 as I also get to spend the entire month of January with my mom. Lucky, lucky me!

http://m.huffpost.com/us/author/lisa-hirsch

Tuesday, December 1, 2015

IS THIS LIFE?


 IS THIS LIFE?

Alzheimer's is a fascinating disease when compared to other illnesses for it storms in, attacks all of one's brain cells, eventually leaving nothing in its path. It deeply saddens me as I question how this is possible.

Even more frustrating is that my mom cannot describe to me what is happening to her. I can only guess what she may be thinking or feeling. Why, with most of her memory gone, does she still search all over for her parents? What makes her reverse back to her childhood even as she becomes more childlike?

I was fortunate to be able to speak to mom the other day which is not the usual. I shared with her by phone since I am a long distance caregiver how much I loved her and how special she was to me. She repeated the word "special" and then rambled on mixing up words so I had no clue what she was trying to say. I guess she understood what I said for one flashing moment as she quickly moved back into her own world. A world in which she now lives all alone.

I often feel like a pendulum myself swinging back and forth with my mixed up feelings concerning her. There are times when she can make me smile and other times when I wonder what her life is all about. My heartache is in thinking of her nonexistence.

I have been complimented on what a wonderful daughter I am and wish that I could truly own this. It took my mom getting dementia (twelve years ago) for me to love her the way I do. Before she became ill, of course I loved her, for she was my mother, yet my love and feelings for her were so different.

I regret that I was not aware of how much love for her existed inside me. I do know now how fortunate I was to be given a second chance to love her unconditionally. For this I am surely thankful.

Since mom does not know the difference of the world she now lives in, I as her daughter, am the one who is left to feel the pain. How I wish I could rescue her from this world of no return. The destructive world of Alzheimer's.
In four weeks I will be arriving in Florida with my husband to spend one month visiting mom at the nursing home. This is the second year that we were able to arrange this. Last year for all of us it was so meaningful. Mom became more and more “alive” as she greeted us each day. Of course she could not share this, yet in my heart I could feel it.
I loved being transformed from the “long distance caregiver” to mom’s “daily” caregiver. It was a feeling, although at moments quite difficult, of being able to care for my mom as she once had cared for me.

Thursday, November 12, 2015

THE COUNTDOWN BEGINS


THE COUNTDOWN BEGINS

In seven weeks I will be arriving in Florida to spend a month visiting mom at the nursing home. It has been a while since I have seen her and, with much excitement, my countdown has begun. I can hardly wait to hug, kiss and hold her hand in mine.

My quick three day trips had become less meaningful. For mom, as well as myself and husband, being able to spend a significant amount of time with her really made a difference. Each day mom became more alive as she reminisced about her parents and her own childhood.

When I recently questioned the head of nursing she said that mom has not changed much since I last saw her. In some ways Alzheimer's has not stolen more of her "soul".

Over the weekend I was able to speak to mom and actually see her on my cell phone. It was such a thrill for me yet unfortunately for mom (having macular degeneration) she could not see me. We were able to share how much we loved and missed one another, and without me even asking, she threw me her kisses.

Catching each other's kisses at the end of each phone call is something we use to do every single day for years. After mom entered the facility one of the things I missed greatly was getting her kisses each and every day. The kisses I so cherished.

Knowing that she has no concept of time or reality, I still shouted with joy that I would be seeing her in a few days. Mom quickly repeated this to my sister-in-law with much enthusiasm and delight in her voice as she then decided to stand up and walk away; as if I was not even on the phone.

I know that this was just a few seconds of clarity for her. Yet I am amazed that she can still have these moments even after eleven years of this illness.

As she disappeared from the camera in her Merry Walker and the phones were disconnected my heart was bursting with all the love I feel for her. In many ways I am so proud that she is my mother.



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




Wednesday, October 28, 2015

MOM, CAN YOU SHARE YOUR WEDDING DAY?


MOM, CAN YOU SHARE YOUR WEDDING DAY?

October 25th,1942 my mother & father were married. I never questioned them about their wedding and sadly, today, I have no one left to ask. I wonder if they had a big party. Was it in Brooklyn where my mom grew up, or was it on the Lower East Side of Manhattan where my dad was raised? From this picture I know that mom wore a beautiful wedding dress and held a lovely bouquet of flowers. Neither one of their families had much money so their celebration could not have been fancy or extravagant.

Realizing this, I just phoned my brother to see if he remembers anything. He did not answer his cell phone so, in a panic, I sent him a text and asked him to call me ASAP. I didn't want him to worry, so I mentioned that everything was okay. I just needed to ask him something. My brother just returned my call, he also knew nothing about mom & dad's wedding day.

My reaction surprises me, since all of a sudden the facts and details about their wedding day is so important to me. Is it because all the history of my parent's lives will shortly be gone; or due to mom's disease it has already disappeared?

I was married two times and for neither one did I walk "down the aisle". I never remember mom giving her opinion or saying very much about her own wedding. Could I have been so caught up in my decision that I never bothered to listen?

Today I yearn to hear my parents tell me all about their lives. I could sit intently with a quest and hunger to listen to every word they had to say.  Without realizing it I took for granted that my parents would always be around to tell me about their dreams, their desires and their lives.

Mom can no longer tell me much about anything since she now has Alzheimer's. If I could ask her one question it would be, mom can you tell me about your wedding day? Unfortunately I now know there is no answer.




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