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.

 

Thursday, October 15, 2015

MOM'S "NEW" WORLD

 

MOM'S "NEW" WORLD


In less than three months I will be back in Florida to spend some valuable time with my mom. As the countdown begins I feel a conflict of emotions; excitement, since I will be able to see her every day, and nervousness wondering what she will be like.

I wonder why, when I think of her, my feelings of love and queasiness go hand in hand. Her world seems to have stopped as if the arms of a clock were frozen in time. Why can't I just except what her "new "world now consists of ?

As her daughter and caregiver I seem to envision what I would not want for her. If mom had a looking glass before, and had known what her life would have looked like, would she have asked me to "save" her from this world; a universe of Alzheimer's and a world that is still so unknown ?

Alzheimer's has different stages and although mom has been in stage 6 for some time now, she  appears as she did a year ago. It is over eleven years since she has dementia. Is this good or bad? Is she one of the lucky ones ? It is all how one looks at it. I believe that mom is not suffering so then I feel that, given this disease, this is all that I can ask for.

Have you ever wondered what it would be like not to know where you are, what day it is, if the sun is shining, or if it is raining? What did you eat for dinner last night and how did you spend your day? What is your favorite movie or what book did you just finish? These are the simple everyday things of life that most of us take for granted. Can you imagine not knowing any of these answers?

I question, who is the one truly suffering? Is it my mom or is it me? I think we as caregivers know that answer. Yet there is nothing we can do. I ,like you, sit and wait. Fortunately I still cherish her smiles, her laughter and as each days go by, me in my world, and mom in her "new" world, I take a deep breath and keep moving on.



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

Friday, October 2, 2015

THE WEDDING DAY


THE WEDDING DAY


My son got married this past weekend and my husband and I are still floating on "cloud nine". The wedding took place in Martha's Vineyard which is a 5 hour car ride from my home in New York City. We were away for five days to celebrate this joyous occasion with family and friends.

Mom would have been so happy and proud. Logan was the "love of her life," and also the only grandchild she ever had. I wore a bracelet to the wedding that my mom had given me so I could feel that she was somehow with us.

Since mom has Alzheimer's and lives in Florida we knew that it would be impossible for her to come. I did not call the nursing home for five days, although I had notified them that my brother and I would be away. I knew that if anything happened they would immediately contact one of us. 

After returning home from Logan's & Julia's wedding I quickly phoned the nursing home. They told me that mom was doing well and I shared with the nurse about my son's wedding and asked her to please go tell my mom. As I hung up the phone, my eyes became watery, as I wiped away my tears.

Maybe mom would understand for a split second, yet I realized, poof it would all be gone. I knew that there would be no pictures for her to glow over, or any memories of the special times they once had shared.

A sadness came over me as I realized how she is locked away, not knowing any of the joyous parts of the world she once lived in. I thought, is this the life that she would want to be living? If I had the power would I be able to end it for her?

I shared this with my Alzheimer Support Group yesterday, and what I was left with, is that death is so final. I would no longer be able to hold her hand, touch her cheek or see her smile. Could it now be that what I have wished for, may not be, what I really truly want.


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



 

Friday, September 18, 2015

WEDDING BELLES WILL RING


WEDDING BELLES WILL RING

Mom,

I wanted to share with you that next Saturday Sept 26th your one and only grandchild will be getting married. I know how much love you had for Logan and how very much you adored him. As his grandmother you would have been so proud to see what a truly wonderful young man he has become, as well as loving Julia, his bride to be.

I know that daddy would have felt the same, yet he has been gone for over twenty years. You're different, for you, are still alive. You may be living in your "own" world yet I wanted to somehow share with you their special Wedding Day.

You will be with me, if only in spirit, as they say their vows. I will keep you tucked in my soul and close to my heart feeling your smiles of happiness and abundance of love you have for them. As we raise our glasses to toast them I will feel you by my side.

We all know how terrible Alzheimer's is, yet on this day, we will only celebrate all the miracles of life. We shall feel blessed and grateful as we watch the next generation be united as one. With passion and love they will become husband and wife.

With much love I promise to only have tears of joy and not let anything else spoil this special day.

I love you deeply,
Lisa


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

 

Friday, September 4, 2015

ALL YEAR LONG


 ALL YEAR LONG

I awoke today with this burning desire to cuddle up and tell you not to worry that everything will be okay. My feelings surfaced once again after watching a week old video that my brother just recorded of you. I was saddened when you could not recall your own mother's name who I know you adored. This time, if only for a second, it was your dad who was vivid in your memory.

I can't help but want to protect you "from the cold" as if you were my own child. None of this is possible given the distance that lies between us. It is still five long months before I will see you again and at least be able to spend an entire month with you. I fear that you are moving backwards as I dream of bringing you forward in time.

This morning I questioned what it would have been if I were able to have conversed with you each day for hours. Would this have helped with your memory and with losing your ability to make sense when you speak? Could this have slowed the progression of your disease? I know that it is Alzheimer's that has robbed you of this, except I cannot help but wonder.

This feeling of just wanting to protect you is one that will not go away. Just thinking that your confusion might be frightening to you brings more sorrow to my heart.

Logan your only grandson is getting married in less than a month and although you are alive you cannot understand. Could my feelings also be in some way connected to this special celebration?

All of us who have witnessed this horrific disease first hand still cannot understand it. Yes September is Worldwide Alzheimer's month yet for all of us, families caregivers it lasts all year long.


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

 

Friday, August 28, 2015

SHOULD I CELEBRATE?... Yes


SHOULD I CELEBRATE ? ...Yes

On August 24th my mom turned ninety one years old. This picture was from last year when we celebrated her 90th birthday. It was in some ways "exciting" to share this monumental birthday with her given that she has Alzheimer's for over eleven years. To be totally honest to myself there are moments when I question; is this the life I would want to be living?

I live in Manhattan where there are some elders in their early 90's who are still so full of life. Maybe they have slowed down, yet they are still able to come to the gym each morning, enjoy museums, the theatre, take a stroll through Central Park and dine out with friends or family. My husband also has quite a few aunts and uncles who are also in their 90's still driving around, traveling and living their lives "fully".  They are amongst the few that are truly blessed to be in such great health especially given their age.

For mom and many others who suffer from dementia there is not much quality left in their lives.  Just knowing how my mom now is I cannot help to notice and compare.

Obviously, if I were one of the fortunate ones I would be thrilled to be celebrating my 90th Birthday; and if I were like my mother, than for me, I'd rather not . I do know that mom is definitely one of the luckier ones; for she is still mobile, can spell and has as  a good sense of humor. She has not faded away as quickly as some others who have succumb to this horrific disease.

On a brighter note since Alzheimer's leaves mom without a memory she cannot recall how old she is. Thinking you are in your sixties is not such a bad thing when you are already past ninety.

So mom, although I am not with you this year to sing Happy Birthday or feed you you're birthday cake, I do want to say I love you and wish you a very Happy Birthday. Through my brother and your wonderful nurses I was at least able to deliver all of my wishes to you, which did leave me feeling complete.





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