THE LONG GOODBYE

Picture is from 2012 (mom already had Alzheimer's)

THE LONG GOODBYE

I haven't seen my mother since the pandemic began in March 2020.Without any notice, mom's nursing home was shut down like so many others around the country. As of now, only with a scheduled appointment would I be able to visit her outside. Since she resides in Florida and I live in New York that sadly is not possible as of now.

I guess the next best thing is being able to FaceTime with her. Mom can no longer see due to macular degeneration. Her eyes remain closed mainly because of Alzheimer’s . With some wonderful assistance from hospice staff when they visit, or an employee from the nursing home, I get to see and speak to her every few weeks.

When these planned calls transpire I see my mom either lying in bed or slumped over in a wheelchair. Her eyes are closed yet when she hears the sound of my voice I know that not only does she hear me, she also recognizes my voice, as she nods her head in an up and down motion. Sometimes her eyes flutter as she tries to open them. I tell her how very much I love and miss her as her head still moves to let me know she is hearing me. The very first time we did the FT call I was anxious yet, as we proceeded, tears rolled down my face and at that moment I was glad that she could not see me.

The head of nursing who I speak to frequently called to tell me that my mom lost 3 more pounds and now weighs 76 lbs. She mentioned that her skin color is good and it's amazing that the wound on her leg had healed. She continues to say that she is not eating and the weight loss is not a positive thing. I pray to myself once again wondering if mom is finally getting ready to let go.

As my mind clears, I once again pray that mom would just go to sleep, something that I have wished for these last several years. I hope that in 2021 she will finally find peace for this has been a very "long goodbye".

As I think back about the last eight years I am so touched by all the love & support that my Blog & FB friends have given me. It has been a long journey for most of us and I am so grateful and thankful for all of you. We are a “ family” that unfortunately have walked similar paths and we all have an appreciation and understanding of what all of us are going through.

I am thinking of our loved ones and the families who suffer from this horrific disease, and hope that we all stay safe through this pandemic .

"Letter To My Mom" & My Mom My Hero are both available on Amazon worldwide. Ebook, Audio, Paperback.

https://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=lisa+hirsch

CELEBRATING MOM'S 96th BIRTHDAY

What can I possibly say today on my mothers 96th Birthday? That for the last several years I have been wishing for her to find peace, or that I am sorry that years ago, I could not have removed this horrific disease Alzheimer's from her.

Yet through the last 16 years that my mom became ill I have also been blessed to have fallen unconditionally in love with her.

Before mom was sick our relationship had many hills and valleys. Yes, we had some moments and were able to share some touching times together, especially when my dad was dying.

As I flash back, I remember when mom would come visit weekly from Long Island to help me with the business I had started. We would heat-seal bags after stuffing them with t-shirts, stencils and magical fabric crayons to create a craft kit for children. During this time each week we would speak and laugh for hours. As a newly wed, in my early thirties, I remember sharing with her my ambitions, hopes and dreams.

Looking back, I now wonder how and when did our relationship go astray? As a teenager I recall when my friends came over mom seemed to always embarrass me. As I now reflect it was I who had the problem. My insecurities not fitting into the wealthy community my parents moved to effected me in many ways.

How I wish that I could turn back the hands of time and regain all the years I wasted. Knowing that this is not possible, I focus on the present and am quite thankful that I was able to get in touch with all the deep love and affection I have for my mother.

From my experience I know, from the bottom of my heart, that it is never too late to heal one's relationship, especially with a parent.

So mom, on your 96th Birthday, although you cannot hear me, nor maybe understand me, I want to tell you how very much I love and adore you.

As I reminisce on my youth, getting married and becoming a mother myself, I want to thank you for all the love you have given me and, even more, for always being there for me.

As you "blow" out your candles, I hope you can soon find peace. It would be my wish for you even knowing that when the time comes, given the pandemic I cannot be with you. You will be all alone. Yes the hospice nurse will be present yet I, your daughter, will not be able to be there to touch you, hold your hand and whisper, I love you.

My mom, who brought me into this world, will leave this world all alone. As sad as this is to say, this is my wish and I pray for you that it comes soon.

"Letter To My Mom" & My Mom My Hero are both available on Amazon worldwide. Ebook, Audio, Paperback.

https://www.amazon.com/s?k=Lisa+R+Hirsch+Alzheimer%27s+books&rh=n%3A227635&ref=nb_sb_noss

IF MOM COULD ONLY SPEAK...

 

IF MOM COULD ONLY SPEAK...                                                                               Year 2019

My husband and I arrived in Florida this past January to, once again, spend some valuable time with my mother. We were greatly taken back when we realized how advanced her Alzheimer's had become. Mom's eyes remained constantly closed as she sat slumped over in her wheelchair. Her face remained expressionless and we witnessed her refusal of any food.

After several days I recalled what I had read the year before in mom's Heath Care Directive. As her daughter and surrogate I knew that I had to do whatever was humanly possible to carry out her wishes.

I phoned the attorney's office who, in 2007 in the state of Florida, drew up mom's directive. She redid it shortly after her younger brother passed away from Alzheimer's. After the attorneys reviewed it they advised me to reach out to hospice which I immediately did.

We met someone from hospice who felt that they could help us. They were going to take mom that evening to their facility to give her "comfort care". After some confusion with the nursing home, hospice realized that presently they could not do this. They too had to comply with the laws of Florida.

After she read moms directive we were at least fortunate to have gained the total support from the medical director of hospice . She said that she never read anyone's wishes spelled out so clearly, yet we still had many roadblocks momentarily in our way.

That evening I had a restless night’s sleep and in the morning my heart remained hopeful that we would be able to succeed in carrying out moms’ wishes.

There was no way that I would give up trying so we decided to approach the administration at the nursing home. I respectfully pleaded with them as I shared what my mother wished for, which was all legally documented. Mom's proxy was sent to their legal department and given the laws of Florida, once again we were told that there was not much they could do.

As mom started to lose more weight the doctor from the nursing home put her on 3 supplements (i.e. Ensure) and protein drinks a day. We tried to stop these drinks, yet the nursing home would not again abide to her or our wishes. Although they were compassionate and understanding I quickly realized that nursing homes are focused on keep their patients alive.

I am trying to accept what has transpired in the last few months. As one can only imagine it is very difficult. I have endured heartache watching my mother as she succumbs to this horrific disease. All I really want is for her to go to sleep as peacefully as possible.

I whole heartedly believe in "Death with Dignity" also known as assisted suicide. I believe that one has the right to leave this world when they are suffering and know the inevitable. When there is no longer any quality left in one’s life it should be their given right to decide when they wish to peacefully pass on.

Currently eight states have passed a bill allowing one to end their lives in this way. I know that this is a long battle yet as soon as New York State passes this bill, which I hope will be soon, I am committed to fight for the rights of those with Dementia. Even in the states that have passed aid in dying having Alzheimer's is not included, even if one's wishes were stated prior to when they no longer could speak for themselves.

I will begin in New York because that is where I reside. If I can help get it passed here, which would probably take years, then hopefully other states will follow. This is my mission not only for my myself, if I were to get Alzheimer's, but for all the others who suffer from this disease. Maybe one day this bill will be called "Ruthie's Law". An honor that my mom would be proud of.

This is my commitment and something I hope that many of you will join with me in this battle! Not only would I have wanted this for my mother, it is something that I wish for my loved ones and myself. It's called the freedom of choice!

If Mom could only speak what would she say...……..



"Letter To My Mom" & My Mom My Hero are both available on Amazon worldwide. Ebook, Audio, Paperback.
https://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=lisa+hirsch

INTERVIEWING MY MOM WITH ALZHEIMER'S

INTERVIEWING MY MOM WITH ALZHEIMER'S

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


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


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

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


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

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

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

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


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

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

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

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

WHAT BECOMES OF THE BROKEN HEARTED ?

WHAT BECOMES OF THE BROKEN HEARTED ?

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

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

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

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

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

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

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

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

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

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

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

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

BECAUSE I LOVE YOU

BECAUSE I LOVE YOU

The first words from my mom after we said our good morning hellos was "when are you coming to see me"? Mom, (I fibbed) in a couple of weeks". "Great, and who are you coming with"? "My husband", I replied. "You're married"? "Yes mom, I've been married for thirty years". "I can't believe your married, you look so young. You look like a baby".

As I smiled to myself, and felt the love from my mom, I flashed on when I was a little girl, which was many years ago. I thought of my mom in her youth and all the things we did together. That was then and this is now.

She then asked where I lived and I answered, New York. Mom was able to have a moment of memory for she answered, "I use to come to visit you a lot in New York". Yes mom, I thought to myself, and you also were also born and raised here. New York was your home.

Mom lived here till she was sixty two years old. She moved right before I became pregnant, with her one and only grandchild. Logan is his name, named after her dad Louis. He will be turning twenty five in several months and today, with all the love she feels for him, and all the special moments they shared, he is just a fading memory in her life.

 Last week when I mentioned Logan's name, she said it sounded familiar to her.  Her grandson that she so adored, now just a glimpse of a shadow in her "world".  I know in my heart that all her love is still there for him, its just that she cannot connect all the pieces.  Sometimes when we speak of her grandchild, she thinks that he is still a young child.  She will ask why I allow him to do some of the things I share with her.  She cannot believe how old he ,what he looks like, or his stature of being six feet tall.

Deciding to lighten the conversation and to have some fun, I asked Ruthie if she'd like to live with me in New York.  Mom use to say that she would never leave Florida. This time to my surprise, she said "how would I get there". "Well mom I could come and bring you up". "When"? she asked. "Maybe soon". "Okay let me think about it". Of course this conversation, like so many others quickly faded into the distance, for the next time we would speak, mom would have no memory of it.

Alzheimer's, now that I can see what it has stolen from my mom, her life, her existence still leaves me with the question of, how can this disease just eat away your life, as if it never existed?  It is mind boggling to me.

As our phone call came to an end, mom softly whispered to me "please come visit, I have a home you can stay in . Lisa, you know that you can come whenever you want, because I  love you".

At that moment this little lady, who is no longer five feet tall, broke my heart. I wanted to pick her up and hold her in my arms and tell her that everything will be okay. Okay? I know that is not the way this illness usually ends. Yet for now, I still can hear mom speak those tender words to me. And for me, at the moment this is all I need.  I feel the love, and deeply cherish all that we still have, no matter how little, it may be.





 

LIFE'S SHORT, BE HAPPY

LIFE'S SHORT, BE HAPPY

 The picture above is from a birthday we celebrated together two years ago, while I was visiting my mom in Florida.  Today she turned eighty eight years "young". This year I remained in New York during her birthday. The best I could do, was send her a special birthday card filled with much love and affection, and sing her the Happy Birthday song. This week as we approached her birthday, it was in some ways quite different.

The week started where my mom's caregiver Trudy, called around 8:30AM, to tell me that she called for an ambulance to take my mom to the hospital. She had cleared the decision with my brother Gil.
When she arrived she found Ruthie to be a little disoriented and complaining terribly about pain in her neck.

Trudy discovered that my mom had several bruises and black and blue marks on her arms, wrists and fingers. We all seemed to wonder what had happened to my mom, and since she could not tell us, we all assumed that she must have fallen down. The medics arrived and Ruthie was at least able to tell them her birth date and her name as take strapped her to a stretcher, and placed her in the ambulance.

 Several hours later when I spoke to the emergency room doctor they were discharging my mom and sending her home. The doctor said that they ran many tests, took ex rays, MRI, urine, blood, and he was pleased to say that everything was normal. Yes in his world normal, and in ours, except for having Alzheimer's and macular degeneration mom was doing great as in"normal". Nothing appeared to be broken.

I spoke to everyone several times that day from the hospital and later when mom was back at home. The next two days, mom appeared to be so weak that she had trouble walking to the bathroom. We had her caregivers, who normally stay for twelve hours, sleep over with mom for several days. By day three mom was starting to bounce back. She was walking much better and the even started laughing and singing along with me as we practiced her birthday song.

What struck me the most with this week was the several comments my mom had made about life, and being alive. The day she came back home from the hospital, she was rambling on about things that made absolutely no sense. When I mentioned that she was in the hospital she said "no, I was never in the hospital." I thought that all the strange things she was describing, was in someway related to the nurses, the x ray machines, the fear of being in an ambulance, things that she was not able to remember. Yet as clear as day my mom in between speed talking, said to me, "life is short so you just need to remember to be happy". I hung up the phone, turned to my husband with amazement,
and thought how profound it was what my mom had just said .

The next day, somewhere in our conversation, mom said to me that she wanted to be alive.  With a lightness in my voice, I told her that she was very alive, for who else was I speaking to. Finally on the day before her birthday, as we practiced singing her birthday song, she chirped in with, as we got to the end of "how old are you now, how old are you now"? my mom answered with "old enough to be alive, and thank god".

All these phrases she kept saying about life and living, only left me to wonder what my mom had felt was happening to her this week.  Feelings that she can no longer share or express, for they just disappear from her memory. Feelings that seem to go unspoken . All the things she described to me, I truly believe for her, was a statement of wanting to live.  Mom was not ready to die.

So mom, I toast you on your birthday, and as you just recently said to me, I will remember that "life is short, so we need to be happy".  Yes my sweet loving mom , once again your words become wisdom to my ears. I just want to wish you a very Happy Birthday, and to let you know how very much I love and cherish you.  I do not know how many more we will be able to celebrate together, yet for number eighty eight, it stays in my heart as a very special one.

GLIMMERS OF A RAINBOW

GLIMMERS OF A RAINBOW

Sometimes when dark clouds start to clear, the sky opens up to glimmers of a rainbow . This is how my mom has been this week after the antibiotic she has been on started to work. Before we knew that she had a UTI infection, my mom appeared listless, only wanting to sleep her days away.

Not anymore. The sounds of her laughter and joy could certainly fill the size of a ballroom. Mom was reciting to me a rhyme that she recently made up. "Mister, Mister, where did you meet your sister". She said it over and over again, with much humor and expression in her voice. Each time that she repeated her new rhyme "Mister, Mister where did you meet your sister? we would both giggle as she rejoiced with her verses. She even had her caregiver Trudy, laughing hysterically in the background.

Just hearing the sound of her joy and happiness delighted me, sending thrills up and down my spine . She sounded so alive as if she was having an adrenaline rush, or maybe was about to run a marathon race . Either way the excitement that she showed brought a needed smile to my face and a lightness to my heart. The week before I knew that my mom was having a rather hard time.

Alzheimer's is such a strange disease and one that I do not understand. One day my mom can be lethargic, and the next day she can be dancing the night away. I never know how long these moments of aliveness can last. Nor do I really want to know. I just try to go with the flow of mom's ups and downs.

I wish that every day would be an up day for my mom. This I know is not possible. I find it hard to even imagine how in some ways my mom is so alive, yet in other ways there is not much that exists in her life.

Mom will be eighty eight years old at the end of this week. Except for having Alzheimer's and macular degeneration she is in rather good health. She never seems to complain about anything, and on her good days there is always joy and laughter that resonates from her being. The only thing that she will say to me is that she cannot remember much of anything.

Actually mom remembers very little of anything.  For me the most important thing is that she still remembers me. I know that this is a gift to be cherished. A gift that may one day be taken away. Yet today I choose to remain happy. Its almost like when I see the glimmers of rainbows forming in the sky. I see all the beauty and do not remember the storm that just passed by.

I FEEL MOM DRIFTING AWAY

I FEEL MOM DRIFTING AWAY


My mom will be eighty eight years old in fourteen days. For this I am quite grateful. Yet the last few weeks I can feel how she is starting to drift further away. One could say like a boat lost at sea, or caught in the mist of a dense fog.

Yes, we still have our special moments, and I can still hear the sound of joy and laughter coming from her as we speak.  I just notice that they are becoming less frequent. At times her voice sounds more lethargic and somewhat listless . Perhaps it is that she is moving further along with her Alzheimer's, and also being eighty eight makes her no spring chicken.

In the beginning of the week my mom sounded disoriented, complaining about back pains. She did not know where she lived, and only wanted to go back home, for fear that her mom would be worried about her. We were fortunate to realize that mom was having a UTI.(urinary tract infection) and quickly got her on an antibiotic. We were down this path several months ago, so we are now educated about what to do for her.  It is several days later now and mom sounds "back to normal".

My mom will kid around with me and tell me that I am catching up to her in age. "How about your height"? I ask of her. Mom who is under five feet tall, responds with" who knows maybe I still will grow".  At moments like this her humor warms my heart.

I try my best to keep her mind stimulated.  Mom has been an excellent speller and always had a great vocabulary. She seems to still get ninety percent of the words she spells correct. Yet when I ask her to spell Portugal, she says to me "what's that?, I never heard of it". Or she'll say" what is a lobster" ?, which mom use to love to eat. "Mom, can you spell illusion", "I never heard of that word". "Okay mom spell delusion" which she was able to do as simple as 1,2,3.

Her voice seems more tired and there are more days when she wants to take a nap. Mom was someone who never napped. I wonder if she is up all hours of the night, since I'm aware that people with Alzheimer's have awkward sleep patterns.  Day is night and nights can be day.They do not realize the difference, as if they are all rolled into one.

On the other side of this cloud is still some sunshine. My mom asked when am I coming to visit, after I had just described how foggy it was outside. She then was able to respond with that I shouldn't come to the sky brightens, because she would never want anything to happen to me.

"Mom, you can really break my heart, when you say things like that ". I continue with,"do you know how very much I love you"? She then answers with,"no, I know you love me ,but I do not understand what much means". I try to explain with a little surprise in my voice. Mom has difficulty understanding what the word "much" means.  I quickly move past this conversation .

No matter which way our conversations go, and no matter how much she is drifting away, I still hold on to how lucky I am. On most days we are still able to speak and laugh.  I cherish all our silly conversations and delight in the moments of joy that we still can share.  I have no idea how long my mom will be able to remember who I am, or my name, so today as always I am thankful for all that we still can share, as she seems to drift away.

RUTHIE'S ANGELS

As I begin my new post I want to share how much I admire and respect my mom's caregiver's. This is Elaine and Trudy(mother & daughter) who have been with my mom for the last several years. They are so caring and special.  I do not know how we would manage without them. Each day they arrive at Ruthie's house around 8AM and leave after they put her to sleep around 8PM . They are so kind and gentle to her.  I know how they have won mom over, and have touched her heart.

In the mornings they make sure that my mom is showered, dressed in clean clothes and prepare and give her three meals a day. They polish her nails, make sure she brushes her teeth, take her for haircuts, to doctors appointments and keep her company twelve hours a day. On most weekends and during the holidays they have her join them, at their own family gatherings.

When they first arrived my mom was a little feisty towards them, refusing to do some of the things they asked of her. Yet they always complimented  how nice she was to them. Today, although my mom can not express this to me, I know that she has so much trust and love for them. Sometimes when they arrive she is standing at the door waiting for them as she looks out her window.  It seems that they have become her lifeline.

This past weekend Elaine told me that they were taking my mom to a baby shower. "Great", I replied. When I spoke to mom she sounded quite sharp and aware. I could tell that this was a good day for her. "Mom I hear that you will be going to a baby shower". Mom quickly answered making a joke, saying that she had already taken a shower(which was true) and was not going to go. "Mom you should go you'll have a lovely time". With strong conviction she replied, that she did not feel like going, and that she'd rather stay home.

The next day I asked Trudy how the baby shower was, and with curiosity I wanted to know how did they ever get my mom out of her house. She confided in me, that to get my mom out of her house, what they will say to her is,"come Ruth follow us." Somehow, Ruthie seems to always follow. When she realizes that they are going in a car, instead of for a walk, she then asks if they will be coming back soon. Of course they say yes, and off they go. They do trick mom a little, although we are pleased that they are getting Ruthie out of her home.

After they were at the baby shower for several hours, my mom then quietly asked if they could leave and go back home . So they packed everything up and off they went . I'm sure that after a stimulating day, my mom had a great nights sleep.

My brother and I love that they not only take such wonderful care of mom, but that they bring her with them to birthday parties, fourth of July fireworks, Thanksgiving and Christmas celebrations, as well as their own family barbecue's.  In some strange ways, they seem to have adopted her, and she has become part of their family.

When I think about all the things that they do for my mom, and how they care for her with such kindness and understanding, that not only are they Ruthie's angels, they have also become mine. I wonder what would we ever do without them?

MY MAN I LOVED HIM SO

MY MAN I LOVED HIM SO


Today when I spoke to my mom I mentioned that it was my birthday in eight days.  When I questioned her about what day I was born, and how old I would be, mom then said that she had no recollection of any of it.  I whispered to her my age and with humor, she answered , "you're catching up to me".  I  giggled at her quick and witty response.

When I phoned mom and her caregiver Elaine, had just been watching a love story on the television . Elaine was so excited to she share with me what my mom had just finished saying.  Mom said to her that the movie was a beautiful love story. She continued to tell her that she lost her husband a long time ago (seventeen years to be exact) and how much she really missed him.  The next thing she said was that she'd do anything to have him back.

What my ears had just heard sent chills up and down my spine. Out of my sometimes fear ,to not cause my mom any unnecessary pain, I avoid bringing up my dad to her.  At times when I have, my mom usually says that she cannot remember him.

No matter how many times I have heard this from her, I still find it amazing that to be married for fifty years and to have shared a family and lifetime together that she cannot recall any of it.  How sad this truly is.

The saving grace for me, and of course my mom, is that I know deep in my heart, that whatever memories  she just had of my dad, are now long forgotten.  She could no longer feel any pain or sadness.

"Hi mom, I heard you just watched a movie that you liked a lot". Mom answered with "yes it was very good". What was it about"?  I inquired. I then heard my mom ask Elaine to please tell me what the movie was about, for she could not remember.

The feelings of her remembering my dad was all but washed away. Something like a passing rain shower or even more, a rainbow that quickly fades away.

Mom and dad were married in 1942, when she had just turned eighteen years old.  My dad was turning twenty one and soon to be shipping off with the Navy. They were married for fifty years, and now for my mom it seems to be a life that has been taken away.  I wonder how such a disease can destroy a lifetime of memories. 

Hopefully one day researchers in the medical field will be able to find a cure, so others will be able to hold onto the memories of their lives and all their loved ones.

So dad if mom could remember her most recent words, I'm sure she would say again, "my man I loved him so".

SHE REALLY MAKES ME SMILE

SHE REALLY MAKES ME SMILE

"Hi mom how are you"? "Lisa is that you"? "Yes mom it's your beautiful daughter calling her favorite mom to see how you are doing". "Lisa, when are you coming to see me"? "Mom( I fib) I'll be coming in four weeks". "Mom replied, "that's great because I really miss you".

I feel a pang in my heart because I know that I will not be returning to see my mom for several months.  I can get away with this white lie, because Ruthie has no recollection of what I just said, and even more when I lasted visited . Actually my mom, cannot remember anything anymore. "Mom, I live too far away and I was just at your home six weeks ago". "I really do not remember", she answers, "it feels like a very long time ago".

"Well mom you do have a special person coming to visit you today".  "Who"? she askes. "Your son Gil is coming to visit with his girlfriend". Mom tweets in with "Gil has a girlfriend"? Yes mom and we both met her when I visited six weeks ago. "What is his girlfriends name"? "Her name in Rochelle and she's very nice". I then mention to her that they will be coming with their two dogs. "Why"?  "Mom,because the dogs want to visit you also". "Please be careful that you do not step on them". We both find this quite funny and start to giggle.

"Mom would you like to come and visit me in New York"? "No not now", she replies, as she goes on to describe how she use to live here many years ago.  She remembers looking out the window and watching as things went by. "Well mom I remember you and I going to the museums, the theatre,the top of the Empire State Building, and taking the buses and subways all over". "Lisa, I did that?  I do not remember for it was so long ago". "I do mom, and I also remember how much you enjoyed yourself ".

Unfortuantely if she did these things earlier today, she still would not remember anything. This is what Alzheimer's has done to her. Her mind once filled with beautiful visions, has now become a blank canvas.  A lifetime of her memories all have disappeared.

"Mom, I love you ,I'll speak to you later".  "Okey dokey", she says and answers with," I love you even more".

I have just approached the Alzheimer's Association offices in the city.  I am here for a meeting to get involved with  a project to help spread awareness with them for September is Alzheimer's Month . We want to paint the town purple, and to spread our word for all to hear.

It's strange how I hung up with my mom, the very moment that I approached the entrance to their office's.  As I entered I has such a huge smile across my face and felt my heart filled with much love. I realized how almost everyday when I speak to my mom I am able to have these silly, touching and funny conversations with her. Conversations that at that time make little sense, yet they make us both really have fun and laugh aloud.  A laugh deep from our hearts and one that fills us with much pleasure and joy.

My mom probably forgets immediately what we just shared, yet for me I walk away with so much warmth as she  adds a big smile to my face. When my mom was free of this diseaese these light hearted fun converstaion did not exist. I was too busy wanting to get off the phone and now every time that I speak to her I hang up with feelings of so much love and happiness.

As strange as it sounds, there for me is much joy in whatever time we still have together, for this special lady, can really make me smile.

MOM WILL ALWAYS BE MY PRINCESS

 MOM WILL ALWAYS BE MY PRINCESS


On most days when I speak to my mom, we are unable to have any continuous conversations, so I find that I repeat many of the same things.  I'll share with her about my day and what I might have done the day before.  Thankfully we are still are able to laugh and have some fun.  I can always tell from her voice how perky she is, and if she will want to stay on the phone with me, or rush me off. When I see how she is, I can quickly decide if we should have our spelling bee, or perhaps sing some songs.  She usually enjoys engaging in either one.

For this I am still so fortunate.  When she does answer me with something that makes absolutely no sense, I answer as if it did.  You see I know as her disease progresses, that there will probably be a time, when my mom will no longer be able to speak.

Almost everyday when I do question her, she always has the very same answer.  She will say that she cannot remember anything as I always chirp in, "mom do you remember how much I love you"? "Of course I do".  Well mom, you see you do remember the important things".  Yet this week, she took me by surprise when she spoke these words, "isn't that strange, I cannot remember anything".  As if this was something brand new for her, that just took place.  My mom who has Alzheimer's, for at least eight years, has not been able to remember anything for quite some time now.

She seemed to quickly change the subject and said "there are days we feel good and day's that we don't feel so good". "Yes, mom that is certainly true".  As I tried to lighten the conversation, I then said "mom, are you a princess for the day"? Mom giggled and humorously replied  "if I find a prince then I can be the princess".  I smiled to myself, and thought how amazing it is, that in some ways she still can be so quick and sharp.


With all that is happening to her I never here her complain. I wonder at each moment, before she forgets what were her thoughts?  Does she realize what is happening to her?  Can she understand it all?  Probably not, although I do think that as she has these fleeting moments she does understand. This will always remain a mystery to me.  One that I will never know the answer to.


 In some ways the tables have turned, and although Ruthie is still and forever my mom, there are moments when I visit her, that she seems to be like a child.  So today and for always, my mom can and will remain for me, my one and only princess.


FACT- 5.4 Million Americans are living with Alzheimer's disease.

http://www.youtube.com/watch?

v=xeHTTonG6co&feature=player_
embedded
Wonderful 2 minute film. Please watch.

THE MOM I USE TO FIGHT WITH

THE MOM I USE TO FIGHT WITH (flashback 3 years ago)

Today on the phone my mom seemed upset( this occurred three years ago).  I think she was quite aware of the hard time she was starting to have since she suffers from Alzheimer’s.   As I described her personality to my husband, I mentioned how she sounded to me like the "old" mom.  I heard once again the harshness in her voice.   The sweet, kind and nurturing one that she has been showing had disappeared.  It was the mom I had always experienced while growing up, a part of her that I never liked. 

It was a part of her personality that at moments could show up in me.  This was where our personalities had clashed.  This was where we did not seem to get along.  This was part of her personality of being tough, and never letting anyone take advantage of her.  At times these aspects could also be a part of me.

Could it be that ,my mom who stood not quite 5 feet tall, did this to protect herself?  Or as I personally experienced myself, could something from her childhood have caused her to react this way?
Back to the present

This week after my mom and I had one of our many conversations, I hung up and wondered if  she would have been as sweet as she is today, would I have also been as loving as I now am to her .

Today and each day that I speak to her I tell her how very much I love her, and how special she is to me.  She always seems to thank me for what I just said . What would it have been like if I would have understood and loved her in the same way when I was a child?  Would my mom have been as sweet and gentle with me as she is now? Would we have had an entirely different relationship? Was it me or was it both of us?

Why did it take my mom's illness for her to be able show how very sweet she is, and for me to love her as deeply as I do.

Can you only imagine how I now feel, when my mom thanks me, for all the kind words that I shower upon her.  All that I am left to say is "mom if I didn't mean everything I just said, I would never say it".

I guess as the expression goes that it is never too late to fall in love, except this is not with a man this is with my own mother.  My mother who in her later years of life, as she suffers from Alzheimer's has been able to shine with all the love she has to give. This lady who I use to fight with no longer exists.

For me there appears to be some silver lining behind this awful disease. Maybe my mom has no recollection of her past, and at times can be confused, yet the one thing she never seems to forget is to show me  all her love. 

My heart has opened up for her with such love and joy, that I can now celebrate each day that we have left. Alzheimer's is a tragic disease, yet in some strange way, it has returned to me my mom, the one I now call my hero.

Together we all need to spread and raise awareness about Alzheimer's.

http://www.youtube.com/watch?v=xeHTTonG6co&feature=player_embedded

MOM IS MY SHINING STAR

 MOM IS MY SHINING STAR

She's only a pint size lady standing four feet nine inches tall, yet she has become to me a shining star in my life.  On most days when I phone her I feel such joy just to be able to speak to her. This week was a little of a downer for me, because I foolishly left my water faucet on in my bathroom.  Of course, I did not realize it.  Is it possible that I am also getting Alzheimer's ?  My building had shut off the water, as they do once a year, to clean the out water tanks.  I  had gone out for several hours and when I returned, I found a flood that has taken over a week to clean up.

I tried sharing this with my mom who didn't truly understand everything , although I must admit she did try to comfort me.  I felt so careless and stupid, that I really just wanted her to tell me that everything will be okay. I realized that it was no big deal, except I did carry  around with me a heaviness that lasted most of the week. Mom's wisdom was able to shine through, as she told me that as long as we have our health, that was all that was important.

When I phoned the next day, Elaine her cargiver said "your daughter Lisa is on the phone".  I heard my mom sound surprised that I was calling.  I asked her why she sounded surprised, and Ruthie's answer was," I hardly hear from you". I laughed and my response was, "Mom I call you everyday". Ruthie then replied, "I truly do not remember, but I still do love you".  I then answered, "I love you too". She then said "we have no contest about who loves each other more".  She continued with her words of wisdom, saying that the only thing that really matters is that we have our health .

Mom has been doing so well lately and I am starting to believe, that the coconut oil that she is given every morning by Elaine is working.  You see I have no other explanation for what seems to be stablizing her with her Alzheimer's disease.  She has no memory left, yet somehow she seems better.

Not only has she been so aware and sharp she has been also talking up a storm.  Since I have returned from visiting her (which is almost a month)  she continues to question me about when I will coming to see her . She now wants to know how long I will be staying. My answer is for one week, and her response is that it would be nice if I can stay longer. "Mom, I won't be able to stay longer, since I am coming with my husband, and he needs to get back to work".  She then tries to convince me that I should come first, and he can come later.  I make light of it by saying "are you asking me to move in with you" ?  As usual we both giggle.

My mom only has one grandson who she adores. I'm not sure how much she remembers, because she is always surprised about everything. I constantly tell her where he works, lives and how tall he is .  She still thinks that he is a young child.  I know that on most days she does not know his name, for she will question me about how my children are doing. "Mom, I say, I only have one child". Ruthie seems to be surprised.

Today I explained how this week the weather in New York has been irrational. That one day it's fifty degress and that the following day it's eighty degrees.  She immediately said "wow thirty degrees is a big difference".  I was delighted that she was able to figure that out, and so quickly.  It showed me for the moment that her mind had clarity.  

To me my mom is an amazing lady who adds much joy to my life.  It's so important to me while I can, to frolic in the joy she can bring.  I do not know where Alzheimer's will be taking her.  So for now our journey together will hopefully be filled with many bright days. I somehow consider myself  to be one of the lucky ones.  During these last several years my mom's disease has helped me get in touch with the deep love I have for her.

Smiles, laughter and joy can make anyone feel good.  It certainly can place a smile in your heart and one on your face.  My mom has become  my shining star.  We all seem to have choices in our lives, and for me, I choose to stay grateful for all that my mom has left, before she slips away.

SO SWEET AND TENDER

SO SWEET AND TENDER

Since my last visit my mom has been asking me almost everyday when I will be coming to see her.  The truth is that I will not be returning for at least three to four months. Yet I do not share these thoughts with her. This time when my mom asked when would I be coming, my answer was within a few weeks.  She replied, "what does a few weeks mean"?  I quickly answered her by saying I would be visiting in four weeks, although I knew this was not true.  She then whispered so sweet and tender, "that's good for four weeks is pretty soon".  Ruthie, my mom did like my answer, and I had no fear that she could remember and hold me to this time frame.

Of course there is some sadness that I did not tell her the truth, and even more that we live in different states.  How special it would be if I could see her at least once a week as my brother is able to do.

My mom said that she remembered that I was at her home, yet she could not say, when or for how many days I visited.  I knew from her caregivers that for the first week she walked around calling my name and looking for me.

We continued our phone call and I had Ruthie spelling from A-Z using countries, cities and states. I started off with Arizona, then Barcelona, Connecticut and onward. When I asked her to spell New York, and when I reached San Francisco, she started to sing the lyrics to "New York, New York" and " I Left My Heart in San Francisco". These songs have become familiar to most of us, like national anthems.

When mom did not understand my pronunciation of some words that I asked her to spell, she sharply told me to speak English.  She made me laugh and I did feel joyous for she sounded  aware and alert.  She was into our spelling game and scored a ninety five for her almost perfection.

If my mom did not have Alzheimer's, and she said what she said to me, I might have felt annoyed.  Although now it is quite different.  As far as I am concerned, my mom can do no wrong.  I just seem to appreciate and cherish every word that comes from her lips.

On this particular day she was as sharp as a tack and filled with much clarity.  I once again wondered if it's all the coconut oil that my brother has her caregivers give her each day.  He read an article about it and believed it might work, so he immediately bought it for her.  At this point I certainly do not mind the things he tries.  Some things might be worth trying.  No one really knows.

I ended our phone call with telling her how much I loved her and said, "mom I wish that I lived close to you".  Ruthie answered, "me too, and who knows maybe one day we will".  With a smile and a wish I whispered back to her "mom wouldn't that really be nice".

Her sweetness and tenderness have me miss her so. My mom's strength and courage has inspired me. She has become my hero.  My love and appreciation for who she is just amazing.  Alzheimer's may have stolen her memory, yet Alzheimer's cannot steal all the love I feel for her.

I also feel the love she has for me, and I am sure that she still can remember how very much I do love her.  Tomorrow when I awake, although I will not be able to see her, I will still be able to pick up my phone and hear her sweet and tender words.  For this I am quite grateful.

THE DISTANCE BETWEEN US

THE DISTANCE BETWEEN US

It's amazing to me that three days before my visit to see my mom, she asked me each time that I called, when would I be coming to visit.  I knew in my heart that embedded somewhere in her memory she knew that I was coming to see her. Mom and I for the last two weeks had been counting backwards, till I would be arriving at her home.  She sounded vibrant and filled with much aliveness and excitement.  Maybe I was imagining all of this, which did not matter, for I could feel it in my heart and soul the same joy, as I awaited for my plane to take off.

My visit to my mom's house several days before Mother's Day left me with different emotions. While I was with her I felt much love, mixed with some pain and frustration. Although on a very upbeat note my mom was doing wonderful.  At moments when she refused to brush her teeth or get dressed, I had to remind myself that her yelling at me, that she was not a child, was frustrating to both of us.  I laughed, I cried and the love I felt towards her touched me deeply.

I witnessed her as she danced and shared the same story over and over again with my dear friend Alana, who came to visit us. Mom was especially vibrant and Alana described her as " both beautiful and spunky," this being the first time they met.

The following morning when my mom awoke I was lying on the floor while I did my daily excercises. The day before my mom assisted me as I had her count to one hundred, as I performed a pilates movement.  Mom with much enthusiam that morning, was so excited to see me and immediately joined me and started to count to one hundred. As I layed on the towel, she then said, "seeing your face and having you here is both very comforting to me".  I melted as she spoke those words.  As I stood up to continue my routine she then asked "who is your mother"? With amazement I looked at her and said "mom, you are my mother and I love you deeply". Mom replied, "I love you also".  I then asked her my name, and after her calling me Lisa for two days, at least a thousand times she said" it's on the tip of my tongue, although at this second I cannot remember it". Mom, I said "my name is Lisa".

After my return to New York, I shared with my husband that my mom was filled with moments where she was so lucid, and then there were the other moments that seemed to come and go. Yet I felt quite grateful on how well she seemed to be doing. I guess I got lucky this trip because there have been other visits where my mom's Alzheimer's seemed to take control.

The next morning my mom sounded so excited to hear from me  and I shared that I missed her counting for me as I exercised.  Mom replied, "it's funny how you get use to doing something". "I guess so mom, although I really do miss you".  As our phone call came to an end, my mom did ask "when will I see you"? I think to myself that I just left, yet I answer with "I'll see you in a couple of weeks". Mom then utters the words, "that's great because you know that I love seeing you".

As of this moment it is not the fact that my mom has Alzheimer's that upsets me, it's that I live so far away and do not have the opportunity to go and see her each day. Could it be that I miss her so much because today is Mother's Day? No, I know the answer to that.  It is the fact that whatever day or time, the distance between us still remains the same.

DOES MY MOM WITH ALZHEIMER'S KNOW IT'S MOTHERS DAY ?

DOES MY MOM WITH ALZHEIMER'S KNOW IT'S MOTHERS DAY ?

I'll be off to see my mom on Wednesday for Mother's Day. My flight leaves New York early in the morning.  As I prepare myself for my trip I get flashes of all different memories and feelings. What will mom be like this time ? How much has her Alzheimer's caused her to disappear into her world ?  Speaking to my mom each day is quite different than living with her.  For the most part my conversations on the phone with my mom are great.  Then of course there are those other moments. So actually being and living with mom for several days is quite different.  My heart misses her and my stomach seems to churn both with excitement and nervousness.


During this week my emotions about my mother ran like a river with many inlets. Today's phone call left me feeling exhilarated, yet during the week after my mom had an episode of incontinence, I fell into an emotion of feeling quite sad and lost. Fortunately she was fine for the rest of the week, as her caregivers realized that they might have overloaded her with too much bran, since she had been constipated.


After that episode I was not able to shake the sadness that I seemed to carry with me for most of the day.  I had felt that my mom was no longer whole and had become half a person. How could this be and now where was my mother's journey from Alzheimer's going ? What would be happening next ? I did not understand, and for the rest of the day, I walked around in a haze, with a lump in my throat and a pain in my heart. Each day when I called I was frightful, until I was reassured that my mother was doing just fine.


Today, I had so much joy I wanted to run to a mountain top and spread the words that my mom had just shared with me. She had such a softness and nurturing kindness to her voice. We at first spoke about all the people who she could not remember since most of them had moved away. Mom said that maybe if she was able to see them, then perhaps she would remember them. "Mom, I declared, I hope since I live so far away that you never will forget me". My mom answered with "how could I ever forget you". Then she explained that the most important thing is that we are all well. She continued to say that there was nothing more important than being healthy.


I changed the subject and told her that I would be seeing her in five days as I was coming to celebrate Mother's Day with her. My mom seemed to remember that I had promised to take her for an ice cream sundae. With delight in my voice, and shock that she could remember this, I shouted to her "absolutely". As our phone call was coming to end, my mom then uttered the sound of these words, "do you love me like I love you"?  As my heart seemed to break in half, I answered with, "Mom, I love you even more than that". She then started to sing the words as we said our goodbyes.


With much love in my heart, I just wanted to place her last words to me and seal them in a bottle for me to open whenever I so desired to. I know that after we hung up, mom does not remember our conversation, nor does she even remember that I will be seeing her in five days. I know that she has no idea that it's Mother's Day. Yet I do, and for me my mom will always be that special mom, that for years before she became ill, I never even knew I had.

I would like to wish all the mom's, a very special Mother's Day.

NEW FACTS & FIGURES ON ALZHEIMER'S- 2012

The facts are astonishing. There is no cure and no prevention. Please help us spread awareness about Alzheimer's. We need your help.

Alzheimer's Disease Facts and Figures 2012

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‎5.4 million Americans are living with Alzheimer's disease. One in eight older Americans has Alzheimer's disease. Alzheimer's disease is the sixth-leading cau...

LITTLE THINGS CAN MEAN ALOT

LITTLE THINGS CAN MEAN ALOT

My mom grew up with a love of books . In the summers her parents took her to the country where she would spend hours reading under a tree. I remember as a child, how my mom delighted in sharing this experience with me. My mom loved words as much as she loved reading. One of her favorites books was "Gone with the Wind".

My mother was born in 1924 and in her teens there was no such thing as a televison. I think that her mind and love of reading made it possible for her to only imagine and see what it might have been like to travel the world. My mom always had a quest for learning something she took well into her aging years.

Today my husband and I were going to see a tour of the New York Public Library( 42nd St & 5th Ave.). It is a treasured New York City Landmark. Probably rated as the greatest library in the United States and ranked very high in the world. The collection of books and the beauty of this institue can take ones breath away.

Yet I, as a young child did not share my mom's love of literature. I excitedly shared with her about my planned trip to visit the library which she had very little response to. She did say "oh are you going to buy a book"? So somehow, my mom was able to connect the dots in what a library might be. Her love of literature, reading and words are all but now gone. Yet she still can spell and is actually pretty good at it.

Her disease has not only stolen from her most of memory, it has also stolen her love of reading. With macular degeneration and no concentration reading for my mom seems to be impossible.

I tried to lighten the conversation ,probably more for myself than her, and shared with her that maybe one day "our book"will appear on the shelves of the library. Mom answered with "maybe one day, one never knows".

I smiled to myself because somewhere as my mom slips away there always seems to be some shimmer of light as her words of reason still flow from her.

This may not seem like a miracle for most people, yet for someone who has had Alzheimer's for at least 7-8 years my mom seems to be holding on. Of course not in many ways, yet the ways that are left for me are stilll so dear to my heart.

Each day I get to love my mom some more and to share with her whatever we have left. Each day that I hear her say to her caregiver when I phone ," oh my daughter's on the phone" means more to me than words can really say. So to my mom who has become my best friend I will also say "little things can mean alot". Thanks mom, for who you are.