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

A DAUGHTERS DIARY-Part 2

 March 2020

For the last few days I have been shedding tears realizing that I will finally be saying my goodbyes to my mother. As I begin to write my "last" chapter I reflect on the journey that my mom and I have been on for the last 16 years. Then suddenly without notice it seems that the whole world shuts down.....the Coronavirus has arrived.

Second week in March:

I will be leaving in a week & have been locked out of visiting mom. At least I will be departing knowing that she was somewhat aware as I stroked her hair, kissed her and held her hand. In my heart I believe that we both could feel all the love that we have shared.

March 16th:
Coronavirus.... in some ways we are now prisoners ourselves. From no where the world now seems like it’s crashing down. While I am "stuck" in Florida I pray that my mom will find peace.

March 18th:
How does the saying go...I feel like a "man" without a country.  Haven’t been able to see my mom because of shutdown of NH. For a few days I actually forgot about her, so desperately trying to figure out my own life. I pray that my son, his wife and our precious grandson will be okay. Our family and close friends are persistent on us remaining in Florida,

Maybe mom will go to sleep while I am here. Funny for now I am locked in a "prison" like her. The one thing keeping me centered and not falling apart is that each day that I and my husband awake with no fever, I am grateful. How could I possibly ever cry, while the whole world is in the same terribly sad situation. 

March 21:

We were suppose to head back home to NY 2 days ago on March 19. Not sure how long we will be remaining here. It feels like life now stands still as the world waits to come out of their homes. To open their eyes to a whole new world, one that in some ways may feel the same, and in other ways will never look the same.

I of course have not been able to see my mom & I am sad that I probably never will. This week her weight dropped to 80.4 and I was told she is listless.

April 18th:

How I wish I could say my goodbyes. Honestly these last few weeks since I cannot see her I have not dwelled on what I could not do for her. Actually there were a few days as the world was collapsing that I did not even think of her .

My thoughts have been consumed with my husband, son, daughter in law and my precious 9 month old grandchild. I shared with my husband that there would be no one else in the world that I would rather be stranded on an island with.

Update July 2020:

I have been back home in NYC since May7th. I speak to the nursing home weekly. There have been several cases of Covid19, mostly from staff. Up until a few days ago they have successfully been able to keep the figures low. Now it seems like a get a call every few days with another one who has the virus.

Mom does not eat & yet has not lost any weight since I left. I've been told that she occasionally says of few jumbled words, shakes her head to answer, sleeps most of the day as her eyes remain closed. The head of nursing does not understand how she is still alive. Mom will be turning 96 August 24th. I have no idea when my mom will finally say goodbye, yet, what I am grateful for is that in her world she has no idea of what I and the rest of humanity are now living through.

P.S. A day or two before I was leaving I went to her window which was located on the second floor to say my goodbyes. There was a beautiful tree (photo above) that reached her window. It brought tears to my eyes as I remembered what my mother had shared with me. She told me that when she was a teenager in the summer she loved to sit under a tree for hours and read. It's amazing that this tree has been here all these years and I never discovered it. It has now become for me, my mom's tree.

As I now look back through the past 16 years on this journey with my mother I realize many things. I reflect on moments of sadness, yet I also remember even more all the loving special moments that we shared. Way to many to count. It took me until I became an adult to share a bond with my mom that only a mother & daughter could share.

P.S.S. Since my mom is in the last stages of Alzheimer's I did not want to bother anyone to bring her to the window. Yet I did phone a very special aide from outside the NH. As tears rolled down my cheeks, I asked her to please go give mom a kiss & tell her how much I love her. She promised she would as I wished her well and told her that I would come back some day to see her.

Be safe world and please let's all keep wearing our Masks!

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

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A DAUGHTER'S DIARY -Part 1

July 2020

Since the pandemic took over the world, life for all of us is quite different. This certainly includes caring for our loved ones. For me, my mom has Alzheimer's for the last 16 years and lives in a nursing home. She has been in the last stages for the last 3 years, yet somehow sadly enough she will not let go.

I live in New York and every year fortunately I have been able to spend a few months with mom. I arrived in Florida this year on Jan 14th planning to be there for nine weeks. My nine weeks turned into four months yet my visits to mom's nursing home abruptly ended on March 10th. Like many of us that have a loved one in a facility we are still not able to enter to see them.

What follows are my actual notes of when I first visited mom till Covid19 hit the United States.

First visit:
Mom spoke(non stop) gibberish with her eyes mostly closed as she also spoke about her mom. I wondered if I was her mom since she also said to me "I love you". After observing her on my first day I now questioned how anyone including myself can think that those with Alzheimer's are not suffering. I will never know the real answer since she cannot tell me. Yet as I observe her I believe that she is locked in a prison with 4 walls that she never can escape from. To me it is like a living hell.

The only saving grace is that she doesn’t realize what has happened and thankfully she appears not to be in physical pain. What I have witnessed through the years which is more deadly is a slow mental death. I believe that she’s aware just that any thoughts she may have disappear as quickly as they come.

Third visit:
Mom looks so sad. Her face appears to look like skeleton, her eyes are sunken in and red. Today her mouth seemed somewhat twisted. My brother several months ago had noticed it & we questioned if she had a minor stroke. I so deeply felt that she wanted to say something to me but was unable to speak. Her eyes as she looked at me with a blank stare told me she wanted to say something but was unable. I now feel certain that she knows it’s me.  I pray that she hears my words of love to her .

My best friend whose mom passed away years ago from Alzheimer's askes me how my visit went. My response is " I tried to distance myself from being emotional about my mom. There were times I looked at her and was heartbroken". I think that I am immune from the situation yet as the evening comes to a close I can't stop thinking of her.

Fourth visit:
I believe she hears my words so as I was saying goodbye I quietly whispered that it was okay for her to go to sleep. I whispered that I think she would be happier. With her blank stare she just looked at me with a face that appeared empty. One that cried out in silence for someone (me) to help her. Years ago after being in the facility she said to me “kill me” which at the time I thought she perhaps had just made a mistake with what she wanted to say.... now that I look back & think about it I believe that was exactly what she was asking.

End of first week:
I found through the years that many times after seeing mom I needed my own escape. Many days  I would take a walk on the beach and once a week go to a movie just to clear my head from thinking. This week I went to see "Little Woman".

While watching Jo says to sister Amy, "when did you become so wise”? Amy answers "maybe I always was but you were too busy noticing all my faults". This strikes a nerve and has me remember that years ago after explaining my early relationship with mom to a friend she answered, "maybe your mom was always like this but you never noticed". I leave the theatre feeling sad wondering how many years I might have wasted.

Week 2:
Today mom's eyes with a blank stare remain open. She shakes her head yes or no when you ask her a question. She holds my hand so tightly & if not mine, then her own. She moves her arms to wipe her eyes. Today she blows me a kiss. Her eyes continue to cry out in sorrow. She seems unable to speak yet her eyes say it all. I am so certain that she sees( although she has macular degeneration) & understands what I say. She knows I am here.

Week 3:
This is not fair. I see and can feel her pain. I see it within her face. Are the words that remain unspoken crying out to help her? Today her eyes remain open and her lips remain silent as if they are forever sealed .Each and every time that I come and visit my mom it never gets easier.

Week 4:
Saw mommy at 11AM(she's better in the mornings). Showed her a picture of her great grandson(sad because she can't see images) & tried to explain who he was. I believe that she understood for her eyes opened a little wider as I spoke & then suddenly she looked at me as if to say.....then she closed her eyes and slept for the rest of our visit.

Week 5:
As I leave now to go see my mom I feel sick and have numerous sad feelings. Feelings of I can’t keep doing this. My stomach churns, I feel nauseous & I have a headache. Maybe I have been in denial.

Seeing my husband's cousin earlier in the week he had asked how my mom was doing. I responded with how this year seems so much better. He so wisely said "not really you’re just getting use to it".  My answer..."I doubt that for it is something you never get use to."

A Day of Miracles (maybe?)
Today my husband and I accidently ran into moms doctor & the social worker from hospice. Mom has been stable since they have been giving her supplements (Ensure) which is against her wishes. We also find out that the doctor has her on Synthroid(for thyroid) and he claims that both of these are partially keeping her from declining.

We state her & our wishes to get her off of both. We win (hooray)doctors orders are given to remove both. Let’s see how long this lasts before NH doctor intervenes & reissues both. Director of Hospice says we need a symptom to remove mom from nursing facility. Praying that this will cause a symptom so mom can be moved to hospices own facility to fulfill her wishes. Only the next few weeks will tell.

I go to moms room and whisper in her ear that I am trying to make her wishes come true. With tears in my eyes I share that next week I will be leaving (March 19th)to go back to NY. Oh g-d how I wish that I could give mom the peace she so desperately wants and especially before I leave.

Next day:
Mom opened her eyes & threw me a kiss then her eyes shut closed. Before I leave each year almost as she senses it she does something unusual. I know for certain that every time that I come to see her she knows that it’s me.

For the last few days my tears are tears of what I believe will be my final goodbye to my mother.

Yesterday again my mom threw me two kisses. Another miracle.

Just received unexpected call from NH. They are on lockdown. Happened right after the tragedy in Washington State. No cases but no visitors to further notice. Sad because I was going to go starting tomorrow everyday to say my goodbyes; believing that next year she will not be alive & that I will never see her again. Just hung up w my brother crying.

 Part 2 to be continued …….next week.

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

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WILL THIS FINALLY BE GOODBYE ?

WILL THIS FINALLY BE GOODBYE ?

The above picture which I cherish was taken in 2012 in front of my mother's home. At that time mom already had Alzheimer's for several years yet she was becoming adorable like a young child. Since then so much has changed. I chose this picture, for the more recent photos are too upsetting to look at. I sure don't want to remember her the way she is now.

In less than four weeks I will be arriving in Florida for 9 weeks. As the date approaches feelings that I have buried throughout the year have been surfacing. I feel sad and helpless, because mom has been dying and there is absolutely nothing that I can do to help her.

The last fifteen years has been a journey filled with both happy and upsetting moments. Coming from a positive place I was fortunate to have been able to cherish and appreciate the good ones. For the last several years those days have disappeared and all that is left is an emptiness filled with frustration and sadness. This has turned into a very long goodbye

The other morning I started to cry as I thought of how fearful I was to see her as she is today. She hardly eats anything, sits slumped over in her chair as her eyes remain mostly closed. My family and the staff at the nursing home are all surprised that mom is still alive.


POEM

She's locked away in a place they call home.

She sits and stares at nothing.

She speaks and says nothing.

She is nowhere yet locked within her own 2 walls.

She reflects on no one yet they say she is still alive.

Is she? or is she not? What am I to believe? What am I to feel?

The pain I now endure for her, deeply tears me apart. I have survived this past year by blocking her from my thoughts.

Yet as the time comes close for me to return these fears resurface.

How can I return from this haunting depressing world or better yet how can I desert her?

She is my mother. She brought me into this world and now I only wish to say goodbye.

My heart pangs, my body feels weakened and my hands seem to tremble.

Death, although final is all that I sadly wish for.

Sleep will bring peace and comfort.

It will remove her from a life that disappeared many years ago.

It is all so painful as I try to say my final goodbyes.




"Letter To My Mom" & My Mom My Hero are both available on Amazon worldwide. Ebook, Audio, Paperback.
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WILL I CELEBRATE MOM'S BIRTHDAY?

WILL I CELEBRATE MOM"S BIRTHDAY?

My mom will be turning 95 years old on August 24th and I do not understand how or why she is still alive. She sits with her eyes shut closed, occasionally nodding her head, while weighing only 81 lbs.  I wonder is it that her constitution is so strong, or as the nurses say, "it's not yet g-ds will". I am not a religious person yet I if g-d has anything to do with this I find it terribly troubling that anyone in my mother’s state would still be alive.

This past winter after spending time with her for several months, my family and I were certain that she would pass away within a few months. We are now 5 months later, and it is heart wrenching  thinking of her nonexistence. I pray that she is not suffering.

Unfortunately, the nursing home, aware of moms no intake of food, has increased her daily supplement from one time a day to three times a day and also added an extra protein. This of course will not keep mom alive, yet it is slowing down her departure. After questioning the staff, we were told that by Florida state law they had to provide an oral nutrient as long as my mother would still take it. 

They might have felt this was humane yet we felt that it was quite inhumane, especially since my mother literally spelt out her wishes; stating that if she had an incurable brain disease that she did not want …..etc. It's tragic that I was able to be kinder to my dogs so they could have as little suffering as possible while reaching the end of their lives.

I have recently been invited to two birthday celebrations this year. One is a dear friend’s mother who just turned 90 and the others mother will be 100. I realize how fortunate they both are and if my mom were in their health, I would wish for her to live "forever". Unfortunately and sadly enough, this is not my mother's situation.

So, as my mother's birthday approaches I can celebrate the life she once had, yet I can no longer wish her a happy birthday.



"Letter To My Mom" & My Mom My Hero are both available on Amazon worldwide. Ebook, Audio, Paperback.
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CAN WE SAY GOODBYE ?

CAN WE SAY GOODBYE?

My mother was diagnosed with Alzheimer’s Disease at the age of 80. For the first several years of her illness, she was able to live at home with part-time caregivers. Approximately six years ago, her cognitive functioning deteriorated and we moved her into a nursing home. Fourteen years after her diagnosis, my mother who is now 94 except for her macular degeneration, is on no medication for any life-threatening conditions.

Several months ago, two members in my Alzheimer’s group suddenly lost their mothers, even though they joined the group after me. Every time this happened I questioned, why my mom was still alive after having dementia for so many years?

I know how that sounds. But please let me explain. When she was first diagnosed, even though we had had a strained relationship, I fell in love with her unconditionally. I devoted myself to managing her care and our relationship flourished. Any ambivalent feelings that I once had no longer seemed important and magically disappeared. We shared our laughter and acted so silly almost as if we were teenagers. But today, after 14 years with Alzheimer’s, things with mom are quite different.

What kind of life can mom now possibly have? She exists, but does she really? She no longer has any appreciation of any of the beautiful things that once surrounded her world. Memories of her husband and children are all but gone. For many years, she’s had no idea of her age, her life, her family, nor even her existence.

Mom use to love to go to museums, movies and theatre. She enjoyed her morning walks or strolling on the beach. She adored reading, had a great quest for knowledge and loved taking continuing education classes. For many years now, none of these things have been a part of her life.

Today she is confined to a wheelchair with her eyes mostly shut closed. She occasionally utters a few words that none of us understand. Every part of her existence is taken care of by the wonderful caring aides in her nursing home.

If she could speak or see herself through different eyes, would she want to keep on living? I believe deep in my heart that I know her answer. The answer is what I would want for myself. I believe that when someone’s quality of life disappears, decisions need to be made.

Regardless of your beliefs I am certain that we can all agree that Alzheimer’s is one of the cruelest diseases. It takes away one’s entire world as if it never existed. There is no cure and the ending can be gruesome. So, I ask you, should someone with Alzheimer’s have the right to choose to die? In several states with other diseases you do have that choice. One can decline treatment, but with Alzheimer’s there is no treatment and one can live for many years with no awareness nor quality of life.

Most of us choose not to speak about this yet it is something that as human beings should be our right. We should be able to make our own choice of how we live and when we should die. My choice has always been that I would die with dignity, through physician-assisted death if need be, in order to have some agency in the process. That is what I so heartily wish for my mother.

In two weeks I will be arriving in Florida where my mom is, and staying with her for eight weeks. I want to hold her hand and share with her how much I love her. I also want to let her know that it is okay for her to just "say goodbye".

"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

THINGS I NEVER WISH TO FORGET

THINGS I NEVER WISH TO FORGET

I get a warm fussy feeling inside as I look at the many pictures I have of my mother and family. They bring back so many memories of when we were all much younger. I remember each one vividly as if it was just yesterday. I find it difficult not to reflect on how quickly all of our lives go by.

Seeing certain photos brings back the years my mother and I had our ups and downs. Our relationship completely healed fourteen years ago after she became ill. Alzheimer's was the culprit yet because of it our relationship took on a whole new meaning. What transpired was this new undeniable, unconditional love I felt for her.

Sadly today, although mom is still alive, everything is so different. Her spirit has vanished as well as her memory. For a lady who was once whole, she is now withered away to almost little existence. She spends most of her waking hours sleeping and in the hours she is awake her world remains empty. Life, her family and the world no longer have meaning for her.

How I wish to turn back the clock for a few minutes and let my mind wander as I remember all the lovely things we once shared. The joy of my graduation in school, my marriage, the birth of my son, his graduation, his marriage and the list goes on. The trip we all took to DisneyWorld in Orlando after my dad passed away. I remember how mom loved to read and adored to travel.My parents went to Mexico, Israel and then Italy where they celebrated their 50th Anniversary. Mom loved going to museums, antiquing, theater & movies. One of my fondest memories as a child was going with my parents to visit the Statue of Liberty and Franklin D Roosevelts home in Hyde Park, N.Y.

I can still envision her smiles, her laughter and the simple little things that once gave
her pleasure. These were moments that I unfortunately just took for granted. I did not give her space  to be who she really was. Instead I focused on the negative things. I lost time not loving her for who she was. Fortunately, today my heart is only filled with deep love for her.

It's interesting for several years ago a close friend said to me that maybe my mom was always loving and I just did not see it. Now not only do I see it, I also cherish it. For these things; her smile, her warmth, her tears, her words of encouragement, her laughter are all things I pray I never will forget.

I love this little lady so deeply from the bottom of my heart!



"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

 

MISSING MOM SO

MISSING MOM SO (written on July 28, 2018)


Today, July 28th, twenty-three years ago my dad passed away which left me feeling somewhat blue. I wanted so badly to speak to my mother, yet I knew that was not possible. Instead I texted my brother, shared my sadness with my husband and opened my computer to write what I was feeling. What really hit home for me was although my mom is alive I still could not share any of my feelings with her. I realized that in many ways I was somehow now an orphan or a parentless child.

What you are about to read I wrote a few weeks ago which strangely enough is so similar to what I just shared regarding my father's passing.

As I stood in front of the mirror in my bathroom removing my eye makeup I had this overwhelming feeling of how much I really missed my mom. Strangely, I felt her presence there with me. As I reminisced in my head about my earlier years I realized how she was always there for me. I might not have always thought that yet, now as I look back, I am certain of all the supportive things she always said to me.

As a teenager I was the toughest critic of myself. My hair was too curly, I complained about my nose being too long and my eyes were not large and round like my fathers. I always thought he had piercing big blues eyes similar to one of my favorite actors, Paul Newman.

With each of my insecurities my mother always tried to help in building up my confidence and self- esteem. She would tell me how pretty I was and how she wished that she was tall and "stunning" like me. My blue eyes, she said, were more exotic as they were almond shaped. She spoke words that I was just not willing to hear.

Tonight, I missed my mother more. I missed her differently. I missed her love and the lessons she tried to instill in me. I missed how she was always there for me. I missed all the years that I wasted wanting someone else's mom to be mine.

Now it is too late for her to understand all the love and respect I feel for her. How I wish that I could now share with her who I am. I want to talk to her and tell her everything that has transpired in my life. Mom knew my husband and her one and only grandchild yet today she does not recall any of us. Sadly, her life has been taken away from her.

I speak as if my mother has gone to sleep and is no longer here. In many ways unfortunately this is true.The moments that I now wish to share with her have ended for Alzheimer's has conquered. It has taken away most of who she was and has invaded her very soul. So as I said before yes, my mom is still alive yet I question, is she?



"Letter To My Mom" & My Mom My Hero are both available on Amazon worldwide. Ebook, Audio, Paperback.
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MOM, IT'S MY BIRTHDAY

 MOM, IT'S MY BIRTHDAY

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

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

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

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

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

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

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

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

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


"Letter To My Mom" & My Mom My Hero are both available on Amazon worldwide. Ebook, Audio, Paperback.
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CAN ONE LIVE TOO LONG WITH ALZHIEMER'S?

CAN ONE LIVE TOO LONG WITH ALZHIEMER'S?

My mother was diagnosed with Alzheimer’s Disease at the age of 80. For the first several years of her illness, she was able to live at home with part-time caregivers. Approximately five years ago, her cognitive functioning deteriorated and we moved her into a nursing home. Fourteen years after her diagnosis, my mother is now 93(August turning 94) and except for her macular degeneration, she is on no medication for any life-threatening conditions.

Several weeks ago, two members in my Alzheimer’s group suddenly lost their mothers, even though they joined the group after me. Every time this happens I question, why my mom is still alive after having dementia for so many years?

I know how that sounds. But let me explain. When she was first diagnosed, even though we had had a strained relationship, I fell in love with her unconditionally. I devoted myself to managing her care and our relationship flourished. Any ambivalent feelings that I once had no longer seemed important and magically disappeared. We shared our laughter and acted so silly almost as if we were teenagers. But today, after 14 years with Alzheimer’s, things with mom are quite different.

What kind of life can mom now possibly have? She exists, but does she really? She no longer has any appreciation of any of the beautiful things that once surrounded her world. Memories of her husband and children are all but gone. For many years, she’s had no idea of her age, her life, her family, nor even her existence.

Mom use to love to go to museums, movies and theatre. She enjoyed her morning walks or strolling on the beach. She adored reading, had a great quest for knowledge and loved taking continuing education classes. For many years now, none of these things have been a part of her life.
Now, although she probably does not know the difference, she walks around sterile hallways passing others who are confined to wheelchairs and no longer speak. I have often said that she is the lucky one yet I now question..is she?

If she could speak or see herself through different eyes, would she want to keep on living? I believe deep in my heart that I know her answer. The answer is what I would want for myself. I believe that when someone’s quality of life disappears, decisions need to be made.

Regardless of your beliefs I am certain that we can all agree that Alzheimer’s is one of the cruelest diseases. It takes away one’s entire world as if it never existed. There is no cure and the ending can be gruesome. So, I ask you, should someone with Alzheimer’s have the right to choose to die? In several states with other diseases you do have that choice. One can decline treatment, but with Alzheimer’s there is no treatment and one can live for many years with no awareness nor quality of life.

Most of us choose not to speak about this yet it is something that as human beings should be our right. We should be able to make our own choice of how we live and when we should die. My choice has always been that I would die with dignity, through physician-assisted death if need be, in order to have some agency in the process. That is what I so heartily wish for my mother.
 

"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

 

                                

 

LONG DISTANCE CAREGIVING (INTERVIEW)

LONG DISTANCE CAREGIVING (INTERVIEW)

I was interview this week by Lori La Bey on Alzheimer's Speak about my relationship with my mother and being a long distance caregiver. I think you might find it to be quite interesting.(1 hour long)

Here is the link:  http://www.blogtalkradio.com/alzheimersspeaks/2018/06/12/long-distance-caregiving--the-struggles--gifts

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 fourteen years, Alzheimer's disease has been removing her use of language.

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 reside in New York while mom lives 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.


"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

BEING A LONG DISTANCE CAREGIVER

BEING A LONG DISTANCE CAREGIVER


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

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

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

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

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

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

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

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

Mom now has been in a nursing home for 5 ½ years and my brother and I know that it was the correct thing to do. I call often speaking to the nurses and always ask them to please go tell mom that her daughter Lisa called and send her love. I may only get to visit her every few months yet the staff knows that I take a very active interest in her well-being. Mom no longer knows where she is living yet my brother and I feel secure with the care that she is receiving.

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



My new book "Letter To My Mom". It is the continuation of my first book "My Mom My Hero" Available Worldwide on Amazon in Paperback & Kindle.
https://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=lisa+hirsch&rh=i%3Aaps%2Ck%3Alisa+hirsch

THE WARMTH OF TOUCH

THE WARMTH OF TOUCH


My mom has Alzheimer's for over fourteen years and as her disease progresses so does my emotions. I often feel I am on a rollercoaster swaying back and forth as it speeds around many curves shaking up my inner feelings.

This February like the past four years, I once again spent an entire month with my mother. As a long distance caregiver having the opportunity to see her more frequently brings out a more positive responses from her.

Now on most days we find her with eyes closed and very little expression on her face. The sound of music that once delighted her seems to have disappeared. One thing that is constant is that when I take her hand, even when she seems to be sleeping, she holds on tightly as if never wanting to let go.

On several occasions with eyes wide open we also found mom speaking nonstop. Although her speech is gibberish and difficult to understand it still lifted our spirits to hear her come alive. Yet amazingly enough mom said a few profound things such as "people should be happy".

I am always grateful that my wonderful supportive husband joins me. He is so loving to mom especially when I feel a loss for words. Magically he connects with her and finds the right things to say.

The head of nursing has confirmed that mom is in the last stages of the disease. I do not know when she will finally say goodbye, yet in my heart, I do not believe that it is in the near future.

I have shared many times before that this horrific disease also fascinates me. Sometimes I question if I am now in denial or just becoming immune and accepting the situation. The once praying for mom to go to sleep has vanished and a new "space" has opened up for me.

I now feel more serene and have a calmness that is freeing. No more torturing myself of what I wish to be. I know that when mom is ready or the disease has "won", that is when I will have to say my final goodbyes. So for now, I cherish and remember how tightly our hands intertwined never wanting to let go.





My new book "Letter To My Mom". It is the continuation of my first book "My Mom My Hero" Available Worldwide on Amazon in Paperback & Kindle.
https://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=lisa+hirsch&rh=i%3Aaps%2Ck%3Alisa+hirsch

I LOVE YOU MOM

 

I LOVE YOU MOM

 

"My Mom My Hero" & "Letter To My Mom"

 

 

https://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=lisa+hirsch&rh=i%3Aaps%2Ck%3Alisa+hirsch