Sunday, August 20, 2017

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

Monday, August 7, 2017

THE LOVE OF TOUCHING


THE LOVE OF TOUCHING


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.

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

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

I 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.



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

Monday, July 10, 2017

MY BIRTHDAY WISHES



 
  MY BIRTHDAY WISHES

I will be celebrating my birthday on Wednesday 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.

Other blog postings My Mom My hero can also be found

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

Tuesday, June 13, 2017

ALZHIMER'S_THE RIGHT TO LIVE OR DIE!


ALZHEIMER'S- THE RIGHT TO LIVE OR DIE!

There have been moments when I feel somewhat lost about my deep feelings regarding my mother. Through these last 14 years as I witnessed her slipping away, I have also been able to remain thankful and cherish that she is still alive.

Since her illness I have fallen in love with her unconditionally. Several years ago we shared our laughter and acted so silly almost as if we were teenagers. Today as the disease progresses things with mom are quite different.

My love for her remains undeniable yet when someone in my Alzheimer's Support Group loses their parent my hopeful attitude fades away and these thoughts can certainly haunt me. Several weeks ago two members from my group suddenly lost their mothers. It made me wonder why those who joined the group after me, have lost their parents before me; each and every time I question why mom is still alive after having dementia for so many years

What kind of life can mom now possibly have? She exists, but does she really? Is this life worth living for 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.

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 educational classes. For many years now none of these things exist in 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? (Since I wrote this mom is now in a wheelchair although two aides from restorative therapy come and walk with her each day. They are trying to get her to walk . I have been told that she no longer has the strength nor energy since her illness this past January.)

If she could speak for herself or see herself through different eyes would she want to keep on living?  I believe deep in my heart I know her answer. The answer is what I truly would want for myself. Mom will turn 93 years old in August and there have been many years that have come and gone that she has no idea of her age, her life, her family, nor even her existence.

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 with dignity and that is what I so heartily wish for my mother.

Regardless of your beliefs I am certain that we can all agree that Alzheimer's is one of the cruelest diseases. It takes away ones entire world as if it never existed. It has no cure and the ending can be gruesome. So I ask you, should we have the right to choose if we live or die?



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

Friday, May 5, 2017

A LETTER TO MY MOM




MY LETTER TO MY MOM
(this picture is from December 2013 4 months after mom entered the Nursing Home.)


My Mom My Hero

Mom, as I sit down to write my letter I wonder how I can possibly start to share all my feelings with you. So much has changed since you developed Alzheimer’s over 14 years ago. As I gather my thoughts I realize that you will not be able to comprehend most of what I say.

As a teenager I loved you, yet somehow I wanted one of my friend’s mothers to be my mother. Then, after you became ill I fell so deeply in love with you. An unconditional love was born and since then you have inspired me each and every day.

I’m not really sure why my sentiments changed so drastically, I just know that I was given a second chance to feel a deep love and appreciation for you. As I reflect back through these years you have inspired me and have become my hero.
Your humor, your smiles, your sweetness through these difficult years have melted my heart.

Before entering the nursing home over four years ago, I spoke to you every single day. We ended each call throwing each other our kisses. I have continued to phone the nursing home only wanting to hear how you are doing. Earlier on you would take my calls and most of the time you say hello, and after a minute you just drop the phone. You did not even realize that I called or recognize the sound of my voice.

Mom, I am also a mother. My son, your only grandchild is 29 years old. You adored him and yet today you no longer remember who he is. There have been times that you think you have seven children and days when you think you have none. As a mother I cannot envision that one day I might also not know that I have a child. 

I find it hard to believe that a disease like this can wipe away your whole world as if it never existed, leaving your mind a blank canvas. Daddy passed away almost twenty five years ago and I do not believe that you have much recollection of him. I’m actually happy that he is no longer alive. I cannot imagine the pain he would have endured watching you fade away.

Today, in your world, I would have to help you brush your teeth, comb your hair, eat your food and get dressed. As a child you once did all of this for me, as well as comforting me when I was sick, or perhaps feeling a little blue.  Yet with everything that has changed, at least I know that we still have each other to share our love.

What has changed is that our roles have reversed. Now it is my turn to care for you as you once cared for me. The truth is mom that no matter whatever you can or cannot do, I am still your daughter and you will always be my mother.

Life is strange; for out of you becoming ill I have discovered a whole new world. I was given a second chance to love you unconditionally.  You have opened my heart to such a deep compassionate love. Mom as I end my letter, I just want to share with you, how very much I adore you. I feel honored and I am so proud that you are my mother.

 Your one and only daughter,


Monday, March 27, 2017

ROLLER COASTER RIDE


ROLLER COASTER RIDE

Since mom became quite ill during my visit in January I have been affected in many way. Just watching her disappear from Alzheimer's for the last fourteen years had been grueling enough. I had to accept that her world was climaxing and could end rather quickly.

Even though I have prepared myself, I realize that when the time comes I will be in mourning for the loss of my mother. She will become just another statistic and I will be parentless like so many others my age.

People often ask if I fear that I will get Alzheimer's. My answer is always the same. I do not fear it, although I am aware, when I cannot remember something as simple as an actor's name. Not only does my mother have Alzheimer's her younger brother also had it and passed away within a few years. I recognize that my chances are greater than someone else whose family has no history of this disease.

Amazingly enough mom's "world", if only, for the moment has changed. Changed in a way that I was not ready for, nor, maybe I didn't really wish to happen. She seems to have bounced back with a reborn energy. Her nurse reassured me that mom was once again back to "herself", feisty, eating well and maybe even better than before. My immediate reaction was feeling elated yet mixed with some sense of reality. I went so far as to fantasize that mom who is 92 years old might now live to 100.

My heart previously had been telling me that mom had given up. Once again she has proved me wrong! Or should I say knowing all too well, that this "rebirth" may only last for a day, month, or year until mom can no longer go on.

While I am on this whirlwind I cannot help but feel the bumps and curves as Alzheimer's continues to speed along its tracks. There are so many times I wish for this ride to come to an end.

Why am I not fully able to go with the flow? Am I not prepared for this roller coaster ride? I know that I am not being a pessimist. Could it be that I am just being a realist? How silly of me for how could I not want  mom to have "good "days. Of course I do. For some, this may seem like a miracle yet anyone who understands this disease knows that it cannot last.

In the world of dementia the patient does not get to win. There is no cure.



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

Sunday, March 5, 2017

THE FINAL CHAPTER



THE FINAL CHAPTER


For the last fourteen years I have witnessed my mother slowly disappearing from Alzheimer’s. With a heavy heart I go through the process of grieving and realize that through my writings I have begun to heal myself.
Is it possible for me to share all the feelings that are so deeply embedded within my soul?

This past January my husband and I were in Florida where mom resides (in a nursing home) to spend every day with her. In the past four years, each January, we witnessed mom transform day by day as she became more aware of the world around her.

I had realized that mom would not be like last year yet I could never have imagined that from a bad cold, her world and mine would shatter.

I mainly sat by her side, held her hand, stroked her face and told her how much I loved her. Mom has now entered into in the last stages of Alzheimer’s. How I wish that I could have her peacefully go to sleep; instead of what could take many months or years for her to say goodbye.
Her words are now seldom, her eyes mostly shut closed. Her walking around the nursing home has come to a halt for she no longer has the will nor energy to carry on.

She occasionally opens her eyes and, once in a while, she would smile. I was able to steal a few kisses yet even the sound of music that once delighted her, could not bring forth any signs of joy.
Witnessing her withdraw from the world was quite painful. As my thoughts surfaced I took to pen and paper to share my most inner deep feelings. My prayers were not answered as I had prayed for her to pass away. I knew that mom would never want to exist like this. I also wanted to take away the pain I was feeling, knowing that there could be no recovery.

I question why my mom got sick while I was here? Why couldn’t we have been able to share some special moments like we had done in previous years? Couldn’t she have waited to after I left? How silly of me to even think this way.  I know no one gets to choose when or where.



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

Wednesday, February 1, 2017

LOVE, LOVE, LOVE


This picture was taken about 6 years ago (mom had AD yet she was still at home). I wrote this blog post in December 2016(not that long ago). So much has changed with mom since then.

She caught a really bad cold and for over a month she now lays most of the time with her eyes shut. She appears to be "lifeless" except for a few moments that I was able to capture with her during my month long visit(January 2017).

Blog Post- Dec 2016

My brother called me the other day while he was visiting our mother at the nursing home. I unfortunately missed the call yet he left a message asking mom to say hello to me. Hearing her  say "Hi Lisa," immediately brought me back to a time when mom was whole. Her voice was filled with strength and definition.

Mom sounded as if she was free and clear of Alzheimer's. Her voice and tone was the mom that I always knew. I wondered how this could be. Is it possible that mom still has moments of being herself? At these times could she have a flashing thought wondering what is happening to her? A thought that disappears as quickly as it comes.

I will never know the answers and maybe it's better that way. My desire is only to protect her from  anything that can cause her heartache or pain. I wish to cuddle her in my arms, as if she were my own child and reassure her that everything will be okay.

I realize that what is left with mom is to try to enjoy whatever moments we have together. I want to sit with her, talk to her, touch her and hold her. I want to sing with her, laugh with her, and just be there for her. I want to show her and have her feel all the love I have for her; never questioning whether she knows if I am her daughter.

There are things that we can never get back yet I want to remember the things that I loved, and also the things she did that drove me crazy.  I want to remember her lectures to me, her humor, her support and all her imperfections. She was never perfect yet neither was I.

She is still my mom, and the journey that we have been on together for over fourteen years has at times been difficult yet, mostly, one filled with love.

I cannot take Alzheimer's from her and though it breaks my heart as I watch her disappear, it  has opened my heart to a place that I did not realize even existed. It has made me closer with her and has turned my love into one that is unconditional.



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