MEMORY CHAIRS

Alzheimer's Association, NYC Chapter

“This is such an intimate, personal way to really remember someone that was important to you,” said Lou-Ellen Barkan, president and chief executive officer of the Alzheimer’s Association, New York City Chapter, who has dedicated her own chair to her father, Joseph Greenberg, who passed away with Alzheimer's in 2001.

Read more: http://www.dnainfo.com/20110922/midtown/bryant-park-memory-chairs-honor-loved-ones-with-alzheimers#ixzz1Z4Pr8L4u

Bryant Park 'Memory Chairs' Honor Loved Ones With Alzheimer's - DNAinfo.com

www.dnainfo.com

Residents can now dedicate chairs in Bryant Park to honor those suffering with Alzheimer's disease.

LOVE & COMMITMENT

LOVE & COMMITMENT

I've been blogging for almost seven months now about my new found love and respect for my mother.
Within this time I have watched my mom loose most of her memory.  I have listened and observed her as she slowly slips away.

I am a long distant caregiver for my mom and get to visit her approximately every three months. Everyday when I phone her, I can tell within a few seconds how she is doing that day.  As of today, I am still one of the luckier ones, who has a parent with Alzheimer's disease, since my mom still knows my name. Someone might say why do you consider yourself lucky? My answer is that I cannot take this disease away from my mom, yet I can be thrilled that she seems to be quite happy and content on most given days. We have many converstaions filled with laughter and I enjoy her so very much..

Conversations? which sounds like a rather strange way to express how my mom and I converse. We really cannot have long lenghty conversations ,because my mom cannot remember anything that we just spoke about. Yet we can have fun and sing together on the telephone.  My mom makes up some of the words that neither she, nor I can remember. I like to make light of it, and tell her that we are like the blind leading the blind as we both giggle. Ruthie is also still able to spell quite well and I ask her to spell different words to help stimulate her memory. And most of all, my mom still knows who I am, and for this I feel so thankful and cherish every moment that we still have together.

In two and half weeks I will be taking a trip to Florida with my son to visit my mom and his grandmother.  I am so excited as of now and when the time gets closer I usually go through many different feelings about how she will be when we arrive.

I am now on a journey to see in my lifetime a cure or prevention for this horrifying disease. A disease that removes someone's life just like it never existed at all.  Along with all the joy that my mom can fortunately still give me, I know that her day will come, and I too will become affected in a totally different way.

Of course I'd remove Alzheimer's from my mom's soul if it was at all possible. Yet I now feel that my life has another purpose, and that is to do all that I can to make a difference to other children who have a parent with this disease. My life in a strange way feels that I have been honored that I can feel such a passion to want to be part of something much larger than me. This along with my love for my family has added a new purpose in my life.

Several weeks ago when I shared with my mom that I was going off to volunteer, my mom asked me where I was going. I watched as I was fearful to tell her that I was off to the Alzheimer offices.  Instead I mentioned that I was going to help the elderly and my mom's reply was how lovely that was.

September 22nd, the day after Alzheimer World Day I decided to tell my mom where I was really going. My mom went totally silent. Was it my imagination? Did she think of her younger brother who had died from Alzheimer's, or did she think of herself ?  Was she silent because she does not know what Alzheimer's is ? or because she knows she has it.

I've been asked by people, if my mom knows that she has Alzheimer's. I do not know the answer to that, and my question is does it really matter ? Would it make any difference? It will be interesting to hear what my brother might say, when I ask his opinion about this. To me she is my mom, the one that gave birth to me, who raised me, and no matter what her life has waiting for her,  I am totally committed to being there for my mom. My mom who has become my love, is also my hero.

Fact- 10 Million Baby Boomer will get Alzheimer's. 35 Million people now have dementia around the world.

                                                                                              

MEMORIES

MEMORIES

My mom one year ago still had glimpses of some memories, from years ago.  Most people are surprised by this, because they think that an Alzheimer patient can remember events from long ago.  Not my mom.  

I wonder if she stay’s lost in her world not to feel more pain or anger for what is happening to her?  She seems not to want to remember the painful hurtful memories.  She mentions that her parents are deceased and that her younger brother Alvin died.  Alvin had advanced Alzheimer’s.  He did not even know his own children, and towards the end he was wearing diapers.  When my mom would see him I remember her being so upset that he just sat there and stared into space not knowing her.  My mom had expressed how upset she was ,and that she did not want to see him anymore.  Her statement had bothered me.  How could my mom not want to see her baby brother?  Did she not understand what was happening to him?  At that time her own dementia was starting to affect her, and she was becoming out of touch with her own feelings.

My husband called while I was visiting (last year) and my mom answered the phone.  I heard her say “who is this” and he answered” its Bert” and mom then said” who do you want to speak to”?  Then she asked him his last name.  He said to his mother- in- law, who he has known for 30 years , since we have been married, ” my name is Bert Hirsch.”  My mom then says to me “Lisa, Bert Hirsch is on the telephone for you”.  Not knowing who he was.  Need I say more?

Update- This past Sunday I went with my husband to visit my mom’s brother’s son. My cousin Richard was my uncle’s only son, and my mom only had one brother.  Yet my mom could not remember who cousin Richard was, although she did say that his name sounded familiar.  Ruthie also had no memory of her brother passing away.  When I mentioned that he died, my mom went silent on the other side of the phone, and then when she caught her breath she muttered the words in a very soft tone, “my brother died?”  Yes mom he did and I looked in amazement, and wondered how this could also disappear from her memory.  Her one and only younger brother who she  protected and watched over as a child.

FACT- Alzheimer's is the 6th leading cause of death in the United States. It has no cure or prevention as of today. It is becoming a worldwide epidemic.

MY BROTHER GIL

 MY BROTHER GIL

My brother seems to be quite humorous with my mom and to enjoy her.  Each week when he visits her he puts her in front of the computer to watch, You Tube videos and has my mom sing to them.   He picks out many songs that have been in Broadway musicals for her to follow.  She loves hearing them, and swings her arms like an orchestra leader, or pretends to be playing the piano (which she use to play) while she sings along.  We grew up always hearing my dad sing these songs for he had a wonderful singing voice, and in his youth wanted to be a professional singer.  We were so fortunate to have him serenade us for so many years.  Several weeks ago when I spoke to my mom about how wonderful my dad’s voice was, my mom replied that she did not really remember it.  That for me was a little sad. They were married for 50 years.  How could mom not remember?

I wonder how my mom can be remembering these songs from watching the You Tube videos to sing to me, and yet she can so easily forget our names.  Seeing my brother with my mom brings warmth to my heart.  He is so kind and caring of her.  Gil lives about one hour from mom, and each week he comes to visit and take her out to lunch.

 I love to see their interaction together and I compliment Gil on how patient he is with our mom.  Gil say’s that he tries to be, although sometimes when she’s having a harder day it becomes more difficult to stay as calm.  My brother and I seem to be close now which also means a great deal to me.  Life can be rather strange, for out of my mom’s illness I have been able to “reclaim” my family.  I feel such love and warmth to them that I also, inside of me feel an inner peace.  Maybe out of this misfortune, the love and relationship that I now have with my mom and brother has opened new doors for me.  Can this also be some kind of strange blessing?

FAMILY ALBUM

My mom's younger brother past away several years ago from Alzheimer's disease.
My Uncle Alvin did not know who anyone was and my mom at the time became so upset when she saw him. Mom would say that he just sat there and said nothing and didn't know who anyone was.

My Cousin Richard called me several weeks ago to tell me that his wife had passed away. I tried to tell my mom that her brother's son called me and that he sent his love to her. My mom replied, " I kind of remember who he is I just cannot remember his face.

Her only brother's son has disappeared from my mom's memory.  Just like so many other family members and friends that have been swept away from her, like a storm that has hit our shores only to leave it's mark and damage behind. .

FAMILY ALBUM

Last summer while visiting my mom, my brother brings into the room old pictures that he found in a dresser draw for Logan and me to look at.  Logan has never seen these pictures and some of them I have not seen either, or at least I do not recall them.  Reminiscing and seeing how young we all looked, including me, left me with a feeling of sentimentality.  I saw pictures of my parents and their wedding and swore that it was not my mom.  Even showing it to her since this picture was big enough for her to see, she agreed that she never looked like that.  I saw pictures of my grandparents, aunts, uncles and cousins as young children.  Some of my cousins Logan knew and some he has never met.   We looked at pictures of my grandparents that he never had the opportunity to know. Logan is named after my mom’s father whose name was Louis, although he was called Louie.

My mom had much difficulty in seeing most of the pictures because of her macular degeneration.  While we were looking at the pictures my mom kept repeating that my dad died too young. She said how he held her hand so tight while he laid for seven months in the bed at the nursing home.  She told us that she told him not to worry that he would be okay, although she knew differently.  These memories came to her again, while we looked back at all the pictures of our family from a very long time ago.

 We all want to live to a ripe old age since the alternative we know is death.  Yet we don’t get to decide how our lives will end, or how long we will live to, or in what health conditions we may inherit.  I know that we all hope not to put our children through, what we may have experienced while our parents were reaching their end.  How many of us take our lives for granted not fully appreciating that each day is truly a gift?  I know that I do not always think that way and can certainly take my life for granted.  So for me and for you please enjoy, smile and I wish all of you a very special day.   

SEPTEMBER IS ALZHEIMER'S MONTH

SEPTEMBER IS ALZHEIMER'S MONTH

Today as I sit down to write my blog and share with you about my mom I feel rather sad and solem.
I feel the loss of all the lives that were taken ten years ago today, and how the whole world has changed because of this. Yet for my mom who has Alzheimer's her blessing today is that she has no memory of this day, or how the world has changed, so drastically since September 11, 2001. She cannot remember the planes hitting the World Trade Center, and how the terrorist have stormed the world since then.

Last week my mom sounded pretty good most days which kept me in an upbeat mood. The week before she had several days where she sounded down, no laughter came from her, even when I tried to make her smile.  Needless to say I felt somewhat helpless and also realized that I cannot expect her to be happy all the time. In reality, no one is. Yet when she sounds like that I just want to throw my arms around her and cuddle her and tell her that everything will be alright.

When she sounded so good last week and I spoke to Elaine with enthusiam about her sharpness and the cheefulness that had returned in her voice .  Elaine did repsond with that " it comes and goes."  I laugh and say "at least it sill comes" trying to keep our conversation light. This is what Alzheimer's is about. It is a strange disease that takes over you, and it also has moments where my mom can sound perfectly fine. Which at those times, I can forget that my mom has Alzheimer's for a few seconds.

I tell my mom that I will be coming to see her in exactly four weeks with her grandson. I then try to explain to Ruthie that I will also be coming back again with my husband in eight weeks after I see her.
My mom says "why wait, why not come now?" "Mom that's when my plane tickets are for. You'll be seeing me so much,that you'll probably get tired of seeing me." My mom answers with "bring both the boys and I can never see enough of you. Please don't worry about it. It can never be too much. Just come."

That was my mom on a good day. Such a feeling of comfort for me that my mom can understand at the moment all that I had said, and actually was able to embrace it. Wow, the warmth of a mom.

September is declared as Alzheimer month. For me everyday is Alzheimer month. We must find a cure, stay committed to spreading awareness around the world for Alzheimer's has no boundaries, no country and no nationality that it will not touch. We all need to be committed.

FACT- Every 69 seconds someone in the United States is diagnosed with Alzheimer's. This is definately a worldwide epidemic.

SPECIAL MOMENTS ONE YEAR AGO (Part 2)

PART 2-SPECIAL MOMENTS

Logan and I film my mom singing and dancing.  We ask her to spell some words for us, which she can do magnificently. Towards the end of the tape we ask her a few questions.  My mom puts on quite a show like you wound her up and said go, Ruthie go.   I find the brain so fascinating to see all that she can do, and all that she cannot remember.  We play it back to her on her TV and she is laughing and having so much fun watching it.  She keeps saying "look at her sing "not realizing that it is her. The film seems a little hard for my mom to follow.  I explain to my mom that it’s her, not really sure that she understands, because she has no memory of just being filmed.  

 It amazes me that at one second she may act like a lost child, and then there is the flip side of how sharp, feisty and quick humored she is.  When she is" in the be here now zone" it’s like my mom is whole and complete.  And when she’s not she seems so confused, bewildered and childlike.

 On Saturday night we take my mom out to dinner again. This time we will be celebrating her birthday which she repeats over and over that she was born on August 24^th, 1924 (although she does not know how old she is).  Both nights when we return in my brother’s car she is totally confused about where we are.  When I tell her that it is her home she replies that it is not.  My brother Gil says she’s confused because she is usually in bed by 6PM and it is now way past her bed time.  Before my brother arrived to take us out my mom kept asking  “who’s coming” and I  would say Gil.  My mom would then say “my boyfriend is coming” and I answer “no your son Gil.”  She then wonders  how Gil is related to her. "Hey mom, you’ve been singing over and over again ,  I’m Getting Married in the Morning.   I think you have posted boyfriend on your mind” and we both laugh.  I’ve also heard Ruthie think that Gil is her husband. This probably makes perfect sense since he is the only significant man in her life now.  One minute she’s confused and a second later she’s so aware that she tells me that my bra strap was showing.  I look at her with love and smile as she brings warmth to my heart.

 While in my brother Gil’s car for two days in a row, she is quite aware that my brother is driving and she keeps telling me not to speak to him so he can concentrate . Mom keeps shouting to him to drive with two hands.  She seems so aware and so much in the present as if she did not have Alzheimer's at all.

On our drive back to my mom’s house from the restaurant I tell my mom that Logan and I will be going back home tomorrow.  She asks "why "and asks me where my home is.  I tell her New York and she looks confused and says that she also lives in New York.  I explain to her that she use to live there and for the past twenty three year resides in Florida where all the palm trees grow.  I ask her to look outside the car window to see the palm trees.  She does, and says nothing.

I noticed in her kitchen that there are three green glasses lined up on her counter while several of the same glasses are in her kitchen cabinet.  I ask her if she would like me to put them away and she answers” no” and explains that she likes the way they look. This is something that she never would have left out before.  It is interesting how she has them displayed right next to each other in a straight line, reminding me of tin soldiers standing tall and erect.

I took my mom several times into her living room to get her away from her television. She use to like to watch the news , which she then traded for comedy shows .  Now my brother has told me she just has the sound on and doesn’t even bother to change the station.  Is it that she can’t remember what happens right after it happens? Can she not concentrate?  I’m not really sure.  I wonder if my mom wonders who she was.  Or is it who she has become?  What did she find funny or sad before?  Was she happy? All these memories that she had accumulated for so many years seems to have all vanished.  I wonder if she could recall only one thing what might it be.  Getting married?  The day she met my father?  Giving birth to my brother or me?  I guess she and I ,will never know.

While she looks out she sees the water behind her apartment and says what a beautiful view and how she loves the glistening of the sun off the ripples of the water.  She then starts to tell me about all the men that were flirting with her on the plane.  Recently on occasion she has mentioned men that flirt with her.  I wonder what this is all about, what meaning or significance it has to her since she repeats this frequently.  Anyway I listen happily to her stories, so glad she has some imagination to share.

My mom asks me if I miss Logan and I say “why would I miss him he’s still here” and we both laugh.  I take out my journal to write so I will not forget what she just said and my mom says” why are you writing so much”?  I reply "I’m writing about you" and she asks “why?  I’m just ordinary why write about me.”  No mom there is nothing ordinary about you. You are one super special lady. You are my mom and even more today and forever, my hero !

SPECIAL MOMENTS ONE YEAR AGO

SPECIAL MOMENTS ONE YEAR AGO

Our return trip from visiting my mom and brother, got Logan and I into Kennedy Airport around 10:30PM.  The next morning we would be attending my father in laws funeral.  He lived to 95 and up until one month before his death he entered a hospital.  He had a great life and died in his sleep never being ill.  He was a very lucky man, so for me it was hard to feel much loss or sadness.  We do not get to choose how or at what age we will die, and yet if we could, many of us would sign up immediately for his ending.  When I saw my husband’s family they all asked how my mom was which I then replied,” she is great considering that she has Alzheimer’s."  I shared with a lot of them that I was in the middle of writing a memoir about her and our relationship, and how inspiring she has become to me.

To start off with my mom really looked fabulous, thanks to her caregiver Elaine and now Trudy who is Elaine’s daughter.  Logan and I actually witnessed my mom getting feisty with Elaine when on Saturday morning Elaine tried to get my mom to take a shower. Ruthie refused and said to Elaine “do not treat me like a baby “and on Sunday when my mom awoke she told me that she would like to take a shower and wash her hair.  I assisted her in taking a shower, which she took by herself and then I helped dry her, combed her hair and helped her get dressed.  She seemed to be able to do most of this on her own, although she did get quite confused.  She most likely would not shower, if no one was around, for it would never cross her mind.  My mom actually claims that she does not get dirty so she does not need to take a shower.

On Friday evening which was a rather late night for her, around 10PM I asked her to please wash, brush her teeth and put on her nightshirt.  She insisted that she should sleep in the top she had been wearing all day with her bra still intact.  Mom also wanted to wear her green jade beaded necklace to bed.  She was confused with which toothbrush was hers and I found her toilets not flushed.  This left me feeling concerned since she could strangle herself in her sleep wearing beads to bed.  I called my brother who had recently left to go home and spoke to him on his cell phone, as he was driving back to his house (which is approximately one hour from my mom’s home.)  I said to my brother that mommy really needs to have more help, and asked him if he had any idea what she did while no one was with her during the hours she is all alone.  At that time my mom only had her caregiver in for 3 hours a day (we are now up to 6 hours a day.) My brother is in the midst of still trying to get some money from the VA, since my dad served his country in the Navy during WW 2.   This would be a big help to us, so we could get Elaine to be with my mom for more hours each day.

Saturday morning when my mom came out of her room she did ask me if the “boys” were still sleeping, meaning Logan (her grandson) and my brother.  I told her Gil went home last night and Logan was asleep.  She seemed a little confused about my brother leaving.  She reminded me how sweet Logan is and that she thinks he loves her.  "Yes mom he loves you a lot, and you will always be MOM to him."

After Logan awakes and my mom sees him, she starts to serenade us with several different songs, from The Rain in Spain (from My Fair Lady), Tomorrow, Tomorrow( from Annie), to I’m Getting Married in the Morning which she sang over and over again.  She was so cute and so happy.  Of course she also danced for us.  Since we have arrived mom takes songs and makes rhymes and poetry out of some of the words she can no longer remember. This is something new for her.  She then says" I made it up because I cannot remember all the words" and I reply ” sorry mom I cannot help you because I do not remember them either”.  We both laugh and with words of wisdom my mom says “that should be the worst trouble we ever have”.

I explained to Ruthie, that Logan and I were going to take moving pictures of her and interview her and she asked "why?"  I said so I can send it to Dr. Phil, Oprah or some other shows and perhaps they will put you on TV.  Mom said “why, I’m not that interesting or pretty” and I answer “yes you are,” and she started to serenade us again with different songs from West Side Story, Tonight, Tonight won’t be like any Night ,ending with I’m So Pretty.

I had also noticed that her finger nails were done once again in a bright orange, almost the color of day glow and I asked her if Elaine or Trudy did them and my mom replies” no.”  Mom then tells me that some lady came and did her nails and I do not say anything, knowing quite well who put polish on her nails.  Around her apartment are the signs my brother has made saying FLUSH TOILET, BRUSH TEETH, and a new one WEAR CLOTHES TOPS & BOTTOMS.  Her neighbor told Elaine that sometimes she walks out without any clothes on.  One day my brother said when he was there that she brought him into the bathroom to show him the sign saying FLUSH TOILET.  Gil said she laughed and said “look what someone put up.” Since she doesn’t always flush the toilet (now she never does) or brush her teeth I’m not sure how much any of these signs really help her, yet they hang proudly on her walls. 

I will be returning with my son Logan to see mom in exactly 4 ½ weeks. I know that a lot has changed with my mom for I hear it on our daily phone calls. Some days she seems so lost and sometimes she sneaks in just for me, a special day where my mom is still, in some ways, my mom, as she slips further and further away.

WALK TO END ALZHEIMER"S VIDEO

Wonderful New Video for Walk To End Alzheimer's.

http://youtu.be/5cXXGd3S0Eg