MOM MY SWEETHEART

 MOM MY SWEETHEART

I hope everyone had a holiday filled with much love. For me, I've had my ups and my downs since returning from visiting my mom in the beginning of December. Although it was a good trip, it left me with some heaviness that I was unable to shake off. I remained with a strange feeling for over a week, one that was hard to explain. This feeling finally lifted, and once again I was able to smile at the sweet things my mom had said.

Mom was surprised that my son( her only grandson) was twenty five years old. She also questioned me on the age of my"other" child. I explained to her that I had only one child who is named after her father. She seemed to like that and although it did not flash any memories for her, she reminded me in a lighthearted voice that I was lucky that I had only one child.

I wondered today how many children mom would say she gave birth to. Some days it is two and other days none. Some days she knows my name and some days she questions who I am. One day she thought my name was Elaine, which is her caregivers name, and when I explained that she gave birth to me and also named me, she was as equally surprised.

At least finding out at that moment that I was her daughter, she enthusiastically declared,"oh that's why I  love you so much." Great, mom was finally able to get it ,if only for the moment. Yet each day that I call she is surprised that I am on the telephone, and she only wants to know when I will be coming to visit. Mom always invites me to stay for as long as I want, and at the same moment she declares how she loves when she sees me.

My stories are always different about when I will be arriving. First I would say I just left you, then I'd explain that I needed to get a plane ticket, so I would be coming in 3 months, and now I announce that I will there in a few weeks. With this last answer mom is pleasantly surprised and happy that it will only be a few weeks before I arrive. There is absolutely no harm in stretching the truth to her, as long as it brings joy to her and I can hear the delight in her voice.

On Christmas Day, I mentioned that she would be joining her caregivers family for Christmas, she said ,"Lisa, you should ask if you can come along." Then my wise lady said "it does not hurt to ask, you have nothing to loose either way."

Mom then went into a dialogue about her parents, saying that they were driving her crazy. With enthusiasm, I listened to each word for mom rarely speaks about her parents, and when she has, she is always filled with much love and respect for them. I do not recall her ever describing them this way. She said that they keep wanting her to move near them. With much expression she continues to tell me that since she told them "no", they finally have left her alone. Could mom be reversing her parents and me?

Mom only wanted me to tell her that I like her, not that I love her, because some people could get the wrong idea. Like, love it's all the same mom. Yet this lady not only have I learned to love her in such a deep meaningful way, I also genuinely like her. My mom, my sweetheart lights up my life each day, even when she mixes all these things up.

I'd like to take this opportunity to wish everyone a New Year's filled with love and understanding.

TRACES & GLIMPSES

TRACES & GLIMPSES

It has been five days since I returned from visiting my mom. Each day that I have spoken to her she has no recollection that I was ever there. That was until today. Mom did not exactly say that she had remembered I was just with her, yet I could tell from what she expressed that she was aware of it. I actually have gotten quite good at understanding what she is trying to say as she mixes up her words and syllables.

While I was with her she would get glimpses of a moment of her life. Then they would quickly disolve and disappear. Today mom wanted to know when I would be coming to visit, as she invited me to come and "sit" down with my husband. I was sure that there now were traces of our reunion together.

Directly after calling me Lisa , she then spoke these words, "what is your name?"  I was sure that she knew that she was speaking to me. I answered with "what is your daughter's name?" She sweetly responded with "Lisa." I then said "my name, is Lisa." "You have the same name as my daughter." Sure do mom I thought ,as I answered," I am your daughter."

She expressed that she could not wait to see me again, and reassured me that she would always make room for me. I gracefully thanked her and shared with her that she was a wonderful hostess. I got a quick giggle from her as we kissed and said our goodbyes.

When I first returned home I was feeling a touch of sadness, even though mom while we were with her was doing considerably well. I guess it's because I know deep in my heart that it will be several long months before I return, and each visit now brings me closer to the reality of her illness.

I cherish our intimate relationship and celebrate that she still knows who I am, yet I question and wonder what her world must be like. When she awakes what may her thoughts be, if any, and is there for her a feeling of security within the walls of her home. What kind of existence does she now have? Is she happy or sad?

Yes she still has moments when words and expressions of cleverness flow from her lips. Mom still holds on to a quick sense of humor, and when she is feeling up to it, loves to be serenaded and appreciates beautiful music.

Entwined in these deeper thoughts, my mind certainly can wander.  My saving grace for me, are my writings of our journey together. They have become my sanctuary as I travel this path with my mother. It's surely not an easy journey, yet I embrace with her and will continue to, for as long as we can. I hold on to our love for however long it may last. As minute as it is, mom fortunately still has some traces and glimpses of what once was. For this I must be grateful.

 

SWEET,LOVE & TENDERNESS

 SWEET, LOVE & TENDERNESS

Two days ago my husband and I returned from visiting my mother, and each morning when I have spoken to her she has no memory of our visit. As I reflect back on the five days that I spent with her, I can still feel the warmth of her smiles, laughter and joy as we held hands, embraced and told each other how much we loved one another.

Some moments I was her daughter, and other times I was her relative. Mom tried to explain that if she said she was my relative then she was "safe". I understood completely what she was saying and smiled at her cleverness.

When I first arrived in Florida and was on route to see her, I wiped away some tears as I felt at the same moment both excited and fearful. I had recently hung up the phone with her and she questioned me, what was my name. I had a feeling of uncertainty of how mom would be when we reached her.

As I entered her home mom was singing and her first words to me were "oh you came to visit me, I was not sure that you were coming." She repeated my name which seemed like every other second. The sound of hearing her saying my name was like an unchained melody that I just loved to hear. With such a sweet and delightful voice she was thrilled to tell us that "her family" was now with her.

Within the hour mom only wanted to get into her bed for she was feeling sleepy. She invited me to join her, and as I sat in a chair in her bedroom, she would not allow herself to slip into dreamland. Instead, she just wanted me to reassure her that I was still with her. I wonder if she was fearful that if she fell asleep, that when she awoke, I would no longer be with her. All she wanted to do was to keep speaking and have me reassure her that I was still with her. At this moment sleep for her seemed so far away.

Mom was feeling overly warm so I helped her remove her cardigan. With much affection our roles were now switched, as I became the mother, and she became my child. Mom did not know what room she was in, or what other rooms were beyond her doorway. As I described her home of twenty six years, she was confused and at moments asked of me to take her home. At this moment her world seemed to be slipping away. Night became day and day became night.

The following day felt like a miracle. It was truly a golden day. The sentiments that she shared with me from "do you love me like I love you?" and as we embraced she whispered in my ear "you're the best in the world,"which only broke my heart in two. It was moments like these that I just melted and my heart was filled with an eternal love.

A love so strong that all I could do was cry tears of happiness, as I now wondered how many years I wasted on not loving my mom completely. This for me truly was a special and warm enduring day that will forever remain embedded in my heart and soul .

The following day mom couldn't even find the light switch in her bathroom to turn off the light that she only seconds before had turned on. I watched the Alzheimer's come and go, for at some moments she could spell and her mind was quick and filled with a sharpness as she shared her thoughts with us. Then there were the other times that she was mixed up with her vocabulary and thinking, and I knew that it was not my mom speaking, it was the disease.

 What else can I say other than that I find my mom to be so courageous. She is filled with a spirit that Alzheimer's has not yet been able to rob from her. I do at moments wonder what is left of her life. A life that has truly disappeared and  a world that she once lived in that no longer exists. Yet for me, I must celebrate the special part that we can still share.

This part of her world is the one where she still knows me and is able to express all her love for me. It is a world diminshed yet for me a world that I will never forget. I only want to imagine a world one day without Alzheimer's. A world free of this horrific disease.
 

HEALTHY,WEALTHY & WISE

 

HEALTHY,WEALTHY & WISE

I was not planning to write a post this week because I will be on a plane going to see my mom. Yet I found that several conversation's that she and I shared, left me with many different emotions. One day it put a big smile on my face, and the next day I was left feeling rather crushed .

Day 1-  I heard mom's caregiver say to her, "Lisa ,your daughter is on the phone." With surprise in mom's voice I heard her say "my daughter?" As if she never hears from me , yet every morning at the same time I phone her to say hello.

Mom gets on the phone with "hi sweetie." "Hi mom, guess what is happening in 5 days?" Ruthie answers with,"I don't know." " I am coming to visit you." I then hear her say,"How old are you?"  "I am exactly 25 years younger then you." "Well, I do not know how old I am."

"Mom would you like to guess?" Mom vibrantly expresses her feelings saying "I do not care how old I am, as long as I'm Healthy, Wealthy & Wise." I delightfully answer,  "mom you are certainly all those things," as I can envision her beaming face.

She then wonders if I will be keeping my name. "Of course mom, I really like the name you gave me, why wouldn't I keep it ?" I could hear in her voice that at this moment, she did not even know that she had a child , no less named me. " What is your name?" "My name is Lisa," and with that mom burst out laughing. I wonder what is so funny as she remarks,"nothing," and continues to explain to me that she has a problem trying to remember names.

Next question to me is,"where do I live?" "I live in New York." She continues to tell me that she likes me, and all I really want to know from her, is "do you love me?" "Of course I love you." as she hangs up the phone.

Since I will be visiting in less then a week, I ask mom how many days there are in a week. I received three different answers depending on which day I asked ;16 days, 10 days and once she had a lucky guess of 7 days. Or maybe her memory was working at that moment.

Day 2- When Ruthie got on the phone I wondered if she knew who I was, so I presented the question to her. With an uncertainty in her voice she responded with " are you my mother? my friend?my relative? do I even know you?" As my heart sank I answered,"yes mom you know me. I am your daughter."

She quickly apologized, that if she does not sound good at moments, it's because of her memory, and that she'd like me to know that she loves me. As she spoke those words I felt like I would melt, while at the same time I was feeling like my heart could break in two.

How can this be, how can my mom not remember me? How can Alzheimer's rob her of what was once her world ? I could never imagine not knowing who my son was. The thought of not knowing Logan one day truly terrifies me.

I know that mom is starting to loose more of her memory, yet she has also been doing very well for several weeks. She sounds good and in such a strange way she is quite aware. I do have to admit that her answers at moments would frighten or upset some people, yet for me I try to appreciate and be thankful for what we still can share.

I will not allow Alzheimer's to destroy the love, bond and relationship that my mom and I now have. Yes, my mom is different today, yet she still is my mother. I feel so much love,admiration and affection for her, like my cup can surely "runneth" over.

BEING GRATEFUL

BEING GRATEFUL

This was probably the third to last trip when mom was still able to come and visit us in New York. It seems like yesterday or maybe more like many moons ago. We all seem quite happy in this picture, although I know that back then mom and I certainly had our moments of not getting along. We would quibble over silly little things. That was then and this is now.

Today mom is my hero and my love for her is indescribable. She can really light up my life with her sounds of joy and laughter, that resonates from her. Since we just celebrated Thanksgiving I feel that it is a great time to reflect. Reflect on all that we have and all that we should be grateful for.

I do remember mom coming to spend Thanksgiving with us probably six years ago, and for a lady who is always chilled to the bone, she packed summer clothes as she traveled to New York during the winter. I was shocked and could not understand why she did not bring any of her heavier clothes nor a sweater or two. What was she thinking? As I now look back, I see that I was certainly in denial. Did I think something was wrong with my mom? Did I question why would she pack that way? Not really, I just thought that it was strange.

After mom became ill with Alzheimer's there was a major shift in our relationship, and all that I was left with was the declaration of my love for her . Ruthie had no idea that anything had changed. Yet for me I was able to love and appreciate the mom that I was never sure I had.

It is now a little more than a week until I will be visiting her. I am feeling so excited and I am also feeling a bit uneasy. Just today she was surprised that I was married and especially for thirty years. Mom declared that I was too young to be married. I do like the" young" part. Nor was she able to celebrate that her grandson had just turned twenty five. One day she was surprised that she had a grandson, and the next day she requested that I buy him a "nice" gift from her.

When I wished her a wonderful Thanksgiving and told her that she would be feasting on turkey ,stuffing and yams, she did not sound overjoyed. Thanksgiving was always a holiday that she loved to celebrate with her family. Yet when she saw the Thanksgiving parade on the television, she did say to Elaine her caregiver, that she remembered seeing it many years ago.

When I wanted to know if she had a nice day the day before, her answer was "I guess so , I don't even remember it but I'm sure that it was nice." When Trudy, Elaine's daughter, told mom to speak to Lisa when I phoned, mom wanted to know who Lisa was. I'm not certain of how mom will be when I do arrive, although she has been blessed with several exceptional weeks.

Regardless of what she might know or understand at any given  moment, I am certain that even my mom would say that she is grateful for everything that she has. She would delight in having children, a grandchild, and she would be sure to tell me that we were all so fortunate to have our health.

Mom did bring me up to appreciate all that I had. She encouraged me to be whatever I dreamed of and to celebrate being alive. As a child and teenager I did not fully appreciate everything that I was or what I had, yet from both my parents encouragement, I have fortunately grown up to be grateful, and have learned to appreciate all that I have.

So mom I like to toast you and your life, and share with you how grateful I am that you are my mother. With all the love in my heart that I now feel for you, you have inspired me with your strength and courage, and because of you I can celebrate being grateful.

I would love to take this moment and wish everyone a truly wonderful Thanksgiving and hope that we can all be thankful for what we have.


 

DO I LIVE IN FLORIDA OR NEW YORK ?

DO I LIVE IN FLORIDA OR NEW YORK?

I'm thrilled that mom still is able to be aware of where she was born and where she once lived. On some days she is confused with which state is the correct one. Sometimes she is so confident that she resides in New York, and at other times she is aware that she now lives in Florida.

The confusion occurs on most days when she asks me when I am coming to visit. It is now seventeen days till my husband and I will arrive at mom's doorstep. She always want to know why I cannot come sooner. My answers are always the same. So at those moments when she questions my timetable, it is also when she might insist that she lives in New York. She wonders how long it will take for me to come over. My answer is that it depends on how I travel ; "by plane 3 1/2 hours and driving at least 2 days." "Wow," mom says, as if she understands.

I shared with her that my husband will be joining me on my visit. Mom really let out quite a chuckle, and when I questioned what was so funny, she responded that she didn't know, except that she found it rather funny. It didn't matter just hearing the sounds of her laughter thrilled me.

 Before ending our daily phone call I requested from her to throw me my precious kisses. I shared that when I arrived, I would be able to place my "real" kisses right on her cheek. "Great", mom exploded with enthusiasm ,"I can hardly wait."

As we practice her counting abilities, I have been using the days till I arrive as a game. In the beginning of the week when I said that I would be coming in 3 weeks; and explained there are seven days in a week, she quickly said 7 x 3 is twenty one. It was astonishing to me that she was able to do the mathematics in her head and so quickly. So why can she spell, count and add numbers, yet she cannot remember what she did seconds before, or what she just ate?

I have noticed that as my trip gets closer that I have been feeling a bit more sentimental as we speak
about our love for one another. As mom has expressed to me how much she misses me and really does love me, I get teary eyed, as I return all my love to her.  I'm not sure why I feel this way, except I realized how very much I do miss her.

 I wish that we lived closer to one another, and wish that I could use a magic wand, and have her Alzheimer's simply disappear. I know this is not reality, yet I sure can dream.  It's amazing how the words of love that we now can share, were hardly present before she became ill.

Living in two different states, one in New York and one in Florida, may keep us apart, yet our closeness and intimate love, I know will always remain close to both of our hearts.

IT'S A REALLY GOOD DAY

IT'S A REALLY GOOD DAY

I found myself intrigued this week with my phone calls to my mom. They were filled with much affection and some bursts of laughter . They were also lighthearted, as well as sentimental, except for  the one day which mom had a "substitute"caregiver.

Elaine and Trudy had something special to do for a day, and they could not bring my mom along as they usually do. They replaced themselves with a family friend. She seemed to be quite kind, caring and attentive to mom. Yet if mom could share what she was thinking, I think it would be a little different ; she seemed baffled and confused. Maybe in some ways she also felt abandoned, although she said nothing.

Mom was quite sharp, somewhat feisty and filled with lots of energy. Yet as we spoke she also sounded a little annoyed at the situation. Somehow we got into the conversation about her children and how many she gave birth to. She insisted that she had many. I questioned her on" how many is many?" Her reply was " too many to count."  "Okay mom, how many children did you want?" She replied "none."" I then asked if she had a choice on sexes, what would she have wanted. She quickly answered,"boys and girls, one of each." That was good because that is exactly what mom did have."Well mom how many girls do you have ?" "One." My final question on this subject was, "and how many boy's do you have?" and she answered "ten."

I really could not stop laughing for she was as serious as could be. If mom sounded delusional, I'm certain that this conversation would have greatly upset me .Yet not this day, for mom did not sound lost or confused. She sounded rather strong and filled with conviction. I guess I could say like my "old" mom.

The following day when Trudy returned in the morning, mom greeted her at her front door, by giving her a big hello and saying how nice it was to see her. I'm sure that mom was once again feeling safe and secure, for when I spoke to her, she told me that she was feeling" very good ." "That's great for I am feeling the same." Mom then said "if you're feeling good, and I'm feeling good, then it's a really good day."

As she brought a smile to my face and warmed my heart, I knew that once again, mom could hear the sound of birds singing. I could tell that she felt a sense of security, and the affection from her caregivers.

My brother and and I are so fortunate to have such wonderful caregivers,who take such special care of Ruthie. I do not know what we would do without them. They have become her lifelines.

For all the families that have a parent,spouse or grandparent with Alzheimer's, we all in one way or another become their caregivers. This is not an easy thing to be, and at moments are hearts can feel broken. Hopefully at other times, we can find some happiness in what we have left to share with them.

This for me is how I choose to live. I cherish the time that I still have left to share with her. If I once again quote my mom, she would say "that today for her was a REALLY good day."

I am adding onto my blog post a conversation my brother had with mom the day after election day. It is so precious, and I hope that it will put a big smile on you face as it did for me.

Wed am
G: Mom, we elected a president last nite

Mom: A president?

G: Yes

M: Who? Roosevelt?

G: no mom, not Roosevelt

M: who

G: Barack Obama

M: Barack Obama? What kind of crazy name is that?. I never heard of him.
Write it down for me so I can remember it

G: OK Mom, have a great day

WHEN ARE YOU COMING TO VISIT ?

WHEN ARE YOU COMING TO VISIT ?

Needless to say that this week because of Hurricane Sandy parts of New York and New Jersey have been devasted. Many people have no power, the city lost it's mass transit and the airports have been closed. Some homes have gone up in flames and the coastlines have been sadly ripped to pieces.  Myself and my family thankfully, are safe and sound.

I tried to share all these events that were happening with my mother. When I spoke to her about Coney Island(located in Brooklyn, NY) and questioned if she remembered it, mom's answer was "of course I remember Coney Island, that is where I grew up." She then delightfully sang a song about the boardwalks of Atlantic City. The next time I tried to to share with her about the subways, the buses and the airports, she nonchalantly said she was getting off the phone, as if nothing had else mattered.

Mom has her days where right after we says hello, she immediately then says goodbye.This was one of those days. I'm not sure why she does this, and there are the other moments she enjoys our girlish chit-chats.

It's not that mom does not care ,and especially about her own home town, it's because of Alzheimer's, that nothing I said had registered. Honestly, although mom can spell the word hurricane, I am sure that she has no idea of what a hurricane is.

Mom only wanted to know when I would be coming to visit. That was all she seemed to care about. I excitedly said in 4 1/2 weeks, and continued with how lucky I was that I did not have my plane ticket for this week. Again she did not understand. She responded by saying, "why not, you can come anytime you like, the sooner the better." "No mom the airplanes are not flying where I live." She repeated how she wanted me to get on some other plane. I probably should have just said I would try, since I understand that she will never remember.

My husband will be joining me on my visit to see mom. The picture above is from last December when we were at her home in Florida. That week was especially difficult for she was not able to understand most anything we said and she was quite confused. Mom's wires were disconnected.
The last several weeks she has been having some rather good days. Hopefully when we arrive she will still be "with it."

When I visit mom it is quite different then when we speak on the phone. Seeing her in person can be  stressful and heartbreaking. I get to see all the ways that she has no idea what to do, like brushing her teeth,combing her hair and flushing a toilet. She gets confused about where her bathroom or bedroom is located, in a home that she has lived in for over twenty five years.  This makes her illness so much more real for me, and puts a different perspective on things.

The other parts of spending time with mom are very special. The moments we have together of just holding  hands, laughing, helping her dress, and making her lunch, are special times that I get to take care of her, as she once did for me. I for a short period of time become her lifeline. In many ways our rolls have reversed ,and that's okay because embedded in my heart ,she is and will always be my mother.

As our daily phone calls come to an end I still can count on her to say, "when are you coming to visit?" Today and always I will cherish those words.

IMAGINE- A WORLD WITHOUT ALZHEIMER'S

IMAGINE- A WORLD WITHOUT ALZHEIMER'S

Last Sunday I walked with my husband, my son and his girlfriend, as we joined 5000 other people in New York City, in the Walk to End Alzheimer's. As I approached the park my eyes seemed to swell, thinking about my mother.

 I called her to say hello, and share with her, that I was walking in a park on a beautiful sunny day. I feared saying to her, that I was walking for Alzheimer's.  I do not know if my mom  knows what Alzheimer's is, or even that she has this disease, yet I could not bring myself to say the word. Regardless, mom was able to tell me in a cheerful voice to enjoy my walk, the park, as well as the rest of my day. As I hung up, I smiled thinking that she had just sounded like a woman, who did not have this disease.

 She has been sounding remarkably good on our daily phone calls . The things that she has recently said, sounds as if she is at the moment reconnected . Instead of her saying that she cannot remember anything ,she has been expressing it so differently to me. She asked if I could remember what I just shared with her. She seemed to be defending herself, by stating that it was a very long time ago for her to be able to remember. When we spoke of other things she announced, that she just got a "mental block, or that it's right there on the tip of her tongue."

She seems to be reawakening. I heard her tell her caregiver Elaine, that she needed to loose some weight, since it was not good to be overweight. Elaine and I were intrigued by what she said just said. We were happy that she was aware and able to observe all of this. Just saying something as simple as this, brought smiles to our faces, as we giggled about what Ruthie had just expressed.

When I mentioned to her that my doctor's office measured me, and that my height now was, 5'3 1/2'' and I had shrunken from 5'4", she laughed and quickly said," don't be upset, you lost only a 1/2"." Her quick response left me with another smile and feeling lighthearted.

 I found it interesting how she has reversed what I had said . Was she trying to transfer not remembering to me, as if it was a normal act in her life ? Can she be aware enough at this moment, to question me in reverse, as if to transfer her own feelings? All of this has left me wondering what could possibly be going on in her mind .

I guess I will never have an answer to this, and it will not make any difference.  For me I want to take a few moments and try to "Imagine A World Without Alzheimer's." A world free of this dreadful disease. A world where our loved one's lives, cannot be stolen from them, as if they never existed.

 Please join me in spreading awareness about Alzheimer's, so one day the world may be free of this horrific disease.

MOM REALLY MELTS MY HEART

MOM  REALLY MELTS MY HEART

 Mom and I now continuously say to each other how much we love one another. It was not always like this.  It makes me wonder, why when I was growing up, did I not feel all this love and warmth from her? Nor did I return it. I was certainly daddy's little girl.

 I am not saying that I did not know she loved me, what I am saying is the warmth and nurturing that I felt as a child was coming from my dad, not my mom. Was it me? Was it her? Or was it both of us? My dad showed me lots of love, and showered me with much affection. Could my mom had been in a crazy way, jealous of our loving relationship? This I will never know or understand, and it no longer has any significance to me.

Today, and since my mom has Alzheimer's, the love we share is for me unspeakable. My mom had a really good week which left us with some amazing conversations. Every phone call ,left her asking me when I would be coming to see her. Mom would reply that we have a really good relationship and the truth was and I quote her," because she loved me more than anything in the world." She so sweetly, added in that I was the best in the world, and the greatest there is.

All these words of affection and love  melted my heart . It was all so magical, words that I can never forget. Alzheimer's has left her with no memory, yet when she still is present, she constantly shares all her love with me. Could she be making up for all the years that this was not shared ?  Maybe, and certainly, yes for me.

Are we like a mirror reflecting back and forth to each other our images of love? The simple things in life that I might have once taken for granted, now shine through . The words we speak each day, unless mom is having a bad day are filled with the brightest of sunshine. Her laugh, her smiles, her kisses now are everything to me.

 At the end of each phone call, I always ask her to throw me kisses.  I have shared with her that without her kisses my day would not be complete. As our last phone call came to an end, she said " if you want your kisses, then why don't you come over, and I'll give you real kisses." I smiled to myself knowing that I would be seeing her in six weeks, and for today she was having an exceptionally good day.

I hold so dear to my heart all our bright days, never knowing when they may fade away. Instead of thinking about the long goodbye, I focus on the long hello, and embrace all that we still can share.



 

I WONDER WHAT IS MOM THINKING ?

 

I WONDER WHAT IS MOM THINKING ?

Mom recently had two wonderful weeks, that seemed to abruptly come to an end. This week started off with her sounding like she had just swallowed speed. She was on an adrenaline rush. Mom was saying some things that made sense and other things that I found quite difficult to understand. I wondered what was going on ?

Did mom have another UT infection, that was causing her to be in what seemed like a semi delirious state ? Probably not since she had started an antibiotic the week before. My brother suspected that she might have had an infection. I questioned what would happen if she really needed an antibiotic. Gil my brother, being a physician, thought that this would not be a problem.

I found her one day speaking about my father, who passed away seventeen years ago, saying that she was waiting for him to come home from work. The next day she kept rambling on about some lady and how she remembered what had happened with her. She was making absolutely no sense at all. The next moment she was telling me that I was the best daughter in the world. Of course, I loved hearing those words.

I decided to ask her some questions to see if she, or better me, might understand. As I spoke these words her answers were quick and responsive. "Mom are you happy?" "Yes," she said, "I'd rather be happy and have her hold my hand."  Okay I thought ,who is her ?  Then without skipping a beat she continued to say that she was happy to be alive. Her brain seemed to be firing and sparking all over the place.

The following day she only wanted to sleep. I'm sure this was out of total exhaustion. I only could wonder what I might find later, on the other end of the phone.

 Mom's journey, since she has Alzheimer's, has climbed mountains and has traveled through valleys. The rivers have flowed and at other times they have dried up. I never know what to expect. What might I experience next?

Towards the end of the week, her caregiver discovered that mom was impacted. After she was relieved from this, she bounced back to being aware and sounding better . Almost as if, what I had experienced all week, never happened. If my mom cannot tell me what is going on, how can we as caregivers, know how to help them?

In a strange way this fascinates me. How does the brain connect and disconnect so quickly ?  I only wish that my mom could explain to me what is going on. What is she feeling? What is she thinking? Since she cannot, all that I am left with is to wonder how Alzheimer's disease can remove her vibrant ways, and watch as she fades away.

Somehow, as upsetting as this can be, I have been getting use to her when she is acting this way. Yes it hurts, and I wish I could cuddle her,and take care of her, as she once did for me. Instead I take a deep breath and know in my heart that tomorrow could be a better day.

SOUNDS OF JOY

SOUNDS OF JOY

This is the second week in a row where mom has sounded really good.  She has been alert, upbeat and filled with clarity. We have been able to engage in our daily conversations. I have purchased my plane tickets to visit her, and will be arriving in eight weeks. I am hoping that when I get to her home, she will still be having her better days. Although eight weeks is still a long time away.

The last time that I visited her with my husband, her days were not great and being with her was painful to watch. It brought up sadness and frustration . As my trip is getting closer, I start to feel some different emotions . As of now I am surrounded with excitement, yet feel a small knot in my stomach.

Just today, mom so cutely said that she only hopes that she can remember when I will be arriving. She asked me to please remind her and hopes that she will not forget. I laugh with her as she speaks these words and reassure her that I will not let her forget.

Mom offered to help me make her "famous" meatloaf when I visit, since she cannot remember the recipe herself. Simple things like this excite me . I delight in each small thing she says, as if I was watching my son speak his first words, or take his first steps. Her good days come and go, so I always cherish those special moments.

 It doesn't matter what we may speak about, it is just that we are still able to speak. She touches my heart in so many different ways. I can no longer talk to my dad, and in reality the day will come when I can no longer speak to her.

Mom has no memory anymore of anything, including my dad, her marriage, her youth. Maybe she still has glimpses that come to her, yet as they pass by so quickly she has no way to share them. Yet for all this she does seem happy . In her world, she does not understand the difference.

My mom and dad met when they were very young. Mom was eighteen years old when they married. Dad was only twenty one when he shipped out to serve his country. At that time mom was also pregnant with my brother.

On October 25th this year, they would have celebrated their 70th anniversary together. My dad passed away seventeen years ago. He suffered for nine long months, while my mom traveled each and everyday to see him.

I wonder how difficult it would have been for him, if he had lived, and he would now be experiencing my mom, as she drifts away. My brother and I are now the only immediate family she has left.

Alzheimer's disease I believe effects the caregivers even more. We are the ones that watch how this disease destroys their lives, as they loose their memory and slowly disappear. We feel the pain that they may not even realize exists. 

The sounds of joy that my mom can still express are for me, what makes me smile. She fills my heart with much joy.  Everyday that she still knows who I am, is truly a gift to me. Mom has been so courageous and today as always she will remain my hero.

SAVORING THE MOMENT

SAVORING THE MOMENT

It is now almost a week, where each day I have found my mom to be, what one might say connected.
It is true that she has absolutely no memory anymore, of the past nor the present, yet she has been sounding so refreshed and so alive.

This last week there have been no dark clouds in her life, only beautiful colors of a rainbow. Mom has been extremely happy and her world seems to be filled with clarity. I hear the sounds of birds chirping when she answers the phone with "hi sweetie." She sounds so carefree as sounds of laughter accompany her world.

We have been able to have some conversations without her rushing me off the phone. We have sang some songs and spelled some words and she has been able to follow along with each breath that she takes. It seems to be like a miracle, as if she has escaped from Alzheimer's.  We have been able to be in the moment.

 Of course she is not the same mom that I had before, yet this lovely lady is still my mother.  A mother that can still tell me how much she loves and misses me. A mother that gets excited every time she hears the sound of my voice. A mother that still can tell me to have a wonderful day, and a mother who still shares with me how lucky we are to have our health.

The other day after I spoke to her I thought of my childhood and teenage years, and I thought how my mother always believed in me. I thought how supportive she was to me, and how she encouraged me, when I needed to hear those words from her.  For some crazy reason, I took most of this for granted.

I  realized today how my world has changed so drastically with our relationship. Now with every breath she takes, and with the simplest of things that she may say, I  hold on to each syllable that resonates from her sweet lips.

The words, "I miss you and I love you" have such a deeper meaning to me. These are words that she still can speak. I realize that as time goes by, because of Alzheimer's, she may not always be able to say them . I hold on tightly and I cling to all these loving words, as if I never heard them before.

Today, until no longer, I savor all the love that I receive from her.  I cherish even more, all the love that I can also give back to her. I think of this as savoring the moment, for I know all too well what probably lies ahead.

On October 21st, I will be on the Walk to End Alzheimer's as a tribute to my mom , her younger brother who has passed away, and for all the others who have suffered from this disease.  We are all in this together and we must share in spreading awareness. We must find a cure.



 

COULD THIS BE MAGIC ?

COULD THIS BE MAGIC ?

I belong to a support group with the Alzheimer Association that meets two times a month. I absolutely look forward to going there. It is a safe place to share all of my feelings with others, who I know truly understand. We all have a parent, who suffers with Alzheimer's.

Yesterday while I was waiting for the bus, to go to my support group, I overheard a gentlemen having a conversation with his mother.  It had me reflect on how those days for me and my mom, were now long gone. Like in a trance, I felt myself slipping deep into my thoughts. The days that  mom and I use to share about our lives were no longer.  It left me feeling empty and sad.

I realized that this was a day that I had not yet spoken to her. I usually call her mid morning. For the last few days I found mom so disconnected that it was painful calling her. No sounds of laughter or joy resonated from her. Trying to get her to laugh or sing, was not on the menu. She just wanted to rush me off the phone, and couldn't care less about anything I was saying. Mom was not responsible for her actions, it was her disease reacting.

Even the conversation of asking her if I was her daughter ,and did she give birth to me, she answered with "I guess so."  She was able to thank me for calling, and I also got her to throw me my daily kisses. Without these kisses my day would not be complete. I know that they will disappear, so as of now they mean the world to me. This was not one of her brighter days.

Later that evening I phoned my mom, and like magic, my mom and I were able to have a real conversation. She did not rush me off the phone,and there was sounds of laughter as we spoke about several different things. I knew that she was really listening, as she chirped in that she didn't want to interrupt me while I was speaking. After hanging up, I was floating on cloud nine.

The next morning she was still present, and with much conviction, she shouted how very much she loved me and wanted me to have a great day. She sounded so alive and for several moments I could forget that she had this disease.

Two days of such clarity. So clear with her thinking process. How can this be? Who can understand this disease? When hearing her alive and joyful I do not question, yet when she is lost, I ask myself why? Do the wires that connect in her brain, connect and disconnect? When she has a day of clarity  are  they all connected, and when she doesn't they are disconnected ? What causes several good days of joyfulness, understanding and clarity, and then for several days she seems to slip away.

I know that the researches are trying to find a cure or even a prevention for Alzheimer's. One that I only hope comes in our lifetime. To late for my mom, yet I wonder how much they truly understand. How does Alzheimer's appear and disappear so frequently? This disease is not new for her, she has been suffering with this for at least seven years.

Yes she has her good days and she has her not so good days. I could be flying high from the last few days, and yet I know too well, how easily this magic can slip away. I think of the good moments that we still can share, even if they are less than before. So could this be magic ? I do know the answer, yet my glass remains half filled not half empty. I am still grateful for whatever time we have left, and I must hold on to whenever the magic reappears.

 

IS MY NAME LISA ?

 IS MY NAME LISA ?

As my mom awoke in her home of twenty four years, she exited from her bedroom and saw her caregiver Elaine, sitting in her living room. Mom questioned if she was there to take care of her. Elaine answered that she was, and my mom then stated that she was hungry, and wanted to know if Elaine could make her something to eat. This was a good sign, for some days she is not very hungry.

As they entered her kitchen, she wanted to know where she should sit.  In some ways she has become like a young child, yet not totally. When I got to speak to her she wanted to know when I would be visiting, and added in, that she hopes I know that I could stay as long as I want.

These words that came from her lips just melted my heart. "Mom would you like me to come and live with you"? Her answer was, "I don't think that you would really want to do that". "In that case, I have a surprise for you, Gil's coming to see you today". Mom said "that's great so I'll see both of you" . With an upbeat tone she added in that she can hardly wait to see her kids. I knew that I would not be seeing her for another 2 1/2 months yet I said nothing. I could try to explain ,yet whatever I would say would not be understood and long forgotten.

As we continued our conversation she quickly forgot about my brother coming to visit her.
"Mom would you like to spell some words"? As I started our weekly exercise, starting at A and wanting to finish at Z, I asked her to spell England and then Hawaii. She stopped me on both, and said, "I never heard of those words". Mom never heard of England or Hawaii, what was going on? Can Alzheimer's have my mom's world fade to nothing? Yet fortunately there are other words she recognizes enough to spell .

I realized that at this moment there was some confusion. I decided to stop spelling and tell her again, that Gil was coming to visit her ."Oh my husband is coming", my mom replied. "No mom, Gil is your son. "I know he's my son, I just call him my husband". Okay mom I thought to myself, your close but you have this backwards.

Is there any harm if mom thinks that my brother is her husband? I don't think so.  He visits weekly, and he is the only male figure left in her life. The important part now, is that she still knows who he is.

The next day when I called, I heard Elaine her caregiver say, "Ruth, your daughter Lisa is on the phone". This morning my mom answered with, "no I'm Lisa". As I heard her sweet voice and I giggled, I said "Mom, I'm Lisa so what's your name"? Mom answered with "you tell me first". We both laughed as I said "okay mom it doesn't matter, we can just call each other sweetheart". I thought to myself how quick and sharp her answer was . Was mom trying to cover up her mistake, or perhaps her not knowing?

Once again it does not really matter. Mom somehow was able to understand her own confusion. So I started to serenade her with the song" let me call you sweetheart, I'm in love with you", as my mom joyfully joined in.

There are parts of conversations that we still can share. She has her good days and off days.  I do realize that mom is sliding backwards from Alzheimer's, yet somehow she is still able to hang in there. Her strength, her courage just absolutely amaze me. Several years ago, she became my hero ,and today she still can warm my heart with much joy. She brings a smile to my face, and although parts of her are now lost, I hold on tightly to all that we still can share.

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?

DOES HE LIKE ME ?

DOES HE LIKE ME ?

Once there was a time when my mom and her only grandchild would spend hours watching movies together, laughing, hugging and holding hands. Logan and his grandma were both movie lovers and Logan could watch the same movie over and over. Each time his grandmother came to visit they would have popcorn and pretzels as they put on another movie. They must have seen "Home Alone" together at least one hundred times.

I must admit that my mom was a great sport, to watch the same movie, over and over, year after year. I would not have been able to do that.  I guess for your grandchild, you would do anything, especially one that my mom adored so much. Mom always told me how much she loved Logan and how she felt he loved her back.

I remember when my husband and I would pick my parents up at the airport, and as they approached the gate, they would scoot right by us, to pick Logan up in their arms. Almost as if we did not even exist. After a few moments of them smothering Logan with kisses and hugs, I would then say "hey, remember us"?

We'd all would laugh, and I loved to watch the joy they had for my one and only child.  It thrilled their hearts, and mine as well.

Today is a different story. Actually, last year when Logan and I went to visit her in Florida, she asked Logan, while they were watching television together, if he had any brother's or sister's. Things of course have really changed since my mom has Alzheimer's. I want to believe that she remembers Logan although I'm not really sure.

There are pictures of him scattered, at all ages all over her home, on her refrigerator and yet mom because of her macular degeneration can no longer really focus to see him .

The other day mom was having glimpses of some memories, so I decided to I share with her that Logan and his gilrfriend were looking for an apartment together.  I  told her that I was thrilled since we really did like her. Mom thought that it was so nice, except she asked me two questions. One was "how old is the little boy"? Which I answered, "the little boy is not so little, he's twenty four years old". The other question, almost broke my heart as she uttered the words, "does he like me"? "Mom, not only does he like you, he also loves you".  I could feel the happiness flowing from her heart.

I then shared with mom that Gil, her son was coming today to see her. Mom answered with,"oh great ,and is this my real son"? I giggled and said "of course mom, you have only one son, and he is the real one". Mom seemed to enjoy that, as I wondered what was she thinking.

As I hung up the phone I thought about the several conversations we just had and thought how horrific Alzheimer's is. How can this disease just remove all of her memories, her identity, her past and even her future. The moment something happens one second later it is all gone .

Even when I share with my mom that I am coming to visit, she cannot hold on to the joy that in the near future I will be arriving. The whole thought and experience is lost that second and disappears into no where land.

I sit and wonder how my mom spoke those words asking me does he like me?  I felt a sadness about how can this disease destroy all these brain cells, bit by bit to there is nothing left. How can she forget the feelings of his love?

All that I have left to say is "mom, your grandson not only loves you, he adores you for all the things that you once shared, for being his grandmother, and for all the love he truly has felt from you.

Powerful tape only 2 minutes long.Please watch and pass along.
http://www.youtube.com/watch?v=xeHTTonG6co&feature=player_embedded

MOM, DO YOU REMEMBER MY BIRTHDAY?

MOM, DO YOU REMEMBER MY BIRTHDAY ?

My vacation started the week that I would also be celebrating my birthday. As usual I phoned my mom each day to say hello and see how she was doing. I can always tell from the sound of her voice and how she responds to me, what her state of mind is.

This week was not one of her better ones. She was confused about most of the things that I spoke about. She mentioned that she still lived in New York, which was her home twenty five years ago. Mom no longer knows when I was born or how old I am ,which is not necessarily a bad thing.
When I whispered my age, she was able to make a joke and tell me that I was catching up to her. With that we both giggled like teenage girls.

 My mom asked me to please remind her again, the day of my birthday. She was concerned that she would not remember. I reassured her that I will absolutely let her know as she serenaded me with "Happy Birthday to you, Happy Birthday to you". As she got to the verse to say my name, mom said "you, you". When she finished singing I said, "mom who is you, you"? Sounding a little embarrassed she said "its you and I just forgot your name ,although it is on the tip of my tongue". "Mom here is a hint for you, my name starts with the letter L". She shouted out, "Lisa" sounding so proud of herself.


 On the day of my birthday, I reminded my mom, and she then sang again to me. This time she got it correct and added in Lisa, as she reached that part of the lyrics. I excitedly thanked her for bringing me into the world and she responded with "how did I bring you into the world"? "Mom, you gave birth to me", which she seemed confused and not able to comprehend. Since my dad passed away seventeen years ago, I now do not have a parent who can truly celebrate bringing me into this world.

As I hung up the phone I realized that my mood had shifted. I was feeling a pang in my heart for my mom and maybe also for me. My mind started racing and thinking about people who have cancer and what they perhaps need to go through. Chemo and or radiation therapy. I hear how sick this can make them feel. Yet, I also thought of how Alzheimer's disease can remove someones entire existence, their entire life, as if it never happened. I wondered to myself which disease was better or worse, if given the choice.

I needed to get my mind away from this and back into enjoying our vacation.  As we were driving into the sunset I was then able to shake off these feelings. We started climbing the winding roads and through the mountains in the Berkshires , being very close to the borders of Vermont. I was able to appreciate all the beauty that was right there before my eyes, and feel refreshed by the breeze of the fresh country air. I felt once again alive, and so thankful for all the wonderful things that I have in my life . Things that on some days we can all take for granted.

My mom in a few days seemed to bounce back again, and for this and the time we still have together I cherish and celebrate all the love and affection that we can share. She may not remember the day I was born ,or the very first time when she held me in her arms, yet I can  still feel all the love that she has for me and all the love I have for her.