Friday, December 30, 2011
I just wanted to take a moment to wish everyone a year filled with as much health and joy that is possible for each one of us. We may all be in different places in our lives yet let's try to reflect on the joy that is still part of our lives. I would also like to wish that peace may return to the planet..
Happy 2012 to everyone.
Monday, December 26, 2011
POTATO PANCAKES AND SANTA CLAUS
How special is special ? Yesterday when I spoke to mom and wished her a Happy Hanukkah she thanked me and I tried to explain the eight days of celebration, and how I wished that she could join us for the holiday. My mom was having a more difficult time understanding where I live, or where she lives, or anything about Hanukkah. Anyway, what was so cute was that after I spoke about Santa Claus my mom burst out singing "Santa Claus is coming to town". Mom was actually able to sing the entire song on her own.
I give credit to Elaine my mom's caregiver . When I was just visiting she had on the radio Christmas Carols, for mom to enjoy and sing along with. Our very sweet Elaine got back on the phone and told me that she was going to make my mom fresh potato pancakes with apple sauce. "Wow Elaine ,that's really great. If it's easier for you,you can just buy the frozen ones, like I will be doing". "Oh no, Lisa, I love making them fresh". Now I ask you, how special is Elaine ?
I have mentioned before, how blessed we are to have Elaine and her daughter Trudy, taking care of my mom each day (even if it is only six hours). We have been waiting to get a check from the VA(for over a year) since my dad served his country. Dad was in the Navy during WW 2. My brother who filled out all the paperwork just got the approval. When the check finally arrives, we will then be able to increase Elaine and Trudy's time with my mom to eight hours a day. Eight hours is certainly better than six, although I wish we could have them take care of Ruthie for many more hours each day.
Elaine just left for her birthplace of Jamaica to be with the other half of her family. When I spoke to Trudy and asked if she will be able to see my mom, since Christmas is her holiday , her response was "absolutely". Without Trudy or Elaine I do not know what we would do. They really take special care of my mom .
Mom was cute the other day. Mom commented that she does not sing when the tv is on. Ruthie said that she always allows the tv to do the singing. Then mom explained, "I'm only kidding because you know the tv can't sing". After we finished giggling we threw our kisses to each other and my mom said, and I quote, "enough kisses or my lips might fall off". I asked my mom if I was still her favorite daughter and she laughed and said "yes, you're my only daughter". I guess I spoke to mom at a good moment, one that she had some humor and clarity.
Anyway, I am so thankful for those potato pancakes and of course Santa. Wouldn't you be? I would like to take this time to wish everybody a year filled with much love and health that is possible. Happy New Year to everyone and may this year bring all of us some peace and comfort.
Sunday, December 18, 2011
FEELINGS, OH SO MANY FEELINGS
"Mom, do you know your mother"? "No Lisa, I do not remember her". "Mom, who are you to me"? My mom then answered, "I am your good friend" and she gave me a kiss on the top of my head as she exited the room. My heart sank for a moment and when mom came back I responded with, "mom I love you so much". My mom then said, "I love you also" and I asked "as your daughter"? My mom then said," yes as my daughter and my friend".
This was pretty much how my visit with my mom was this trip. It was one that had me realize that my mom's Alzheimer's was progressing. I was so grateful that my husband had come with me and that we were also not staying at mom's house. I got to see my mom for six days in a row and when I left her I had my husbands love and support to help me cope with my mom's condition.
While I was in one room, my husband in another and my mom in another my husband heard my mom say "is anyone here, is anyone here"? We answered and she then said "someone please come here, I'm very lonesome".
Monday, the day before we left to go back home my mom seemed listless. She had no energy, nor did she want to do anything. Mom was not interested in anything as simple as even getting or giving hugs. As I sat at the airport the next day, waiting to return home my eyes were filled with water which could have quickly turned into tears. My heart felt quite heavy and filled with sadness as I wondered what may lie ahead.
The next day when I phoned, my mom wanted to know when I would be coming to see her. I just left and my mom had no memory of my having just been there. It's ironic, I get upset when I see her, and I get even sadder when I cannot see her.
I wonder why after every trip visiting my mom I feel like I'm getting sick. I return feeling trapped and perhaps helpless. Helpless, yes that's an interesting word. Helpless in the sense that there is nothing that I can possibly do to help my mom. Her whole life and existence has disappeared like it never existed. The thought that this disease can do this to anyone just boggles my mind and since it is my mom it also breaks my heart in two. I just want to hold her and be able to protect her, a feeling that I have for my own child. Our roles have reversed, although I still get glimpes of my "real" mom. There are parts of her that still shine once in a while. Either way the pang remains in my heart and soul for my mom.
On Thursday my spirits finally lifted after I spoke to my mom. My mom was having a really great day. She was alert, sharp and sounding happy. It's amazing how much lighter I became. I told my mom that she was my favorite mom and we both giggled as my mom then said to me "you're lucky because I'm your only mom". It was only three days ago that my mom thought she was my friend and not my mom. I told my mom that she sounded so happy and she responded with that she is always happy.
I know that this may not last, yet I loved our conversation. I feel happy, excited and rejoice in the happiness that she was able to express today. It's amazing what a difference a day can make.
Sunday, December 11, 2011
UP, UP AND AWAY
Last year around the same time my husband and I stopped off to see my mom in Florida before our final destination to Bueno's Aires, Argentina. Since that trip I have visited my mom several times during the year. Today my husband and I are leaving for Florida to visit mom for 6 days, while we will also see some friends and family from Bert's(aka Fonz's) side of the family..
I hope when we finally see mom on Thursday that she will be doing a little better. Some days my mom is still pretty good ,although the disease is taking it's course.
Yesterday when I spoke to my mom I asked to speak to her caregiver Trudy(Elaine's) daughter. My mom was confused as to who she was speaking to on the phone(namely me). She did not know what to say. Was it Lisa, her daughter on the phone ? She first said someone, then after I questioned her she said Lisa(?) with a real question in her voice , and then she said her sister(she never had one) and finally her daughter. I was thrilled that she was able to figure it out.
Anyway, Trudy did say that this was a harder morning on mom because my mom kept asking where the bathroom was. You see my mom has lived in the same home, her home for the last twenty five years. Need I say more. Hopefully when we arrive, my adorable mom will be doing better.
It's Thursday and I have just arrived at my mom's house. After mom opened the door she could not recognize my face for the bright light was blinding, and her macular degeneration also got in the way. Between that and having Alzheimer's it is not always easy for her. Yet as soon as she realized that my husband and I were visiting she became alive and started dancing with both of us.
After spending our first day with my mom I came back to our hotel room and I started feeling a little sick to my stomach, not from food or a virus. My stomach and heart felt achy from sadness. As I spoke to my husband after watching "The X Factor", I started to cry. When I awoke the next morning I didn't feel much better.
Yesterday my brother and I got to speak about my mom, although I am still left feeling uneasy and confused about my mom's living situation, given the progression of her Alzheimer's. My mom out of her disease has become a prisoner in her own home. She never wants to leave and for her, her home is the only place she feels safe. She doesn't understand this ,yet I now do.
As my brother and husband were playing tennis right in front of her home, I took my mom to watch them play. I had to hold her hand every step of the way, for she could not see from the bright sunshine that was beaming in the sky. From the moment that we left her home she only wanted to go back home. Later in the early evening we took my mom out to dinner and as always she only wanted to come back home. She looked highly uncomfortable as we sat in the restaurant and complained about how cold she was. Mom ate maybe two bites of her dinner and we had it packed up and brought it home. We went into her home to help her get undressed and washed as my brother drove away. My mom did not want to do anything from brushing her teeth, to washing, to getting into a night gown. This occurs whenever I do visit, except this time I got her to do half and decided to avoid struggling with her.
After I left her home, I thought of the three hundred and sixty five days a year that she's alone after her caregiver leaves in the afternoon. Who has been there to help my mom along the way? Not me, not my brother, not my dad who passed away many years ago. I realize how I have pleaded through the years that it is now getting close to the time that my mom needs to be put into a home.
No, my mom has not wanted to leave her home and my brother and I have not totally agreed about this. Mom wanted to stay in her home and my brother wanted to let her remain there. I know that no one including myself would want to leave their home and go into a nursing home. It must be so frightening and between my mom's childish ways and her mind in and out of reality, today she was able to say, and I quote her " no one wants to die". This she said with total clarity.
I now wonder what I am going to do with all my thoughts and feelings. Growing old is not much fun and we are not all so lucky to just go to sleep and not wake up. There are many different illness's that we can face. My mom's happens to be Alzheimer's.
Sunday, December 4, 2011
OH WHAT A BEAUTIFUL MORNING, OH WHAT A BEAUTIFUL DAY
"Hi mom, I'll be coming to see you in five days". "Oh how great," mom says with a big cheerful sound in her voice. Are you bringing the children?" (I only have one child). "No mom, I'm not coming with Logan, he and I just visited you eight weeks ago. Mom I'm sorry but Logan has to work. I am coming with my husband Bert and we will be staying for 6 days". "That's wonderful," mom replies. I just loved hearing how excited she sounded. "Mom, tomorrow I will be seeing Darlene (see picture above). She's here in New York for a couple of days. Mom several years ago we all met Darlene for dinner in the city". Mom then says" the name sounds familiar yet I don't really remember ". You see, Darlene was once married to my brother Gil. Both my parents absolutely adored her and even though my brother and Darlene parted years ago we have all remained very close to her. Logan calls her his Aunt Darlene, and to me I love her like the sister that I never had.
They call it Alzheimer's. A disease that has robbed my mom of just about all her memories. It's sad that one's life can just disappear like it never even existed. Oh well, on a brighter note, one that I do not take for granted, I still have my mom and she seems to be quite happy.
Yesterday when I spoke to my mom I asked her to speak to Elaine, before mom and I had a chance to throw each other our daily kisses. When my mom returned to the phone I said" mom what would a day be like if I didn't get my daily kisses from you". We both giggled and my mom then said "thank you for loving me so much", and I replied "and thank you for loving me back".
It's so strange how one second my mom says to her caregiver "oh my daughter Lisa is on the phone " and the very next second when I ask to speak to Elaine my mom then says "someone wants to speak to you". Wasn't I just speaking to my mom and didn't she know who I was? I know she did at the moment,yet it just amazes me how her mind no longer can make the connection.
Does this upset me ? Maybe if I would choose to dwell on it. Yet mostly, I shrug it off with a smile. It somehow comforts me that I can now in someways take care of my mom the way she took care of me. My mom certainly has her childlike ways. How innocent she has become, how sweet and how loving. Again, I out of her illness have been able to open other doors and share such love and affection with my mom that I can now cherish all of it.
"Okay mom have a great day and I'll speak to you later". Then I start to serenade my mom as she joins in, with "oh what a beautiful morning, oh what a beautiful day, I have a wonderful feeling, every things coming my way".
Monday, November 28, 2011
LIFE STILL GOES ON
We all know how quickly our life goes by or at least we are suppose to. Do we take some days and perhaps years for granted? Do we take our family, loved ones sometimes for granted? We all just celebrated another Thanksgiving holiday. Do we need the holiday to really get in touch with how lucky we may be? Why can't we just "own" this without having any holiday to remind us.
It's funny how out of my mom's illness, that everyday that I still can have with her, I cherish it in a way that I never did before. For me did it take my mom getting Alzheimer's for me to realize how lucky I am to have her as my mom and in my life everyday? Now,every second that we still can share has become so precious to me.
My holiday was very special this year. I shared it with my son Logan,who is now 24 years old(see picture above) and my husband, my dear friend Leslie and then my cousin Carole and her three sons, their wives and 7 of her grandchildren. Unfortunately my bother lives in another state near my mom so we were not all together. Although in 10 days I will be back visiting my mom and brother after just visiting 8 weeks ago. Logan came with me on my last trip and now my husband Bert(mom's dancing partner) will be accompanying me on this visit.
My mom spent Thanksgiving with her caregivers family, which my mom now has no recollection of. Nor does she remember how, just a short time ago, we called her Mama Mia the Dancing Queen, for she loved to twirl my husband around while they danced. Yes, my mom Ruthie had to take over and lead the way. Now all these memories no matter how much she enjoyed them have disappeared. Yet her life and ours still goes on .The only difference now is that my mom has Alzheimer's and for her there is nothing left in her memory of her past and even her present.
The day after Thanksgiving I spoke to Elaine moms caregiver and she filled me in about how my mom was on Thanksgiving day. Ruthie of course just wanted to go home, which is something she does say even when she is with our family. Elaine kept telling her that Logan and my brother were coming so they had to stay and wait, and my mom who is still sharp replied" no they are not coming today. They are coming tomorrow". Ruthie tried to "catch" Elaine although she had no luck and spent the day with Elaine's family as they all sang Christmas Carol's. Ruthie of course joined in singing, and I was told how much she enjoyed herself. No my mom cannot remember to tell me anything about that day or any day in fact. Yet she and I still can throw kisses and share our love each and every day.
I know that my mom had a good time on Thanksgiving and enjoyed being out . I heard the cheerfulness and aliveness in her voice. For this I remain grateful and thankful and need no holiday to remind me of how lucky I am to still be with my mom ,no matter what "place" my mom now lives in.
Monday, November 21, 2011
CAN TIME STAND STILL?
My mom probably has Alzheimer’s now for at least 5-6 years, if not longer. I realize now thatwhen I look back there were such obvious things starting to change with my mother. Perhaps I should have been more aware of what was happening to her. Maybe I did take notice and just chose to ignore it, (like it might go away). Could it have been my imagination, or just not wanting to accept that this could be happening to my mom? Or was I just in denial? My Aunt Phyllis who was married to my Uncle Alvin, my mom’s only brother, had been suffering for many years with Alzheimer’s. My Aunt Phyllis had been the first one to point out to me the changes in my mom, although I think at the time my brother and I chose to ignore them. We probably thought that our aunt was just saying it, since Uncle Alvin who was younger was starting to really get bad.
As I think back now, here are some of the signs that I noticed when my mom would come to visit for one to two weeks in the summer. Just ignoring it at the time, seemed easier.
Mom’s – Signs of Alzheimer’s
1) Started dressing in dirty/stained clothes when she was always so meticulous.
2) Left crumbs and dirty dishes all on my kitchen counter after she ate. She would never have done that before. She would have placed the dishes in the sink and cleaned the counter.
3) Brought her summer clothes up to NY for Thanksgiving (winter time).
4) Kept telling us that she would resume going to all her clubs when they had already started (up again). They stopped in the summers and now it was the winter.
5) She told me she got lost in her car when she went to the supermarket and her doctor, sounding upset because she had traveled these routes many times before.
6) When my aunt had invited her over for dinner when she got picked up she was not dressed and forgot all about what day and time she was invited for.
7) My aunt had mentioned to me that when she did see my mom she was dressed in dirty clothes, something my mom never would have done.
8) Wouldn't look at all the home decor magazines that I saved for her visits , that she at one time enjoyed looking at.
8) Wouldn't look at all the home decor magazines that I saved for her visits , that she at one time enjoyed looking at.
After realizing what was happening to mom I just wanted to be back in the space of laughing with her. I wanted to feel uplifted by what she said and who she was. I wanted to rejoice in her new found dignity, how she handled what was going on with her and to stay inspired by her. I found that when I was having a hard day about my mom, filled with feelings of sadness that I would hold onto that maybe tomorrow will be a better day. I also sometimes wondered if this is how I might one day be. Will I be like my uncle or my mom? Is this disease hereditary? Especially when I sometimes cannot remember something as simple as, did I brush my teeth? Sometimes, I need to touch my toothbrush to see if it is wet.
Anyway it is now years later and here is my mom, the special one. The one I can still call my hero. We still can laugh together and there are still moments when my mom is sharp. No it is not the same ,and why should it be for in life, life does not stand still. Only if time could, would we choose to freeze it?
Wednesday, November 16, 2011
JOY & CELEBRATION
Today's post is filled with much joy & celebration. Logan my son was born twenty four years ago on November 16th. I have been blessed with such a wonderful child who is both warm and sensitive.
My mom for the last two days has been sounding great and full of life. I thought that this was a good time to perhaps reflect on our lives. So for these two special reasons this for me is a special day to celebrate and acknowledge all the people in our lives. All the people who we love and all the people who have touched our hearts.
It is a moment to acknowledge all the things in our life, and to be thankful for all that we have. I feel so lucky to also have a wonderful husband and my dad, who when he was alive was so loving to me. My brother and I have had our up's and down's yet today maybe out of my mom's illness I feel much love for him and appreciate all that he does and especially in his caregiving to my mom.
I watched on 20/20 this week a special on Gabrielle Gifford and it brought tears of happiness to my eyes. Except for my mom who is my hero, Gabby inspired me and I felt uplifted from her strength , determination and courage. Before she was shot I did not know much about her, yet today I think that who she is can make any of us a believer. Believe in our strengths and believe in who we are.
So I would like to thank my mom, my son, my husband ,my dad and Gabby for having me feel the joy's of happiness as we enter the holiday season. Each of us has something in our lives to celebrate. Yes, everyday that we open our eyes and get out of bed no matter how difficult some days may seem,
we need to realize that day is a gift. A gift that we sometimes may take for granted. So no matter what we are going through, I hope that you can find that bright spot in your life to feel some joy .
I would like to wish everyone and their family a very Happy Thanksgiving and to send hugs to each and every one of you.
Monday, November 14, 2011
My son Logan will be twenty four years old this week. My mom is now eighty seven years old. And I am.....Anyway life does not stand still. I cannot believe how old Logan is, nor my mom, nor me for that matter. Yet although my mom is not doing as great lately, to be eighty seven is to have lived for a long time. For this alone I am so grateful.
IF WE CAN ONLY FREEZE TIME
I mention to my mom that Logan took a bus to Providence, Rhode Island this weekend to visit his friend from college. My mom immediately said” aren’t you scared”? I am a little taken back by what she has just said. My reply is” no mom I’m not scared, why should I be” and she says” you let Logan go all alone on the bus he’s so young”. My answer to my mom is “he’s going to be twenty three years old in a few months. Ruthie then says “oh my, I can’t believe how old Logan is already, time really goes by so quickly.” I then ask my mom how old she thought Logan is and she answers with,” I don’t know”. This happened a year ago.
The next day my mom had a difficult time remembering her father’s name, Logan’s name, my name, my brother’s name and her name. After I play a little with her on the phone she seems to recall her name, my name and then Logan’s. The clock is starting to tick. I cannot explain why I just really feel it.
As I entered the elevator going to my gym I had a touching experience. There was a caregiver with an elderly woman who I have never seen before. I said good morning and the elderly lady did not answer me. Her caregiver acknowledged me and I then looked at the lady and said again “good morning” and she smiled and repeated it back to me. Her caregiver then motioned to me that the woman is not all there. As they were getting off the elevator at the lobby and I remained on it, I asked the caregiver if the woman had Alzheimer’s and she answered" yes". The caregiver then motioned that the women is always battling, for she put up her hands and moved them like a boxer. I smile and said “I understand, for my mom also has Alzheimer's”. I proceeded to the gym with thoughts of what just happened. I have not experienced being so close to someone else with Alzheimer’s. I seem to remember that on one of my trips to see my mom, while I was visiting, we ran into someone who knew my mom, and of course my mom didn’t recognize her . I explained to her neighbor when my mom just started to sing from nowhere that my mom had Alzheimer’s.
Is this something that we feel that we need to explain or apologize for someone’s actions? In my case, I wanted to let her neighbor know why my mom did not recognize her and why she just started to sing. No I was not embarrassed for my mom’s actions. Quite the contrary. When I look at my mom today I just feel so much love for her. At that moment I had decided to explain to this lady, who had showed such kindness to my mom what was going on.
My husband enjoys giving me articles to read and it had me remember all the articles my mom had given me over the years. When my mom gave them to me at times I found it annoying. Now I miss the fact that she can no longer do that. It’s funny how we can take for granted things, not cherishing all that passes us by. We do not realize how in one second something can just come to an end. All that’s important to me now is to tell my mom how much I love her and to try to brighten up each and every one of her days.
In three days my son Logan and Ruthie’s very favorite grandson (she has only one) will be celebrating his twenty fourth birthday. I remind my mom and her answer always is “please remind me again because I will surely not remember,” yet today she sang the Happy Birthday song and asked me to please deliver it for her to her sweet grandson. Yes mom, it will be my pleasure to deliver your message. If only we can freeze time and not let life pass us by so quickly it would be a treasure.
Tuesday, November 8, 2011
I had this thought last night for the very first time. What I realized was that if I never, ever called my mom again I would never, ever speak to her again.
My mom would never realize that I did not call and she would never try to call me. She has no idea what my telephone number is and although it is plastered all over her refrigerator she would never know to look there. I don't even think that she would know how to dial a phone. Yes, mom get's incoming calls everyday from myself and my brother, yet she has not dialed a phone in several years.
I know that she cannot work the microwave, or the washing machine, or remember to flush a toilet, or what to use to brush her hair with, so why would she possibly know how to call me. Wow. I'm out of breath just thinking about it, no less writing about it. I wonder if my mom ever has a quick flash as to all the things that she use to know, that she can no longer do? On a brighter note when her phone does ring she still can answer and say" hello".
MY MAN I LOVE HIM SO (fourteen months ago)
Hi sweetie she says when she hears my voice on the other side of the phone. I respond with how’s my favorite Mama Mia and my mom reverses it and says "Mia Mama is good and how are you"? We giggle like teenagers. After several conversations with my mom, she then says" there are something’s that I am not going to remember. I cannot keep everything in my head , and not everything is important for me to remember”. Wow, mom you certainly have a point there.
From time to time she has mentioned something about her dining room chandelier, how nice it is. She tells me that my dad had picked it out, and that originally she had not liked it. Yet she now says that my dad was right and that it is a beautiful chandelier. Mom then interupts herself, and shares with me that she was the sick one ,and how she always thought that she would die first. She explains that my dad was the healthy one. Mom says he died too young, and only then does she sound sad and repeats what she has said before,” when your time is up, your time is up and there is nothing that you can do about it”. I try to stay away from these conversations with her for there certainly is no reason to upset her more. I’m pretty sure that the chandelier represents or symbolizes something profound about my dad, for this is something that she has spoken about several times before. I do remember that it came with the apartment and I remember that my mother never had liked it , yet my father did. For some reason she kept it and never bought a new one.
My dad was so easy going and yet he had wanted to keep the chandelier, so my mom left it hanging over her dining room table. My mom has also said that she would never move and leave this chandelier. I have explained to her that we could move it also, and she replies that it is really heavy. I have told my mom that we would hire someone to move it and she always says,” oh no”.
Is this chandelier my dad to her? How meaningful it must be to her. I wonder what the chandelier represents to her? Will I ever find out? I guess I never will and does it really matter.
My mom as the days go by in early September, 2010 seems to have so little memory left of times and places that she shared with my dad many years ago. Memories that have just faded into the night, just like they never existed. Yet she still has her sense of humor and wit. I have noticed that her spelling is not as sharp and she doesn’t sing to me as much. There still is the laughter and joy in her voice and for this I am still so thankful. I still hear the smile on her face when I call, and when she speaks my name, I seem to melt.
When friends ask how my mom is I still can answer she's fine, with a smile on my face. It’s now the little things in life that are important to me. I have learned to appreciate all the things that I had taken for granted. And I know that with each passing day that time is not standing still, and perhaps one day my mom will not know who I am.
Sunday, November 6, 2011
ONE YEAR TO THE NEXT
It's funny and it's strange how when I read what I wrote about my mom approximately fifteen months ago I see how in some ways she's the same, and I also see how she is changing or should I say disappearing more into her self.
I will be going to see Ruthie again in four weeks with my husband, mom's dancing partner. Mom has really no memory of this anymore, where last year she was able to recall how she had danced with him and lead the way. We were able to laugh alot when I would tease her how she was the only one my husband now enjoyed dancing with.
I called my mom today and was telling her how exciting it was to see all the people from around the world running in the New York City Marathon. I shared with her how I saw them running in Central Park and over the 59th Street bridge. This was mom's old stomping grounds for she grew up in the city. Mom had no idea what I was speaking about. I tried to joke with her that the runners were running twenty eight miles and that I would have trouble running one mile. I hardly got a response from my mom and she actually did not even want to speak about it. I find that she has stopped asking questions or have any interest in ninety five percent of what I have to say. Could I be so boring, that Ruthie has nothing to say, or more likely that mom has no images left in her memory ?
Alzheimer's what an amazing illness. Amazing not as in good, but as in how can someone's whole life just seem to disappear. Just like it never existed before. Who are they, and where did they come from. Each Alzheimer's case is different. My mom seems to have no memory of hardly anything from her past as well as her present.
August 24, 2010 I call my mom and start to sing Happy Birthday to her. Several weeks ago we celebrated it together in Florida, yet she has no recollection about it or of Logan and I being with her. My mom fills in her age as I sing and says that she is twenty four. I correct her and tell her that she is 86, she then says to me “what difference does it make how old I am, I cannot do anything about it.”We both laugh and then I tell her that when I come back again in a few months, we can celebrate her birthday again and she replies, no please just come because I love and miss you. My mom at moments can really break my heart.
I have another good day with my mom. My mom sounds sharp and alert. I shared with her some cute things about going with Logan to buy him a new mattress and negotiating with the salesperson. She understood everything and had once again given me some words of wisdom about my negotiating skills. She was able to follow everything I said, make her comments, and needless to say sharp ones at that. Our laughing and singing together has returned. My mom is back and thanks again, Ruthie for making me laugh and smile. As they say what a difference a day makes!
It is Wednesday and the day my brother comes to take her to lunch and food shop. As history repeats itself so does my brothers visits to my mom. My mom really likes this day. I cannot say in truthfulness that she looks forward to it because looking forward to it would be remembering how much she enjoys it, and that she cannot do . Every week when I remind her she asks me if I know what time my brother is coming. My answer always is 1 o’clock and then she asks me what time it is now. She then tries to figure out how many hours till he comes, and then she repeats and asks me again what time it is and what time is he coming, since she cannot remember. This silly conversation actually delights me. It is almost like speaking to a child. I guess the difference is that now I am so understanding, where before I would have felt perhaps annoyed thinking to myself, what’s her problem, or why can’t she just remember. I probably would have lost my patience. I’m not necessarily proud about that character flaw in my personality, just realistic and truthful about it.
Sometimes while I am speaking to her I tell her to hold on or that I have to hang up now because I want to write down what she just said, before I too will forget it. My mom asks why I am writing it down and I tell her again about the memoir that I am writing about her. Sometimes she says that it sounds familiar yet she finds this a little amusing. My mom says don’t worry you won’t forget it (although I can, which is a little scary to me) and she also comments that I should not ask her to repeat what she just said because she cannot remember it. So of course we both laugh at the truth, which is lovely. No heaviness about the truth, just a statement of what is. This is what is so precious about my mom. Instead of her being upset that she knows that she cannot remember something (or really anything), she just says it lightly and moves on. No self pity, no poor me. Now, even though this is my mom, I do find her to be amazing.
Wednesday, November 2, 2011
My mom's caregiver and her daughter are special. They are kind and caring to my mom who has Alzheimer's disease Please take the time to honor your caregiver, especially if it is you.
November is National Family Caregiver Month, and I wanted to share some personal thoughts on the subject of caregivers. I was a caregiver for my father, who passed away from Alzheimer’s 15 years ago. Fast forward to the present. I was in denial when I was diagnosed with the early-onset Alzheimer's...
Sunday, October 30, 2011
My mom was so young when this picture was taken. Life was perhaps for her joyful and yearning for adventure.
Today when I called my mom, I was told by her caregiver that my mom had expressed pain in her hand and that it was both swollen and red. Normally when I ask my mom about something that I was told; like she complained of a stiff neck, my mom would answer that her neck was fine, for she would not remember that she had just recently said something about it. Not today. Today was different. My mom when I questioned her about the pain in her hand she answered that it did hurt and that she could not remember what had happened to it. Life at times can be painful, and getting old for some, is not fun. Today definately feels like one of those days.
My post on my blog is from a year ago after I had visited my mom. It was titled "Broken Heart". Can the title have been any more appropriate for how I now feel. I doubt it.
BROKEN HEART (Aug. 2010)
I have been noticing this whole week when I call my mom that she is not sounding happy, not her usual self. She sounds down, sad and lonely. The total opposite of being euphoric. I had tried a little to get mom to sing and laugh, although she just seems not to want to. I’m hoping that this is just a “phase” like we all have our down moments. My mom took our departure back to New York very hard, sharing all her feelings that were rather upsetting to Logan and I before we left. I have avoided telling her on the telephone, how nice it was to see her or how much I miss, her since I am trying to avoid bringing anything up to her that might upset her. I’m not sure if what I am doing is better or worse. I know when I left her home to go to the airport my brother said just say goodbye and do not make a big deal about it.
Yesterday I actually asked her if she was okay, and she answered yes. Mom then asked me why I was asking her, and I replied that she did not sound like herself. When I mentioned who would be coming each day to visit, Elaine her caregiver, or Trudy, Elaine’s daughter she seems to really want their company. She seems to hunger to have them with her. She tells me that she keeps opening the door to see if anyone is there. It is seven days since I was there and mom keeps asking me when I am coming back. I answer “mom I just left, although I will be back in three months". Mom said “good, just call me to remind me”. She almost seems like she wants to get me off the telephone. Does she feel like I abandoned her? Or do I feel like I did ?
My heart hurts for her loneliness and once again I am trying so hard to get my brother to get her more time with her caregiver, so mom does not need to be so alone for so many hours. I have faith that Gil will come through. It is our mom and I hope that he too wants her to have what she deserves. So as of now I just need to be patient and wait.
When I called my mom the next day I heard the same lonely sad voice. I tried to get my mom to sing and mention to her that she is not making me laugh as she usually does. She makes a comment about” what do you want me to do just laugh” and does an imitation of a laugh and stops. I tried to come up with some humorous things to say that I hoped would have her respond in a positive alive tone. She actually rushed me off the phone again, as I said I loved her and wished her a nice day. Mom did not say I love you back or did she throw me any kisses.
I hung up and went to my Pilates class with a feelings of a broken heart. There has been no smile on her face for almost nine days now.
Today Aug 18th 2010, Wednesday when I telephoned my mom I think I got Mama Mia, Princess Ruthie back. She laughed and when I asked her to sing a song for me she asked, “Why I can sing”? And I said” you sing like a canary and I feel happy that you are laughing again”. My mom started to sing I’m So Happy, I’m So Happy, and continued putting in her own words, and phrases that sounded like poetry to my ears. We told each other how much we loved one another and and blew each other our daily kisses to each other. I hung up the telephone with a great big smile on my face and warmth in my heart.
I realized how down I was feeling and how I became elated to hear my mom sounding happy again. I felt relieved and lightened up, for the moment I had my mom back.
As I reread my entry from a year ago I see how my mom’s condition has worsened, and in some ways how her Alzheimer’s has remained in the same stage. She does not seem to be getting that much worse ,yet I do see that she is regressing. She sings a lot less and although she still can spell, it is not as good as it was. Until Ruthie forgets who I am, or does not recognize me, I will hold my head up high and delight in all that we still can share together. Ruthie, my mom, my sweet mom.
Monday, October 24, 2011
WALK TO END ALZHEIMER'S
I decided to change what I was going to write today in my blog to dedicate this post to all the people on this planet that have Alzheimer's, and to all their familes and caregiver's ,whether they are family members or not, who take on the challenge of caring for someone each and everyday.
Alzheimer's is a disease that as of now has no prevention or cure. It is a cruel disease in the way that it eventually removes all of ones memory, as if their life never existed.
Alzheimer's is a worldwide problem. It knows no country, no nationality and it has no boundaries. All of us no matter where we live in the world can and are effected.
We all need to be advocates, so we can keep raising money to continue the research so the scientists can keep searching for the answers that are so badly needed.
Alzheimer's costs the nation 183 Billion dollars annually.
35+ million people in the world have dementia.
It is the 6th leading cause of death in the U.S.
Currently 5.4 Million Americans are living with Alzheimer's.
Every 69 seconds someone in the U.S. is diagnosed with Alzheimer's.
10 Million baby boomers will get Alheimer's if we do not stop it.
Yesterday, my son Logan and my husband Bert walked with me,in New York City,along with other New Yorkers. We all so proudly walked with each other ,all of us committed to spreading awareness about AD. This was the 23rd Walk that New Yorkers had participated in. Although my mom has Alzheimer's for over six years now,and her younger brother had passed away from AD over 3years ago,this was our very first walk. We all held our heads high and we were joined with 5,000 other New Yorkers to have our voices united and heard.
I know that around the world that people from every country have been Walking to End Alzheimer's.
Alzheimer's is a worldwide epidemic . Can we all,only imagine that one day there will be a world without Alzheimer's. How wonderful that will be. So please let's all stand together and have our voices heard no matter where we live in the world. We all need to be committed to keep spreading awareness about Alzheimer's all over the planet.
Wednesday, October 19, 2011
RUTHIE THE LIFEGUARD (Day 3)
It’s 7AM in the morning and today I leave to go back home with Logan after visiting mom for three days. Today will be a rather long day for my brother will not arrive to around 4PM when we will depart for the airport. We have no car and even if we did my mom does not want to go out, and when she does she only wants to go back home. We’ve tried to convince her to take walks and although I must agree that it’s rather hot outside she does not want to do this either.
Will she take advantage of the adult center that we just took her to? We tried this before and she refused to go. Would this help to motivate and stimulate her? Mom says that the people are too old and she does not like the games they play. Now how is that for calling the kettle black? Ruthie is certainly no spring chickadee.
Logan and I were able to get mom out. We all walked to her swimming pool, and the reason I was able to convince her to come out, was that I told her we had to be the lifeguard for Logan as he swam. I asked mom if she would jump in to save him if he needed it. Mom answered “that she would not because she would be the first to drown.” We all had a good laugh as we continued to drag Ruthie to the swimming pool.
My understanding about Alzheimer’s is that every individual who has gets it acts differently. My mom may refuse to do anything and stay locked up in her home, yet I am so grateful that she still has enough good moments, a sense of humor, wisdom and a quick thinking mind. She’s great with spelling and counting, although she has no memory left at all. I must correct myself, because my mom still knows who I am, which I hold onto and treasure every second of. She also can still manage, or should I say survive, in her own home, although she is not capable of doing much. She is sweet, not angry or bitter and greets most everyone with a smile on her face and enthusiasm in her voice.
So all in all given that my mom has Alzheimer’s (which I cannot make disappear) her health issues are minute. Are we blessed given the situation? Some people may say no, and I have to say yes. My mom is happy and in no pain and while she can still laugh, speak, eat and be more aware than not, my cup will remain half full, and I will continue to cherish all that we still have, and not what we do not have.
Bye, bye Florida and hello to New York, until my next trip, which will be in the beginning of December.
BACK HOME –Oct 2011
Saturday morning when I called my mom not sure what she might sound like, would she be upset, sound down or lonely? Not Ruthie. Mom sounded like she was walking on water. She was upbeat, alive and quite energetic. I told my mom how much I loved her and that I’ll be back to see her in eight weeks with my husband. Mom said “how wonderful, but why so long?” “Mom I just saw you two days ago with my son Logan”. Mom answered, “You did? I do not remember any of it”. That’s okay mom, you still remember me, and for the moment that’s all that matters.
Tuesday, October 18, 2011
MOM THE LITTLE BUDDHA (Day 2 of trip)
Mom awoke around 8:30 AM the next morning and again was in a very good space. My brother and I took her to an adult center day program that had other Alzheimer’s patients, to be interviewed. Mom did not want to stay although she answered all the questions that the social worker asked of her, and mom was accepted. She was cute, and as we exited she was sure to perform her repertoire of dancing and singing for the social worker.
After the interview we all went to lunch and ate outside by the ocean, which was quite lovely. On the way back I was sitting with my mom in the back of the car. In between her questioning us if we were almost at her house mom heard me say” in my next life I would be an…,” and Ruthie my mom, the little Buddha interrupted me and said, “Lisa don’t worry about your next life just stay healthy and happy in this life”. I turned and looked at her and smiled, with the thoughts of how sharp at moments she still can be.
That evening my son Logan had left the room for a few minutes. My mom turned to me and said, “where did that nice young man go?” “Mom, that nice young man is your grandson”. Mom said “he is?” with surprise in her voice. I also heard my mom ask Logan during the evening if he had any brother’s or sisters. My brother said that mom absolutely knows Logan, she was just confused.
I had also questioned my brother if mom knew that she has Alzheimer’s. I’ve been asked this question several times and never knew the correct answer. I knew that mom and I never spoke about it. “Did mommy know that her brother had Alzheimer’s?” I asked. Gil answered that he didn’t think so, that they never had spoken about it. Ruthie’s younger brother had died from it over three years ago. At this point does it really matter if my mom knows or not?
To be continued……
Monday, October 17, 2011
Trip to see mom- Oct 2011(w Logan)
RUTHIE’S SWEET SMILES (October 2011-visit to mom’s)
My much awaited and anxious trip to see my mom was a wonderful surprise as my son Logan and I arrived at mom’s house.
My brother Gil picked us up at the Ft. Lauderdale airport and when we arrived at Ruthie’s home we found mom asleep and fully clothed in her bed. The time was 2PM in the afternoon. Mom’s caregiver had left my mom around noon and although I had called Ruthie from the airport before our flight had left, and my brother had called and told her we we’re coming she could not remember. Or did she? Gil proceeded to enter mom’s room because she was use to seeing him once a week and I did not want to perhaps jolt or frighten her. I also thought that after my mom would wake up that it could take a little while to adjust.
Not my mom. She came out of her room happier than anyone could imagine. She was singing and started to dance with a big smile plastered across her face. Wow, did my heart lighten up and I was left feeling so much calmer from my much anticipated trip.
If my mom could pick a good day on a scale from 1-10 this was real close to a ten. My mom, although not the mom who raised me, but for a woman who is 87 years old and lives alone, and has Alzheimer’s for at least 6 years(maybe longer)she was amazing. Her laughter filled the room with much humor, and she was sharp, quick and spontaneous with whatever she said. I asked Gil if mommy is usually like this when he visits once a week, and he answered, “no, she’s just so happy to see you and Logan”. Of course when we took her out to eat she only wanted to go back home and even when we were trying to get her out of her house she did not want to go. Mom only wanted us to bring the food back so she could remain in her safe haven.
We finally got mom out of the house and she did say the whole time that we were out, that she wanted to go back home. Ruthie ate very little and she said that she was not hungry. Early evening as mom stayed awake, she started snacking on chocolate covered donuts so I made her a snack that she finished and she was still as happy as could be.
Logan and I were exhausted from our early arrival at the airport and I was able to convince my mom to get undressed and get into bed around 8:30PM. I think my mom could have stayed awake longer than me. I reassured her that when she awoke in the morning that Logan and I would still be there. Mom asked where we would be sleeping and I showed her the second bedroom, and then she asked me where she was going to sleep. It’s interesting because every night or day my mom takes herself into her bedroom, which she has done for the last twenty- two years and puts herself to sleep.
The other interesting thing that I now understand is that my mom never wants to get undressed nor put on her nightshirt when I stay over. She insists on going to sleep in the clothes that she wore all day. This time my mom explained that if she stays in her clothes she’ll be all dressed in the morning. I tried to reason with her, which I finally accomplished, as my mom under her breath said “staying dressed would be much easier for me”. Now I understand and perhaps Ruthie’s reasoning isn’t so wrong. To be continued.
Monday, October 10, 2011
Two days are left before Logan, my son, and I board the airplane to visit my mom and my brother. As I sit down to write this blog I feel lots of excitement. During the last week I also felt at moments that my stomach was filled with butterflies, or should I say, a nervous feeling for how my mom will be when we finally arrive.
The last few days she has been absolutely amazing. She's been quite cute, rather sharp and cheerful. I tell her everyday, for the last two weeks that Logan and I are coming to visit her. Mom does not remember from one day to the next, yet maybe somehow she is remembering even though she does not remember. I sound like I am speaking in circles yet perhaps someone can understand what I am trying to say. Or maybe it's just my excitement and imagination that is creating any of this.
I remind my mom about how tall Logan is (which is just shy of six feet ) and tell my mom that Logan plans to smother her with kisses. Mom and I laugh about the fact that she is only 4 feet 9 inches tall and that Logan will either have to pick her up, or mom will have to stand on a table. Ruthie replies with "well Logan can bend down to kiss me ,or if I could wear those really high shoes." Then mom adds in with much humor," I'm just lucky that I stopped shrinking or maybe I'd disappear," which leaves us both laughing.
"Mom I hope you realize that I will be visiting with your favorite grandson." Mom finds this really funny and says" he's my only grandson"."Mom even if you had 10 grandchildren wouldn't he always be your favorite?" Mom replies with "absolutely".
My brother Gil told me that my mom's Medic Alert bracelet just arrived in the mail. We want mom to wear it everyday in case she ever goes out and wanders away.This is highly recommended by the Alzheimer Association. So far, we've been so lucky that this has not happened. You see my mom still lives alone. I have no idea how she is still managing with only having six hours of a caregiver each day. I'm not too excited about this, yet this is an entirely different converstaion. Anyway, my brother told my mom that Logan sent her the bracelet and Gil shared with me that mom was very happy as he put it on her wrist. The next day when I phoned and spoke to Elaine her caregiver, she said that my mom was not wearing the bracelet. So of course I explained to my mom that Logan sent it to her and wants her to wear all the time . Mom say's "okay" and I know that means nothing. Maybe we'll have to figure how to permantely place it to her wrist.
The other day Elaine and my mom were making blueberry muffins together, and I asked my mom if she'll bake me a cake before we arrive. My mom laughed and said that I should just bring one and that she'll give me back the money. The big question of the day for me is ,was my mom always as sweet as she is now ?or is it all the blueberry muffins that she's been eating. Love you mom and I can hardly wait to see you, all though to be perfectly honest, I am somewhat nervous about my visit.
Fact-Every 69 seconds someone is diagnosed with Alzheimer's.
Wednesday, October 5, 2011
This picture was taken approximately fifteen years ago,after my dad passed away.
THEY CALL IT FEELING’S
Monday morning after our return trip (before we attended my father- in- laws funeral) I called my mom to say hello. I was not going to mention that I missed her already, or how I loved seeing her. I did not want to bring up anything that might set her off again with such unhappiness. My mom answered ‘hi sweetie “and I said what is “sweeties “real name and my mom answered with” Lisa, the same name as mine”. I smiled and said mom I love you, and only spoke for a few minutes before we hung up. So to protect my mom from any pain I decided not to share any of my feelings with her. Feelings of how much I wish I could see her, hug her and take care of her, and even more, of how I wish we lived nearby each other.
On Thursday my mom once again had words of advice and wisdom for me. I mentioned to her that I was not going to sit Shiva with my husband and his family again today. I had been doing it every day and tomorrow it was over. My mom said “you need to do what is best for you and sitting Shiva or not will not bring him back”. As we say after prayers, Amen.
Friday morning when I called my mom and spoke to her she seemed okay, maybe not as cheerful as other days yet fine. Towards the end of our conversation which she had just spelt for me plantation, coconut and pineapple (in two seconds flat) I asked my mom what is (my son) her grandson’s name who she just saw a few days ago. She did not know Logan’s name. Today she did know my name and hers. My mom has only one grandchild that she absolutely adores and that his name has disappeared from her mind brings me much sadness. I feel that my mom is truly slipping away. She has recently in the past forgotten Logan’s name and did once or twice while we visited her this past week. Now it hit me in a different way. How much time does she or I have before she forgets my name and then who I am? No one knows the answer to this. I wonder if she feels frightened and confused about what is happening to her. I know that whatever time we have left is getting closer and I know that I need to cherish all that we still do have. Yet isn’t the brain amazing? My mom just spelled coconut, pineapple and plantation in two seconds and yet she cannot remember her grandson’s name.
Logan has not seen his grandmother in a year. We will be returning in exactly one week. As usual, my trips seem to bring up both feelings of excitement and fear to see how my mom is now. Although I have the privilege to speak to her each and everyday seeing her and being with her is definitely not the same.
Monday, October 3, 2011
One year ago Logan and I were getting ready to leave for the airport in several hours, after visiting mom for a couple of days. I told my mom we would be going back to New York. Mom seemed totally in the moment when she said “why are you going back”? I tried to explain to her why, and my mom immediately shared all of her feelings with us. Something I don’t really remember her ever doing in this way.
My mom for at least one hour kept repeating how upset she was that we were leaving. She said she didn’t want to be all alone. Mom comments were in a forceful way “what will she do all alone”? She then asks us” why can’t I or we stay “? She make a strong statement that she feels lonesome already, and that she’ll just be left all alone, with her television with nothing to do.
Logan had just finished cooking for her his famous omelette that she use to love to eat. Mom said” I’m too upset I do not want to eat”. She then asks me where her husband is. Except for this statement, since my dad had passed away fifteen years ago she seems quite lucid. Mom then says that when we all leave she will be miserable. She keeps repeating how lonesome and miserable she will be. She says she’s real depressed and hates being alone. In all my years my mom has never, ever said anything like this. I do not recall her putting any guilt trips on me. This was never part of her personality. It was breaking my heart as well as Logan’s. Regardless of all the times I did not get along with my mom she rarely ever tried to make me feel guilty. She was always thinking of me first with no selfish bone in her body (to me, or as I think of it to anyone else). Mom eventually lightened up, although it took some time, and Logan and I did not mention our departure again.
We took out cards and started to play the game of war with her, and not until we left hours later, did the strangest thing happen. I went to say goodbye to my mom in a light way, as if to say I’ll see you later, not like I was getting on a plane and I’ll see you in a few months. My mom looked at me and said” what is your name”? In shock I answered, my name is Lisa and my mom replied” that’s funny, my name is Lisa also, yet I call myself Ruth Elian” (which is her name).
As I have felt deep in my heart at other times, that somehow my mom, has her illness pop up to protect herself from the painful hurtful memories. In this case it was that Logan and I were leaving. As far as my knowledge my mom has never, up to this point forgotten my name. Is my mom protecting her heart from hurtful things? Something I may never know. I certainly do find this to be pretty profound.
Logan I will be returning to see my mom in 1 ½ weeks. One thing has changed for certain. Whenever I leave from visiting my mom, whether I am alone or with my husband, I simply say (feeling some guilt),”bye mom, I’ll see you later”. For I know that my mom will not remember what I said ,and I never want to go through the guilt I felt and the heavy heart that she bestowed upon us as we departed. I do get choked up, because what I really want to do before I leave, is hold my mom and tell her how much I’ll miss her. Now I just give her a few pecks on her cheek trying to make no big deal about saying goodbye.