Friday, March 30, 2012
FEELINGS OF MY MOM
This week I had committed to volunteering at a nursing home that was filled on one floor with dementia patients. I questioned myself why I was doing this, and thought of cancelling. My thoughts of course were about my mom who suffers with Alzheimer's disease . I did not truly understand why I would place myself in such an atmosphere, that would only bring up my feelings about my own mother. Yet I felt that since I made the commitment I needed to live up to it and at least go this one time.
Approaching the building I felt a heaviness and took a deep breath as I proceeded to go inside. I would be assisting with the piano player who also sings to the patients. I know how much joy singing brings to my mom, and I thought that it would be giving back, to perhaps bring some joy into others lives.
As I sang along, I was touched by a lovely lady who sat directly next to the piano player. I was told that she did not really speak anymore, yet each week she came to here him sing and play. I witnessed her starting to come alive and watched as the melody came out of her lips. Our eyes connected as I sang the melodies. I smiled at her and her lips seemed to smile back. She reminded me of my mom, as tears slowly filled my eyes. I wondered what if anything she might have been feeling ?
I thought about my own mom, and wondered what at moments does she feel? Feelings that she can no longer really express, because the moment after they are felt, they just seem to vanish. Although, as of now my mom still has some life left. Today she did ask me when I would be coming to see her, and expressed how very much she missed me.
This sweet lady that I briefly met this week deeply touched me. I had this warm feeling of just wanting to take her in my arms, as I so often wish to do with my own mom. And then to tell her not to worry, that everything will be okay. I realized that one day, and I do not know when, this could be my mom. That her Alzheimer's will eventually win, and rob her of all that she still has left.
Just as I was leaving this sweet lady whispered to me thank you, and we both smiled, as I gently kissed her on her cheek, and once again tears for my mom swelled in my eyes.
Leaving to go home I had such a yearning to be able to see my mom and to hold her and touch her. I shared this with my husband later that evening and for the rest of the night and into the next morning I had an overwhelming sadness, and wondered what my mom, and this lady were doing at this very moment.
Maybe deep down what I really want is for my mom to be able to hold me and squeeze me and tell me that everything will be alright. Perhaps, like the picture, I just want to be that little girl again and have my mom take care of me. As we know life does not go backwards and my feelings of wanting to be protected and cuddled by mom can no longer exist. So as each day goes by, I can hold on to all that we have left and remember all the special moments of my childhood.
Fact- 5.4 Million Americans have Alzheimer's. Alzheimer's is worldwide epidemic having no cure.
Wednesday, March 28, 2012
The facts are astonishing. There is no cure and no prevention. Please help us spread awareness about Alzheimer's. We need your help.
5.4 million Americans are living with Alzheimer's disease. One in eight older Americans has Alzheimer's disease. Alzheimer's disease is the sixth-leading cau...
Friday, March 23, 2012
ICE CREAM SUNDAE
My mom has become a real sweetie. Maybe as sweet as vanilla fudge ice cream. Lately she has had glimpses of her memory back. First she heard someone being called Arthur on a television show and mom said to Elaine her caregiver, " Arthur was my husbands name". Elaine has been with my mom for over two years and she never heard my mom mention his name. And next it has been my mom's miraculous memory about being promised ice cream.
Trudy who is Elaine's daughter also takes care of my mom. When I called the other day Trudy proceeded to tell me about my mom's conversations and memory about ice cream. It was so cute and innocent that not only did it make me laugh and smile, it also had me going around telling friends about it.
Three days later my mom who cannot remember who my husband of thirty years is, seems to keep remembering and reminding her caregivers that she has been promised ice cream. I have heard for several years that my mom loves sweets. As a child I remember that my dad was the sweet eater. Neither of my parents were overweight, yet my dad use to love to have sweets. Mom seemed to have enjoyed them also, yet since she has Alzheimer's I've been told that she just craves them. Of course this is not what we nourish mom with. She's been allowed an occasional donut or ice cream yet we try to have her eat a well balanced meal.
Anyway the last visit to her doctor my mom had lost two pounds. So Trudy told my mom that if she ate all of her dinner she would give mom some ice cream for desert. My mom ate everything and as a child might do she waited anxiously to be served her treat. The next morning after my mom ate her breakfast and finished everything off her plate she asked Trudy, "aren't I going to have the ice cream you promised me"? Trudy said "Ruth not for breakfast". My mom who cannot remember that I even called kept repeating to me about having her ice cream after each meal that she finished.
This silly childish thing had my brother and I quite excited. My brother and Elaine think that it's the coconut oil that they have been giving mom for the last several weeks. My brother read an article about it and he decided to try it on mom. Regardless of what it is, as long as my mom is happy and having fun that is all that matters to me. I really cannot believe that I felt such a thrill to hear my mom tell me each day, that she had been promised ice cream.
I told my mom that when I come to visit in several weeks I promise to take her out for a big vanilla fudge sundae. We both laughed and whatever joy my mom is recently having I also realized how much more it effects Elaine and Trudy's day. Yes they are the loveliest and kindest people and having a job as a caregiver is not an easy one. It takes a very special person to be able to do it. They have both shared with me how lovely and nice my mom is, yet taking care of an Alzheimer's person for twelve hours each day certainly can be draining. So as excited and uplifted that I felt hearing the story, you can only imagine the fun they had telling it.
laughing as I heard my mom in the background both singing and laughing as well. They had just finished dancing. As I said goodnight I also said "thanks Elaine for calling and please, just keep having fun".
Last night I received a call from Elaine who was laughing as I heard my mom in the background both singing and laughing as well. They had just finished dancing. As I said goodnight I also said "thanks Elaine for calling and please, just keep having fun".
Saturday, March 17, 2012
IS THIS A DREAM OR A NIGHTMARE ?
On Saturday around 10:30 in the morning I received a phone call from Elaine my mom’s caregiver. Elaine phoned to tell me that since she could not reach my brother she would like permission to take my mother with Trudy, her daughter and her grandson to the beach.
My answer was that I thought it was a lovely idea, and shared with Elaine how my mom use to love to go to the beach. I also explained to Elaine that I thought it would be quite difficult for my mom to actually walk on the beach and be in the hot sun. I reminded her that because of mom’s macular degeneration the bright sun and the reflection of the water would blind her vision. I was just happy that my mom would be getting out and had total trust in Elaine and Trudy.
That was the last time in two days that I had any contact with my mom or her caregivers. I speak to my mom everyday and after not being able to reach anyone, no matter what time I tried or whose number I called, by early evening on Sunday, I started to feel concerned and frightened.
On Sunday I was with my son during the day, so I was a little preoccupied. I actually had forgotten that I was unable to reach my mom. I now wondered that if my mom was in a hospital my brother or Elaine would have surely contacted me. Could all the phone circuits be out of order in Florida? I knew that was highly unlikely. Finally that evening my brother called me back around 9PM and reassured me that he had spoken to my mom around 12:30 that day. He agreed with me that I had a reason to be upset for neither Elaine or Trudy answered their cell phones or called me back after leaving several voice mails. They split the twelve hour shift of taking care of my mom, so where were they? My mom’s phone just rang and rang, and all I was left with was total silence.
I tried again between 8PM and 8:30PM when my mom is ready for bed. Still at this time her telephone just continuously rang. Where could she be? I felt so helpless and there was absolutely nothing I could do.
As I went to bed I had a thought of what it might feel like when I can no longer speak to my mom. There was a feeling of a hole and an empty space in my life. When I finally fell asleep that night I had a dream about by mom. It was a lovely dream. My mom was by a beach or a nursing facility, and she seemed to have come back to life. She was changing her clothes and having conversations with other people, not exactly as my mom use to be, yet she seemed free of Alzheimer’s. My mom appeared to be whole. The dream was so surreal. Yet when I awoke the feelings of heaviness were still with me.
Was it the fears of knowing that one day even if my mom is still alive I may not be able to speak to her? That I may not hear the sound of her voice? Or was it a deeper fear, that one day my mom will be gone. I have so many feelings, although on most days I seem to be able to stay in the moment. For the moment is truly all that I have.
Was I upset because I could not speak to my mom or was I upset for the unknown? Did I awake to a dream or was it a nightmare, disguised in its own reality? As I speak to other adult children whose parents have Alzheimer’s this seems to be a similar fear. We sit, we wait, we watch as our parents slowly disappear from this world.
FACT – Every 68 seconds someone in the United States is diagnosed with Alzheimer’s disease. Currently there is no prevention and no cure.
Friday, March 9, 2012
LITTLE THINGS CAN MEAN ALOT
My mom grew up with a love of books . In the summers her parents took her to the country where she would spend hours reading under a tree. I remember as a child, how my mom delighted in sharing this experience with me. My mom loved words as much as she loved reading. One of her favorites books was "Gone with the Wind".
My mother was born in 1924 and in her teens there was no such thing as a televison. I think that her mind and love of reading made it possible for her to only imagine and see what it might have been like to travel the world. My mom always had a quest for learning something she took well into her aging years.
Today my husband and I were going to see a tour of the New York Public Library( 42nd St & 5th Ave.). It is a treasured New York City Landmark. Probably rated as the greatest library in the United States and ranked very high in the world. The collection of books and the beauty of this institue can take ones breath away.
Yet I, as a young child did not share my mom's love of literature. I excitedly shared with her about my planned trip to visit the library which she had very little response to. She did say "oh are you going to buy a book"? So somehow, my mom was able to connect the dots in what a library might be. Her love of literature, reading and words are all but now gone. Yet she still can spell and is actually pretty good at it.
Her disease has not only stolen from her most of memory, it has also stolen her love of reading. With macular degeneration and no concentration reading for my mom seems to be impossible.
I tried to lighten the conversation ,probably more for myself than her, and shared with her that maybe one day "our book"will appear on the shelves of the library. Mom answered with "maybe one day, one never knows".
I smiled to myself because somewhere as my mom slips away there always seems to be some shimmer of light as her words of reason still flow from her.
This may not seem like a miracle for most people, yet for someone who has had Alzheimer's for at least 7-8 years my mom seems to be holding on. Of course not in many ways, yet the ways that are left for me are stilll so dear to my heart.
Each day I get to love my mom some more and to share with her whatever we have left. Each day that I hear her say to her caregiver when I phone ," oh my daughter's on the phone" means more to me than words can really say. So to my mom who has become my best friend I will also say "little things can mean alot". Thanks mom, for who you are.
Saturday, March 3, 2012
THOSE SPECIAL MOMENTS
My mom has really been doing great the last couple of weeks. Will it last? Who knows, and for how long? It doesn't really matter. I just hold on tightly to all the love that she fills my heart with, and all the smiles she adds to my face.
Today my mom started to speak to me in Yiddish. I think I recall that my grandfather spoke alittle of it when I was young. Although he came here as a child from Europe he learned to speak perfect English. My mom sounded great and I was teasing her about her "new" language. I requested some lesssons from her, for as a child I never heard my mom speak Yiddish. As I hung up the phone, I laughed and was totally amazed ,for my mom who cannot remember what she ate for breakfast, is now easily speaking in another language to me. Who know's where this came from. I immediately called my brother and shared it with him and his response was "are you serious, mom's speaking Yiddish". I answered, "I sure am".
Just the other day I shared with my mom what I had recently written about her. I told her the title, "My Very Special Mom". She thanked me and said that it was quite a compliment to her. "Mom, if I didn't mean it I would not say it". We both laughed and she said that it was still very sweet of me to say these things. To keep mom's mind stimulated I asked her to spell compliment". Mom spelt it correctly. I then asked her to spell several other words, which she also correctly spelt. Then out of the blue, my mom said "I don't want to spell anymore. "Why"?, I asked. My mom replied with that she was in bed and didn't care if she spelt or not.
"Mom it's 11AM why are you in bed"? As if I was hearing a young child my mom said, she did not know that it was so early, and asked me what should she do"? "Mom are you tired"? Mom answered with that she didn't know. She suddenly went from spelling and sounding so sharp, to now sounding like a lost child.
Here I go again with this overwhelming feeling of how I just want to hold her in my arms and to cradle her like a child. I want to have her near me to tell her not to be afraid that everything will be fine. Yet I know this is not how it will be.
Is it my mom that I want to hold or is it the fears that lie deep within me? These feelings came to me from my heart not from my head. They can at moments scare me, and at other times I forget about my mom's illness and am able to just love the special moments, that we still can share.
There seems to be alot more attention to Alzheimer's lately. I have listened and read in much detail about different findings and the optimistic feelings by neuroscientists who believe that there will be a major breakthrough within fifteen to twenty years. This will not help my mom or the millions of people who now suffer around the world with this disease. It probably would not even help me if I were to get Alzheimer's, yet I can only imagine and pray for a world free of this disease. A disease that only the families that are stricken with can truly understand. A disease that somehow can wipe away a whole person life as if it never existed, leaving them with absolutely nothing.
So for now my mom and I still get to sing and laugh and I get to love her so completely, as she still puts a smile on my face and joy in my heart. What we now can share are very special moments that I will always treasure.