My Mom My Hero: Alzheimer's - A Mother and Daughter's Bittersweet Journey

by Hirsch, Lisa R.

  Fortunately for us, Mom still has enough good moments for me to have a smile on my face and to delight in our daily phone calls. Just today after we sang several songs that neither of us remembered the words to, I said, “Mom, are you my sweetheart,” My Ruthie answered with, “No, how could we be? We’re both girls. If you were not a girl, then I could call you sweetheart.” We both giggled, and at that moment I think even Mom understood how silly our conversation was. I become overjoyed just hearing the sound of her laughter.

  The next part of what I’m about to share was at a moment that my heart felt quite heavy.

  As I sat in the waiting room for a tour of another nursing home for my mom, I was left in deep thought and feeling rather sad. I have seen the dementia floors in several nursing homes only to keep feeling that my mom was not ready for this. Although Mom’s illness will progress, I know that she has some life left in her. Bringing her to one of these places will probably upset her, and the thought of it seems to sicken me.

  My husband has been touring these facilities with me, and we are sadly starting to speak about our own mortality and what might lie ahead for us. I’m sure that if my mom could reason and truly understand what her illness will be doing to her as it progresses, she’d probably wish deep in her heart to be able to say goodbye.

  Mom on most days seems happy, yet she has no idea what day or year it is. She doesn’t knows where she lives, nor can she remember most of the events in her life. I’ve often described her mind like a blank canvas. It is amazing that Alzheimer’s can just remove one’s life, as if it never existed. She has no idea what is happening in the world (which may not be such a bad thing). Although my mom does not remember that I just called or visited her, I know that she can still feel all the love I have for her.

  Life can be great and life can be wonderful. Life can also be cruel and life can be hard. None of us know what lies ahead, so we must truly be happy and thankful for each new day that we have. Each and every day is truly a gift. I know deep in my heart that my mom only wishes for me a day filled with sunshine.

  COMMENTS

  I’ve been reading your blog for quite some time now. I can’t remember how I stumbled upon it, but I am the primary caregiver to my eighty-five-year-old mother who also has Alzheimer’s. Your blog touches me very much as our moms are similar in many ways. My mom is petite, a fiery redhead, who dances every chance she can get. Even her recent onset of hallucinations mirrors part of your journey as well. I know it has to be so difficult to think about having to move your mom into a nursing home. I know I will dread it when the time comes for me. Thanks for sharing your walk.

  —Anonymous

  Bless you for such a beautiful story of love, courage, and faithfulness. I care for my ninety-one-year-old father who also has Alzheimer’s. Some days he cannot remember much of his life or who he is, but I do. No one in a facility would know my father’s history. A caregiver in a facility would not know he was born into a fifteen-member family, raised on a farm with ten brothers and three sisters, that he was married for sixty-three years to my mother, that his beloved son, a police officer, is in heaven, or that when he says I love you, he really means it. As you noted with your mother, I know if my father had any comprehension of his true status, he would have wanted leave this life long ago. I pray daily for a cure for this most heart-wrenching and debilitating disease.

  —Anonymous

  Treasure every moment. I lost my mom to Alzheimer’s on March 22, 2011, at 3:43 a.m. We nursed Mom at home. She stayed in a nursing home for about six weeks while a package of care was put into place. That was the most traumatizing thing for us to do as a family. Only now am I realizing just how brave my beautiful mother was as the last three years of her life were spent in bed. I don’t know how she had the strength, but I do know she always kept her dignity especially when caregivers called to wash her. We always say now, “It’s like a long goodbye,” but the things Mom went through were unbelievable. I’m just glad that as a family we could be with her. I treasured every moment, even down to changing her pad, to feeding her, to washing her hair. If I could just walk one mile in her shoes, then I will happy. I feel so blessed that I am her daughter and my world has certainly changed now she’s gone. I miss her so very much.

  —Margie

  March 9, 2012

  Little Things Can Mean A Lot

  My mom grew up with an enormous thirst for learning and a true love for books. Every summer her parents took her to the country, where she would spend hours reading under a tree. I remember when as I was a child, how she delighted in sharing this experience with me. She loved words as much as she loved reading. One of her favorite books to share was Gone With the Wind. Through my childhood years, she always encouraged me to read.

  In 1924 when Mom was born and later in her teenage years, there was no such thing as a television. I think that her mind and love of reading made it possible for her to imagine what it might have been like to travel the world. She had a thirst to keep learning, something she took well into her aging years.

  My husband and I decided to see a tour of the New York Public Library (located on 42nd Street and Fifth Avenue). It is a treasured New York City landmark that we had not been to in several years. It is 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 institute can take one’s breath away.

  As a young child, I 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 at least say, “Oh, are you going to buy a book?” Somehow, Mom was able to connect the dots to what a library might be. Her love of literature, reading, and words are now sadly all forgotten. Alzheimer’s has taken that part of her world from her.

  Yet since her vocabulary was one of her strengths, she still can spell almost immediately any word that I ask of her. With macular degeneration and no concentration or memory, my mother finds reading to be an impossible task for her, although her spelling skills completely amaze me.

  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 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 seven years, my mom seems to be holding on. Of course, not in many ways, yet the ways that are left for me are still so dear to my heart.

  Each day that is left, I get to love my mom some more. 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 ever say. So to my mom, who has become my best friend, I will also say, “Little things can mean a lot.” Thanks, Mom, for being who you are.

  COMMENTS

  My mother suffered with this dreaded disease for at least fourteen years before she left this world. Alzheimer’s is horrible and to watch a loved one go through it is truly life changing. I am sorry you are going through this. My mother died in 2005, and I am happy that she is now no longer suffering. Much love to you and your mother. Enjoy every coherent moment.

  —Katrina

  Your post brought back memories of Daddy and his love for reading. He loved to read and would read anything and everything. It was a sad time for me when I realized he was reading less and less. So much of his time had been spent reading, and all of a sudden there was more time on his hands with nothing he could do. I know you and your mom are enjoying your special times. Oh how I wish Alzheimer’s had a cure!

  Hugs,

  Dorothy

  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 car
egiver. Elaine phoned to tell me that since she could not reach my brother, she would like permission to take my mother with her daughter Trudy and her grandson to the beach.

  My answer was that I thought it was a lovely idea. I shared with Elaine how my mom used to love to go to the beach. I explained to Elaine that I thought it would be quite difficult for my mom to actually walk on the beach and have the hot sun beating on her. 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 enormously happy that 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 mom every day. 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 and had not tried to reach anyone. I now wondered that if my mom was in a hospital. Certainly my brother or Elaine would have 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 9:00 p.m. and reassured me that he had spoken to mom around 12:30 that day. He agreed with me that I had a reason to be upset, for neither Elaine nor Trudy answered their cell phones or called me back after leaving several voice mails. They split the twelve-hour shift of taking care of her, 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 8:00 p.m. and 8:30 p.m. 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 would no longer be able to speak to her. There was an overwhelming emptiness that I felt inside me.

  When I finally fell asleep that night, I had a dream about her. It was a lovely dream. My mom was by a beach 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 used 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 would be gone? I have so many feelings, although on most days I seem to be able to stay in the moment. 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.

  COMMENTS

  I can’t have a conversation with my mom anymore, so I have to see her in person. When I can’t visit for a few days in a row I get nervous—even though I know the nursing home staff would call me if anything was wrong. I’m being a worried mom to my mother!

  —Lindsay

  It’s a long goodbye, and we know what’s down the road for us. It’s not easy. It’s scary knowing that our moms will forget us. We aren’t there yet with our mom, and it makes me sad to know that that’s going to happen eventually. I cling to everything she says and take notes because it makes me feel more connected to her.

  —Elizabeth

  I think that my stepfather has hit bottom with his Alzheimer’s dilemma. I think he has lost some hearing at almost ninety-four. He is going to see a doctor this week to check on his mental facilities. This is wearing my mother out. She is ninety-one with macular degeneration. She has three caretakers waiting on them both. At least Al is taken each morning to an adult care center for a few hours. Lisa, it is always good to hear from you since your mother is alert and going through some of these problems. Take care.

  —Anonymous

  I miss having a conversation with my sweet husband. I hate Alzheimer’s! I hope you have a lot more time to have talks with your mom.

  —Dotty

  I can still speak with my mother but it’s not the same as it used to be before her dementia. Usually speaking with my mother is not a pleasant experience either. She is usually angry that she is so confused and angry with my father. I miss my “real” mom.

  —Annette

  You are an inspiration, Lisa. Keep the blogs coming. I am a nurse who works with Alzheimer’s patients and have done so for the past thirty years, and you inspire me. Please add me as a friend so I can carry on reading your blogs.

  —Grace

  March 30, 2012

  Feelings of My Mom

  This week I had committed to volunteering at a nursing home that has one floor filled only with people who suffer from dementia. I questioned myself why I was doing this, and had thoughts of cancelling. I did not truly understand why I would place myself in an atmosphere that would only bring up my feelings about my own mother who suffers from Alzheimer’s. Yet I felt that since I made the commitment, I needed to live up to it, and at least go this one time.

  As I approached the building. I felt heaviness. I took a deep breath as I proceeded to go inside. I would be assisting the gentleman who comes once a week to play the piano and sing 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 other people 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 speak anymore, yet each week she came to hear him sing. 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 my eyes slowly filled with tears. I wondered if there was anything she might have been feeling.

  I thought about my own mother and wondered what at moments did she feel? These are feelings that she can no longer express, because the moment after she may think them, they just seem to vanish. Although today Mom did ask when I would be coming to see her and expressed how very much she missed me.

  This sweet lady I met briefly this week deeply touched me. I had this warm feeling of wanting to take her in my arms, as I so often wish to do with my own mother. Then I wanted 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 own mom. One day 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. 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 mother and to hold her and touch her. I shared this with my husband later that evening. For the rest of the night and into the next morning, I had an overwhelming sadness. I 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 all right. 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 wanting to be protected and cuddled by her can no longer happen. 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.

  COMMENTS

  How lovely. What else could anyone say? Keep up the singing. It brings so much happiness to dementia clients.

  —Anonymous

  Wow. This really hits home for me. Thank you so much for sharing.

  —Anonymous

  Wow! How beautifully written and how touching. I can certainly relate to this!

  —Anonymous />
  Can’t hold back the tears.

  —Anonymous

  I am crying my eyes out right now. We think my mother has this. My grandmother had it, and so did her brother and three sisters.

  —Anonymous

  A beautiful story. Thank you for sharing.

  —Anonymous

  March 31, 2012

  Those Special Moments

  My mom has been doing great the last couple of weeks. Will it last? Who knows, and for how long? It doesn’t 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 she started to speak to me in Yiddish. I think I recall that my grandfather spoke a little 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 lessons from her, for as a child I never heard Mom speak Yiddish.

  As I hung up the phone, I laughed and was totally amazed. My mom, who cannot remember what she ate for breakfast, is now easily speaking in another language to me. Who knows where this came from? I immediately called my brother and shared it with him. His response was, “Are you serious? Mom’s speaking Yiddish?” I answered, “I sure am.”

  Just the other day I shared with my mom something 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 and that she felt honored. “Mom, if I didn’t mean it I would not say it.” As we both laughed, she said that it was still very sweet of me to say these things.