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

by Hirsch, Lisa R.

  —Julie

  August 31, 2012

  Because I Love You

  My mom’s greeting to me directly after saying our good morning hellos was, “When are you coming to see me?” “Mom,” I fibbed as usual, “in a couple of weeks.” “That’s wonderful, and who are you coming with?” “My husband,” I replied. “You’re married?” “Yes, Mom, I’ve been married for thirty years.” “I can’t believe you’re married, you look so young. You look like a baby.”

  As I smiled to myself and felt all the sentimental love coming my mom, I also flashed on when I was a little girl, which was many years ago. I thought of my mom in her youth and all the things we did together. That was then and this is now.

  She then asked where I lived, and I answered, “New York.” Mom was able to have a moment of memory for she answered, “I used to come to visit you a lot in New York.” That’s true, Mom, I thought, and you also were born and raised here. New York was your home.

  Mom lived here till she was sixty-two years old. She moved right before I became pregnant with her one and only grandchild. Logan is his name, named after her dad Louis. He will be turning twenty-five in several months. Today, with all the love she has felt for him and all the special moments they shared, he is just a fading memory in her life.

  Last week when I mentioned Logan’s name, she said it sounded familiar to her. Her grandson that she so adored is now just a glimpse of a shadow in her world. I know in my heart that all her love is still there for him, it’s just that she cannot connect all the pieces. Sometimes when we speak of her grandchild, she thinks that he is still a young child. She will ask why I allow him to do some of the things I share with her. She cannot believe how old he is, what he looks like, or his stature of being six feet tall.

  Deciding to lighten the conversation and to have some fun, I asked Ruthie if she’d like to live with me in New York. Mom used to express that her wishes were to remain in Florida. This time to my surprise, she said, “How would I get there?” “Well, Mom, I could come and get you.” “When would that be?” she questioned. “Maybe soon.” “Okay, let me think about it.” Of course this conversation, like so many others, quickly faded into the distance. The next time we spoke, Mom had no memory of it.

  Alzheimer’s, now that I can see what it has stolen from her life and her existence, still leaves me with the question of, “How can this disease just eat away your life, as if it never existed?” It is mind boggling to me.

  As our phone call came to an end, Mom softly whispered to me, “Please come visit. I have a home you can stay in. Lisa, you know that you can come whenever you want, because I love you.”

  At that moment this little lady, who is no longer five feet tall, broke my heart. I wanted to pick her up and hold her in my arms and tell her that everything will be okay. Yes, I know that is not the way this illness usually ends. Yet for now, I still can hear Mom speak those tender words to me. For me, at the moment, this is all I need. I feel all her love and deeply cherish all that we still have, no matter how little it may be.

  COMMENTS

  This is absolutely touching.

  —Anonymous

  My ma has dementia. I am her caregiver as well as being her daughter. She is a couple of years into it and at the moment still remembers who we all are. She has difficulty getting words out that she wants to say or forgets what she wants to say. It is getting more and more like a game of charades. I love her so much, and it scares me what I have yet to face. But I am enjoying every day whilst she does still remember me and will let me help. My heart goes out to you.

  —Alicia

  September 6, 2012

  What Becomes

  of the Broken Hearted?

  This picture was taken in October 2011, with my son Logan, me, Mom, and my brother Gil. Mom looks happy. What I remember about this day was that she did not want to leave her home. We had to force it upon her. Although she’s smiling in the picture, I would not say that she was really thrilled to be out. I think she enjoyed being with all of us, yet having lunch by the ocean and feeling the warm breezes blow by meant nothing to her. For me, I loved the day, because it is not that often that the four of us can get together, especially since we live in different states.

  In the beginning of this week I phoned my mother because I wanted to share something exciting with her. Logan had just gotten an apartment with his girlfriend. I was feeling so happy, yet my eyes were moist with tears. My little boy, who has grown up, finished college, is working, and has been living on his own for the last four years, was now taking his next “big” step. As I see it, he and Julia, after dating for two years, were now making a deeper commitment to one another.

  As Logan has taken each step in his life, they are both exciting and thrilling to me and are quite sentimental. I called my mom to share all this excitement with her. With much enthusiasm, I shared everything, including my happiness as well as my heart pangs. I know that since she is a mother, she had to have similar feelings when my brother and I took each new step.

  While speaking to her, the phone just went silent. Mom said nothing. She didn’t even make a comment, which she has been able to do, nor did she give any words of wisdom. There was just dead silence. Mom had put the phone down. Her caregiver picked up the phone and put her back on. I once again in a more simplified matter shared everything with her. I then asked if she had anything to say. Wasn’t she listening? Didn’t she care? Couldn’t I speak to Mom and have her be excited with me?

  Not this time, and probably not too many times in the future. I questioned why couldn’t she be there for me? I used to love to call her when I needed advice or had something exciting to tell her. Those days seem to be long gone. I felt both sad and lost, and I felt like crying. I only wanted my mom back. Is that too much to ask? The answer is yes. Alzheimer’s seems to destroy inch by inch someone’s entire being.

  My thoughts went deep and dark, and I was beginning to feel such anger to this disease. I had to pull myself together and get back to the lighter side of life, or I could drive myself crazy. Yes, I had to remember other moments that Mom and I can share. I quickly thought of the laughter and all the words we say to one another that are filled with deep love.

  Maybe this was just a bad day for her. Tomorrow will be better. I must lighten up and stay on the brighter side. I wish that I could remove this horrific disease from my mom’s being, yet I know that’s impossible.

  September is World Alzheimer’s Month. We all to need to help spread awareness around the world, and find a cure for Alzheimer’s. Hopefully this will happen in my lifetime, and if not, certainly for future generations.

  I’d like to send to all the families who have a loved one with this disease, and to all their caregivers, much love. Although I felt a broken heart for my mom, I know deep in my heart, that broken hearts can heal.

  COMMENTS

  Wonderful story. I so relate to what you are feeling.

  —Lisa

  I have been planning to call home, to talk to Mom and Dad for almost two weeks now. The calls are tough, but shame on me for not making them more often as you do. I admire that about you. You keep calling. It’s too late now, but I promise I will call my folks tomorrow.

  —Anna

  Your blog and your story is an inspiration.

  —The Alzheimer Society of Manitoba

  Hi—I just read some of your thoughts about your mom. It helps to read about other people’s relationships. I see so many similarities—at times, I wonder, am I imagining things or over re-acting to something. My husband can seem so normal for moments and then be so different. I wonder, did I make a wrong decision when I placed him in a Memory Care Unit, and then I remember all the reasons why I did. At other times, I think, maybe I could take him home and hire help to take care of him. And then I just feel guilty. I feel so alone without him here. I have family and friends, but it is not the same.

  I thought I would feel relief and I think my family expect me to feel relie
f but I feel like a piece of me is gone.

  Thank you for sharing your feelings. It helps.

  —Louanne

  Hello,

  You don’t know me, but I saw your blog that you posted on the San Diego Alzheimer’s Association page. I read through some of your blog postings and love that you are documenting your time with your mum. I’ve been around people suffering from various types of dementia including those with Alzheimer’s my whole life. My mum has cared for them for over thirty years. I did volunteer work with them throughout my childhood and teenage years. More recently I worked as a caregiver for a woman with Alzheimer’s for two years. It was the hardest but most rewarding job I’ve had, she was family to me—like a grandmother, I loved her to pieces and vice versa. Sadly she passed away in spring of last year, shortly before her ninetieth birthday. I’ve been working as a volunteer and intern with the Alzheimer’s Association since July of this year and love it. It is such a wonderful organization, and everyone I’ve worked with has been super nice. I hope to work with them full time after I finish with school. Anyway, I just wanted to send a wee message/hello after reading your blog. Have a lovely week!

  —Suzi

  September 11, 2012

  Interviewing My Mom

  With Alzheimer’s

  “Mom, what does it feel like not to be able to remember something?” She answered, “It is Wow, I not always so bad not to remember everything.” thought. Several years before I had presented a similar question to her, for I often wondered what it must be like. I too sometimes forget some simple things, and for a second I think, Do I also have the beginnings of dementia? I quickly joke about it, although deep inside the question still remains.

  I have no fear of asking her any questions, for I know that it will not upset her. Immediately after I ask her something, it disappears from her memory. Her answer to this same question several years ago was quite touching. Mom had said, “I know that whatever happened yesterday to me had to be nice, whether I can remember it or not.”

  Back to the present, I continue with, “Mom, does any of this frighten you?” Her quick reply is, “No, it’s not scary because if you cannot remember something, you just don’t remember it.” With such wisdom, Mom was able to answer me so easily. She then started to reminisce about her own mother and growing up in Williamsburg and Coney Island, which are both located in Brooklyn, New York.

  “Mom, do you remember your mother’s name?” “Of course, it was Pauline Schnitzer.” “Mom, what’s your name?” “Ruth Schnitzer.” “What was your father’s name?” She simply says, “I cannot remember.” With much surprise in my voice, I respond with, “His name was Louis.” My own father passed away seventeen years ago, yet I wonder if she even knows his name. She must, for it’s my dad, and they were married for almost fifty years. I became brave and questioned her, yet she does not remember.

  “Mom, how many brothers or sisters do you have?” “I have both a brother and a sister.” Wrong again. My mom had only one (younger) brother who died from Alzheimer’s six years ago. I decided to lighten up and move far away from this conversation.

  As we continued to speak I did not understand what she was trying to say, so I responded with, “Mom, I do not understand what you just said.” She must have felt a little frustrated for she answered, “If I was speaking French or Spanish, then you could not understand me.” “You are absolutely correct,” I said, and we both started to giggle like two teenage girls. I was thrilled, because between some things she said, there seemed to be quite a few times that she was lucid. I was able to fantasize for several moments that she did not have Alzheimer’s.

  I returned home almost a week now, and each day that I speak to my mom she seems to have some recollection that I was there. She cannot really express this, although she has questioned me every day as to when I will be coming to visit. Now when I exit from her home, I can no longer have my real goodbyes, for in the past she has gotten quite upset. So when I leave I simply say, “Mom, I’ll see you later.”

  Today my mom shared with a light, upbeat voice that when she woke up she was looking all over her home for me and could not find me. For a moment it made my heart sink. It saddened me that we lived so far apart, yet there was a sound of joy that came from her voice. I knew that she was feeling happy.

  Later in the day I phoned my mom again, just to hear her sweet voice. Her caregiver Trudy said that after I hung up earlier, my mom had been going around her home once again calling my name. Her voice shouted, “Lisa, Lisa, are you here?” Hearing this made my heart ache. Should I jump on a plane and run back to her?

  It’s been exactly one week since I was at her home. After hanging up the phone, it left me with a piece of my heart broken in two. For the rest of day, I kept hearing Janis Joplin singing, “Take another little piece of my heart.”

  I often wonder how this little lady, who stands only four feet, ten inches tall, can melt my heart each day in such a way that I cannot contain my love for her. It seems to overflow with abundance and affection. Although I know that my mom cannot remember anything and may not always be able to express herself and all her feelings, I am still left with some comfort.

  Deep in my heart I do feel that she is not suffering and is relatively happy. I truly believe that it is the families that suffer the most. Either way, Alzheimer’s is a cruel disease that eventually takes one’s life.

  For me, because of my mom I have committed myself to spreading awareness about Alzheimer’s and only hope that what I write can help other families find some comfort. I wish all of you much love, and I hope you know that I truly care and do understand.

  COMMENTS

  Lisa,

  I know how you feel about your heart feeling broken. I am so happy for you, though, that you have such a sweet relationship with your mom in these difficult times. My mother became angry and unpleasant to be around in the last year. Now that Mom is gone (it’s been just a little over a month), I miss her physical presence very much. I found a voice mail from her on my cell phone a couple of weeks ago where she sounded like my “real” mom and not “dementia” mom. Thankfully I saved it, because the very next day after I had it recorded it was auto-deleted from my voicemail. I hope you will always have your sweet memories of your mom, and I’m so sorry that this horrible disease is taking her from you. Mom died on August 8, and while I miss her so much I wouldn’t want her to continue on the way she was.

  Love,

  Annabelle

  Just as she once protected and cared for you, you now honor her by protecting and caring for her, Lisa. Thank you for sharing these experiences. They help us learn from one another by exchanging ideas.

  —The Caregiver’s Voice

  (a virtual support group)

  I thought about my eighty-two-year-old mother-in-law with dementia whom we love dearly. Joy sustains us as well. One thought I just had was that we live in the present more with her, since the past is disappearing. Being with her helps me appreciate the moment—flowers, clouds, scents, color. Reading your post made me feel in good company. Thanks for writing this.

  —Katrina

  September 14, 2012

  Is My Name Lisa?

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

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

  These words that came from her lips just melted my heart. “Mom, would you like me to come and live with you?” Her answer was, “I don’t think that you would really want to do that.”
“In that case, I have a surprise for you. Gil’s coming to see you today.” Mom said, “That’s great, so I’ll see both of you.” With an upbeat tone she added in that she can hardly wait to see her kids.

  I knew that I would not be seeing her for another two and a half months, yet I said nothing. I could try to explain, yet whatever I would say would not be understood and would soon be forgotten. As we continued our conversation, she quickly forgot about my brother coming to visit her.

  “Mom, would you like to spell some words?” As I started our weekly exercise, starting at A and wanting to finish at Z, I asked her to spell England and then Hawaii. She stopped me on both and said, “I never heard of those words.” Mom had never heard of England or Hawaii? What was going on? Can Alzheimer’s have my mom’s world fade to nothing? Fortunately, there were other words she did recognize enough to spell.

  I realized that at this moment there was some confusion. I decided to stop spelling and tell her again that my brother was coming to visit her. “Oh, my husband is coming,” she replied. “No, Mom, Gil is your son.” “I know he’s my son, I just call him my husband.” Okay, Mom, I thought. You’re close but you have this backwards.

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

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