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

by Hirsch, Lisa R.

  The next day when I phoned, Mom wanted to know when I would be coming to see her. Although I had just left, she had no memory of my having 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 her I feel like I’m getting sick. I return feeling trapped and perhaps helpless. I feel helpless in the sense that there is nothing that I could 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 boggles my mind. Since it is my mom, it also breaks my heart in two.

  I want to hold her and be able to protect her, a feeling that I share for my own child. Our roles have reversed, although I still get glimpses of my “real” mom. There are parts of her at moments that are still able to shine. Either way for me, there is a pang that still remains in my heart.

  On Thursday my spirits finally lifted after I spoke to her. My mom was having a great day. She was alert, sharp, and sounding happy. It’s amazing how much lighter I became. I told her that she was my favorite mom. We both giggled as she then said to me, “You’re lucky because I’m your only mom.” It was only three days ago that Mom thought she was my friend and not my mother. I shared with her that she sounded so happy, and she responded that she is always happy. This was a blessing that I loved to hear.

  I know that this may not last, yet I loved our conversation. I feel happy and excited, and I rejoice in the happiness that today she was able to express. It’s amazing from one day to the next how she can change. Surely what a difference a day can make.

  COMMENTS

  Thanks for continuing to write and share, Lisa. It’s a journey you and your mother are on. Many others are on the same journey relate to what you share. Merry Christmas!

  —Martha

  I really enjoy your blog. I hope you will find solace in keeping this journal. I appreciate reading about how much you love her!

  —Sally

  I stumbled upon your blog from Caringbridge on Facebook. As a med aide/caregiver in a memory care unit, I have the honor to take care of some wonderful people who become like family to me. Although we “see” what families are dealing with, we never truly “see” it. The words you write really touched my core. To get a glimpse of your feelings and struggles and happy times with your momma is a blessing. Bless you and your mom!

  —Christine

  I also can relate to your posting. My mother cannot communicate anymore, but I feel that visiting is so important at any stage of dementia. Even though she does not recognize me anymore, I know holding her hand and being there makes a difference. I grab what I can and make this a “good day” experience no matter how little a ray of sunshine beams down into the grey clouds of this disease. I wish you and your mom many more good days. Dementia is so hard.

  —Elissa

  Lisa,

  Her whole life and existence will never “disappear” because she has a daughter like you, who will always remember and cherish the “real” mom. Sometimes I have to struggle to remember my “real” dad, and not the man who merely existed before his passing. But then I look at great pictures of him, like the ones that you’ve posted here of your sweet mom, and the good memories come flooding back. Best wishes to you and your family. Keep on keeping on. Yes, each day really does make a difference.

  —Anonymous

  Lisa,

  I can completely understand all of the different feelings that we go through while on this journey with our loved ones. My mom is in the very late stages, is now having issues swallowing her food, and cannot communicate what she needs or wants, so I am her voice. This is a very horrible process to have to watch someone you love go through. But, even at this stage, I watch mama have really good days where I know she is aware that I am there. Then there are the days where she just stares off into space and I practically have to get in her face to look at her. I lost my daddy just four short years ago to stage 4 colon cancer and am not ready for my mama to go be with him. Mama and I have always had a close relationship, but this has bonded us that much closer, if that was even possible. I’m sorry if my comment has upset anyone in any way. I am just needing to reach out to as many people as I can. Hug your mom and tell her you love her as much as you possibly can. Make as many memories from this journey as possible. I hope you had a Merry Christmas and will have a Happy New Year!

  —Becca

  January 16, 2012

  Is This a Dream?

  Iawoke today to a rather upsetting dream, which made me think immediately of my mom. It was of a woman lying in what looked like a hospital bed, with no movement as if she were almost dead. To me the image was of my mom, and it left me feeling quite sad and empty.

  I’d like to go back a few days from today and explain what has transpired with my mom. We had a magical conversation on the telephone the other day. She listened carefully as I read her a section of my blog/book about her childhood. Mom was delighted and remembered where she was born, where she grew up, her parents, her dear friend Jeanie, and her love of reading books. With enthusiasm she made comments as I read to her. I hung up the phone and was left with one big wow! This was truly amazing and a moment that I would not forget.

  The next day Mom still sounded good, and I asked her if she was going to her clubhouse. Mom said to me, “No, I am not going to the clubhouse. I’m too busy.” I laughed and joked around with her about what could she be so busy with. “Mom, are you going to work, or are you so busy cooking dinner?” She quickly answered no to both.

  I was at the moment thrilled that Mom was able to remember that where she lived had a clubhouse. Up to then for several years, she had claimed that there was no clubhouse, which at one time was a place she had enjoyed visiting.

  The following day when I called in the morning, my mom was hallucinating. I could not believe what I was hearing her say. She insisted that she wanted to go to her house and that the place she now was in was not her home. You see, Mom had lived in her home for twentythree years. It was a place that she had shared with my dad, a home that she said she would never leave. Today this was not what she was saying. I wanted to hang up the phone and run right over to her. This is impossible since we live in different states. I felt so frightened. How could any of this be happening, when only yesterday Mom was doing so great?

  I knew that my brother was visiting her today, so I hung up and I called him immediately. He arrived at Mom’s around 2:00 p.m., and hours later she was still hallucinating. The second my brother arrived, Mom insisted that they leave, which is something she never wants to do. She told my brother that she lived with her parents and that she wanted to go home and be with them. My brother told her that her parents were no longer alive, and once again she insisted that they were.

  My brother decided since she was hallucinating for so many hours, that he should bring her to the hospital. Something had to be terribly wrong. They admitted my mom and found that she had a urinary tract infection and put her on an antibiotic. (I have since learned that this can be common in women who have dementia—something my brother and I were not aware of.)

  The second day in the hospital, Mom was speaking to me on the phone like she was on speed. She had sounded the same way as the day she was hallucinating. The only difference was she was now in the hospital, which left me feeling a little more secure.

  This morning when I spoke to her, she sounded much better. I told her how much I missed her, and my mom then said, “Can you come over when I get home?” “I’d love to but I cannot get there immediately.” She then said, “Lisa when was the last time you visited me?” My heart sank as I answered, “I was at your home four weeks ago.” She then said, “You’re not a good daughter. That was a long time ago.”

  “Mom, I live in New York and you live in Florida. I cannot just run over.” With such clarity she answered, “Oh, I forgot that you live in New York.” “Mom would you like to move back to New York so we can be together?” She then s
aid, “Not really. I lived there for so many years and being in Florida is now like a vacation for me.” Some vacation, I said to myself.

  I shared with my brother this morning that somehow I felt that I might have been responsible for her craziness. I went on to say that I had just read to Mom about her childhood, and maybe somehow it sparked a memory for her, a memory like a dream that stayed imbedded in her mind.

  I might have reawakened for her memories of long ago that have been lost, for her strong desire to go back home and be with her parents. Was my mom scared while she seemed to be hallucinating? Or was she perhaps at peace, feeling the security and warmth of her childhood and the love of her parents? Was Mom awake walking through her dream? We all have had dreams that have felt so real, warm, and comforting, that we don’t want to wake up from them. Could this be what had happened to her?

  For the moment, my mom seems a little better. I can hardly express how good it feels. It gives me glimmers of hope that I know will absolutely not last. I am trying to stay optimistic and appreciate the time we still have together. I do not know how long this will last. I love my mom dearly, and she still carries with her so much strength and courage. My mom continues to inspire me each day, and for this my mom remains my hero.

  COMMENTS

  I enjoyed reading your post about your mom. Those confusing days are difficult to watch, and those moments of clarity are what we hang on to. I can tell you love your mom very much. Take care.

  —Lillian

  This brought back memories for me. I just lost my mom—August 14, 2011. She had Alzheimer’s. I had really lost her years before. Alzheimer’s is such a sad disease. My hope is that her world was safe and secure with warm memories and not a scary, lonely place for her. Spend as much time as you can with your mom, and just love her.

  —Patricia

  Lisa,

  I am a daughter that also has a mom suffering with a dementia-related disease. I couldn’t help noticing some similarities between your mom’s condition and my mom’s. Have her doctors done any checking into dementia with Lewy bodies? I mention this because this is the latest diagnosis my mom has been given. Lewy bodies is a fairly rare condition that is very hard to diagnose. It is a condition where a certain protein collects around cells in the brain and block “neurons” from getting through. It causes a lot of hallucinations, dreams that they are actually living out, and many other things. I only mention this because it might be something that has been overlooked. This is fairly new condition and has only been known about mostly since 2008. It is named after the doctor who discovered it. If you go online and type in “Lewy bodies,” you will get a great amount of information about this. They have yet to call it a disease as the only firm diagnosis can come with an autopsy. The patient is diagnosed through a series of questions and background information given by family and staff at the facility where patients are living. By having this diagnosis for our mom, it has helped us to understand her and where she is in her mind, and why. They need a totally different way to be looked after and approached. I hope this will be of some help to you and to perhaps others who do not really understand why their parent is having multi-delusional thoughts, etc. This may not be something that your mom has, but I felt it might be something to have looked into. We only found this by having our mom seen by a geriatric psychologist. He is a wonderful and very young doctor that has just come through much studying of Lewy bodies. I will keep you, your mom, and your family in my prayers. Thanks for sharing your stories—they have helped me to not feel so alone. It’s very hard to see our moms this way. Be encouraged.

  —Joyce

  January 22, 2012

  Is My Cup Half Empty

  or Half Full?

  Ihave been walking around with a heavy heart ever since my mom was hallucinating and ended up in a hospital. This was my awakening that my mom might be ready to go into a nursing home. The thought left me feeling so sad and lonely. My feelings left me filled with much fear. How could I ever do this to her? What will she say, and how will she feel? How could I even possibly think of it? Was I about to do the right thing? Was this best for my mom?

  My mom has expressed many times that she wanted to stay in her home till she dies. I seem to remember that I had promised her that she could always remain in her home. Should I wait a couple of months, which only would be prolonging the inevitable? Maybe she could bounce back. Should I live in hope?

  All this left me with many memories of my mom and dad and how quickly our lives go by. We sit, we plan, and we do not know if we’ll even be around to fulfill our dreams. Lately, I have been awakening most mornings to dreams that are still as vivid after I rise from my sleep. Before this episode I was enjoying my mom completely.

  I guess one could say that I looked upon the situation with that my cup was half full, not half empty. Several years ago, after I learned that my mom had Alzheimer’s, I made a clear decision to cherish every second that we had left, especially since I still had the opportunity to share them with her.

  Today when I called Mom, I was able to have such a fun, uplifting conversation. It lifted my spirits and left me feeling so much lighter. She told me that I had seven sisters and two brothers. The true facts are that my mom has only one daughter, which is me, and only one son. For me I was happy to play along with her, as we both giggled like teenage girls.

  Mom does not remember what is true, and to me this no longer makes a difference. At this point it does not matter. I guess what I need, or so badly want, is to delight in these cute and humorous conversations whether they make sense or not.

  What I have realized is that when my mom is sounding so great she might be in “la la land.” When I catch her sounding a little down, she may be somewhere in her mind, wondering what is happening to her.

  I cannot change or take away Alzheimer’s from my mom, yet I can laugh with her and enjoy the moments that we have left. And guess what? Out of my mom’s seven daughters, I’m still her favorite one. Lucky, lucky me!

  So I wonder, is it better to have my cup half full or half empty? There is nothing I can change other than how I hold everything. I am grateful for all that we still have left, and cannot think about all that is lost. For this my cup will remain half full.

  COMMENTS

  Your story touched me deeply, I lost my mom to Alzheimer’s last July, it’s been a long and hard journey watching her forget who she is and who her children and grandchildren are, and watching her body slowly break down then finally losing her. My thoughts and prayers are with you and your family. Treasure your memories.

  —Nanette

  Be grateful for the cup. I lost Mom three years ago (it seems like yesterday) yet I hear her talking to me today. I cry from the pain of remembering but laugh at what was and keep moving forward

  —Beth

  Lisa,

  What a gift you give us by sharing your story and love for your mother! Your story is so touching and I hope it will help others to focus on those moments of joy and life’s little blessings. What a difference we can make in the world when we see the cup as half full. And I am so glad you are the favorite of the seven daughters! LOL

  —Samantha

  My mom died when I was eleven and my dad when I was twenty-one. I have never had to deal with aging parents. I guess I have to see your cup as half full. I know it must be difficult. You also have to keep her safe too. I have told my children that I don’t really want to go to a nursing home, but if it comes to that point I will trust them to make the right decision. I don’t want to be a problem for them. Your mother sounds like she would feel the same way.

  I hope you won’t be too hard on yourself if you have to put her in a nursing home. Just enjoy the time you have as you are doing. Good luck to you and take care.

  —Denise

  Lisa,

  I was very touched by your tribute to your mother. I must say the story sounds familiar in many ways. However, my mother lost her fight against this disease this month. I am torn be
tween feeling relief that her suffering has ended and the fact that my mother has really died. I spent so much time and energy caring for her for the past few years that I am feeling a little lost right now. I have channeled my energy into raising funds and awareness for the Alzheimer’s Association. However, I still find myself thinking of all the things Mom might need from me. I want to comment on the “you are her favorite daughter” thing you mentioned. How sweet! My mother has three children, two boys and me. The last year of her life I became like a sister to her. She was an only child, so that was a strange concept. However, if she got mad, she remembered I was her daughter! The very last month of her life, she seemed to think I was her daughter most of time. I treasured that. It was a small thing, but as you are aware, all the emotion and difficulties you survive when you have or care for someone with this disease make each little shining moment important. Keep up the good work—awareness is an extremely important tool in this fight against Alzheimer’s. Good luck and God bless.

  —Lena

  February 5, 2012

  A Day Filled With Sunshine

  Today was a really good day for my mom, as were the last several days. My heart seems to go up and down with lightness and heaviness depending how she is doing each day. I know this has to be a normal response and I do not question it. I just know that this is how it is ever since my Ruthie became ill with Alzheimer’s.