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

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My Mom My Hero: Alzheimer's - A Mother and Daughter's Bittersweet Journey Page 5

by Hirsch, Lisa R.


  To keep Mom’s mind stimulated, I often spell with her. I asked her to spell “compliment.” Mom spelled it correctly. I then asked her to spell several other words, which she also spelled correctly. Then out of the blue, my mom said, “I don’t want to spell anymore.” “Why?” I inquired. She replied with that she was in bed and didn’t care if she spelled or not.

  “Mom, it’s eleven o’clock a.m. Why are you in bed?” As if I were hearing a young child, my mom said she did not know that it was so early and asked me what she should do. “Mom, are you tired?” She answered that she didn’t know. She suddenly went from spelling and sounding so sharp to now sounding like a lost child.

  I once again am left 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 and 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. At moments they can 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 so much 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 around the world who now suffer from 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.

  This truly is a disease that only the families that are stricken with can understand. A disease that somehow can wipe away a whole person’s 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 completely. She can still put a smile on my face and joy in my heart. What we now can share are very special moments that I will always treasure.

  COMMENTS

  Hi Lisa,

  I love reading your blogs. My mom also has Alzheimer’s and seems to be at the same stage as your mom. My dad passed away last year, and it was only then how I realized how bad my mom was, as my dad use to cover for her. This disease is frightening, and I sometimes feel I lost both my parents last year. Mom doesn’t believe that Dad has passed, and although she is in wonderful assisted living in South Africa, she constantly sits at the window waiting for his return. I visit two to three times a week, yet it breaks my heart to see her slipping away. Your blogs are dear to my heart, as I feel that there is someone out there, experiencing the same things as my family and I are currently experiencing. You are not alone. Take care.

  —Cher

  Wow, isn’t it amazing and wonderful that your mom can still spell and also speak Yiddish. Alzheimer’s is such an awful thief, robbing the person’s memories, and then it’s so wonderful when we get those surprise memories.

  Hugs,

  Dale

  Lisa,

  This is a beautiful tribute to your mom. What a special relationship you have with her. My mom is in the late stages of Alzheimer’s disease and we just placed her on hospice. This disease is so horrific and devastating.

  Best,

  Sally Anne

  April 8, 2012

  Like a Miracle

  Ihave heard that Alzheimer’s can come and go. Actually it never really disappears, yet there can be moments, even a day, when my mom almost seems not to have any form of dementia. Okay, maybe I am exaggerating a little, although when these moments come it feels like a miracle.

  My brother recently told me a cute story about my mom’s conversation with a visiting nurse. The nurse was trying to see if my mom needed any other care. My brother and Trudy, her caregiver, were with her when the nurse arrived. She asked my mother many questions, and there were several that Mom could not answer correctly. Then the nurse asked Mom if she knew what month it was. My mom answered “July.” The nurse replied that Mom was incorrect, and said it was April.

  My feisty mother responded, “If you know what month it is, then why ask me?” As my brother shared this with me, we both laughed. I smiled with pleasure, the pleasure that Mom was still there. She was tough enough to stand up for herself in a cute, innocent way.

  Yesterday when I spoke to Mom, her dementia seemed to be gone. I started the conversation by telling her that Logan would be staying at my house for a week while studying for a test. I explained that he had three roommates, and after working all day it was hard for him to study in his apartment. Not only did my mom listen, she also was able to make comments about him and ask me several questions.

  Being in the moment, Mom was able to speak about Logan, her one and only grandchild, with pride and deep love. She sentimentally reminisced about how sweet and kind he is. Could this really be a miracle? You see, Mom on most days cannot follow a conversation and even more frequently does not remember her grandson’s name.

  From far away each day as I speak to her, I try to stimulate her mind by the use of words, questions, and spelling and singing. There are times she rushes me off the phone by saying, “I’m going to hang up now.” I answer her that I just called, and Mom says anyway, “I’m going to say goodbye.” “That’s okay, Mom, just before you hang up, you need to throw me my kisses.” And once again that is how our phone calls always end. I catch her kisses, as when I was a young child, and safely place them in my pocket.

  I am able to enjoy all the words my mom still can say. I do not question the other parts. What would be the sense? It would only upset me, so I choose to appreciate and savor what I still can call these special moments. Are they miracles? Or perhaps magic? To me it does not really matter.

  COMMENTS

  Lisa,

  Your testimony reached directly to the heart. My mother is also sick Alzheimer’s for almost a year. I think the hardest part is seeing the person who previously was strong, intelligent, cheerful become gradually unhappy, confused. This is difficult. But we must help our moms feel safe and surrounded. Make a prayer for them. Thank you, Lisa.

  —Alana

  I can’t read your blogs without tears filling my eyes. My heart and mind drift back to the days we were caring for my mom. But I feel honored to get to share in your journey.

  —Holly

  Hi Lisa,

  You are really lucky. I know what you are talking about. I work as a caregiver in a nursing home in Germany. Some of my clients suffer from dementia, without suffering. They are open-minded, in a good mood, and sometimes able to feel and do things that can change a moment into a miracle. It is just this that makes me go on.

  —Paul

  Yes, it’s truly a disease where we all live in the moments and are grateful for those moments of seeming clarity. Happy Easter!

  Wonderful story! Thank you for sharing it with me (and the cyber-world).

  —Laurel

  Hi Lisa,

  My mom suffers from this horrendous disease also, and your story really hit home. So far this has happened to me twice, where she was as lucid as you and I. And like your mom, she no longer knows her grandchildren’s names and has been forgetting mine as well. She knows I am her daughter, but that’s it. The moments you are speaking of sure seem like miracles to me, and I savor every one of them. Aren’t they great? I wish they would last forever. I see her every other day and call her every night to say, “Sweet dreams, I love you.” It’s not easy.

  —Geraldine

  April 22, 2012

  In Mom’s World,

  Do I Laugh or Cry?

  This week in every conversation that I shared with my mom, who has Alzheimer’s, I found many joyous and upbeat moments. That is until today.

  The week started with my mom and I being excited that I would be coming to see her in twenty-four days. I told her that the countdown began, and she asked me to write it down and send it t
o her, so she would remember. There is absolutely no point in doing that, so I decided to start a counting exercise with her every day. “Mom, can you count backwards for me starting at twenty-four and ending at zero?” Mom declared with much enthusiasm, “Of course, I can do that,” and she immediately started to count. She started, “Twenty-four, twenty-three, twenty-two, twenty-one…” so quickly and correctly, until she reached zero.

  I was amazed how her memory, when it came to counting and no less backwards, just like her spelling, was so refreshingly spontaneous. I then asked her to count backwards skipping two at a time, and she immediately said, “Twenty-four, twenty-two, twenty, eighteen…” until she once again reached zero. I was intrigued and wondered how she was able to do this?

  I laughed with her, as I told her that her memory works so well backwards, that maybe she should stand upside down. We then sang some songs, as we both giggled about silly little things we said to each other. Most importantly we shared some wonderful moments. Tomorrow will be twenty-three days until I arrive. I can hardly wait.

  The next day I reminded Mom that my brother would be coming to see her. As I continued to joke with her and keep our conversations both simple and light, I told her that she was so lucky to have Gil as her son. Mom answered immediately saying, “Yes, I am one lucky lady, and I love you and Gil so very much.” My heart just melted as I said, “We are also so lucky to have you as our mother.” She answered with, “Thank you so much for saying that to me.” I hung up the phone with a big smile on my face, and a heart filled with much love. Only twenty-two days until I get to see my mom.

  The day after when I called, Elaine her caregiver was laughing as she answered the phone. She told me that my mom had just finished telling her all about her own mother. My mom shared how kind, generous, and giving her mom was. All of this was true. As Elaine repeated the conversation to me, my mom chirped in with, “It’s true—I would never make up stories.”

  Elaine handed the phone to Mom. I kidded her about how she was when I was a child. “Oh, you lived near me?” With surprise in my voice, I answered with, “Mom, I lived with you. Who do think you’re speaking to?” Mom then said, “I’m not sure.”

  When I hung up, I turned to my husband and laughed, as I repeated my conversation that I just had with mom. I’m not sure how funny I actually thought it was, although I can get joy from the silly unexpected things that she is still able to say. I guess I’m lucky to still be able to laugh with her or find some joy in her childish ways.

  The following day’s phone call was a little different. Mom did not know my name. “Mom, I’m your daughter, you actually named me.” I heard Trudy, Elaine’s daughter, say to her that my name started with the letter L. My mom then said with much question in her voice, “Louise?” (nope) “Lucy?” (nope) “Laura?” (nope), until I said, “My name is Lisa.” I then asked, “Mom, what is your son’s name?” and Ruthie was able to answer correctly. I then asked her to tell me her first and middle names, and she was able to respond with, “Ruth Esther,” which was absolutely correct.

  “Okay, Mom, what is my middle name?” She had no idea. I then asked what color hair I had. Mom answered, “Black.” I quickly responded that was not my color. Then she said, “Red.” Okay, Mom, I’ve had blond hair for at least the last thirty years. I asked to speak to Trudy, and I said with laughter, “My mom sounded good, yet I guess this is not one of her better days.”

  As I hung up I felt sadness in my heart. I wondered if I lived closer would she never forget my name. In my heart, I knew the answer. Distance has nothing much to do with what happened today. It’s what Alzheimer’s does to its victims.

  I was able to smile and continue on with my day, although if I say it did not sadden me, I would not be telling the truth. I still keep a smile in my heart, and now have only nineteen more days until I see my mom. I will then be able to give her a big kiss and squeeze her tightly. I do wonder at times if I am the child or the mother. I guess maybe, a little of both.

  I get to choose how I handle how I feel. I could laugh or I could cry, or I can cherish all the love that my mom and I still can share, knowing that one day this may no longer be possible. So for today, I’d rather feel the thrill of joy, than the tears of sadness.

  COMMENTS

  Such an amazingly touching story—amazing that your mom’s memory could turn so quickly. The photo of you and your mom is wonderful. Cherish memories. My best to you and your wonderful mom.

  —Daniel

  I think you sharing your journey with your mother is fantastic and helps so many people realize they aren’t alone in their journey, so thank you for sharing.

  —Susan

  Thank you for sharing your amazing blog! You are a true inspiration!

  —Brittney

  Lisa,

  Hi, I live in Lincolnshire in a village in the United Kingdom. I do read your blogs, and it has helped me a lot. My mum has vascular dementia. She has recently gone to live in a care home as she needed 24/7 care. She is happy she has others to talk to. I have put Mum’s bungalow up for sale. It’s a five-minute walk away from my home. It is an emotional time. I’m so busy, and I’m a recovering main caregiver. I was helping mum for over five years, unpaid. She had caregivers in. It has left me not right. I’m mentally exhausted. I’m glad I still worked a bit, so hope to get more work ahead. Mum has a great sense of humor. I visit Mum every week and take her surprises, like chocolates, flowers, or I read to her.

  —Cynthia

  Thank you, Lisa. Boy, did I need to read this today! I have huge tears right now, but I have printed this and posted it on my bulletin board to read every day. Thank you for sharing. I am going to see the positive in all of this, just like you are.

  —Suzanne

  May 4, 2012

  Does My Mom With Alzheimer’s

  Know It’s Mother’s Day?

  I’ll be off to see my mom on Wednesday for Mother’s Day. My flight leaves New York early in the morning. As I prepare myself for my trip, I get flashes of all different memories and feelings that are stored up within me. What will Mom be like this time? How much has her Alzheimer’s caused her to disappear into her world? Speaking to my mom each day is quite different than living with her. For the most part, my conversations on the phone with my mom are great. Then, of course, there are those other moments. So actually being and living with mom for several days will be quite different. My heart misses her, and my stomach churns both with excitement and nervousness.

  This week, my emotions about my mother ran like a river with many inlets. Today’s phone call left me feeling exhilarated, yet during the week after she had an episode of incontinence, I fell into an emotion of feeling quite sad and lost. Fortunately she was fine for the rest of the week, as her caregivers realized that they might have overloaded her with too much bran since she had been constipated.

  After that episode, I was not able to shake the sadness that I seemed to carry with me for most of the day. I had felt that my mom was no longer whole and had become half a person. How could this be? Where was my mother’s journey with Alzheimer’s going? What would be happening next? I did not understand, and for the rest of the day, I walked around in a haze, with a lump in my throat and a pain in my heart. Each day when I called, I was frightened, until I was reassured that my mother was doing just fine.

  Today, I felt so much joy I wanted to run to a mountain top and spread the words that my mom had just shared with me. She had such a softness and nurturing kindness to her voice. At first we spoke about all the people she could not remember, since most had moved away. Mom said that maybe if she were able to see them, then perhaps she would remember them. “Mom,” I declared, “I hope even though I live so far away that you never will forget me.” She answered with, “How could I ever forget you?” Then she explained that the most important thing is that we are all well. She continued to say that there was nothing more important than being healthy.

  I changed the subject and told her that
I would be seeing her in five days as I was coming to celebrate Mother’s Day with her. Mom seemed to remember that I had promised to take her for an ice cream sundae. With delight in my voice, and shock that she could remember this, I shouted to her, “Absolutely!” As our phone call was coming to end, Mom then uttered these words: “Do you love me like I love you?” As my heart seemed to break in half, I answered with, “Mom, I love you even more than that.” She then started to sing the words as we said our goodbyes.

  With much love in my heart, I wanted to take her last words to me and seal them in a bottle for me to open, whenever I so needed to. I knew that after we hung up, Mom would not remember our conversation, nor would she even remember that I will be seeing her in five days. I know that she has no idea that it will soon be Mother’s Day. Yet I do, and, for me, my mom will always be that special mother, who for years before she became ill I never even knew I had.

  I would like to wish all the moms a very special Mother’s Day.

  COMMENTS

  My mum is also my best friend. She’s at an earlier stage than your mum by the sound of it, but I’m having to do more and more for her, such as making her lunch to make sure she eats, etc. When I was picking out a Mother’s Day card today, it all of sudden hit me that Mother’s Day has become such a hard thing for me. Here I am, a thirty-six-year-old guy standing in the shop welling up, reading cards, thinking about my old mate. It’s just not fair for such a great lady to be dealt this. Thank you for sharing your and your beautiful mum’s journey. I’ll continue to visit this blog even though it’s tough. But we have to be tough, don’t we, for our mums. You both have a great day.

 

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