My Mom My Hero: Alzheimer's - A Mother and Daughter's Bittersweet Journey
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—Anthony
Thank you for sharing this. This was a different kind of Mother’s Day for me too, with Mom so far away with Alzheimer’s. Prayers.
—Loren
Thank you for this amazing story. You and your mom have a beautiful bond and love for each other. God bless.
—Nan
Thank you for sharing your amazing blog! You are a true inspiration!
—Shirley
Thank you for lifting my spirits, love. You are a credit to us all. God bless your wonderful mum. I send you both a hug, and please give your mum a cuddle from me too.
—Paulette
Oh Lisa, you don’t realize that you are a inspiration to us. You definitely touched my heart!
—Walter
Thank you for sharing your amazing blog! You are a true inspiration!
—Beryl
Hi, just wanted to say I read your blog regularly. I looked after my uncle for twelve years. He had macular degeneration and for the last five had Alzheimer’s. Sadly, he died in May, aged eighty-six. We always joked about him getting a telegram from the Queen when he was a hundred years old, a custom we have in Britain when one reaches that age. But the uncle I knew had left years before. Your mum seems such a lovely person, and I wish things could have been different for her and for you. All I can say is treasure every day. I found with my uncle there was always something he did or said that made me smile. Anyway, take care.
—Angela
Your mother, her wise replies, her not recalling your calls or visits, and your gratitude for her and the deep love you share, all remind me of my past journey that ended in 2010. I feel so much love for my beautiful mom and know I missed too much. I was there every day except for a few vacation breaks, but I sure wish I had found a place for us both, so she could have woken up and gone to bed knowing she had me by her side. I do feel guilt over having her in a care-home. In the initial stages she was feisty, fearful, and wouldn’t allow me to give her the help she needed. After she became severely sick (bladder infection caused sepsis) and in ICU, I placed her in a home. Nevertheless, I know I had love, advocacy, and care for her on a daily basis. After she passed, my distant and nonexistent sister (wouldn’t even call) came in to undermine my whole journey. She also hired an attorney, made false accusations I couldn’t disprove, and got the majority of funds left. The case took the last two years; I really have just now fully began missing my mama, and reading your blog brings me beautiful memories of her. The end had so much suffering (she had a fall and there were complications). I did move her in my home and slept by her side. So keep writing your blog. It helps me recall the simple and sweet, truthful replies of my mama and her heart of gold. Mothers are so precious!
—Anne
May 13, 2012
The Distance Between Us
It’s amazing to me that three days before my visit to see my mom, she asked me each time that I called when would I be coming to visit. I knew in my heart that embedded somewhere in her memory she knew that I was coming to see her. Mom and I for the last two weeks had been counting backwards till I would be arriving at her home. She sounded vibrant and filled with much life and excitement. Even if I were imagining all of this, it did not matter, for I could feel in my heart and soul the same joy as I waited for my plane to take off.
My visit to her house several days before Mother’s Day left me with different emotions. While I was with her, I felt much love, mixed with some pain and frustration. On a very upbeat note, my mom was doing wonderfully. At moments when she refused to brush her teeth or get dressed, I had to remind myself that her yelling at me that she was not a child was frustrating to both of us. I laughed, I cried, and the love I felt towards her touched me deeply.
I witnessed her as she danced and shared the same story over and over again with my dear friend Alana, who came to visit us. Mom was especially vibrant. Alana described her as “both beautiful and spunky,” this being the first time they ever met.
The following morning when Mom awoke, I was lying on the floor while I did my daily exercises. The day before Mom assisted me as I had her count to one hundred while I performed my Pilates moves. With much enthusiasm that morning, Mom was so excited to see me. She immediately joined in and started to count to one hundred. As I lay on the towel, she spoke these words: “Seeing your face and having you here are both very comforting to me.” I melted from her sentimental words.
As I stood up to continue my routine, she then asked, “Who is your mother?” With amazement I looked at her and said, “Mom, you are my mother, and I love you deeply.” Mom replied, “I love you also.” I then asked her my name. After her calling me Lisa for two days, at least a thousand times she said, “It’s on the tip of my tongue, although at this second I cannot remember it.” “Mom,” I said, “my name is Lisa.”
After my return to New York, I shared with my husband that my mom was filled with moments where she was so lucid, and then there were the other moments that seemed to come and go. Yet I felt quite grateful on how well she seemed to be doing. I guess I got lucky this trip, because there have been other visits when my mom’s Alzheimer’s seemed to take control.
The next morning she sounded so excited to hear from me. I shared that I missed her counting for me as I exercised. Mom replied, “It’s funny how you get used to doing something.” “I guess so, Mom, although I really do miss you.” As our phone call came to an end, she did once again ask, “When will I see you?” I thought to myself that
I had just left, yet I answer with, “I’ll see you in a couple of weeks.” Mom then uttered the words, “That’s great, because you know that I love seeing you.”
As of this moment, it is not the fact that my mom has Alzheimer’s that upsets me, it’s that I live so far away and do not have the opportunity to go and see her each day. Could it be that I miss her so much because today is Mother’s Day? No, I know the answer to that. It is the fact that whatever day or time, the distance between us still remains the same.
COMMENTS
Thanks for sharing your story. It’s heartwarming to read of your love and compassion. The ability to appreciate the moment is a gift and to not get totally frustrated at times is a blessing. From an early onset Lewy body dementia patient.
—Anonymous
You expressed the frustrations of Alzheimer’s so beautifully in your conclusion. It’s true. No matter how close or far away you are to your dear loved one, there will always be that distance. My best to you as you cope with this devastating illness.
—Bethany
What an awesome story! Agreed that the sentiment was shared beautifully. We wish you love, patience, and hope. Thank you so much for sharing such an honest and heartwarming story.
—Maureen
Lisa,
Thank you so much for sharing your journey, I found out about your blog just now, and it offers the hope and courage my family and I need at present. My grandmother will be moving into a nursing home this week. My mom and I (her caregiver) found out today that a room has just become available. It is logically the right decision and it’s been discussed for a while, but it still feels devastating. She’s been with us ever since I can remember. Reading your stories gives me so much hope. Thank you again, with much love and gratitude.
—Margaret
May 28, 2012
So Sweet and Tender
Since my last visit my mom has been asking me almost every day when I will be coming to see her. The truth is that I will not be returning for at least three to four months. Yet I do not share these thoughts with her. This time when she asked, my answer was within a few weeks. She replied, “What does a few weeks mean?” I quickly answered her by saying I would be visiting in four weeks, although I knew this was not true. She then whispered so sweet and tender, “That’s good, for four weeks is pretty soon.” Ruthie did like my answer, and I had no fear that she could remember and hold me to this time frame.
Of course there is some sadness that I did not tel
l her the truth, and even more that we live so far away from one another. How special it would be if I could see her at least once a week as my brother is able to do.
My mom said that she remembered that I was at her home, yet she could not say when or for how many days I visited. I knew from her caregivers that for the first week after I left, she walked around calling my name and looking for me.
We continued our phone call, and I had Ruthie spelling from A–Z using countries, cities, and states. I started off with Arizona, then Barcelona, Connecticut, and onward. When I asked her to spell New York, she started to sing the lyrics to “New York, New York,” and when I reached San Francisco, she sang, “I Left My Heart in San Francisco.” These songs have become familiar to most of us, like national anthems.
When Mom did not understand my pronunciation of some words that I asked her to spell, she sharply told me to speak English. She made me laugh, and I did feel joyous for she sounded so aware and alert. She was into our spelling game and scored a ninety-five—for her, almost perfection.
If my mom did not have Alzheimer’s and she said what she said to me, I might have felt annoyed. Now it is quite different. As far as I am concerned, my mom can do no wrong. I just appreciate and cherish every word that comes from her lips.
On this particular day, she was as sharp as a tack and filled with much clarity. I once again wondered if it was all the coconut oil that my brother has her caregivers give her each day. He read an article about how it had helped someone with Alzheimer’s. So he immediately bought it for her. At this point I do not mind the things he tries, certainly since something might work. No one really knows.
I ended our phone call with telling her how much I loved her and said, “Mom, I wish that I lived close to you.” Ruthie answered, “Me too. Who knows, maybe one day we will.” With a smile and a wish, I whispered back to her, “Mom, wouldn’t that really be nice?”
Her sweetness and tenderness have me miss her so. My mom’s strength and courage has inspired me. She has become my hero. My love and appreciation for who she is just amazes me. Alzheimer’s may have stolen her memory, yet Alzheimer’s cannot steal the enormous love I feel for her.
I am so fortunate to also feel all the love she has for me, and I am sure that she still can remember how very much I love her. Tomorrow when I awake, although I will not be able to see her, I will still be able to pick up my phone and hear her sweet and tender words. For this I am quite grateful.
COMMENTS
I can’t help but to think that Alzheimer’s, in some ways, brings people back to almost a childlike state of mind, when at times you can’t tell them the truth since they simply wouldn’t understand the truth or accept it—which is okay. I have seen some similarities with how you treat someone with a memory disorder and how you would treat a young child. This is not to say at all that there is a loss of preciousness or sweetness as we advance in age and possibly develop these awful disorders, but unfortunately, we probably have to change how we act and react around mom and dad when it happens. I am so glad, though, that you seem to apparently have good days with her still, and that she is still communicating. You so obviously love her tremendously.
—Danny
Thank you for your story. I sometimes wonder, what would happen if I were to take my mom to East Germany, where she was born and now is asking for all the time. In September last year, we talk her to the seaside of The Netherlands. She liked the ocean and the wind. Suddenly she had a twinkle in her eyes. She liked it and also to see the children playing in the sand. We went there only for a day, and we will never forget how happy she was for a moment. One day later, she didn’t know anymore that we went away for a ride to the seaside. The journey to East Germany, where she was born, is long, and I am not sure whether she can bear it. I have been thinking about for few weeks, and I don’t know how to decide. But I could imagine that it would be better for all to be in here and now situations. It’s great to read how deep your love for your mom is. Thank you. I wish you all the best. May God bless you all.
—Marnie
Wonderful story. I so relate to what you are feeling.
—Shari
Lisa,
I love your writing style and can relate to so much of what you say. My mother has had Alzheimer’s for about the past eight years. As you said, it’s hard to tell exactly when it took hold. There were signs galore, but I wanted so badly to believe it was just “normal aging” (despite the fact that she was only sixty-eight years old). In any case, I’m going to post a link to your blog on my own blog. After reading just a few posts, I feel like we have so much in common. Thank you for sharing your personal experiences; I’ll be visiting often. I’m sure that you are bringing comfort to many going through the same thing.
—Linette
This is so touching. It made me cry.
—Barbara
I’ve been a fan of your blog for quite a while. I love your honesty and find it incredibly touching that you are sharing such an intimate journey. I’m sure it has helped many many people view their journeys with Alzheimer’s and their loved ones very differently and had as incredible effect for them. Thank you so much.
—Sherri Ann
June 29, 2012
She Really Makes Me Smile
“Hi Mom, how are you?” “Lisa, is that you?” “Yes, Mom, it’s your beautiful daughter calling her favorite mom to see how you are doing.” “Lisa, when are you coming to see me?” “Mom,” I fibbed, “I’ll be coming in four weeks.” Mom replied, “That’s great because I really miss you.”
I feel a pang in my heart because I know that I will not be returning to see my mom for several months. I can get away with this white lie, because Ruthie has no recollection of what I just said, let alone when I lasted visited . Actually my mom cannot remember anything anymore. “Mom, I live too far away, and I was just at your home six weeks ago.” “I really do not remember,” she answers. “It feels like a very long time ago.”
“Well, Mom, you do have a special person coming to visit you today.” “Who?” “Your son Gil is coming to visit with his girlfriend.” Mom breaks in with, “Gil has a girlfriend?” “Yes, Mom, and we both met her when I visited six weeks ago.” “What is his girlfriend’s name?” “Her name is Rochelle, and she’s very nice.” I mention to her that they will be coming with their two dogs. “Why?” “Because the dogs want to visit you also. Please be careful that you do not step on them.” We both find this quite amusing, and start to giggle.
“Mom, would you like to come and visit me in New York?” “No, not now,” she replies, as she goes on to describe how she once lived there many years ago. She remembers looking out the window and watching as things went by. “Well, Mom, I remember you and I going to the museums, the theater, the top of the Empire State Building, and taking the buses and subways all over the city.” “Lisa, I did that? I do not remember, for it was so long ago.” “I do, Mom, and I also remember how much you enjoyed yourself.”
Unfortunately if she did any of these things today, she still would not remember. This is what Alzheimer’s has done to her. Her mind once filled with beautiful visions has now become a blank canvas. A lifetime of her memories that have all been washed away disappeared as if they never did exist.
“Mom, I love you. I’ll speak to you later.” “Okey dokey,” she says and answers with, “I love you even more.” I have just approached the Alzheimer’s Association offices in the city. I am here for a meeting to get involved with a project to help spread awareness with them, for September is Alzheimer’s Month. We want to paint the town purple and to spread our word for all to hear.
It’s strange how I hung up with my mom the very moment that I approached the entrance to their offices. As I entered, I had plastered across my face a huge smile and a heart filled with much warmth. I realized how almost every day when I speak to her, we share these silly, touching, and funny conversations. Our conversations make little sense, yet they seem to lighten our hearts and
make us laugh. We share a laugh from within that leaves our hearts filled with much pleasure and joy.
My mom probably forgets immediately what we just shared, yet for me I walk away feeling enlightened and carefree. When my mom was free of this disease, these lighthearted, fun conversations did not exist. I was too busy wanting to get off the phone, and now every time that I speak to her I hang up with feelings of so much love and happiness.
As strange as it sounds, there for me is much joy in whatever time we still have together, for this special lady can really make me smile.
COMMENTS
What a wonderful tribute to your mom. God bless you.
—Lana
I loved your story about your mother and you. keep up the good work.
—Ellie
Love every single post of your blog. Keep up the good job.
—PositiveMed
July 7, 2012
My Man, I Loved Him So
Today when I spoke to my mom, I mentioned that it was my birthday in eight days. When I questioned her about what day I was born and how old I would be, Mom said that she had no recollection of any of it. I whispered to her my age, and with humor, she answered, “You’re catching up to me.” I giggled at her quick and witty response.
When I phoned, she and her caregiver Elaine had just been watching a love story on the television. Elaine was so excited to share with me what my mom had just finished saying. Mom said to her that the movie was a beautiful love story. She continued to tell her that she lost her husband a long time ago (seventeen years to be exact) and that she really missed him. The next thing she said was that she’d do anything to have him back.