Once again, it does not really matter. Mom somehow was able to understand her own confusion. So I started to serenade her with the song, “Let Me Call You Sweetheart,” and my mom joyfully joined in.
There are parts of conversations that we still can share. She has her good days and off days. I do realize that Mom is sliding backwards from Alzheimer’s, yet somehow she is still able to hang in there. Her strength and her courage absolutely amazes me.
Several years ago she became my hero, and today she still can warm my heart with much joy. She brings a smile to my face. Although parts of her are now lost, I hold on tightly to all that we still can share.
COMMENTS
Another lovely, heartfelt post that has made me bite my lip to hold back some tears. I am touched by the way in which you interact with your mom on the phone. It’s beautiful and inspiring.
—Jilian
Hi Lisa,
Last week was tough, but this week has been a good one for my mom, except she is being very clingy. She wants to be with me every second. She cried last night because I won’t sleep with her. I have sleep issues and get anxious if I sleep in the same bed with someone. I worry I’m going to wake them because I’m very restless. I’ve been working with a counselor who specializes in dementia and Alzheimer’s. She thinks I need to put my mom in an assisted living facility. I cried that whole day and felt so guilty. I’m going to meet with her again, and she is going to come over and observe my mom, too.
It makes me so sad. But she is getting worse, and I don’t know how much longer I can do this. I give it about six months.
—Loreen
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.
—Ask My Community
Very moving post, Lisa. Brings back so many memories. Cherish your time with your mother. Love your blog!
—Katrina
September 23, 2012
Could This Be Magic?
Ibelong to a support group with the Alzheimer’s Association, which meets two times a month. I absolutely look forward to going there. It is a safe place to share all of my feelings with others, who I know truly understand. We all have a parent who suffers with Alzheimer’s.
Yesterday while I was waiting for the bus to go to my support group, I overheard a gentlemen having a conversation with his mother. It had me reflect on how those days for me and my mom were now long gone. Like in a trance, I felt myself slipping deep into my thoughts. The days that Mom and I used to share about our lives were no longer. It left me feeling empty and sad.
I realized that this was a day that I had not yet spoken to her. I usually call her mid morning. For the last few days, I found Mom so disconnected that it was painful calling her. No sounds of laughter or joy resonated from her. Trying to get her to laugh or sing was not on the menu. She just wanted to rush me off the phone and couldn’t have cared less about anything I was saying. Mom was not responsible for her actions; it was her disease reacting.
Even the conversation of asking her if I was her daughter and did she give birth to me, she answered with, “I guess so.” She was able to thank me for calling, and I also got her to throw me my daily kisses. Without these kisses, my day would not be complete. I know that they will disappear, so as of now they mean the world to me. This was not one of her brighter days.
Later that evening I phoned my mom, and like magic, she and I were able to have a real conversation. She did not rush me off the phone, and there were sounds of laughter as we spoke about several different things. I knew that she was really listening, as she chirped in that she didn’t want to interrupt me while I was speaking. After hanging up, I was floating on cloud nine.
The next morning she was still present, and with much conviction, she shouted how very much she loved me and wanted me to have a great day. She sounded so alive, and for several moments I could forget that she had this disease.
Two days of such clarity and she was so clear with her thinking process. How can this be? Who can understand this disease? When hearing her alive and joyful I do not question, yet when she is lost I ask myself why. Do the wires that connect in her brain connect and disconnect? When she has a day of clarity are they all connected, and when she doesn’t they are disconnected? What causes several good days of joyfulness, understanding, and clarity, and then for several days she seems to slip away?
I know that the researches are trying to find a cure or even prevention for Alzheimer’s. I only hope it comes in our lifetime. It’s too late for my mom, yet I wonder how much they truly understand. How does Alzheimer’s appear and disappear so frequently? This disease is not new for her; she has been suffering with this for at least eight years.
Yes, she has her good days and she has her not so good days. I could be flying high from the last few days, and yet I know too well how easily this magic can slip away. I think of the good moments that we still can share, even if they are less than before. So could this be magic? I do know the answer, yet my glass remains half filled not half empty. I am still grateful for whatever time we have left, and I must hold on to whenever the magic reappears.
COMMENTS
Hi Lisa,
I’ve found out about your blog right now. I was upset, looking for people out there who could understand. I’ll be reading your pages. But what I have already noticed, reading quickly your words here and there, is that I could have written the same things myself. If only my English were better. See you soon—you and your mom.
—Julia A.
You are an inspiration, Lisa. Keep the blogs going. I am a nurse who has worked with Alzheimer’s patients for the past thirty years, and you inspire me. Please add me as a friend so I can carry on reading your blog.
—Georgina
Thanks for sharing your story with us, Lisa! It really resonated with me, as I am sure it does with other adult children whose parents have Alzheimer’s. Yes, this disease is quite humbling and creates “a place filled with compassion and understanding that somehow seems different than before.” Well put!
—Long Island Alzheimer’s Foundation
(LIAF)
Thanks for that insightful experience. I was very touched. I experience this every day in my work with dementia people and their families. It never ceases to amaze me, these moments of clarity that are often so unexpected and touch my soul. I have often asked myself the same questions you asked and was hoping that someone would have responded with some sort of explanation.
—Adriane
September 28, 2012
Savoring the Moment
For almost a week, each day I have found my mom to be what one might say is “connected.” It is true that she has absolutely no memory anymore, of the past nor the present, yet she has been sounding so refreshed and so alive.
This last week there have been no dark clouds in her life, only beautiful colors of a rainbow. Mom has been extremely happy, and her world seems to be filled with clarity. I hear the sounds of birds chirping when she answers the phone with, “Hi, sweetie.” She sounds so carefree as sounds of laughter accompany her world.
We have been able to have some conversations without her rushing me off the phone. We have sung some songs and spelled some words, and she has been able to follow along with each breath that she takes. It seems to be like a miracle, as if she has escaped from Alzheimer’s. We have been able to be in the moment.
Of course she is not the same mom I had before, yet this lovely lady is still my mother—a mother who can still tell me how much she loves and misses me, a mother who still gets excited every time she hears the sound of my voice, a mother who still can tell me to have a wonderful day, and a mother who still shares with me how lucky we are to have our health.
The other day after I spoke to her, I thought of my childhood and teenage years, and I thought how my mother always believed in me. I thought how supportive she was to me and how she encouraged me when I n
eeded to hear those words from her. For some crazy reason, I took most of this for granted.
I realized today how my world has changed so drastically with our relationship. Now with every breath she takes and with the simplest of things that she may say, I hold on to each syllable that resonates from her sweet lips.
The words “I miss you and I love you” have such a deeper meaning to me. These are words that she still can speak. I realize that as time goes by, because of Alzheimer’s, she may not always be able to say them. I hold on tightly and I cling to all these loving words, as if I never heard them before.
Today, until no longer, I savor all the love that I receive from her. I cherish even more, all the love that I can also give back to her. I think of this as savoring the moment, for I know all too well what probably lies ahead.
On October 21, I will be on the Walk to End Alzheimer’s as a tribute to my mom, her younger brother who has passed away, and all the others who have suffered from this disease. We are all in this together and we must share in spreading awareness. We must find a cure.
COMMENTS
Once again, your words have touched my heart. I know what you mean about taking things for granted in the past and how absolutely magical the words “I love you” can feel these days. My mom’s speech was one of the first things to go, but every now and then, even in her worst moments, she will pop out a clear sentence. During those moments, when she says, “I love you,” it’s the best gift in the world. As far gone as she is, I have to believe that in those moments she knows what she’s saying.
—Anabelle
I want to wish you best of luck with your mom. Cherish, as you know from your friends, all the time you still have together. It is precious.
—Anonymous
Lisa,
It is true, our mother’s teach us to value friendship. They really were our first true friends. My closest friend Debbie had a mom who suffered with Alzheimer’s for years. Through her, I learned to treasure my mom even more, since you never know when this dreaded aliment takes the minds of those we love. My mom now is in the beginning stages of Alzheimer’s. It so sad that their golden years get somewhat tarnished by this aliment. I wish for everyone a cure once and for all.
—Anonymous
Way to go, Lisa, for your fantastic efforts in the fight against Alzheimer’s disease. I’m sure it will be a great experience, and we wish you all the best in your NYC Walk to End Alzheimer’s. Good for you, and hats off to your enthusiastic efforts—we’re lucky to work with people like you.
—Amelia White, events coordinator,
Alzheimer Society of Newfoundland and Labrador, Inc.
October 12, 2012
I Wonder What Mom
Is Thinking
Mom recently had two wonderful weeks that seemed to abruptly come to an end. This week started off with her sounding like she had just swallowed speed. She was on an adrenaline rush. Mom was saying some things that made sense and other things that I found quite difficult to understand. I wondered what was going on.
Did Mom have another urinary tract infection that was causing her to be in what seemed like a semi-delirious state? Probably not, since she had started an antibiotic the week before. My brother suspected that she might have had an infection. I questioned what would happen if she really needed an antibiotic. My brother Gil, being a physician, reassured me that this would not be a problem.
I found her one day speaking about my father, who passed away seventeen years ago, saying that she was waiting for him to come home from work. The next day she kept rambling on about some lady and how she remembered what had happened with her. She was making absolutely no sense at all. The next moment she was telling me that I was the best daughter in the world. Of course, I loved hearing those words.
I decided to ask her some questions to see if she, or better me, might understand. As I spoke these words, her answers were quick and responsive. “Mom, are you happy?” “Yes,” she said. “I’d rather be happy and have her hold my hand.” Okay, I thought, who is “her”? Then, without skipping a beat, she continued to say that she was happy to be alive. Her brain seemed to be firing and sparking all over the place.
The following day she only wanted to sleep. I’m sure this was out of total exhaustion. I only could wonder what I might find later on the other end of the phone.
Mom’s journey, since she has Alzheimer’s, has climbed mountains and has traveled through valleys. The rivers have flowed and at other times they have dried up. I never know what to expect. What might I experience next?
Toward the end of the week, her caregiver discovered that Mom was impacted. After she was relieved from this, she bounced back to being aware and sounding better. Almost as if what I had experienced all week never happened. If my mom cannot tell me what is going on, how can we as caregivers know how to help them?
In a strange way this fascinates me. How does the brain connect and disconnect so quickly? I only wish that my mom could explain to me what is going on. What is she feeling? What is she thinking? Since she cannot, all that I am left with is to wonder how Alzheimer’s disease can remove her vibrant ways and watch as she fades away.
Somehow, as upsetting as this can be, I have been getting used to her when she is acting this way. Yes, it hurts, and I wish I could cuddle her and take care of her, as she once did for me. Instead I take a deep breath and know in my heart that tomorrow could be a better day.
COMMENTS
Lisa,
It truly is amazing how things change minute to minute. Experiencing the disease with my mother has given me a whole new appreciation for the brain and how it works—when it works properly. It’s something we all take for granted, but it’s such a delicate balance. I, too, would give anything to know what thoughts are running through my mom’s head at any given moment. It’s such a mystery. Sending you hugs.
—Denise
Hi Lisa:
Thank you so much for sharing this with us. Fabulous effort and fabulous blog.
—Alzheimer’s Association,
Central Ohio Chapter
I read your blog with interest, as we have just moved my mum into a nursing home in my old home town—far from where her own house was, but now near to all her grandchildren. She really doesn’t remember or understand that she has moved anywhere, although she has only been there for a week—but she does wonder why there are a lot of people living with her in her house! When we explain that she is now in a nursing home where she will be properly cared for, and that she will never be on her own or lonely again, she is so happy and grateful—this, from the woman who swore she would go kicking and screaming into a home.
—Joni
Dear Lisa,
Thank you for your blog. I just read this tonight and thought that it captures my thoughts and the love I have for my dad who has was diagnosed with Alzheimer’s about five years ago. I live about six hours’ drive from my parents, and my dad has been in a secure home the past three years. I phone my mom every week because I know that every day is precious and it is the least I can do when living so far away. It is now very difficult because my dad speaks very little and has largely forgotten who my family are. I wish you all the very best in your efforts to support your mom and hope that she can hold on to those memories of you her daughter for the longest time.
Kind regards,
Jonathon
October 15, 2012
Sounds of Joy
This is the second week in a row where mom has sounded really good. She has been alert, upbeat, and filled with clarity. We have been able to engage in our daily conversations. I have purchased my plane tickets to visit her and will be arriving in eight weeks. I am hoping that when I get to her home, she will still be having her better days. However, eight weeks is still a long time away.
The last time that I visited her with my husband, her days were not great and being with her was painful to watch. It brought up sadness and frustration. As my trip is getting closer, I start to
feel some different emotions. As of now I am surrounded with excitement, yet feel a small knot in my stomach.
Just today, Mom so cutely said that she only hopes that she can remember when I will be arriving. She asked me to please remind her and hopes that she will not forget. I laugh with her as she speaks these words and reassure her that I will not let her forget.
Mom offered to help me make her “famous” meatloaf when I visit, since she cannot remember the recipe herself. Simple things like this excite me. I delight in each small thing she says, as if I was watching my son speak his first words or take his first steps. Her good days come and go, so I always cherish those special moments.
It doesn’t matter what we may speak about, it is just that we are still able to speak. She touches my heart in so many different ways. I can no longer talk to my dad, and in reality the day will come when I can no longer speak to her.
Mom has no memory anymore of anything, including my dad, her marriage, and her youth. Maybe she still has glimpses that come to her, yet as they pass by so quickly she has no way to share them. Yet for all this she does seem happy. In her world, she does not understand the difference.
My mom and dad met when they were very young. Mom was eighteen years old when they married. Dad was only twenty one when he shipped out to serve his country. At that time mom was also pregnant with my brother.
My Mom My Hero: Alzheimer's - A Mother and Daughter's Bittersweet Journey Page 9