My Mom My Hero: Alzheimer's - A Mother and Daughter's Bittersweet Journey
Page 7
What my ears had just heard sent chills up and down my spine. Out of my sometimes fear to not cause her any unnecessary pain, I avoid bringing up my dad to her. At times when I have, my mom usually says that she cannot remember him. No matter how many times I have heard this from her, to be married for almost fifty years and to have shared a family and lifetime together and still not be able to remember it still amazes me.
The saving grace for me, and of course for her, is that I know deep in my heart that whatever memories she had of my dad are now long forgotten. She can no longer feel her broken heart or any unnecessary pain.
“Hi, Mom, I heard you just watched a movie that you really enjoyed.” Mom answered with, “Yes, it was very good.” “What was it about?” I inquired. I then heard my mom ask Elaine to please tell me what the movie was about, for she could not remember.
The feelings of her remembering my dad were all but washed away, almost like a passing rain shower or, even more, like a rainbow that quickly fades away.
Mom and Dad were married in 1942, when she had just turned eighteen years old. My dad was turning twenty-one and soon to be shipping off with the Navy. They were married for a little shy of fifty years, and now for Mom it seems to be a life that has been taken away. I wonder how such a disease can destroy a lifetime of memories.
Hopefully one day researchers in the medical field will be able to find a cure, so others will be able to hold on to the memories of their lives and all their loved ones. So Dad, if Mom could remember her most recent words, I’m sure she would say again, “My man, I loved him so.”
COMMENTS
What a nice story, Lisa. At least you now know that she does remember your father—maybe she just needs something like that movie to nudge it from her memory bank. Your stories are so inspiring. Keep them coming!
—Kathleen
What a sweet mom you have. I love how she smiles in some of the pictures. It brings joy to my heart to see her smile despite this awful disease.
—Ginger
Lisa,
You and your mom are doing a wonderful job. Your story has gone around the world via Facebook. It is inspirational! Thanks so much for sharing.
All the best,
Holly
Dear Lisa,
I saw the post you wrote about your mom on a Facebook page. It was beautiful and moving. I am an eldercare placement specialist in Los Angeles for sixteen years specializing in dementia and Alzheimer’s residents. Your mom sounds like a peach. Additionally, my dad has Alzheimer’s, so I relate to your blog both personally and professionally. Thanking you for sharing your journey.
—Steffanie
August 10, 2012
I Feel Mom Drifting Away
My mom will be eighty-eight years old in fourteen days. For this I am quite grateful. Yet for the last few weeks, I have felt how she is starting to drift further away. One could say she’s like a boat lost at sea or caught in the midst of a dense fog.
Yes, we still have our special moments, and I can still hear the sound of joy and laughter coming from her as we speak. I just notice that they are becoming less frequent. At times her voice sounds more lethargic and somewhat listless. Perhaps it is that she is moving further along with her Alzheimer’s, and also being eighty-eight makes her no spring chicken.
In the beginning of the week, my mom sounded disoriented, complaining about back pains. She did not know where she lived and only wanted to go back home, for fear that her mom would be worried about her. We were fortunate to realize that Mom was having another urinary tract infection, and quickly got her on an antibiotic. We went down this path several months ago, so we are now educated about what to do for her. It is several days later now, and Mom sounds “back to normal.”
Mom will sometimes kid around with me and tell me that I am catching up to her in age. “How about your height?” I ask of her. Mom, who is less than five feet tall, responds with, “Who knows? Maybe I still will grow.” At moments like that, her humor warms my heart.
I try my best to keep her mind stimulated. Mom has been an excellent speller and always had a great vocabulary. She seems to still get ninety percent of the words she spells correct. Yet when I ask her to spell Portugal, she says to me, “What’s that? I never heard of it.” Or she’ll say, “What is a lobster?” which mom use to love to eat. “Mom, can you spell ‘illusion’?” “I never heard of that word.” “Okay, Mom, spell ‘delusion,’ ” which she was able to do as simple as one, two, three.
Her voice seems more tired, and there are more days when she wants to take quite few a naps. Mom was someone who never napped. I wonder if she is up all hours of the night, since I’m aware that people with Alzheimer’s have awkward sleeping patterns. Day is night and nights can be day. They do not realize the difference, as if the times of day are all rolled into one.
On the other side of this cloud is still some sunshine. Mom asked when I am coming to visit, after I had just described how foggy it was outside. She then was able to respond that I shouldn’t come until the sky brightens, because she would never want anything to happen to me. “Mom, you can really break my heart, when you say things like that.” I continued with, “Do you know how very much I love you?” She answered with, “No, I know you love me, but I do not understand what ‘much’ means.” I try to explain with a little surprise in my voice. I quickly move past this conversation.
No matter which way our conversations go, and no matter how much she is drifting away, I still hold on to how lucky I am. On most days, we are still able to speak and laugh. I cherish all our silly conversations and delight in the moments of joy that we still can share. I have no idea how long my mom will be able to remember who I am or my name, so today as always I am thankful for all that we still can share as she seems to drift away.
COMMENTS
Hi, my name is Joanne, and I live in Canada. I found your blog recently, and I feel a connection with you. My mom has Alzheimer’s, has been diagnosed for six years, and is only seventy-seven. She is in a nursing home an hour from me. I am finding it so hard, and I know that you understand. Thanks for sharing your heart, your emotions, and your humor. I am going to visit my mom today. I cherish every visit and hope against hope that she knows me today.
—Joan
A very touching post.
—Cara
Thank you for your positive comments. I too need to focus on the good things each day and cherish the memories. Congratulations on your efforts to maintain normality
—Auggie
Just found your blog through the Walk to End Alzheimer’s Facebook page, and I cried as I read this today. My mom passed away seven years ago yesterday, after eight years with early onset Alzheimer’s. Your stories of times with your dear mom touch my heart in a way I can’t explain. You will be in my prayers as you continue this journey with your sweet mom.
—Henrietta
I am really lucky that so far this has not affected our family. My grandparents are now both ninety, and I have to say there are little flickers that my grandad is starting to forget things more and more. However, who wouldn’t at ninety? Really heart-wrenching insight into living with this cruel illness.
—Anonymous
Great heart-wrenching read. My nan has had Alzheimer’s for at least ten years now, and it’s pretty tough to watch them drift further away while being totally powerless to do anything. But you have to try and take it your stride. Birthdays can be tough on her, as she’s not sure what’s happening (plus refuses to be told she’s ninety), and there’s a fair few people about, but you’ll get the odd time when her face lights up and she’s remembered/clicked with something. That makes it all worthwhile.
—Anonymous
August 18, 2012
Glimmers of a Rainbow
Sometimes when dark clouds start to clear, the sky opens up to glimmers of a rainbow. This is how my mom’s week ended, after the antibiotic she has been on started to work. Mom appeared listless in the beginning of the week,
only wanting to sleep her days away. That was before we were aware that she had a urinary tract infection.
Not anymore. The sounds of her laughter and joy could certainly fill the size of a ballroom. Mom was reciting to me a rhyme that she recently made up. “Mister, mister, where did you meet your sister?” She repeated it over and over again, with much expression and humor in her voice. Each time that she sang her new rhyme—“Mister, Mister, where did you meet your sister?”—we would both giggle, as she rejoiced with her newfound verses. Even her caregiver Trudy was laughing hysterically.
Just hearing the sound of her joy and happiness delighted me, sending thrills up and down my spine. She sounded so alive, as if she were having an adrenaline rush or maybe about to run a marathon race. Either way the excitement that she showed brought a needed smile to my face and lightness to my heart. The prior week, I knew that my mom was having a rather hard time.
Alzheimer’s is such a strange disease and one that I do not truly understand. One day my mom can be lethargic, and the next day she can be dancing the night away. I never know how long these moments of aliveness can last. Nor do I want to know. I just try to go with the flow of Mom’s ups and downs.
I wish that every day would be an up day for her. This I know is not possible. I find it hard to even imagine how in some ways she is so alive, yet in other ways there is not much that exists in her life.
Mom will be eighty-eight years old at the end of this week. Except for having Alzheimer’s and macular degeneration, she is in rather good health. She never seems to complain about anything, and on her good days there is always joy and laughter that resonates from her being. The only thing that she will say to me is that she cannot remember much of anything.
Actually mom remembers very little of anything. For me the most important thing is that she still remembers me. I know that this is a gift to be cherished, a gift that may one day be taken away. Yet today I choose to remain happy. It’s almost like when I see the glimmers of rainbows forming in the sky. I see all the beauty and do not remember the storm that just passed by.
COMMENTS
Lisa,
I was one of those daughters who came to that point when my mom did not know who I was and would inquire, “Where is Serena?” Even twenty-five years later, it still causes a tear to fall and a heart to ache, but I knew her. She was very young, sixty-six when she passed. Dad had gone on the year before at sixty. They married not ever inquiring as to the age of either of them and only meeting once before the ceremony. Theirs was a war romance of letters and poetry during WWII. But they lived, loved, and enjoyed life and each other. My brother also passed at sixty-one, so I and my husband and two children and grandchildren go on and remember the times when they were here with us and the smiles and love they gave. It will get better as time heals. Advice is cheap, but the one thing I can say is love each moment and make it precious to both of you. You will thank yourself for that someday. My heart goes out to you, along with my prayers.
—Serena
Lisa,
Thank you for sharing your world. My heart goes out to you and I think it wonderful the amount of people you touch by sharing so unselfishly all that you feel and experience.
—Linda
Thanks for sharing, Lisa. For folks like us, every day is Alzheimer’s Day. Keep the posts coming. Your stories are amazing, and you are helping spread awareness. Thank you.
—Homewatch CareGivers Columbus
August 25, 2011
Life Is Short—Be Happy
The picture above is from a birthday we celebrated together two years ago, while I was visiting my mom in Florida. Today she turned eighty-eight years young. This year I remained in New York during her birthday (which was yesterday). The best I could do was send her a special birthday card filled with much love and affection and to sing her the “Happy Birthday” song. As we approached her birthday, it was in many ways quite different.
The week started when my mom’s caregiver Trudy called around 8:30 a.m. to tell me that she phoned for an ambulance to take Mom to the hospital. She had cleared the decision with my brother Gil.
When she arrived, she found Ruthie to be a little disoriented and complaining terribly about pain in her neck. Trudy discovered that my mom had several bruises and black and blue marks on her arms, wrists, and fingers. We all wondered what had happened to her, and since she could not tell us, we all assumed that Mom must have fallen down.
The medics arrived, and Ruthie was at least able to tell them her birth date and her name as they strapped her to a stretcher and placed her in the ambulance. Several hours later when I spoke to the emergency room doctor, they were discharging Mom and sending her home. The doctor said that they ran many tests, with X-rays, an MRI, urine, and blood, and he was pleased to say that everything was normal. Yes, in the doctor’s world, “normal,” and in ours, “except for having Alzheimer’s.” Thankfully, nothing appeared to be broken.
I spoke to everyone several times that day from the hospital and later when Mom was back at home. The next two days she appeared to be so weak that she had trouble walking to the bathroom. We had her caregivers, who normally stay for twelve hours, sleep over with her for several days. By day three, Mom was starting to bounce back. She was walking much better and started laughing and singing along with me as we practiced her birthday song.
What struck me the most with this week was the several comments my mom had made about life and being alive. The day she came back home from the hospital, she was rambling on about things that made absolutely no sense. When I mentioned that she was in the hospital, she said, “No, I was never in the hospital.” I thought that all the strange things she was describing were in some way related to the nurses, the X-ray machines, the fear of being in an ambulance, things that she was not able to express. Yet as clear as day, my mom, in between speed-talking, said to me, “Life is short, so you just need to remember to be happy.” I hung up the phone, turned to my husband with amazement, and thought how profound it was what my mom had just said.
The next day, somewhere in our conversation, Mom said to me that she wanted to be alive. With lightness in my voice, I told her that she was very alive, for to whom else was I speaking? Finally on the day before her birthday, as we practiced singing her birthday song. As we got to the end of, “How old are you now, how old are you now?” Mom answered with, “Old enough to be alive, and thank God.”
All these phrases she kept saying about life and living only left me to wonder what she had felt was happening to her this week. These are feelings that she can no longer share or express for they just disappear from her memory. All the things she described to me, I truly believe for her, were a statement of wanting to live. Mom was not ready to die.
So, Mom, I toast you on your birthday. As you just recently said to me, I will remember that “life is short, so we need to be happy.” Yes, my sweet, loving mom, once again your words become wisdom to my ears. I just want to wish you a very Happy Birthday, and to let you know how very much I love and cherish you. I do not know how many more we will be able to celebrate together, yet for number eighty-eight, it stays in my heart as a very special one.
COMMENTS
Happy birthday to your mom, Lisa. This blog is special. The love you show is special, and it made my day.
—Joyce
This post brought tears to my eyes. I’m the caregiver of a terminally ill parent. Thank God, she is still very much alert and mentally active, although confusion is one of the major symptoms of her disease (multiple myeloma). As many of her other faculties diminish (more quickly as of late), I find myself sometimes startled by the emotional intensity of some of our exchanges—always loving and honest. My mother has always been the strength and heart of our family, so I feel I owe her all the care and consideration I can muster. I was struck by the strong resonance I felt in your words. It is hard to put into words, but I truly feel I have learned more about life, love, and the human condition in these last few months
than in all the years that have proceeded them. Feeling the depth and earnestness of love in the eyes of a dying parent has a way of burning away a lot of the dross and getting to what is important. Like you, I can attest that my mom is my hero. Thank you so much for sharing your experience.
—Rolan
Lisa,
I’ve been following your blog for some time now. To be honest, some days I can’t bear to click on the link. I don’t feel strong enough to read what are, more times than not, words of loving amazement, understanding, and acceptance of all that your beautiful mom is/ has become. Some days I feel too upset, too distraught, too guilt-ridden, or too much in denial perhaps. I don’t know. But I want you to know that since I first came across your blog, at a time when I was in a much darker place than I am this year, I have learned so much from your experiences and from your expression of honest emotion. Thank you so much. I cannot write about my own mom’s descent into Alzheimer’s as you’ve done. I might do that someday I hope. But I have begun to turn a corner in my grief for the mom I once was so close to, the mom I still love but who is quite lost to me. I’m learning to treasure what we still have. It’s tough. But your posts show me that I have much left to learn from the woman who has always been my greatest ally. Please know that your posts are making a difference, I am sure of it, to any and all who come across it here in cyberspace. God bless.