WHAT IS LIFE ?
In this picture my mom was so young and appeared carefree. Her life looked promising and she would get married at an early age and give birth to two children. A boy and a girl. The girl was me. This was many years ago. Perhaps it would feel like a lifetime ago to her, only if she could remember. Yet to my mom she has no memory or recollection of any of this.
I just returned from being in Italy for two weeks, and for the first time in over eight years I had not spoken to my mother each and every day. My early morning phone calls came to a cease. Today on my first day back, I will be shortly phoning her.
Will mom know that I have not called ? Will she have any realization of this? I highly doubt it ,yet I can hope and dream that maybe she will say that she missed speaking to me each day.
I realize in her world that she does not know the difference. Hearing my voice and all the sentiments that I share with each phone call, hoping that I bring her joy, are all forgotten the moment our calls come to a finale. It makes me stop and wonder what is the meaning of life, of being alive.
I explain to mom why I haven't called, as if she would understand. I suppose it was my own guilt and ask her if she remembers how very much I love her. She answers that she does. I reassure her that as long as she can remember that, then that is all that matters. She quickly agrees and hopefully understands, even if it's only for the moment .
On my parents twenty fifth anniversary, which was many moons ago, my brother and I sent them on a trip to Rome, Italy. My dad passed away eighteen years ago and mom married him at the young age of eighteen. I remembered how meaningful that trip was for my parents, and how much my mother had adored Italy.
Today, my mom has no idea of ever being in Italy, or seeing any of the treasures of the great city of Rome. It makes me wonder if this is what living is about? A life totally washed away lost out to sea as if it never existed. Her mind has become almost a blank canvas. I wonder how Alzheimer's can rob her of her life, and everything that she had once cherished.
Mom gets to breathe the air each day and this is a miracle, one that I do not take for granted. One that I feel grateful for, yet I cannot help wondering what her life is about. She still does have some awareness, and it's the little things that I must be thankful for.
I so wish that I could have shared with her all the beauty that I saw in Italy, yet life is not always how we would like it to be. I now can only hope that for me, the memories of my trip shall remain.
My Mom My Hero is my book dedicated to the all the special people in our lives. A book that you will cherish. A story of love and relationships. The reviews say "A must read." Available on Amazon & Kindle worldwide.
Lisa..your description " A life totally washed away lost out to sea as if it never existed. Her mind has become almost a blank canvas. I wonder how Alzheimer's can rob her of her life, and everything that she had once cherished."...yes...that is what I wonder and think....
ReplyDeleteYour being able to communicate with your mom is what I wish I had but my mom has lost 99% of her speech. On rare occasions she will say some word or phrase out of the blue.
You are not alone...there are many like us who share this helpless, painful journey of seeing our parents essentially disappear except for the vessel remaining of their body.
Hi Ellen,
DeleteI'm so sorry about your mom and although anything is possible my mom will be reaching a similar place as your mom is now.Her younger brither died from AD over 6 years ago and my mom has it for at least 8 years. I guess she's one of the "lucky ones" that she's still able to speak .
Thank you again for writing to me. I have found that my writing has made the journey a little easier(?)Hugs to you and your mom and you are in my heart.
Oh my Lisa. Your blog really hit me. I am so sorry and sincerely hope for current special moments! I also thank-you for doing what you are doing. Talking, Telling and Teaching!!!
ReplyDeleteKlare,thank you so very much for what you just shared with me. It continually touches my heart to know that I have touched someone. And this one is you ! We are all in this together.
ReplyDeleteThis is the first time I have read your blog. My mom has advanced Alzheimer's and we kept her at home and cared for her as long as we could. Yesterday us kids (5 of us) had to make the decision to have her admitted to a nursing home. she was admitted today.We also made this decision for safety reasons. Mom had lost 99% of her speech, had to be fed, toileted, dressed, showered, etc. My sister and I, along with a home health aid who came in during the evening hours, were the ones taking care of her for the past 2 years. My father also has early stage Alzheimer's. Mom didn't remember anything and dad didn't remember that mom has Alzheimer's. We took my mother to the nursing home today and then went home and told my father. For years I have felt like I'd lost my mother because we only had her body. Thank you for sharing your journey with the world
ReplyDeleteDear Sue,
DeleteI just wanted to tell you I know how your are feeling. I lost my father when he was only 60 but my mom was diagnosed with Alzheimers at age 74. She is 84 now and in August it will be three years in a nursing home. VERY difficult decision and heartbreaking as well but we are there all the time and advocate for her care so she gets very good care. She was home the first six years attending a day care for dementia and it was a blessing.When her mobility started to go we could not keep her at home. She to has lost 99% of her speech but every now and then she can reply. She is still in there and at times can answer simple questions although garbled. I'm so grateful to read of others experiences, it offers me the comfort of knowing I am not alone. Thank YOU for sharing.
Dear Sue, I am so sorry about your mom and your dad. This has to be a very difficult time in your life as well as your entire family.I am here for you in any way that I can be. I feel such a strong connection to you and Sandy (who answered you) for I know that we all understand what each of us is going through.I feel a loss for words and instead would like to send big tight hugs to both you and Sandy. Lisa
DeleteThank you, Sandy and Lisa. My mom was an accomplished quilter. I have many of her creations in my home. She had to stop quilting years ago and that was devastating to her. She could no longer remember how to do it. Or how to crochet, knit or sew. I have yet to go visit mom at the nursing home. transitions are hard for her and I want to give her time to adjust. Although when she was home, she kept crying that she wanted to go home. I am going to be quite selfish and say that I am enjoying not having to be "on call" to go fill in for someone who can't do it as well as do my own shift. I couldn't make plans, it was a "catch me on a good day and I can spend sometime with you" One of my sisters moved in with mom and dad to take care of mom. She worked nights, during the day a paid caregiver was there for suppers and putting mom to bed. I was there 2 days a week as well as any other day I was needed. I have been yelled at, hit, kicked, punched, etc. I have had to feed her at times that cueing didn't work. There was nothing worse than watching my mom, who was always my rock, not remember how to pick up a fork or use the bathroom. She had become like an infant. And my father couldn't understand that. It was hard when he yelled at her because she couldn't do something or answer a question. Many a time we have had to get "mean" with him and tell him that he can't go on forcing mom to do what he thinks she wants. She can't give consent so why are you forcing her out of her recliner to go lie on the couch? She clearly did not want to get up because she was clinging to the arms of the chair in order to stay seated. This was when we started realizing that it just wasn't safe for her any more. When we witnessed this. She was a fall risk so we did not force her to get up when she clearly did not want to . I am so glad that someone understands. I can only talk to my family so much because it is affecting them as well as me.
DeleteThis is my first time reading your blog. I can relate to so many of your questions and comments. My mom was an intelligent, loving, and talented woman. She always told us that if she got Alzheimer's..put her in a nursing home...and don't come sit and say "Oh poor Dolores, this is so sad." Mom did have to go into a home, because my father became ill, and went in for rehab...due to physical issues. They shared a room. Most days were hell for Dad...watching the woman he had loved for over 50 years quickly failing in every way. She lost her speech...her vision...and of course her memory. I did exactly what she told us not to do...I went almost daily and thought...poor Mom. She weighed about 50 lbs. when she passed. It is certainly an unfair disease.
ReplyDeleteAnonymous, you just had my heart break in two. My dad passed away 18 years ago and I have often thought that I was happy he was not with us anymore to see his wife disappear.Regardless how very difficult this is for us, the children, I cannot imagine what it must be like for a spouse. What a horrific,devastating disease. We must find a cure. xoxo Lisa
DeleteMy beautiful Mom passed away Aug. 12, 2009 from Alzheimers. I was lucky to have her living with me for 9 years. In the last year of her life I found it necessary to admit her into a nursing home as my own health was going down hill. Had I known that she only had 10 more months to live, I would have done anything I could to keep her with me. She was a beautiful, vibrant woman who outlived my Father and she married again and outlived my Step-Father. It felt like a thief came into my home and just stole everything that my Mom was away from us. May God bless you and anyone else who is the caregiver for their Mom or Dad with Alzheimers. It is such a terrible disease not only for the one that is diagnosed with it, but also for their entire family. Prayers are with you.
ReplyDeleteIt is so clear that your beautiful mom raised a caring beautiful child (you) who is filled with love.Thank you so much for sharing with all of us. Your words of love shine through. Lisa
DeleteLisa,
ReplyDeleteI truly understand your blog and your fears of losing your Mom to Alzheimer's.
I lost my Mom to Alzheimer's or complications due to Alzheimer's 5 years ago.
It was a joy for me to help care for her, and I miss her like crazy. I always called her "My Beautiful Lady" after she came down with Alzheimer's and she would smile and say no I am not. But she was beautiful to me, her smile, her voice. I could just go on and on, but I know that you understand.
Keep doing what your doing Lisa. You will be blessed for it, and even though she may not remember, your doing the right thing for her.
Susie Klinebriel Gloeckner
Sue, I am so touched by your words and your deep love and committment to your mother and I am so sorry for your loss. Hugs to you. Lisa
DeleteI have to get your book, I look forward to reading it. My Mother died March of 2011 with this horrible disease. Her Mother died in 1993, and her Sister in 2006 also with no memory of their past and now the last sister is fading with the same thing. It is so hard on the family watching them fade away. We love and miss them all.
ReplyDeleteMy heart goes out to you , and to everyone who has known this disease. My mom's younger brother also passed away over 9 years ago from AD. My mom use to get so upset when she visited him. He went pretty quickly where my mom is in some strange ways been hanging on. I know that if she understood what she had she would not want to go on living. My book does have humor and is at moments uplifting as I share my journey with my mother.
DeleteLisa and others who posted,
ReplyDeleteMy Mom also was diagnosed with Alzhiemer's seven years ago, two years ago had to place her in a nursing facility. Although she had declined in the last year, I still enjoy everyday with her, she has lost her speech to some degree but at times is pretty clear and then mumbles again, she even uses some good size words at the appropriate times. It's not easy seeing your once strong, loving and caring mother become so helpless and aggitated and at times hard to handle but we all have to remember that we take the good with the bad and as young children we weren't very easy to handle either so we need to be the loving, caring children that we learned to be from Mom.
I am blessed that Mom knows who I am and lights up when she see's me everyday. Somedays Mom is in an exceptionally good mood and we can laugh and talk just like we always did, we all have to hold on to the good times and not hold on to the "not so good" days. I look at Mom as she is still in there somewhere and although at times she is unable to express herself the way she wants to she still is aware of what is going on most of the time. As I tell the staff at the nursing home, she is still alive inside, her thoughts and words are hard to process and express, so don't ignore her like she isn't there.
We are all in this together and it's a long road.
You are all in my thoughts and prayers,
Lynne
Lynee....all I can say is Amen. Your words, your sentiments I just respect and love. I almost feel like I wrote much of what you have spoken about. It is so special to come from some joy and love and not let this disease find us bitter and devasted.I too cherish all the time that I still have left to share whatever it may be with my mom. I hope to hear from you again. Yes we are ALL in this together. Love Lisa
DeleteLisa,
DeleteWe have communicated via email a few times, sharing experiences and stories. I have read your book and also felt I had written much of what you were feeling. I find it extremely helpful to share feelings and experiences so others don't have to struggle with the unknown. It's very scary when our loved ones enter into this dreadful disease. It's very sad that the government takes Moms money for care,yet they can't find a cure. That's where my bitterness lies.
Keep up the good work Lisa, sending good thoughts,
Lynne
Yes, I so do remember our sharing with one another. It has meant alot to me. I didn't realize it until you just said something since there have been others with the same name who have contacted me.Love when I hear from you. Lisa
DeleteHi Lisa
ReplyDeleteYour story and everyone else's who have commented resonates with me as well. My sister and I lost our dear Mom on June 26, 2010 to the devil I call Alzheimer's. In the end it was a bowel obstruction that took her but by the time that happened she had been quite a few years without speech except for babbling and making one syllable sounds. She had been in a reclining wheelchair for a long time as well. Mom was officially diagnosed in 2000 but there were signs for a good couple of years preceding the diagnosis. I cannot begin to imagine how terrifying it was for her. I recall finding papers she had tucked away where she wrote my children's names over and over again and my name, my sister's family's names...I guess she must have been thinking if she wrote it all down somehow she would not forget. My Mother was a bright, articulate,tidy woman who worked with numbers her whole life. She was the youngest of 10, a wonderful daughter, sister, aunt, friend, Mother and Nana. I hate that my children and my nephew were robbed of not having her in their lives for longer than they did. Through a horrible divorce and very dark, difficult period of my life Mom did not know what was going on. For that I am thankful. It would have killed her and broke her heart to know what was going on with me. I shared it all with her and although could not get the physical or emotional support we all imagine a parent would provide, it truly did help me as I left the long term care center where she lived. Sure, sometimes I would have a cry in the car afterward but most often I was able to unleash or share the pain I felt without hurting her. For that I am grateful, but only that because I hate this disease. I had many laughs with Mom in the early stages because she was really comical! Mom often said or did things so out of character for her that I simply just had to bust a gut or chuckle and the best part of it was she laughed to0 so I guess you could say while I was laughing at her she laughed with me. For that I am grateful. My sister and I both equally love and miss our Mother beyond words, we lost our Father to suicide in 1992 and I have NO doubt that the traumatic shock of that incident was the demise of my Mother. She was never the same after that, who could be? I strongly believe if researched there are probably many people who suffer from deep, personal loss or tragedy who eventually get diagnosed with some form of dementia. Maybe that is my way of coping but I believe there is something to it. Thank you for sharing your story, you are not alone in this and I hope you can take some comfort from that.
Momm of 4, I am sorry that I do not have a "real" name for you except I feel your deep love for your mom and your children. I am so sorry that you, your sister and your children loss her. I also love the feelings you & your sister have/had of gratefulness with your mother. Along with this horrific disease I also share laughter, joy and am so grateful for what my mom and I have left.If you get a chance please read some of my other blog posts or even better my book. It is filled with humor which I think that you will enjoy and be able to relate to. Hugs to you & sis and thanks so much for sharing with me. Lisa
DeleteMom always carefull for her childeren very much. Even they are suffering form any problem. Thanks for sharing this great post. keep me more updates.
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...and Jennifer thank you for following along. We are all in this together. Lisa
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