I see you, Alzheimer’s Daughter, trying to smile through the pain. I know how much it hurts. You feel as if both of your parents have just disappeared, vanished into some other world. Alzheimer’s World. They are gone forever. Only they’re not really gone. They’re still alive and, maybe, they live just a few miles away. They’re not gone, but they are gone. You didn’t lose them in an instant or in the blink of an eye. You lost them slowly and painfully over a long period of time. You want to see them, to talk to them, and you still can, but it’s not the same anymore. It will never be the same. Your mom has lost her mind and her identity to a progressive, degenerative, neurological disease. One for which there is no treatment and no cure. No hope. And, your dad has lost his mind and his identity in caring for her. There’s grief, but there’s no closure. There’s no healing. Your pain just continues to grow over the years with no end in sight.
I see you, Alzheimer’s Daughter, putting everyone else’s needs before your own. You feel obligated to help care for your parents the way they once cared for you. They gave you life and raised you right and you feel it is your duty to return the favor. How can you ever repay them for all that they’ve done for you? How could you ever just walk away when they need you most? You struggle to balance your home life, work life, family life, and social life. And yet, here you are helping your mom comb her hair, get dressed, or use the bathroom. Here you are calming her when she is agitated or trying to make her laugh when she is sad. Here you are distracting and redirecting her as she repeats herself over and over again. Here you are scheduling appointments for your dad and picking things up at the grocery store for him so he won’t have to go. And, here you are buying and wrapping Christmas presents for them to give to each other, while you still haven’t finished your own Christmas shopping. You do everything for everyone else, but tell me, who does things for you?
I see you, Alzheimer’s Daughter, scrolling through your Facebook feed, thinking to yourself, “Must be nice.” All of your friends and other people your age are out enjoying their lives. They are spending time with friends, family, their children, or their grandchildren. They are working their dream jobs and going on their dream vacations. They are complaining about problems that seem all too insignificant to you. You think to yourself, “I can’t relate.” You go to a party or out to dinner with your girlfriends and listen as everyone catches up on their lives. You listen to them talk about their jobs, their kids, and their vacations. You hear them complaining about problems that seem minor to you. You think to yourself, “I can’t relate.” Your husband comes home from work in a great mood and is excited to tell you about his day. He goes on and on about how much he loves what he’s doing. He says that everyone tells him he’s doing an excellent job and he wonders what his future might hold. You think to yourself, “I can’t relate.”
I see you, Alzheimer’s Daughter, scratching your head and racking your brain, trying to come up with something to talk about with your friends. Something other than Alzheimer’s. You realize that you don’t have anything to say. You don’t have a “real job” and you haven’t done anything exciting in years. You know that you can’t talk about what you actually do all day. You can’t share how your mom hands you her used toilet paper when she’s done using the bathroom and that you just take it because it’s better than her storing all of it in her pockets. You can’t tell them about how she didn’t remember who you were when you got to her house that morning or how you had to constantly remind her the whole time you were there. You can’t explain how your mom was upset and yelling all afternoon because “they” were being too loud and if “they” don’t stop then “they” have to leave. You can’t tell them how you look at your mom and you don’t even recognize her anymore. How you struggle to remember what she was like before she got sick. What did she look like? What did she say? How did her voice sound? You won’t tell them how you look in the mirror and don’t even recognize yourself anymore. What were you like before she got sick? Who are you now? You have changed so much. You just quietly sit there and let everyone else talk because you know there’s no point in saying anything at all. You think to yourself, “They can’t relate.”
I see you, Alzheimer’s Daughter, rolling your eyes as other women your age complain about their moms. Like, really? They’re complaining to you of all people about their moms? Complaining about how their moms didn’t do this or that or maybe did too much. While other people’s moms are still taking care of them, you take care of yourself. You don’t have a choice. Your parents don’t do things for you anymore. You do things for them. You are jealous of your friends that have good relationships with their moms. Their moms are their best friends and they’re always doing fun things with them. You think to yourself, “I wonder what that’s like?” You never got that chance.
I see you, Alzheimer’s Daughter, cancelling plans or not even making them in the first place because you’re tired in a way that no one understands. You’re not just tired in your body and in your mind. You’re tired in your bones and in your soul. You don’t have the energy for meaningless conversations anymore. You can’t remember the last time you had fun. You hold back from doing things for yourself because you need to be available to help your mom and dad. You put off having kids, taking that job, or moving away because you would feel too guilty to leave your parents. You feel guilty for a lot of things. You’re never doing enough. Your life is on hold.
I see you, Alzheimer’s Daughter, reaching out for a hand, any hand, that might be able to understand how you feel. Often times, you don’t even tell your significant other or your closest friends how you’re really feeling. You know they won’t understand. If you said aloud every thought that came to your mind, everyone would think you were crazy. No one would understand why you feel the way you do. Why sometimes you wish time would speed up so that you can just get this all over with. No one would understand why you go to sleep feeling sad and wake up feeling even sadder. Why sometimes you cry yourself to sleep for no reason at all. No one would understand how you can feel such highs and such lows in one day’s time. How you can go from feeling perfectly fine to sobbing, crying just like that. You’re looking for someone who can relate to what you’re going through. Someone who you won’t need to explain all of your feelings to because you honestly don’t even know where to start. You want to talk to someone who just “gets it.”
I see you, Alzheimer’s Daughter.
I see you.
I feel you.
I am you.
You are not alone.
I am here.
*If this post resonates with you, you should consider joining my membership called the Alzheimer’s Daughters Club. In it, you will learn how to cope with your guilt, grief, anger, resentment, and all of the other feelings that come with being an Alzheimer’s Daughter. Plus, you will instantly gain a supportive community of other Alzheimer’s Daughters upon joining! Check it out!
**If you liked this post, you will love my book “When Only Love Remains: Surviving My Mom’s Battle with Early Onset Alzheimer’s.” It’s available on all Amazon marketplaces.
Thank you, I read this with tears running down my face. I am so tired, I have been caring for my mom for 9 years. Even my best friend doesn’t get it. Bless you.
Melody, I completely understand. My mom was diagnosed seven years ago and although I’m not her full-time caregiver, I help out as much as I can. When I’m not physically there with her, I am mentally there. Thank you for reading!
My dear Dad had dementia, it is a very cruel condition that cares not who u are or your age. It takes over, rules not only the person but their family.
Cruel , debilitating, and one never forgets even years after.
As s carer it is so very hard, but I have no doubt at all that you have and will do all you can.
There are and will be years shed, frustration, sheer fatigue, but you will do and continue to do what is right because of your love and respect for that person.
I read every word and shed a lot of tears in the process.
God bless
Maddie
I feel the same way! Thank you so much for reading!
Thank you, I as well read this with tears running down my face. I am in the beginning stages with my mom. I have nothing of me to give to any friends or even myself and I know it is going to get even harder. All the best to you.
Thank you for reading. I’m so sorry about your mom. Don’t feel bad about conserving your energy. You will have more time and energy for your friends someday. It’s ok. This is only a season.
Yes. It is a raw and painful journey but deep, true and rich in love. Alzheimer’s cuts to the marrow and much of life’s concerns seem trivial even after our loved one’s journey ends. Mom passed six months ago and I am still processing the lessons I learned. Honored to have walked beside mom and advocated for her as best I could.
Cindy, I completely agree! I have learned so much through this journey and have grown so much as a person. I’m still learning and growing. I’m so sorry to hear about your mom. Thank you for reading!
I can truly relate. I gave up my apt in 2008 to move back home and take care of my mom. I retired early from my job in 2012 to become primary caregiver. It’s a very challenging situation.
Rene, it truly is the hardest thing I’ve ever done in my life. Take comfort in the fact that you’re an amazing daughter and many people would never do what you’re doing for your mom. Deep down your mom knows what you’re doing for her and she loves you so much for it. That’s what I believe. Thank you for reading!
Lauren, I relate to this so much, you could be talking about me. And then I held her in my arms when she became an angel. The pain is still exactly the same, worse some days. Now my Dad is ill, and I am going through it again; although his is oxygen deprivation from severe COPD. I have always believed they know we are there, I could see it (or maybe wished it) in my mother’s eyes. God Bless and many hugs. I am here for you! XO
SHerron
Sherron, I’m sorry to hear about your dad. I know you are taking good care of him just like you did your mom. I also think they know we’re there and how much we love them. Hugs to you, as well. Thanks again for reading!
You hit it on the head, again 100%. This is so perfect. Thank you again for putting it all into words so perfectly!
Thank you, Lainey!
Although I am not a full time caregiver I can relate to many points in your post, especially the one about not sharing with others. I think people would think I was a cruel, heartless person if I said what I thought some days about this disease and watching my mom die a little more each day. I keep a lot of that to myself. I hate the ‘I read an article about this, have u tried doing that?’ Most of the time i’m just looking to vent, just let off a little steam. But I get it too, people I do chose to speak to care about me, they want to help but they could never understand unless they experienced it first hand. It’s hard, everything about it is, whether it’s trying to navigate expenses, find the best care or plan trips to visit, it all takes an emotional, mental and physical toll.
Thank you for your article Lauren.
Heather, I hate it when people say that to me! I don’t want advice or suggestions. I just want someone to listen. It’s definitely hard to understand if you’ve never dealt with it. Thank you for reading!
Thank you for this, Lauren. My mother has always been my best friend. After her diagnosis in 2012, she’s slowly slipped away, but I’m thankful that she’s still happy and otherwise healthy. My father is her full-time caregiver and I live in the area, so I try and help as much as I can. It’s difficult to see what my mother’s illness is doing to my father…she has always been her world.
I’m so sorry about your mom. My mom’s illness has destroyed my dad, as well. It’s heartbreaking. Thank you for reading.
Yes, it certainly is. Thank you again for writing something that resonates with so many.
Lauren, I’ve read MANY articles, been to many a support group, talked to many people whose parents suffer with dementia, but I’ve never found a soul who connects with me….until I read this post by you. I don’t know why it had taken me so long to find you, but I feel we could be sisters. Thank you for putting in print EVERYTHING I feel daily. I’m an only child, my mother was my best friend, diagnosed at the young age of 60, my very capable father is her caregiver because he says it is his job and he would never dream of NOT doing it, but it’s killing him. We are on year 7 and there are days I just wish for it to be over. It has changed me inside out and I have put my life and that of my husband and two teenagers, on hold. For 7 years. I see YOU.
Love to you,
Angie Tucker, Paris, TN
Thank you so much for this comment! I have tears in my eyes reading it! I’m so glad that you found me and my blog. It means the world to me to hear you say that you connect to my writing. I know what you’re going through and how heartbreaking it all is. Thank you so much for reading and reaching out. I’m so grateful you’re here now!
I’m there with you , I have 3 brothers and I’m the oldest, she is so hateful to me and says terrible things, and I do so much for her, always have! God be with us all that go thru this ♥️
I’m so sorry! Sending strength and hugs to you. Thank you for reading!
In 2008 I was caregiver for my husband who had Huntington’s Disease and my mom that had Alzheimer’s disease. In 2012 my husband passed away and in May of 2013 my mom passed away. Yes, being a caregiver is the hardest thing I have ever done. Your emotions run every which way. From joy to depression. Even to this day, I feel guilt wondering if I did enough. I keep thinking I know I could have done more. It is something that seems to never go away. Saying goodbye was the hardest thing to do. I lost my two best friends in a short period of time.
I’m so sorry for your losses, Dee. I’m sure that was extremely difficult for you. The guilt and grief never leave us. Thank you for reading.
Thank you so much. My mom was recently diagnosed with early dementia as I started noticing the changes (I believe she is currently at Stage 4). I know I have a long road ahead, but even in these early stages I can relate to your words so well. It touched me deeply with tears streaming down. Thank you so much for sharing.
Thank you so much! It’s a long, difficult road, but it doesn’t have to be a lonely one. I’m so glad you’re here! Keep sharing, too. It helps!
Thank you for this post. I have felt so alone in this journey. I know I am doing the right thing by being there everyday for my Mother because she would have and has been there for me……the circle of life. I have been through rough times before but I can honestly say this is the toughest chapter of my life so far. I know it’s not forever and I am honored to be able to care for the person who once cared for me. Some days I wish she did not have to suffer and live in this new scary chapter of her life. I know when she sees me she feels safe and loved.
Yes, it has been the most difficult chapter of my life, too. It’s true that this is just a season and there will be life for us after, but it doesn’t make it any easier now. You’re doing a great thing for your mom and I’m sure she knows it. Thank you for reading.
Wow! I am in tears and speechless…so beautifully written and validating to all of the Alzheimer’s daughters out there! Thank you for sharing! This is almost 100% identical to my situation with both of my parents and 100% spot on to how I feel!
Thank you! 😘
Thank you so much! I really appreciate it!
Whew , this was so raw and Heart Felt and it’s so me! It’s me, my Mom, my Dad and my family and it hurts!
Thank you so much for reading! Hugs to you and your family.
Thank you for this post! Caring for my parents is hard enough without people always knowing better and telling me what (not) to do. I used to try and explain why I do what I do, but nowadays I just say: Walk a mile in my shoes and then tell me again.
You’ve certainly walked several miles in my shoes Lauren. Thank you!
We see you too! xxx
I so understand what you mean. Thank you so much for reading! I really appreciate it!
This is so spot on. I am an Alzheimer’s daughter. My father is here and doing well health wise, but in denial and cant handle what has happened to my mom. We are in late stages a she has been in the disease for 8 years. I just told a friend caregiving is lonely. I do work but still feel like I have nothing to talk about when with friends once or if work convo occurs. You touched on guilt which all though I do the best I can and others compliment me, I feel guilty for wanting a life and feeling resentment to my brothers that my life is on hold. Thanks for this. I journal these thoughts and it is nice to see these same thoughts from someone else. Very well written.
I FEEL THE SAME WAY..I AM SO UPSET SOME DAYS …WHEN I SEE AND HEAR MY BROTHERS AND SISTERS HAVING FUN.. OR JUST A LIFE…
I think it’s normal to feel some resentment. We just can’t let it consume us. It only makes this struggle more difficult.
Thank you so much for reading! I understand how you feel. It becomes hard to relate to others and their problems. Guilt never goes away. We just have to learn how to manage it. Thanks again!
THANK YOU SO MUCH FOR WRITING THIS. WHEN I READ IT I READ MY STORY AND GOT TEARS…IT IS A ROUGH ROAD TO TRAVEL…
Thank you so much! I really appreciate it!
My 89 y.o. Mom passed away April 13. She had been in a nursing home for almost 10 yrs. suffering from Alzheimer’s. I had to work full time so could not keep her at home. I tried to be there as much as I could. This disease took my best friend slowly but I treasure each kiss, each smile when I got them. Bless her heart… it was time to go home. I will miss my mom, my best friend. But I am celebrating with her the freedom from this cruel disease!
I’m so sorry for your loss. I hope you find some comfort that she is at peace now. Thank you for reading.
Beautifully written!!! And these words couldn’t be more close to the truth 💜
Thank you so much!
This is spot on… I have related to every word as an Alzheimer’s Son. My experience was so similar but positive. Mama had suffered from major depression for most of her life, but Alzheimer’s took that away. I don’t know how it came to pass, but I had the privilege of full time caregiving for a lovely lady whose dementia took away her melancholia. And do r eight beautiful years, until this past November, there were never her tears, only her laughter and her lovely voice singing to me the songs of my childhood.
I’m glad you had such a positive caregiving experience. A blessing in disguise. Thank you for reading!
WOW! I don’t even know what to say to this! There’s was no way I could read this w dry eyes! ! I’ve read many stories on FB that I thought explained me perfectly, but after reading this I know how wrong I was! Pretty much everything you just said was my day, my thoughts and my life! I always say there’s no way for ANYONE to understand this horrible disease until it has effected their life in some way! It obviously has yours and for that I am so sorry! Your story is my story! You just explained it a hell of a lot better than I ever could have! I didn’t think anyone understood. I didn’t know how to explain it and figure everyone is sick of hearing me talk about it so I try not to talk about it as much as I did yesterday or the day before and the day before that! I’m sorry there’s someone other than myself that is having to deal w this, at the same time thank you so much for sharing your story! I know I’m not crazy, well not totally! I know I’m not alone in this big bad world facing one of the most horrific situations I’ve ever had to face!
May God be w you and your family as y’all go through this! Know your not alone, as I know now that I’m not! Your words were wrote perfectly!
God Bless You! 🙏🏻🙏🏻
Marla, thank you so very much! What a compliment! That means so much to me that I was able to describe it so well. It’s a heartbreaking journey, but knowing we’re not alone makes it s little easier. Thank you for reading.
Thank you so much for this blog. I cannot stop sobbing here at work. Every WORD of this is true. 4 years in, and all I want to do is run away, run to her, run to work, run from life, etc. My anxiety has gotten me a bad smoking habit. I no longer care about myself in any way. Mom is in an assisted living now, but you still have to care for her like she’s home. I am so tired of everything. No money, no time, and mostly, NO MOM. She is long gone. I just want all this hard work to pay off so mom can come back to me the way she was. 🙁
I’m so sorry for all that you’re going through. It’s so heartbreaking. Thank you for reading.
I love this so much!! It is so hard to put into words for people who just don’t get it, haven’t experienced it, and are not living it. I am 26 years old and my mother was diagnosed 7-years ago. All my friends are able to experience major life milestones with their mother by their side – marriage, the birth of their first child, etc. While myself, on the other hand, have experienced and are experiencing those without my mother. She is not gone, but as you said she is gone.
Most of all, it is so nice to know I am not alone in these feelings and thoughts. I internalize so much because it wouldn’t make sense to anyone else, especially those my age. My husband is amazing and listens so well and has been a trooper. He’s been my rock through all this and I am so thankful to have him. I’d be a recluse without him. He’s actually the one that has encouraged me to reach out and find others who are suffering and connect with them. It’s been a God-send in the midst of the pain and ache to want my mom back, to hear her voice again, to feel my mother’s love once more.
Thank you so much for reading and reaching out! You are so young! I was 25 when my mom was diagnosed, so I was young, but not as young as you. I’m so sorry you are going through this. The isolation, depression, guilt, and resentment can be so overwhelming. You are most definitely not alone and I’m so glad you found my blog. Thank you so much for reading.
I came upon your article and blog on Facebook. Over the years, I have done so much reading and research on Alzheimer’s, but no article has ever touched so close to the reality of what was my life for 8+ years of caring for my mom. I lost my mom May 2018 at the age of 74. It has been difficult to move on after caring for her for so long. 💜
Thank you so much! That means a lot to me! I’m so sorry about your mom.
Thank you for writing this! I think a lot of this and seeing it in writing brought tears to my face. My dad has Alzheimer’s but I’ve also lost my mom because we no longer have the same relationship. I’m single though and sometimes I wonder if I’ll ever meet anyone with this disease in my life. I loved how you explained being tired. I’ve never thought of it that way but it’s exactly how it feels. All of the support groups in my area have husbands and wives. Sons and daughters are left out at least the ones that are young. Thank you for writing this for the first time in 5 years I feel like my feelings are acknowledged and understood and I’m not alone.
Allison, Thank you so much! I really appreciate your words. You are the reason I write and share my story. I don’t ever want anyone to feel alone in this disease. Thank you for reading! I hope you’ll follow along on Facebook and Instagram!
You nailed everything I have felt and continue to feel. My mom was only 53 when diagnosed with early onset Alzheimer’s. I was in my twenties beginning my teaching career and was working my way to my dream school, which was right down the road from my parents, just because…she’s my best friend & I wanted to be close to her.
I’ll never forget the stage of depression that hit when she first found out. She was familiar with what was to come and did not want to live with this cruel disease. She told me that while I was driving home with her. It shattered my heart into a million pieces. Who can blame her? I know I’m afraid of it happening to me.
By the time I finally got to my dream school that was nearby, she was already progressing. I poured my heart and soul into being around and helpful as much as possible. After teaching all day, then spending time with her..when I’d get home I was completely emotionally, mentally, and physically drained. I couldn’t related to anyone. I had a friend who’s mom also had it..but she was progressing so much slower and she had a healthier/closer relationship with her father. My dad and I continue to butt heads. I would still show up for her though.
I got married. We were married in my parents backyard and I had both my parents walk me down the isle. Then she progressed rapidly after losses of her mom & her mother-in-law. She can’t drive, work, or carry much of a conversation. I’ll never forgot the first time she asked me, “Am I the mama?” She couldn’t comprehend that I am her daughter, but she knew she loved me. Two years later, I was pregnant and hoped this would bring excitement and joy back in her life. I told her she would be able to help me with the baby and stay at my house some. Instead, during my pregnancy she progressed more and more. Once my baby girl arrived, it was too challenging as a new mom to take care of my newborn and my mom at the same time. I would fear she would accidentally drop her or afraid she would fall asleep with her and let my daughter slip. I didn’t even want to leave to use the restroom, because I was afraid to take my eyes off them.
My life was full of “holding it together” at work all day, taking care of my baby at night, bc my husband would be at work during the week days/night because our schedule was opposite, then crying every single time I would get in the shower each night. I made the decision to start slowly pulling away more and more..I needed to take care of myself first, so I could take care of my baby. So I could begin a different stage of my life with my little family we’ve started. My daughter is almost nine months now. I video call my mom every other week or every couple of weeks, since my dad is keeping her quarantined (that’s a different story, I can’t get into). This time away has helped me focus solely on my relationship with my baby and husband. Guilt haunts me from time to time for pulling away some (I’ve actually had someone say rather mean things to me about my decision to pull back to focus on starting my family, that person didn’t know me, my heart, or, our story. It was actually someone on an Alzheimer’s Support Facebook group). Jealously still grabs ahold of me as I struggle finding care for my baby, while I’m at work..I just always envisioned that my mom would be healthy & able to watch my baby girl and teach me how to become a mom. It seems like the majority of my friends have family support close by. I crave that.
I’m at a better place, and the crying in the shower has decreased to maybe once or twice a month—when my heart breaks if I think about my mom for too long and the unfair life that she has lived..with the loss of her siblings and parents, parent in laws, and now this.
I miss our talks and our drives with the music blaring, dancing & laughing, with an ice cream stop almost every time. I miss her so incredibly much, even though she is still alive. I hate Alzheimer’s.
My twin sister and I took my mother to memory care yesterday. I cared for her for a year and a half after moving into her home (and two years before that living separately), but I couldn’t do it anymore. I only made is a year and a half. I feel so weak that I couldn’t make it further, but I couldn’t. I’m so tired. And it was so hard. And I miss her so much. I feel so bad. My sister is going to the home today to see her. But, I can’t. I can’t manage it yet – knowing that she’ll beg me to come home.
I read your book early on in this journey. This article helps me feel less alone. Thank you. I’m so sorry for your own loss.
Amy, I’m so sorry you’re going through this! I’m not sure if you’ve read my new book called “When Only Love Remains: Surviving My Mom’s Battle with Early Onset Alzheimer’s,” but in it I talk all about my own experience with burn out and feeling guilty for not being able to “handle it.” There’s so much guilt all along this journey, but you’ve done the best you could and will continue to do so. I also offer one-on-one mentoring services now if you ever need someone to talk to. See the mentoring page on my website if you’re interested. Sending love and hugs to you! Hang in there!
I just cried while reading..
Thank you for seeing us.❤️
Thank you for reading!