I’ll never forget the first time my mom looked at me and didn’t know who I was. The mall was ridiculously crowded that day, the way it usually is around Christmas time. We navigated our way through the food court and my mom saved us a table in front of Saladworks. I could see her sitting there as I stood in line, waiting impatiently and feeling annoyed by all of the people.
Finally, I got our salads and drinks and walked back to where my mom had been sitting. As I approached the table and began putting my stuff down, she looked up at me and politely said, “I’m sorry, but someone is sitting here.” I just stared back at her, completely stunned by what she had just said. I replied, “Yeah, I know. I’m sitting here.” She looked confused and laughed nervously for a second. She said again, “Oh, I’m sorry. Someone is sitting here.”
My heart began to race as I quickly tried to process what was happening here. The chatter and buzz all around me continued on as if nothing was wrong, but for me, the whole world had stopped moving. Everything stood still. I was frozen in place, solely focused on this one woman sitting in front of me. Eventually, I was able to formulate a response. I said, “Yeah, Mom, I know. I’m sitting here. Mom, it’s me. Lauren.”
My mom looked even more confused and her cheeks became red with embarrassment. She quickly realized her mistake and tried to play it off as she continued laughing nervously. But I knew that she knew what had just happened. I knew that she also felt the significance of that moment. I introduced myself to my mom that day. It may have been the first time, but it definitely wasn’t the last. There were many more “first times” in the years that followed.
There was the first time she forgot how to get dressed. The first time she got lost in her own house and had to call me for help. The first time I helped her use the bathroom because she had completely forgotten what to do. There was the first time she forgot how to answer the phone and held it up to her ear upside down. The first time I said, “I love you,” and she didn’t say it back. The first time she got mad at me and yelled at me to get out of her house. There was the first time I helped her up after she had fallen down. The first time I pushed her in a wheelchair. The first time I fed her with a spoon.
That day at the mall was just the beginning of a long, heartbreaking journey. I lost so much more of my mom as the years went on. The thing about Alzheimer’s is that you lose so much of the person along the way that by the end, you are practically begging for them to die. But at the same time, you dread the thought of it. For years and years, you are mourning for someone who is still alive. It consumes every part of you, so much so that you begin to think you must be depressed. You are sad for no reason at all. The most random things make you cry. There are days when you wake up and feel like there’s no point in even getting out of bed. What’s the point of doing anything when your loved one is suffering so much and there’s nothing you can do about it? How can you possibly move on and continue to live your own life while your mom is slowly dying? It sounds like depression. It feels like depression. I’m sure it even looks like depression to others. It’s not. It’s grief.
People don’t understand that there is no closure with grief, whether you are grieving the living or the dead. Grief doesn’t just end or go away. It comes in waves, as they say. Eventually the waves might be farther apart or smaller at times, but they never stop coming. Grief hits you at the most random times. It comes when you least expect it. I can’t tell you the toll it has taken on me over the last eight and a half years since my mom was diagnosed with Alzheimer’s. I am not who I used to be. I am different now. I am sad. My heart and my soul are heavy.
But, no one wants to hear that. Everyone wants to hear that my mom is doing well, that I’m doing well. People don’t want to hear about all of the things my mom can no longer do. They don’t want to listen to me talk about how much I miss her. They don’t really want me to talk about her at all. A lot of people never even ask me about her anymore. It’s as if she’s already dead. Dead and gone and totally forgotten about. If someone does ask about her, I feel as though there is a time limit for how long I’m allowed to talk about her. Or a limit as to how much I can share. People eventually stop listening. It’s too hard. They stop liking or commenting on my Facebook posts about her, especially the sad ones. It’s too hard for them to read about my harsh reality.
My grief for my mom is soul-crushing. It’s life-altering. It’s never-ending. I’m sorry that my grief makes you uncomfortable, but how the hell do you think I feel? After all, this is my grief. Not yours. I can’t keep all of the things I’ve said here bottled up inside. I can’t bury my emotions deep within myself and pretend that they’re not there. I need to talk about my grief. I need to talk about my mom. I need to share my sadness and my pain. I need to talk about how much I miss her. About how much I wish I could do the things with her that you do with your mom. Not to make you feel bad or guilty, but to make me feel better. To validate my feelings and to acknowledge how much this sucks. It absolutely freaking sucks. I’m sorry that my grief makes you uncomfortable, but I won’t let that stop me from talking about it. I will continue to share my pain in an attempt to lessen it. I will continue to post about it on my blog and social media to let others know they are not alone.
I’m sorry that my grief makes you uncomfortable, but please don’t give up on me. Please don’t abandon me. You can turn a blind eye to my grief. You can walk away from it. I can’t. I’m living it. And I need support now more than ever.
Thank you for sharing. My mom has Alzheimer’s Disease and so much of what you shared I can relate with. I’m sorry you’re going through this too!
Thank you! I’m sorry for you, as well. It’s a very difficult journey!
Thank you, Lauren. You have expressed exactly how I feel….and I am now finding myself drawing away from friends…I don’t want to laugh anymore, I don’t want to talk anymore…..I just want to sit in my own small puddle of grief….
Thank you for sharing. My mom has dementia and it’s not easy to see her this way
It’s the hardest thing I’ve ever had to do. Thank you for reading.
Boy you hit it on the head!!!! Thank you for giving this way we feel a. Voice so beautifully
God bless
Boy you hit it on the head!!!! Thank you for giving this way we feel a. Voice so beautifully
God bless
Thank you so much! I truly appreciate the compliment!
Thank you. I read you post about not being allowed to share the heartache, the long slow deadly grief while she is here.
It’s a relief.
Thank.you.
And you were embracing your Irishness by being at dinner in a half hearted way not realising what you had!. Maybe reframe that memory and think it was the last time you were free to be light-hearted with your siblings , unaware of the journey ahead, innocent.
I know what you meant though, recalling later that things weren’t just right.
Thank you so much. That’s a good way to look at it. Such a tough journey and we realize so much looking back. 💜
Thank you. I can definitely relate and as I read the tears flowed down my face. My nanny is my favourite person and Alzheimer’s has stolen her from me. I spend so much time just being there and comforting her but I still look for any glimpse of the spunky lady I knew. Guess what? She is still in there. Sometimes she pops out a sentence that is so clear and sharp as a whistle. My heart still is breaking…2.5 years since she was taken from her home. Thank you for sharing.
Yes! They are still in there! I get little glimpses of my mom from time to time, as well. I’m so sorry for your pain. Thank you for reading. 💜
I am on the same journey as you are and certainly feel your pain! Thanks for sharing your perfect words made me feel a bit more normal as I too grieve everyday; sometimes to the point that it physically hurts! I am going to purchase your book now! Kindest regards, Lynda
Thank you so much. I understand the physical pain. Sometimes I swear I can actually feel my heart breaking. I’m sorry for your pain. I know how you feel. 💜
Lauren, thank you so much for this! I follow you in IG and love your posts. I wish that I found found your blog when I was caring for my mom with Alz. You hit the nail on the head with your words of grief and how everyone wants you to tell them that she is okay, that you are okay. Truth is your not and you will not ever be the same even after your mom passes. I know that I’m not, my mom’s death changed me so much and it is hard to explain, since I lost my dad to cancer in February I have changed from his death too. Life without your mom is a hard battle, no one to call with good news or to just talk to, Life without my dad is the same way. My parents lost a child at the young age of 23, due to a car accident and they always said you never get over the loss of a child. I understand what they meant, as I will never get over the loss of my parents. I have faith that they are all three together, and watching over my sister and I, I just have to take it one day at a time. Hang in there, and keep sharing your stories, as we are all here for you.
Jolie, thank you so much for sharing this! I’m so sorry for the loss of your dad. Although both of my parents are still living, I often feel like they’re already gone. I understand what you mean when you say you have no one to call with good news. I often don’t tell my dad things either because he has so much on his plate already. I talk to my mom in my heart and I’ve gotten closer with my sister. It’s still hard though. No one like your mom and dad. They are irreplaceable. Thank you so much for reading and following my journey. 💜
I am living with my husband who was recently diagnosed with FTD and altho this is the beginning of the end no one wants to know the grief that I am feeling now, the sense of loss. Where once was this big presence in my life is now all about how I can keep him safe. He doesn’t speak so there is a loss there, he doesn’t know that I still need to be hugged and kissed and made to feel like a woman, so there is a loss there. And no one has ever asked me about that. Most morning I lay awake and mourn for what I once had. Thank you Lauren for putting it into words what I feel like a lot of the time.
I’m so sorry to hear about your husband. I can’t imagine going through this with your spouse, best friend, and life partner. The grief must be devastating and all-consuming. I can’t imagine. I’m so sorry that you’re grieving so much and that no one seems to understand. That only makes this journey more difficult. Thank you for reading and following. I have another post called “Mourning the Living” that you might want to read. Thank you. 💜
I am walking in your shoes and hate everything about it. So lonely at times. My husband doesn’t know me at times. For 22 years was so affectionate and loving to me and I miss him so much
I’m so sorry for what you’re going through. It really sucks. It’s the most difficult and heartbreaking journey. 💜
Thank you for your wise words. My husband of 30 years suffers from Parkinson’s with Lewey Body Dementia, another cog in the dementia spectrum. I cared for him alone for 18 years until neither he nor I were safe living alone together. Family lives far away and friends have drifted away over the years as we were less and less able to participate in our past life, and people were made uncomfortable by my husband’s worsening condition. The loneliness is profound. He is now in a nursing facility continuing to sink deeper and deeper into his disease. I visit every day and pray for his peace and comfort. These neurological wasting diseases are hell on earth.
I’m so sorry for all that you’re going through. Friends have a way of drifting when we need them the most. I understand it’s uncomfortable for them to see and hear about, but that’s why we need to share our stories, to break the stigma. These diseases are the most horrific. Sending you peace and strength on your journey. Thank you for reading.
You mentioning how you see glimpses of your mom once in a while hit us right on the head. I would call my mom on the way home from the nursing home and tell him if mom had “popped in” for a minute or two or how she was . I live 2 1/2 hours away from the nursing home and bawled all the way home on the days she didn’t pop in!
I love those glimpses of my mom!
I am you. I understand everything you’ve said. I remember all those “firsts”. There is a reason why it’s often called The Long Goodbye. My mom hasn’t known who I am for quite awhile. People ask about her, but they really DON’T want to hear it all. I have taken to saying “she’s as good as she can be under the circumstances”.
But there’s another part to my grief, and that is the disappointment that I turned out to be to myself. My mom lived with me for several months last year, and I was not the loving caregiver I thought I would be. I was short tempered and easily frustrated, even though I absolutely knew she wasn’t being difficult on purpose. So, in addition to the pain of watching her slowly deteriorate, there is–and I’m afraid always will be–the enormous daughter guilt that I have laid on myself for not being perfect.
I am so glad you found my blog! I have written about guilt and regret multiple times! It’s totally normal to feel that way! I’m sure you did the best you could, so please don’t beat yourself up for not being perfect. No one is perfect! There is no such thing as a perfect caregiver. Forgive yourself for what you didn’t know before you knew it. This journey is so difficult and there is no manual or roadmap. We do the best we can and try to maintain some sense of self, which many people aren’t able to do. Please go back and read my post “Am I A Good Daughter.” The guilt is normal, but we all need to let it go!
These are all moving accounts of tragic losses. I will never forget the time I went to visit my grandma and she looked at me, vaguely confused and
said, “You look like somebody I ought to know.” It took me a moment to regain control of my emotions. My solution was to offer, “Let me tell you some stories.” It was the beginning of a mutually satisfying reminder of past good times. Still, it was frightening to realize the woman I spent my childhood summers with and later traveled extensively with had somehow begun the loss of her memory. Now, mine is fading. It’s tough.
Heartbreaking, but beautiful story. Thank you for sharing. 💜
So thankful you shared your story including your grief. I have just started on this journey and already my heart is heavy.
Sending you strength and hugs. Thank you for reading. 💜
Dear Lauren, So very sorry of your present journey of life that you are facing. How I wish that there was a way make all of it disappear without a trace. Sure, easy to say, but impossible to do. My aunt passed this life in the same manner. So I guess that I have some understanding of your situation. She was actress in her day. Oh, and beautiful. She didn’t recognize my mother, her sister when she visited her in LA California. A horrible disease it is. Scary part now, all these many years later is that all of my family have passed on leaving me with my wife and my Beautiful Daughter, who also has some very similar looks of my aunt and also is very determined young lady in her own rite. A college professor, tattoo artist and a very strong minded young lady. Who I fear may have to face some of the same life challenges that some of us are presently facing. Please pardon my continual run on an on, as I once again wish to put my thoughts down in a manner that may be helpful for you and your challenges in life. Prayers for you.So very sorry!
Thank you for sharing and for reading my article. 💜
My heart is breaking reading this, my mum died in early stages of dementia she was taken by sepsis. ‘Thankfully’ for want of a better word she still recognised us until near the end just about, but was very withdrawn prior to being ill with sepsis. I am so sorry you or anyone has to go through this, wether it be the person them selves or the relative trying to hang on to the person they once knew. It’s an absolutely heartbreaking cruel illness. I send you my love x
Thank you so much! It’s definitely a heartbreaking journey.
Lauren, you could interchange our names and put husband instead of mother. He has been battling for 4 years and has gone from totally cognitive to not knowing who the kids are (we have 5), grandkids and the rest of the family. I’m taking care of him at home and it is very hard at times. He likes to go out and smiles and waves at everyone we cross paths with. He has had 2 minor strokes in the last 4 months and that has taken most of speech away too. It’s hard not getting any response to conversations
I’m so sorry for what you’re going through. My mom doesn’t say much these days, so I understand the pain of not getting a response. I do believe that she’s always listening though, so I still talk to her all the time. It sucks. A lot. Hang in there. 💜
Thanks for sharing this it’s exactly how I feel my wife has Alzheimer’s and it’s heartbreaking to see getting worse
I’m so sorry to hear that, Harry. Thank you for reading.
Well I would share this but I’m pretty sure nobody on FB would take the time to read it all the way to the end!
My mom has dementia, and as terrible as that is, my husband has Alzheimer’s too. Yes, both at the same time. If you think losing your mom to it is bad, losing your best friend (spouse) is unspeakably tortuous.
His family never asks about him. It’s as though he does not exist. So, I understand what you are going through, and I am sorry.
Kay, I’m so very sorry for all that you’re going through. I can’t imagine how painful it is. I understand the hurt of people never asking or even checking in. It sucks. Thank you for reading.
Lauren, this blog is everything. For 13 years I grieved my mom and this horrible disease. I grieved so much that when she passed this past December, it was such a blessing and a relief that she was whole again and I could not be anything but happy for her that she did not have to deal with Alzheimer’s anymore. I look back on days that I would go see her and then not be able to function the rest of the day due to being so sad. Grief is a terrible thing but grieving someone while they are right there in front of you is just horrible. Now I just try to remember that she is whole again and I try to focus on memories we had before before Alzheimer’s. So many prayers for you and your mom💜
Thank you so much! I’m so sorry for your loss. She is finally at peace, but the grief is still strong.
Lauren, I went through a similar experience with my mother. You described your feelings exactly in the way I was feeling. I do understand how hard this is. But as you said, it is your grief and you have to deal with it in your own way. There is no right or wrong way in dealing with grief. My heart goes out to you.
I see you are part of AlzAuthors.com. I am as well. My book is To Helen With Love, A Memoir of A Daughter’s Caregiving Journey.
Keep writing your blog. I find writing my blog still helps me to deal with the loss of my mother while it helps others going through the same journey.
God Bless you and your Mom.
Thank you, Linda. Writing is very therapeutic and I enjoy connecting with others who are going through it. Thank you for reading!
I have a great network of support from friends I have made where my mom is living. However, I feel like they think my grief can’t possibly match theirs because they are on this journey with their spouses, where as my journey is with my mom. While the relationship and type of love is different, the pain and sorrow is just as strong. The love that comes across in these blogs is evident, and appreciate you sharing it with others.
I see that a lot in online support groups. No matter the age, relationship, length of illness, it’s all just as painful and heartbreaking. The pain and grief may be different, but it’s just as hard for anyone going through it. Thank you for reading!
Your words are my thoughts… I remember the few people who would ask how my mom was doing would stop listening once I started sharing the uncomfortable truth…
Thank you for reading!
It’s almost like a mind reader it’s everything I think and feel. My husband has dementia for 5 years and I find it very hard to talk to anyone about it thanks for expressing everything I would like to. God bless and chin up my friend. Thanks Fran
I’m so sorry about your husband. People who haven’t been through it just don’t understand. Thank you for reading!
My heart is breaking reading all the comments sharing the grief people feel dealing with this disease. I am the one with the Alzheimer’s diagnosis. I can still understand how sad and scary it is for those people in my life. Most of my past friends find it too difficult to spend time with me . That makes me very lonely but at the same time it releases me from having to pretend about things I don’t remember. I don’t have to deal with the shock people feel when I can’t remember the simplest of words. I hate it when I tell someone I don’t remember an event or a word and they tell me “oh that happens to everyone “. They don’t understand it’s not the same. My daughter refuses to believe there’s anything wrong with me. Even my partner just can’t believe I can’t remember the list of things she asks me to do. It’s less painful for her to think I simply don’t make an effort to remember than to accept the fog my mind stays in. She says I’ve stopped cooking because I’m lazy but in fact I can’t remember how to put together a recipe. More than anything I want to remember all the things I once knew. I’ll end for now because I feel like I am complaining too much
Donna, I’m so very sorry to hear about your diagnosis. No one really understands unless they’ve been through it themselves. Please send your daughter to my page. As for you, do you follow Brian Leblanc, Jeff Borghoff, and Laurie Scherrer? They are all living full and happy lives with a dementia diagnosis. I would recommend following them for support and inspiration. You don’t have to do this alone!
Hi Lauren,
I’ve just watched your account on Care Blazers , which was so clear and moving, and now I’ve come to your webpage. I just wanted to say how helpful and direct your words are. My wife has had Alzheimer’s for 5 years now, and I must say how moving your account are, especially the references to the “many first times” there are, when someone close to you has this terrible illness. Thank you for sharing your experiences.
Thank you so much for your kind words! I truly appreciate it. I’m so sorry you’re going through this with your wife. It’s heartbreaking. Sending lots of love and hugs to you both!