“One of the hardest things you will ever have to do is to grieve the loss of a person who is still alive.”
Unknown
I’ve been thinking about my mom a lot since I moved to Florida. I thought about her quite a bit when I lived back home, too, but it was in a different way. I used to sit and worry about her all the time. If I wasn’t with her, I would wonder what she was doing and how her day had been. I would look at the clock and think, “Ok, it’s 6:30pm. I wonder what Mom is doing right now. I wonder if she ate her dinner. I wonder if she’s upset today.” I thought about her constantly. When I moved to Florida, I continued thinking about her all the time, but I noticed it was different. I wasn’t really worrying about her as much, but I was still thinking about her constantly.
I realized that I was thinking a lot more about my “old mom.” For a while, it seemed that no matter where I went or what I did, something would remind me of my “old mom” and I would start missing her like crazy. I would get so sad and have this painful yearning for her. I reminded myself that there was no reason to be missing my “old mom” any more now than I did back at home. My mom was still the same as she was when I moved. Nothing had changed, really. Well, except for the fact that I had moved far away and I couldn’t see or talk to my mom whenever I wanted. What was it about being away that made me miss the “old” her so much?
Anyone who has a loved one with Alzheimer’s knows that after a while, your loved one becomes so dramatically different from the person she once was. As you begin to accept and adapt to the changes you see in your loved one, you also begin to miss the person she used to be more and more. I began missing my “old mom” years ago, but it was often overpowered by my worry and concern for her wellbeing and care. I was always too busy thinking about what was going on with her that I didn’t think about or miss the “old” her all that much.
After I moved away, my caregiving duties and obligations largely diminished. I knew that my mom was being taken care of at home and I didn’t really need to worry about it that much anymore. My thoughts began shifting back to my “old mom” and how much I missed her. It certainly didn’t make it any easier that I couldn’t just call my mom any time I felt like I wanted to talk to her. My mom hasn’t been able to talk on the phone for a while now and her conversation skills are extremely limited. I would have to get by with the occasional Facetime session with my mom whenever my dad was home and available. Any time is not always a good time to attempt a Facetime call either. Honestly, they are few and far between.
So, here I am, living in Florida, missing the hell out of my mom, and not able to communicate with her very often. I began to realize why missing my mom suddenly felt so different. Being far away from her with very limited contact made me feel as if she was already gone. I was remembering her and missing her as if she had died. I felt like I was trying to move on with my life after her death. Every little thing reminded me of her and made me feel sad. I felt like I was in mourning. Mourning a death that has yet to come.
Come to think of it, I’ve felt this way for the last eight years since my mom was diagnosed. I could be sitting right next to my mom, holding her hand, but I still miss her. I could be talking to her or hugging her, but it still doesn’t feel quite right. I’m missing whole parts of her that are now long gone. I’m missing parts of myself, too. To be honest, I haven’t really felt like myself in years. I feel like someone who is just going through the motions of life, doing what I’m supposed to do, but without any real purpose. I feel like I’ve just been trying to get by, like I’m just trying to move on with my life. I’ve been mourning the loss of my mom for so long, but she still hasn’t gone anywhere. That’s the thing about mourning the living. You’re grieving for a long period of time with no closure. If you don’t have closure, how can you try to move on? You can’t. You don’t. You just hang on to whatever thread you have left. You put one foot in front of the other. Day in and day out. You do this for years, sometimes ten or more, until you find yourself actually hoping that she will just die already because you don’t know how much more you can take.
Although my mom is alive, I still miss her like crazy. I miss what was and I miss what might have been. I look at other women my age who are out shopping or having lunch with their moms and I think, “I wonder what that’s like.” I wonder if we would have texted each other. I wonder if she would have helped me pack for Florida. I wonder if she would have come to visit me. I think about all of the things I never did with my mom and all of the memories that we’ll never have. I do all of these things and yet I know that she’s still alive. The worst is yet to come.
Mourning the living feels just like mourning the dead. No one has died, but there has been a death. Mourning the living takes such a toll on a person that you feel like an empty shell yourself. Then, there are two empty shells in the room, you and your loved one. It’s hard. Really, really hard. Like I said, I haven’t felt like myself in years. It’s easy to lose yourself in caring for someone else. It’s even easier to lose yourself in mourning that same person. Put the two together and you’re just a hot mess.
As for me, yes, I’m still a bit of a hot mess, but I’ll keep plugging along.
Thank you for sharing your story with such honesty and courage. My mother is in the moderate stages of alzheimers (we are in year 7) and everything you said really resonated with me. I feel like I don’t know this person sitting beside me anymore. I, too, miss my “old mom”. I miss being able to talk to her, especially when I’m having a hard time with something, or I’m feeling stressed or worried, or to ask for her advice, suggestion or opinion. I can’t do that anymore, even though we eat breakfast together every Saturday morning. . It’s very lonely and isolating and hard not to get really sad about that sometimes. I miss her calling me for my birthday, or calling me when I was sick to check in and see if I was feeling better, and sharing a meal at a restaurant as a family. That’s all gone now, even though she is still here, and at times I feel disappointed, sad, afraid for her, and terrified of what’s still to come. It’s so hard to watch the decline and witness loss after loss that just feels incessant at times. Just when you’ve accepted the current new stage/situation she is in, a new loss or worry or fear or health scare slaps you hard in in the face. And I worry about my dad, who is her main caregiver. I worry for his physical and mental health, and my heart breaks for him at having to say good bye every day as pieces of his wife of over 50 years are disappearing right before his very eyes. I’m tired of looking for the “silver linings” and finding ways to “celebrate what remains” all the time. I miss being “carefree happy” , as I used to be before she got diagnosed. I miss feeling pure happiness that’s not short-lived because the alzheimers, coupled with the worry, and grief are like a dark cloud that just sit on your shoulder, always there, hovering. I miss our family holiday celebrations that are now so different and hard to look forward to. I miss the old me and the old her. Hopefully they will come up with something soon that can stop or at least delay the progression of this awful disease.
Hi Nancy! Thank you so much for reading and reaching out. So much “yes!” to everything you just said. Literally, every single thing. I feel like I could’ve written this myself. Birthdays and holidays are just any other day for us now. I miss everything that was and anything that will never be. I isolate myself from friends at times because they just don’t get it. I worry so much about my dad and my heart breaks for him every day. So many parts of my life that I can’t share with my own mom and dad. It hurts so much. I know all of these feelings and thoughts all too well.
One thing I did for my birthday was video my mom singing happy birthday to me. Now I have it to listen to every year on my birthday, since she no longer knows when it is or even what a birthday is. It’s not the same as her calling me on my birthday, but it helps. Hang in there! I’m right there with you!
Thank you for posting this. My mother was diagnosed with Alzheimer’s about 9 years ago she is currently transitioning and rapidly approaching the end of her journey. I was her primary caretaker along with my brother for many years. I felt such guilt sitting next to my mother conversing on some level thinking to myself…God I miss my mom…with her sitting next to me in life. I felt like a horrible person and never verbalized these feelings. I would think you are so lucky to have your mom here with you (and I was). It was an internal struggle, sadness mixed with guilt and just a little resentment..because I missed MY MOM. To see that perhaps others also mourn the loss while their loved one is with them is a revelation that I wish I had years ago. I have only hours or perhaps a very few days left with my mom…perhaps the grieving process started in some fashion many years ago…I am so grateful to have been an active part of her journey for so long. My emotions as we get ready to say our earthly goodbye are extreme sadness mixed with relief that her struggle with this monster disease is coming to a close and she will have internal peace.
Thank you so much for sharing. Everything that you’re feeling is normal! Most, if not all, caregivers grieve the loss of their loved one while they’re still alive. Yes, we’re lucky that our loved one is still with us, but we’ve already lost so much of them. Try not to feel guilty for having these thoughts and feelings. Sending you peace and strength as you say goodbye. Your mom knows how much you love her and all that you’ve done for her. 💜
Wow! Just wow! I couldn’t have said this any better myself. It is so hard to explain to others what I go through and why I act the way I do some times. So many just don’t get it. Thanks for the honesty. I know that isn’t easy to be so brutally honest but this is a horrific disease and affects every aspect of our lives.
Thank you so much! I try to be as honest as possible because I know many other people feel the same way. We shouldn’t feel like we can’t talk about our feelings. I want everyone to know that what they are feeling is normal in our situation. Thank you for reading!
I can’t relate so much! Took the words right out of my mouth. My dad and I have felt this way for a long time with my mom. There’s actually a term we found, it’s called Anticipatory Grief. Made so much sense after we found that. Love your blog!
Thank you so much! Yup, I’ve heard that term, too. It makes so much sense! Thank you so much for reading!
Thank you so much, especially for the paragraph that ends in these words (I’m going to insert a few words for my situation, because I know it will help me to do that) : “To be honest, I haven’t really felt like myself in years. I feel like someone who is just going through the motions of life, doing what I’m supposed to do, but without any real purpose. I feel like I’ve just been trying to get by, like I’m just trying to move on with my life. I’ve been mourning the loss of my husband for so long, but he still hasn’t gone anywhere. That’s the thing about mourning the living. You’re grieving for a long period of time with no closure. If you don’t have closure, how can you try to move on? You can’t. You don’t. You just hang on to whatever thread you have left. You put one foot in front of the other. Day in and day out. You do this for years, sometimes ten or more, until you find yourself actually hoping that he will just die already because you don’t know how much more you can take.”
You have summed it up so simply and so accurately. Best wishes in your journey.
Thank you so much! I’m glad you found some comfort in my words. Best to you, as well.
This was beautiful! It’s exactly how I feel, I’m just going on with life… with an emptiness that never goes away. My mom is end stage Alzheimer’s, and seeing her like that hurts me. I’m not myself… sometimes I just fake a smile to get by. I have everything I need, a loving family, a home, my career… but Alzheimer’s has stolen moments I could have had…
love got blog and I’m happy to have stumbled onto your Instagram account. Thank you…
Thank you so much! It’s so hard and no one knows what it’s like unless they have been through it. Keep making memories for you because you’ll always have them to look back on. Take lots of pictures and videos, too. We will all get through this together! I’m so happy that you’re here!
Thank you so much for putting into words exactly how i feel. My dad was diagnosed with Alzheimer’s and vascular dementia about 10 years ago…he is now in end stage and is in a nursing home. My mum cared for dad at home until 2 years ago. The day he went into a nursing home broke me. It was at that point like i felt i had lost him…because i live a 5-6 hout journey from him and i knew at that time i wouldnt even be able to have contact with him when i phoned every day to speak to my mum.
We visit 3 times a year. It breaks my heart as he can’t really speak or do anything anymore and he really just is a shell…my dad still looks like my dad, but in no other way is like my dad now.
I am so heartbroken and i live every day like i am grieving. I am a single mum to 2 teens so am busy, but the heartbreak and grief is with my all the time.
My daughter ( who i named after my dad’s mother) is going to university in September to study Medicine and my dad would have been so fiercely proud of her…i am sobbing to think he will never know and never get to be that proud grandad.
Thank you for opening your heart. It has touched mine and allowed me to express how i am feeling too.
Heather, I feel for you. I moved away from my parents about a year ago for my husband’s job. I didn’t have much of a choice. We had to move. It’s been such an adjustment, but I fly home every 3-4 months to visit for a week and I FaceTime when I can. My mom can’t talk on the phone either and she can’t have a conversation, mostly just a few words that don’t make sense. But I sing to her and make her laugh. It’s so hard. It will never be the same. I don’t have kids, but my sister has two girls and my mom will never know them. So sad. My heart goes out to you. Thanks for reading.
I just came across your article. I never read such a piece of writing on the subject that I feel i could have written about my own experience with my mum. It resonates with me on so many levels. Thank you so much for writing this.
Thank you so much! That means a lot to me! 💜
Two years ago was the last time a Mom was still somewhat herself. After seeing her disappear in stages, we left tondrivr back to Kentucky that year and my husband said “the Mom I grew up with is gone.” The grieving has lasted years. Last April she fell and broke her hip, and was placed in a nursing home – her 83 year old husband could not manage her anymore. Her disease progressed rapidly and she disappeared into the past. On March 14, after a bout with the flu, she finally made her last transition…to heaven. It was like we started the grieving all over again. We realized how much we missed her.
I’m so sorry for your loss. There are so many levels of grieving with this disease. We miss them on many different levels for a long period of time. Thank you for reading.
I have received much comfort from reading your blog. I’ve been caring for my mom since first diagnosed with cancer in 2016. She was beginning first stages of dementia at that time but I had no idea what was actually ahead of me. As the last few years progressed her cancer recurred in October of last year. She had robotic (DaVinci) surgery to remove the cancer from her rectum. After 3 major bleeds and 2 additional surgeries she was in ICU for a month, through her 84th birthday and Christmas. On New Year’s Eve she ended up in a skilled nursing facility for about a month. That in itself was a disaster. I finally gave up on the Nursing home facilities and brought her home. She has never been the same since the surgery. The dementia has progressed 10 fold and she is now home on hospice care. Even though she was digressing over the last two years, the last 3 months have been an absolute living hell. I have not been able to carry on a conversation with her since the day she went in for surgery. I now wish I’d never encouraged her to go ahead with the surgery to remove the rectal cancer. At least she would still have some of her mind left. But at the time the surgeon was adamit the cancer needed to be removed. She was 83 at that time and extremely frail. The hospice nurse believes she only has weeks left as she has lost any appetite and hurts constantly. I miss my mom. I miss being able to pick up the phone and call her when I have had a hard day, need one of her recipes or just want to vent. It breaks my heart losing her a little each day. This disease…. there are no words to describe how cruel it is. I believe it is of the devil. Nothing else could have invented something so totally devistating.
Thank you so much for reading and sharing your story. It is painfully heartbreaking and we make the best decisions we can at the time. Don’t beat yourself up. You did nothing wrong. Just be sure to give your mom as much love as possible in her final days. Strength and hugs to you.
I grieve on a daily basis. My mom is in mid-stage dementia. I’ve come to the realization in the past week that I have to help her find fun, joy and peace in the moment. That’s the only way I won’t be depressed and will also have fun, joy and peace in my life. I’m so tired of being sad. All Mom has is the current moment. If she’s finding joy in her moment, even if she won’t remember it, then all’s well. I just have to work to keep that in the forefront of my mind. If I can’t instill this in my heart then I haven’t won the battle. And a battle it is.
Yes! This is such an important lesson to learn! We can’t make them better, but we can try to make them happy as much as possible. They can still feel joy, love, and peace. We can only beat Alzheimer’s by trying to find joy in spite of it. It’s not always possible, but we can still try.
Thank you for sharing this, I can definitely relate! I hate Alzeheimer’s!
Thank you for reading!