Who Am I Now That She’s Gone?


There are a lot of similarities between a small child and someone living with dementia. Specifically, frontotemporal degeneration. I remember so many of my mom’s odd quirks. Once, she poured her Coke into her glass of red wine. She drank it, much to my dismay. My toddler did something similar recently. She poured water into a bowl of hard boiled eggs then she mixed it around and ate it. I immediately thought of my mom. I can’t remember if I laughed or felt sad. Her disease caused her to mentally and emotionally regress… a real life Benjamin Button. I always thought having a young child would be, in some ways, easier than having a mother with dementia. In some ways it is: there’s so much more joy, more laughter, fewer tears. My toddler is also considerably lighter than my mother, and when she is upset or angry, I can actually pick her up and hold her… or relocate her. Something I wasn’t exactly able to do with mom (remember those times with her priest?). Lately though, I have been missing my mom; missing something about her… I can’t quite put my finger on the what. Maybe just her presence. Her scent…. I don’t know. I lost my mom, really, when I was in my 20s… I became the parent and she became the child. Before that, I was living in another city thousands of miles from home. I feel guilty about that. Maybe if I had stayed in Arizona, maybe I would have had more of those moments… precious moments that would have stuck with me, helped shape me into someone better that who I became. Instead, my memories are blurry… sometimes I’ll hear something or get a whiff of something and it’ll transport me to a particular time or place… but they’re few and far between. And sometimes I’ll dream about her. Those are the sweetest nights. I wish she came to me more often.

And then there are times when I can’t feel her at all. The loneliness is palpable.

I thought I would be relieved when my mom died. I was in most ways. I was glad she was no longer suffering in a broken down body. I was glad to put that chapter behind me and focus on my baby. I thought the hurt would fade away, too. Time does some neat tricks when it wants to, and frankly, I lost my mom a long time ago. But what I’m learning is that this kind of loss sticks with you. I know it has changed me. And I don’t know if it’s for the better. The final years were incredibly brutal and how one recovers from such a trauma is beyond me. To wallow in it would be selfish and indulgent, though there are days where I wish I could stew in it. So I try to keep going. I hate when things become stagnant. When that happens I desperately seek change. Is this blog, is the work that I do to share our story stagnant? I mean what else is there to say? Is it — this — the anchor holding me down or the means to truly let go. I have no idea what any of it means or if it means anything at all. I guess the truth is I don’t know who I am anymore now that she is gone.

That’s a little lonely, too.



  1. I hear you. I’m at the point that my mom can best relate to my 2 year old grandson and the 5 year has passed her up. If you have to leave the blog behind to move on, you’ll know it. I recently re read lots of my quiet blog and it helped me to see just how far down the rabbit hole my mom has gone in the last couple of years. But if you go silent, I’ll know where you are. You’ve helped me more than you’ll ever know.

  2. It’s been one year since my “demented dad” died. Like you were with your mom, Kathy, I was relieved when my dad passed away. I’m reluctant to admit it, but it’s true. It had been such a brutal, painful, lonely, exhausting journey . . . And the “loss” had already happened, so there wasn’t that mourning and grief; there was sadness but mostly relief. This isn’t something that you grieve and “get over” though; as you said, it changes you – in a deep, profound way that (I suspect) we will carry with us for the rest of our lives. I’m glad you’re writing – and enjoying your son!

  3. Thank you for your always honest and profound posts. I find myself over a 1,000 miles away from home right now taking care of my mother, who is dying. As you said, the experience of caring for and losing a loved one is brutal. But your post reminds me to appreciate that my mom’s mind is still intact, even as her body shrivels away. I should spend less time in fear and more time enjoying my mother’s presence while it is still here.

    Take care.

  4. Hi Kathy, I lost my mom 4 weeks ago to dementia. I too will never be the same, I quit my job 2 years ago to care for her at home and there were times I wanted to run, but I didn’t. She died at home and I was with her holding her, praying and telling her how much I loved her and I understood that it was time for her to let go. But I lied, I didn’t want her to go and there was so much more I wanted to tell her. Now I’m alone with all my thoughts and the pain and sadness is palpable. I will never be the same. I will go on and try to live a good life and be grateful for all the time I had with her and all the times I was able to kiss and hug her and tell her how much I loved her. Thank you for your blog you made my day a little less lonely.

  5. Hello there. My name is Patrick. I read your story about your mom and had to wipe away my tears. It made me think and wonder how my daughter will feel when I’m gone. I’m 36 yrs old, but a year ago and from the age of 23, I was medically 80 years old. I had a DVT (a blood clotting disorder, that of an 80 year old- unheard of in western Ky.) I have had medical problems all my life since birth, I was born blue. And I have been looking up information all night, then came to Pintrest to see if I could find info of Alzheimers and Dementia. Sad to say, most of what I have read as far as symptoms fit me. I had to chose between life and death at 11 years old. I am disabled, and have been since I was 15 years old. God has allowed me to do much in my life growing up. My Army recruiter said it was a miracle I even was able to join. I joined into the military police. When I got out, I tried for the local police dept., I think I was only denied for lack of college.
    I have got to also experience being a fire fighter for a few years (while on blood thinners) and got to work as a Correctional Officer for the state of KY. And have now, 90+ hours of college. I had a lot of help in getting through my Associate degree (I’m extremely forgetful). I also at the moment trying for full custody of my little girl. And tomorrow when I take her to school, then going to go to mental health clinic to see what can be done about my forgetfulness. After reading symptoms for Alzheimer’s & Dementia and Anosognosia, I’m thinking my problem lays somewhere in those catagories.
    But I’m trying to catch a grasp on the feeling of how my mother will feel if she finds out I have Alzheimers. I have been forgetful most of my life. And I’ve had trauma to my skull and cranial when I was a preteen and into my teenage years. I got mid way through my Bachelor of Science in Psychology. When it got to me writing about 8 different Hypotheses, then my brain just kind of gave up on trying. One hypothesis more complex than the last. I just hope something can be done to where I can remember things in life again. Mine is shot…

  6. I love your blog. I am taking care of my own demented mother, and sometimes it is the loneliest thing. It is a great comfort to read about your observations and experiences…..so much like real community with someone else who understands my day with a dementing, agitated, confusing stranger who gave birth to me, drove me to kindergarten, taught me to hopscotch, made my prom dress, etc. Thank you for writing.

  7. My father in law was recently diagnosed with dementia. He has been exhibiting symptoms for a few years now. It seems that his symptoms are progressing much faster now. I have found some really good articles online that help with understanding dementia. One of them that I found to be very helpful was from an oxygen hyperbarics clinic in Orlando Florida. You can find their information here: dementia. I would appreciate any additional suggestions on resources that may be helpful.

  8. I want my mother back. I miss the women she was. I do not know how I will get through the pain of losing her. She is everything to me. I have no other living family. I do no know how to bear living without her. She has always been here for me. The pain of watching her decline, anticipating her loss, is unbearable. There is so much more I want to do with her.

  9. Thank you for writing and sharing your story. My mother just passed away from what they believe is Pick’s Disease (we are waiting on the autopsy) and it is reassuring to know that I’m not the only one to have these emotions. I’ve felt guilty for a long time, but your blog has given me comfort in knowing that I’m not alone. Thank you.

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