Continual Grief: I Miss My Mom

CJJE · June 24

I visited my mom again today at her skilled nursing facility.

She was diagnosed with Alzheimer's disease in 2018 (she had probably been experiencing it since the early 2010s, in reality), and I made the gut-wrenching decision to place her into an SNF in 2021.

She's currently experiencing late-stage Alzheimer's. She has Wernicke's aphasia and oral dysphagia (though she still maintains a relatively healthy appetite, thank God), is mostly immobile, and is becoming less verbal and more tired every day. It's just bizarre to see this person who was always so full of life, extroverted, and talkative become a shell of who she used to be, you know? Alzheimer's is such a thief.

Visiting her now is oddly similar to encountering a stranger who was not always a stranger: a person you once loved and still love, but that person has no clue who you are. Little-kid me grieves that loss every time I see her, and adult me is overwhelmed and doesn't know what to do with it all.

I just miss my mom, y'all. I miss her so, so much, and she's still physically here. That's the thing. I'm inexplicably grateful that she's still here and that I get the privilege and opportunity to be whoever she sees me as in every moment we spend with each other. I'm just frustrated and angry that Alzheimer's continues to steal from her and from me.

Thank you for allowing me to share.

akc783 · June 25

I am so sorry. There is so much loneliness and grief that comes from this disease. How far along into the stages was your mom when she got diagnosed in 2018?

ARIL · June 25

I am so sorry. We are a few steps behind you in this awful journey, but I get it: I am grateful I can spend time with my father, and it hurts to witness all the anxiety and to be asked if I ever hear from his daughter.

sandwichone123 · June 25

It's hard. The body is still there, but we're grieving the loss of the person they were. We have ambiguous grief—we're grieving, but our grief doesn't come with finality or healing or the rituals that support people in their grief—it just hangs there as we watch the person we once knew disappear but not end.

JulietteBee · June 25

Anticipatory grief is very real. It is extremely difficult, if not impossible, to not be negatively affected when we witness someone we love fading away before our very eyes, little by little, day by day.

Take some comfort in knowing that you do not walk alone. You have an army of online supporters on the same journey as you, though we maybe walking on a different trail. Some of us may be further ahead. Others may be a little behind. We know your pain! We feel your pain! Please accept my virtual 🫂s and 💋s. You will be in my 🙏🏼ers.

ESkayP · June 25

I just posted in a separate discussion about the same grief. I can't believe the person I go visit is my mother. She's sometimes spacey but pleasant. Other times, she's agitated and contrary like a toddler who needs a nap. I'm concerned about getting her the care she needs because she's too physically fit to qualify for hospice. The MC facility doesn't seem to know what to do with her. They just keep calling me and asking me what I want for them to do when she won't take her evening medications or won't sit still for dinner or won't leave a male resident alone who she thinks is my father. I don't know what to tell them. I don't know this person anymore. Their guess is as good as mine at this point.

psg712 · June 25

Agree with all of you. My mom has had two recent hospital stays, and it was a toss of the coin how she'd react to me anytime I visited. She's much less verbal than she used to be, so it's hard to judge what she's thinking or feeling. She's there but not there. Just when I resign myself to another step down in progression, she says something unexpected. This morning she answered accurately when the PT asked where she grew up! She hasn't been able answer a question like that in at least two years. I give up trying to figure it out.

Rob's Daughter · June 26

This terrible disease has a hold on both my parents. My Dad is further along but my mom is quickly catching up. I visit, but its getting harder and harder to do so. I just want to talk and visit with my parents like I used to. I go with things I can talk about then clam up… The little kid in me wants my mom and dad. This is so hard.

ReineckeB · June 30

My mom has not been herself in years and I truly miss her too! I am caring for her at home and she is there sometimes but still not the strong independent woman I relied on for so long. I am watching her slowly fade and it just feels so unfair! I feel like I cant really mourn her because she is here bodily but I cant talk to her like I used to. She is just so changed. It is such a strange place to be. I feel for you! You are not alone. It is so very hard.

NicoleP1486 · July 2

Hey - My mom was diagnosed in 2018 as well, the same week I found out I was pregnant with identical twins. She was 59 when she was diagnosed.
I completely feel what you're feeling. I'm so sorry you're going through this too, it's so hard.
My mom went into memory care just over a year ago. She hasn't known who I am (her only child) for years, nor her grandchildren or my dad (husband of 40 years). I honestly don't visit her as much as I 'should' because she's an hour away and it's so heartbreaking. The last time I visited she shooed me away. She doesn't talk anymore, often doesn't even smile, and can barely walk - even with assistance. I'm so scared that this will be my fate as well. I'm doing A LOT of research about how to prevent alzheimer's disease and am doing a lot of great things other than exercising...I really need to exercise...
Anyway, I'm with you, even though she's physically still here, mentally she's been gone for years and it's so hard. I feel so guilty not visiting all the time while she's still alive but...at the same time...it breaks me and only her body is alive, her brain isn't (in a sense, if that makes sense).
Big hugs, I'm sorry you're going through this too.

Continual Grief: I Miss My Mom

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