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Continual Grief: I Miss My Mom

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CJJE
CJJE Member Posts: 16
Fourth Anniversary 10 Comments
Member

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.

Comments

  • akc783
    akc783 Member Posts: 11
    First Comment
    Member

    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
    ARIL Member Posts: 102
    100 Comments 25 Insightfuls Reactions 25 Likes 5 Care Reactions
    Member

    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
    sandwichone123 Member Posts: 992
    250 Likes Fourth Anniversary 500 Comments 100 Care Reactions
    Member

    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
    JulietteBee Member Posts: 49
    10 Comments 5 Insightfuls Reactions 5 Care Reactions
    Member
    edited 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
    ESkayP Member Posts: 65
    25 Care Reactions 10 Comments 5 Insightfuls Reactions First Anniversary
    Member

    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
    psg712 Member Posts: 513
    100 Care Reactions 100 Likes 100 Comments 25 Insightfuls Reactions
    Member

    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
    Rob's Daughter Member Posts: 26
    Second Anniversary 10 Comments 5 Care Reactions
    Member

    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.

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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