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Constantly saying Help Me please

JulieOrleans
JulieOrleans Member Posts: 2
First Comment
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I am a daughter with autism age 50 and live with my elderly father age 85. He keeps repeating the phrase Help ME please, very insistently, and then switches to Help me Jesus or praying the Hail Mary. He has a caregiver in the morning and my brother comes in the evening for a small amount of time. I’m left alone to hear him crying out. When I ask him what’s wrong or what does he want he says “it’s just something I say.” And acts dismissive towards it. But when he’s saying it he’s saying it in a crying, pleading, despairing, emotionally begging way and it is very disturbing for me to hear it since he was my father who I depended on who was strong and giving to me, it is very triggering to lose him like this, I feel it is like listening to him beg off the side of my boat, treading water and just staying afloat and keeping his head above water and begging for someone to help. I can’t stand it anymore. It’s not simply a phrase as when I ask him he is making it out to be, it’s a true begging, pleading, emotional call and it’s very extremely triggering to me. The caregiver is only here in the morning and I don’t know what to do for him. I just lost my mom in April which was 9 months ago and she had Parkinson’s and couldn’t walk and that took everything I had out of me to give her everything I had as far as caregiving is concerned. Now I feel erased, wiped out, I feel emotionally dead and numb. 3 months after mom died dad began sleeping a whole lot and frequently deciding to sleep versus to eat lunch. He’s only awake a few hours a day and spends the rest of his time asleep. I try to cook him healthy foods but he only eats whatever the caregiver and I serve him like a mouse, half the time he says he isn’t hungry or he only eats 1/2 cup of food then says he’s full. He did not want to do physical therapy because he has a fracture in his back that makes it painful to do physical therapy, subsequently his muscles have gotten weaker. He has loose bowel movements/“accidents” such that he decided not to attend his own wife’s funeral, for fear of not being able to get to bathroom on time. Sister takes him to all his doctor appointments and dentist appointments. Brother brings him a meal in the evening. Caregiver fixes one egg, 1/2 packet of grits, one toast with jam, coffee with cream, every morning. Like I said he eats barely nothing and I’m only satisfied and happy if I see that he has eaten the whole meal! I cook him vegetables and fish and other things. But other than that he sleeps and wakes and sleeps and wakes and calls out and seems to be desperate and crying out for help. Early on I had asked my brother to pay for a daily or two or three times a week exercise person to visit dad so he wouldn’t get bed bound but brother said “no bc he is an old man”. So we did get a physical therapist for about two months thru the hospital but father didn’t want to do the exercises bc of back pain, I knew what the future would hold for him if he didnt do it. I’m in New Orleans and this is where I grew up with my parents and siblings. Still living in the same house. Surrounded by memories all around me, I have autism and I’m isolated and alone. I never got help for having autism bc I just found out I had autism two years ago. I’m still trying to deal with the loss of my mother and so I can’t even begin to emotionally confront or process or deal with the loss of my father. I also lost my cat who I had to put to sleep in January. He was my best friend and got me through a lot of trauma. Now every since mom died I began having severe health issues that make me unable to be a caregiver for my dad either physically or emotionally. Caregivers just prepare food and then sit. They help him to the commode, give him bed baths. They are only here for four hours in the morning. Then brother comes at 445 for 20 minutes to give dad his evening meal and pills then quickly rushes away. I’m left isolated alone and triggered by hearing dads crying out. I can hear it from one end of house to the other. But his voice has grown weaker. I want to ask anyone who can give help, Please Help Me!, but for myself, because without me getting help for myself then I can’t be of help to him.

Comments

  • JulieOrleans
    JulieOrleans Member Posts: 2
    First Comment
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    There was an error rendering this rich post.

  • towhee
    towhee Member Posts: 616
    Eighth Anniversary 500 Comments 100 Likes 25 Insightfuls Reactions
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    Welcome JulieOrleans. Listening to those repetitions is really hard, sometimes it can make you really heartsick. I think the technical term for the repetitions is perseveration. Often they stem from some kind of general anxiety or sometimes chronic pain. You might ask your sister to arrange a doctor appt to check into this, especially if it is a new behavior. You will get more advice and resource tips later today, but one that is available 24/7 is the Alzheimers Helpline 800-272-3900. You might have to wait for a callback, but they can help with concrete advice and emotional support.

  • SiberianIris
    SiberianIris Member Posts: 116
    100 Likes 100 Comments Second Anniversary 25 Insightfuls Reactions
    Member

    Welcome to the group! I'm sorry you've been dealing with so much.

    Elderly saying "help me" over and over is pretty common in later stages of dementia. It stems from their anxiety due to a broken brain. Appropriate medication for their anxiety can give them comfort.

    Here is a discussion about "help me" from another discussion group I'm on:

    https://www.agingcare.com/questions/mother-has-suddenly-started-repeating-help-over-and-over-when-im-not-in-the-room-but-otherwise-seems-493726.htm

  • SDianeL
    SDianeL Member Posts: 3,273
    1,500 Likes 1,000 Insightfuls Reactions 2500 Comments 1,000 Care Reactions
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    Welcome. So sorry about your Dad, Mom & fur baby. Vocalization is common in late stages of dementia. We understand what you're going through. This explains it and offers some tips: Also read the book "The 36 Hour Day" which helped me after my husband's diagnosis. Search online for dementia caregiving videos by Tam Cummings or Teepa Snow. Talk to his doctor about medication to calm him. Hugs.

    When someone with dementia repeatedly says "help me," it's a sign of distress, confusion, or unmet needs like pain, hunger, loneliness, or fear, often due to short-term memory loss making them forget they just asked, so caregivers should focus on the emotion, not the words, by offering reassurance, comfort, and checking for physical issues rather than just giving the same factual answer. Identifying triggers like overstimulation, sundowning, or an unfamiliar environment is key to providing the right support and calming them. Common Reasons for "Help Me"

    • Emotional Distress: Anxiety, fear, insecurity, loneliness, or feeling lost.
    • Physical Discomfort: Pain, hunger, thirst, needing the bathroom, or being too hot/cold.
    • Cognitive Issues: Short-term memory loss, causing them to forget they just asked.
    • Environmental Factors: Overstimulation, changes in routine, or specific times of day (sundowning).
    • Unmet Needs: They might be trying to communicate a need they can't express clearly (e.g., fidgeting with clothes). 

    How to Respond

    • Focus on Emotion: Acknowledge the feeling behind the words (e.g., "I see you're scared") rather than the words themselves.
    • Provide Reassurance: Offer comfort with a hug, a soothing touch, or by saying "You're safe with me".
    • Check for Needs: Systematically check for pain, hunger, bathroom needs, or if they are too hot/cold.
    • Validate Their Reality: Acknowledge their feeling as real, even if it's not factually accurate.
    • Look for Patterns: Note when it happens (time of day, place, specific people) to find triggers.
    • Stay Calm: Your calm presence can help de-escalate their anxiety; breathe deeply and avoid getting frustrated. 

    What Not to Do

    • Don't Just Repeat the Answer: Giving the same factual answer repeatedly is ineffective and can increase frustration.
    • Don't Get Angry: Anger will heighten their distress; they aren't doing it to annoy you. 

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
Read more