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    What can I do?

    TU2823
    TU2823 Member Posts: 7
    5 Care Reactions First Comment
    Member
    in I Am Living With Younger Onset Alzheimer's

    I’m feeling so down. Like a bad daughter. I’m hearing from family/friends that my LO is saying things to them that are untrue about me. This is not about ME however it’s very hard to hear. I reach out everyday in some way to my LO- in early stages of disease. Texts, phone calls, left messages etc. every day- many times not responded to. I plan get togethers every week- we talk or see each other often, but am told by family and friends that LO “never hears from me or sees me”. I’m not sure if this is related to ALZ or if it’s more of a guilt thing that has been common for most of my life. It’s kind of an attention thing for LO that was there way before ALZ symptoms years ago. I know I shouldn’t let it bother me but it’s so hard to hear and is just not true. I know LO must remember from day or week before but maybe not? I know that I reach out and plan gatherings and those that know me know that but how can I make it better? How can I feel better about this? If I discuss with LO I know it will b a struggle and LO will b upset with me. I don’t want any confrontations or anything that will cause more confusion for LO. This must sound like I just want validation but I want to know how to better communicate and want to help with LO to remember these daily conversations….its especially hard because some family members are in denial and or don’t want to discuss LO symptoms and disease. I appreciate this forum so much as I’ve learned so much and feel like I can vent. I want to put LO feelings first- not my own- I also need to know I’m doing the best I can. Any feedback or suggestions?

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    • Iris L.
      Iris L. Member Posts: 4,624
      Legacy Membership 2500 Comments 500 Likes 250 Care Reactions
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      Your LO can NOT remember daily conversations. Do not discuss dementia with LO, because she has anosognosia. This means the PWD is unaware of having dementia. Your LO will no longer function in the old ways. You and the family will have to learn new ways to communicate with your PWD. Read the online material at Jeanne's Newcomer Group. Post in the Caregiver's board. The members are knowledgeable and willing to share. Since your LO cannot remember anything, your LO is vulnerable to safety hazards. Your LO should not be living alone.

      Iris

    • eaglemom
      eaglemom Member Posts: 727
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      Iris is totally correct. Your LO can not remember the daily conversations you have. Reminding them does nothing except upset them, and that's not a good thing. You can only worry about what you do for your LO. How others (family, etc) react falls on them, not you. I know it feels like it falls on you, but it doesn't.

      Do what you can and have been doing for your LO. When others mention to you what your LO is saying, stop them before they even start. Just say "I called her yesterday" or whatever. Do not let them push your buttons, because that's exactly what they are doing. The line "I'm doing the very best I can" might help also.

      eagle

    • Iris L.
      Iris L. Member Posts: 4,624
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      Your family members are uneducated about dementia. You must educate yourself. Read alz.org, plus read a lot of threads. Your LO is at risk for a crisis. Do not wait for a crisis. Begin to look for a Memory Care facility, or someone (who is educated about dementia) will have to move in with her full-time.

      Iris

    • klucey
      klucey Member Posts: 41
      10 Comments First Anniversary 5 Care Reactions 5 Likes
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      What can I do?

      TU2823

      just an aside — check the caregivers forum here. All those issues I’ve experienced with my mom and they’re all due to Alzheimer’s. You can only do the best you can. And you are. It’s hard to deal with family members in denial, but that should unfortunately ebb as her symptoms become more pronounced. I would make fewer efforts and ask family/friends if they can refrain from passing on her comments. I find with my mom to focus only on the present, compliment her. And know she will not remember anything. I can’t ask her about things that happened earlier in the day. I avoid asking her questions because she gets upset that she can’t remember. She always says she hasn’t seen my brother in ages (he visits a couple times a week) and tells him the same about me. Again it’s the disease. Because your mom doesn’t remember your efforts you can reduce them. You need to take care of yourself . Call the Alzheimer’s Association help line here - they offer free unlimited counseling with Masters level therapists trained in Alzheimer’s. You can express all your anxiety guilt anger - they really offer great empathy and advice. Hang in there. It’s so tough.

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    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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