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Help with my sister

julbee
julbee Member Posts: 4
First Comment
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in I Am a Caregiver (General Topics)
My only sister and best friend was diagnosed with EO Alzheimers at 55. I am spiraling and want to find a support group for siblings. Can anyone please help?
Thank you.
Juli

Comments

  • harshedbuzz
    harshedbuzz Member Posts: 5,956
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    @GothicGremlin was a sibling caregiver.

  • GothicGremlin
    GothicGremlin Member Posts: 1,280
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    @julbee Hi there Juli. Yes, @harshedbuzz is right - I cared for my younger sister who was also diagnosed with early onset when she was 58.

    I totally understand about the spiraling - I was overwhelmed for quite some time before I got a handle on things.

    First things first - do you have a durable power of attorney for her? If not, I'd do that asap. Get all of your legal ducks in a row while she can still legally consent to everything. It's so important. If you can, see a certified elder law attorney to help you out with everything.

    A book you should both read is Somebody I Used to Know by Wendy Mitchell. Wendy herself was diagnosed with early onset in her 50s. That book is gold, and it's not a long read. My sister Peggy lost her ability to read fairly early on so I read it to her. It's not scary, and really, it's kind of inspiring. It took away some of the fears Peggy had. When I told Peggy the title of the book she said (without any prompting) "that's exactly how it feels, I'm somebody I used to know." I would never have had that insight without that book.

    I hope this is at least something to help you get started. Even though my sister has passed away, I'm still here most every day, so I'll see this thread, and I'll help where I can.

  • julbee
    julbee Member Posts: 4
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    https://alzconnected.org/discussion/comment/256765#Comment_256765

    @GothicGremlin Thank you so much for getting back to me. I haven't been able to come back here until now because I am so overwhelmed. I ordered the book you recommended although even the title makes me cry. I want to join a support group for folks caring for people with early onset. Can you please help with this? I am just so scattered and could use the assistance. Everything hurts so bad. Thank you.

  • julbee
    julbee Member Posts: 4
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    https://alzconnected.org/discussion/comment/256736#Comment_256736

    Thank you for connecting me. :)

  • julbee
    julbee Member Posts: 4
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    @Robert1320 Thank you for reaching out friend. My sister, Laura, goes to the doctor tomorrow to find out if she can take anything to help/improve her symptoms. I'm not even sure if that is possible. I am watching her whole world fall around her. She is 2.5 years older than me and very bossy and confident. She had to quit her very lucrative and prestigious career. Nothing seems real. They gave her 15 years. I'm hoping to get involved in a support group. Have you done something like that?

  • GothicGremlin
    GothicGremlin Member Posts: 1,280
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    @julbee You know, I never joined a support group, although one of my sister's close friends did (friends since kindergarten), and she found it helpful. You can call the Alzheimer's Association and they might have some groups in your area.

    For me, I got a therapist instead, and saw her once a month. She was great and helped me throughout everything. Over time I also built up a small, but dedicated, group of friends who'd let me vent, or who would help me brainstorm.

    The book, Somebody I Used To Know, won't make you sad - Wendy was quite resilient and clever, and she persevered. She also was of the mindset that she was going to beat the disease for as long as possible, and that's exactly what she did. That's why the book was so inspiring.

    I'm so sorry you both are going through this.

  • Robert1320
    Robert1320 Member Posts: 15
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    https://alzconnected.org/discussion/comment/257837#Comment_257837
    https://alzconnected.org/discussion/comment/257837#Comment_257837

    I attend weekly meetings at my church where (without a minister being present) we openly discuss our personal lives, the good and the difficult. It is truly warm and supportive.

    2 other members have direct experience with spouses having dementia.

    I hope this helps.

  • RuthAnnB
    RuthAnnB Member Posts: 1
    First Comment
    Member
    https://alzconnected.org/discussion/74426/help-with-my-sister

    I too have a sibling who has dementia he’s 61. His wife left him, and he moved in with me in July. My husband passed away 5 years ago from Pancreatic Cancer, and I wasn’t prepared for this. Happy to connect with you . We scheduled neuro testing last summer, but he canceled it. We won’t get new testing now until April 2026. I’m at a loss. Trying my best.

  • jennybeeay
    jennybeeay Member Posts: 26
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    Member
    https://alzconnected.org/discussion/comment/256785#Comment_256785

    She’s lucky to have a caring brother like 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
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