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Caring for family member with LOMEDS

Bebebravo
Bebebravo Member Posts: 1 Member
edited May 2023 in I Am a Caregiver (General Topics)
Is anyone caring for LOMEDS patients? My family member was born with Down Syndrome . Now has Alzheimer’s. Please reach out

Comments

  • M1
    M1 Member Posts: 6,788
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    Member

    Welcome to the forum. I don't have personal experience in this area but i do have professional exposure (im a doc and have had two families in my practice). There was a forum member named Cobalt who was dealing with early dementia in her developmentally disabled son (not Downs), but I haven't seen posts from her in a while. I know she lived in Arizona and they had been featured in some newspaper stories out there.

    I hope others will answer your post. There is much good support to be had here, regardless.

  • harshedbuzz
    harshedbuzz Member Posts: 4,578
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    Member

    Hi and welcome-

    There was a woman who was caregiver to her sister with Down Syndrome when I first joined. I haven't seen her in a while.


    There was also this thread which included a member whose LO has dementia/Down Syndrome. Perhaps you can reach out to her. She didn't get many responses at the time.


    Trying to decide what is the best interest of my mom — ALZConnected


    HB

  • Marta
    Marta Member Posts: 694
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    Hello and welcome.

    How is your loved one doing? Are seizures under control?

    Are there specific issues that you want to discuss?

    Browse the forum- lots of good info.

  • Pam14
    Pam14 Member Posts: 4
    Ninth Anniversary First Comment
    Member

    Bebebravo - I believe I'm the person whom harshedbuzz is referring to. My sister with Down Syndrome passed away from Alzheimer's 6 years ago. You won't find much information on this site regarding Down Syndrome with Alzheimer's. I would recommend the Facebook Group called Down Syndrome and Alzheimer's Support or to follow the Facebook page of the Adult Down Syndrome Center near Chicago, IL. You'll find a lot of good information at both of those places, as well as support in the Down Syndrome and Alzheimer's Support Group. Reach out to me if I can be of any other assistance.

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

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