Have any questions about how to use the community? Check out the Help Discussion.

I have EO alzheimer's

redheaven18
redheaven18 Member Posts: 1 Member
edited September 2025 in I Am Living With Younger Onset Alzheimer's

It took forever to accept this diagnosis. My family has always held me to very high standards. Along with the diagnosis they all stopped contacting me. I have begged anyone even my husband to come talk to my doctor during my appointments. They all tell me this is my problem. My doctor thinks I need to find alternative support. I have no idea where to begin and I am so scared of what the future holds for me now.

Tagged:

Comments

  • JulietteBee
    JulietteBee Member Posts: 620
    250 Likes 250 Care Reactions 500 Comments 100 Insightfuls Reactions
    Member
    edited September 2025

    I am so sorry to state the obvious. Your family sounds downright awful. 😖 They obviously don't realize there could be a genetic predisposition. Their day may very well come, sooner that later.

    Hugs are being sent to you🫂

  • eaglemom
    eaglemom Member Posts: 1,180
    Legacy Membership 1000 Comments 250 Likes 100 Care Reactions
    Member

    I'm so sorry that your family is acting this way. Sadly its really quite common. (Our son has accused me of causing DH's dementia and removed himself from us. Haven't heard nor seen him in over 10 yrs. It's pathetic.) But less I digress.

    Please do not beg them to attend your appointments, it only upsets you. If they want to attend, they will tell you. That sounds harsh, but its the reality for now. Do you have a bestie, a good friend? Have you shared with her? Take her to the appointments then do lunch. Make it fun. Don't share news about you with your family, again you are hurting you in doing that.

    Next I would try and find a support group or groups. They can be helpful. Do some research and see what's available in your area. Participating with others in your same shoes is helpful.

    Take a deep breath, we're here to help you on this bumpy journey.

    eagle

  • brenda4712
    brenda4712 Member Posts: 3
    5 Care Reactions First Comment
    Member

    Hi I just reviewed my PET scan with my doctor and she has confirmed I have early onset AD. I am a single parent and have been feeling anxious and fearful. I am 53 yrs old. Next steps is to do a blood test and then start the drug therapy. As many of you have mentioned I don’t have many symptoms. I forget things occasionally but then remember it in the next few minutes. The only reason I even had an MRI was due to a tremor in my hand. I am thankful that I did go to the doctor because it may have been too late for me if I let it go untreated. I am holding on to faith and prayers to make it through this. Thank you all for sharing. 

  • troubledone
    troubledone Member Posts: 60
    25 Care Reactions 10 Comments First Anniversary 5 Likes
    Member
    https://alzconnected.org/discussion/comment/254535#Comment_254535

    I'm thinking of you Brenda!

    I would get a second opinion, to be sure of the diagnosis.

  • troubledone
    troubledone Member Posts: 60
    25 Care Reactions 10 Comments First Anniversary 5 Likes
    Member
    https://alzconnected.org/discussion/74143/i-have-eo-alzheimers

    I'm caring for my mom. Both my sisters jumped ship 10 years ago. I had to care for my dad with Alz, and now my mom. I am not married, no kids, it all makes me concerned for myself. And I worry I will end up with Alz too.

    I don't understand why your husband won't come? As Juliette said, he sounds horrible. Same with your other family members.

    Try to reach out to all of your friends. If you just keep calling, odds are you will find someone who offers some form of help.

    And if it's early onset, maybe you can start making medicaid plans now, and get yourself situated so that if things do get worse, you will have a plan already in place.

  • kovacmar80
    kovacmar80 Member Posts: 1
    First Comment
    Member
    I like the others here am sorry to hear what you are going through. I am caring for my sister who has EO dementia. She was diagnosed with PCA and Lewy Body dementia. We were fortunate to get her enrolled in a clinical trial of Leqembi right after diagnosis. She was assigned to the treatment arm and received monthly infusions for 14 months. She did well on the medicine and it helped her to maintain her level of functioning and not to decline. About 6 months after the trial stopped, she started to decline mentally and physically.

    I would also recommend getting your financial plans in place for who to appoint as your power of attorney for medical and legal and things like that. I hope you can soon find a supportive caring person to help you through this. Sending you hugs.
  • BrainFog
    BrainFog Member Posts: 8
    5 Likes 5 Care Reactions First Comment
    Member

    Can you try to find a private caregiver early to estbalish a good relationship and let them learn about you and the care you do/will need?

  • TammyB63
    TammyB63 Member Posts: 6
    First Comment
    Member
    https://alzconnected.org/discussion/74143/i-have-eo-alzheimers

    I completely understand where you are. It is such a terrible disease.. the not knowing what is next. At least you have a husband to lean on. That is alot. Feel safe in that.

  • eaglemom
    eaglemom Member Posts: 1,180
    Legacy Membership 1000 Comments 250 Likes 100 Care Reactions
    Member

    Just checking in to see how you are doing.

    eagle

  • Sheri Russell
    Sheri Russell Member Posts: 8
    First Comment
    Member
    https://alzconnected.org/discussion/74143/i-have-eo-alzheimers

    I understand exactly how you feel. My husband, daughter and son only want to deal with things when they come up and never want to discuss how I’m feeling. I have been going to therapy and have decided I need to move on so I can live my best life while I can. I surround myself with my handful of close friends as they are willing to listen and talk. There are still days where I am sad, angry and scared but they are few and far between.

  • amymetzger
    amymetzger Member Posts: 3
    First Comment
    Member

    Hearing your story makes me really sad. Do you have any friends that you can turn to? We cannot choose our family but we can choose our friends. A lot of health care systems have Alzheimer’s programs. If you can find one, maybe they would have some resources. If they cannot help you, maybe they can point you in the right direction.

  • Michele P
    Michele P Member Posts: 549
    500 Comments 250 Likes 250 Insightfuls Reactions 25 Care Reactions
    Member
    https://alzconnected.org/discussion/74143/i-have-eo-alzheimers

    I am so sorry that you are in this situation. If you haven’t done so, consult an Elder Law attorney immediately to get your affairs in order while you can still sign documents. I would tour assisted living/memory care facilities and get your name on a waitlist with a refundable deposit. Your family members are horrible people Unfortunately, you can’t depend on them to care for you. You need a back up plan now. Eventually, you will need someone to take over all of your finances and care. Talk to your attorney about this and put these people in place now.

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

Community Guidelines


Click here to review the ALZConnected Community Guidelines

Categories