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 19 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: 273
    100 Likes 100 Comments 25 Insightfuls Reactions 25 Care Reactions
    Member
    edited September 20

    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: 933
    Legacy Membership 250 Likes 500 Comments 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
    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: 58
    25 Care Reactions 10 Comments 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: 58
    25 Care Reactions 10 Comments 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?

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