newly diagnosed.

Paula Lackore · October 29

New diagnosis, no treatment or medication started yet. I am 68 and have suspected this diagnosis for almost 18 months. Felt gaslit by my family when I mentioned it. They were in denial and basically told me it was just ADHD. Now that I am diagnosed, THEY are the ones that are like deer in the headlights. Husband says "don't worry, I will always be there for you", then goes off to his 60 hour a week job. I get words, but no actions such as time off to help me deal with the grief, help in planning our future etc. I am the primary caregiver for my adult disabled daughter. My stress load in this "job" has not just evaporated since I got this diagnosis, and I can't just "quit". I have mentioned more times than I can say that my husband should retire. He is 69. His response has been all over the place like "but I love my job" to "but we need the money" to "but what will I DO if I retire". Clueless that he should retire and take care of our daughter AND now ME! He does try to juggle ALL the balls, but still works 60 hours a week. I feel like he resents that we are sick. He does not want to sacrifice his career, even though I sacrificed MINE (lawyer) to care for our disabled daughter. I should mention that he is on the autism spectrum and doesn't have a good sense on ways to emotionally support me and our daughter. Just looking for advice on how to move forward, reduce my stress load and feel like my family is TRULY supporting me.

jaycey · October 29

I'm so sorry that you find yourself so unsupported - it sucks when the people around us minimize or ignore or even deny the terrifying reality of this diagnosis. It also took me more than 3 years to get a diagnosis, after misdiagnosis after misdiagnosis after misdiagnosis. I don't have any family to support me, which is a different kind of sad and scary - I'm seeing lawyers to set up power of attorney, and final wishes and stuff like that and I'm sad every time I read about all the support groups for caregivers, and so few for us.

One thing that helped me was to contact a new kind of caregiver - a "thanato-doula". In the same way a doula helps you bring a new life into the world, a thanato-doula helps you make plans for leaving this world. While you figure out how to make your husband pay attention (maybe sign him up for the caregivers section of this site, and sit him down in front of one of the videos about living with this illness) it might help you figure things out by having somebody to talk to - a therapist or a thanato-doula, who is specialized in helping you figure out how to live your best life now.

And, know that we are all living versions of what you've encountered, so keep us in mind.

LBC83 · 6:14PM

https://alzconnected.org/discussion/74475/newly-diagnosed

Sorry to hear about your situation. AD is a difficult enough diagnosis to deal with, let alone everything else you have in addition to your new life situation.

The Alzheimer's Association (the organization that sponsors this forum) offers a free 24/7 helpline "offering support for people living with dementia, caregivers, families, and the public. Connect with a live person who can provide information, local resources, crisis assistance and emotional support."

The 24/7 helpline phone number is 800.272.3900

In terms of treatments, there are now two FDA-approved drugs which were shown to reduce amyloid plaque levels and slow cognitive decline in their respective Phase 3 clinical trials: Leqembi & Kisunla. Again, the Alzheimer's Association website provides good information about these (and other) treatment options, see the link below.

I recently had my 36th infusion of Leqembi (the infusions for Leqembi are every two weeks). I have had zero side effects.

https://www.alz.org/alzheimers-dementia/treatments/navigating-treatment-options

newly diagnosed.

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