Recent Alz dx -not coping well

WendyBlue · May 9

Hello, Last year both of my parents passed from Alzheimer's. One month after my father's passing I was dx with Alz. My neuro believes I've had it for aprox 2 yrs. Brain shrinkage of both sides of my brain and amaloyd plaques in the frontal areas. All confirmed with MRI and PET scan. Issues are not too troubling nor are they consistent at this time. I'm still driving, but not comfortable with being behind the wheel. I am having trouble coping. The witness of my parent's demise is so fresh in my mind and I know what awaits me. My future and my retirement plans are gone. I have 2 adult sons -one has advised me that he wants nothing to do with my future care, including acting as POA, etc. I've dissuaded my other son from any notion because I lived the life of a full-time (and very lonely) caregiver for my mom the last 4 yrs of her life and don't want that for my children. My grandchildren have disappeared from my life because they can't cope with another loss to Alz. I'm isolating from friends because what is there to say? I feel like I don't want to burden anyone with my worries or disease.

I feel like a fraud -an imposter moving thru this life. Hiding my dx from the real world because would they accept me or pull back? Trying to function in a normal capacity although I know what is lurking around the corner for me. I'm not well off so I don't have the resources for a comfortable assisted living future -nor do I want that for myself. I so wish MAID was an option for those of us living in the USA. It is not realistic as you need to be of sound mind and with a life expectancy of 6 mos at the time you go thru the procedure. That's not possible for those with Alz. I've decided to go to Zurich to participate in their VAD program. It's expensive and I can't quite afford it at the time -almost. Having to dig myself out of depression and isolation long enough to do some type of work (don't get my started on my work anxiety and not being able to remember work tasks!) in order to save up for this trip. All the while I know the monster that is Alz is lurking and waiting to pounce. I'm fearful every day that I'll wake up and not remember the plan I've made and will be stuck seeing this consume me. I watched this consume both of my parents and it's not something I want to go thru nor something I want my family to witness.

OK, thanks for allowing me to share.

LBC83 · May 10

Both of my parents died from dementia, we presume my mom had AD. When I started noticing minor short-term memory issues, I got tested and was diagnosed with MCI. I started on Leqembi. After one year, I had a quick cognitive test which showed no decline over the year. I take that as a very good sign. The Phase 3 clinical trials for Leqembi showed that for those who started on the drug early in the process (specifically those with low tau levels), had a better chance of mitigating cognitive decline. My take-a-way is that with the two drugs now on the market (Leqembi & Kisunla), when taken early in the progression of the disease, there is a chance that the "monster that is Alz" is put on hold and not "lurking and waiting to pounce."