3/4 Newbie here...been lurking for a few months and decided to dive in today. I'm a genealogy junkie and ended up here once the LOAD test from 23andMe showed up. This board has been great. Good info, good people...
AD runs on my moms side - My Grandmother and Great Aunt both had it, my mom (an only child) is showing signs. Since she is beginning to show some memory issues the family is now discussing her care. Some perspective - we recently had a family member pass and within 3 hours she forgot. She did ultimately remember, but it was a bit surreal.
How many of you disclosed the APOE status to your family members, especially siblings? Do you freely share? I'm debating disclosing since in our case, memory issues are somewhat par for the course. My concern is that her situation might be a little worse than just "getting forgetful".
As Floramaria suggested, here's a forum thread with lots of views: Tell my children or not?
and another wonderful thread started by "Anna" on Thoughts on Disclosure (Who have you told?)
Given your family's concerns with your mother, I would suggest that you consider a comprehensive evaluation by a skilled center such as the Memory and Aging Center at the University of New Mexico in Albuquerque. https://hsc.unm.edu/health/patient-care/neurosciences-stroke-care/memory-aging-center.html
I don't have any direct knowledge of their team, but I am a participant in a long-term clinical trial located at a major university Memory Center, I expect that UNM uses many of the same assessments that I take to assess my daily living skills (including interviews with my husband/study partner), my memory for short-term visual and auditory information, my ability to follow directions, my long-term memory and my processing speed for visual-motor task, as well as blood and urine analyses of lots of different helpful indicators of my health. The nurse practitioner I see every 3 months is also a member of the diagnostic Memory Center team, a position she trained for in addition to her research work and a responsibility she takes very seriously for the new patients and family members who have many, many questions. These evaluations are covered by Medicare and similar plans in almost all cases, and the staff would be able to answer questions about the cost. Whether it will be helpful to tell her of your ApoE 4 status or to test her are different questions.
Here's a link to forum conversations about Thinking About Testing?
You may want to discuss as a family or ask your mother if she has assigned someone to be her health care proxy and if someone has a durable power of attorney. That person and others can make her daily life easier, as in setting up automatic bill-paying, having cleaning services and groceries delivered, if needed, and arranging for transportation for routes that may be somewhat novel or less routine. (My mother was once helped by the staff and customers of a wonderful Ethiopian restaurant when she got lost on the way to a familiar location. They gently convinced her to wait for my sister inside instead out in the snowstorm outside. At that point, we also had a "surreal moment".)
I send you warm wishes for much support from family, friends, professionals and this forum, Jeff.