Just got the scan results - now what?

Welcome. Sorry you need to be here. I’m sure the doctors will go over treatment options, but don’t get your hopes up, there is no cure, most will maybe slow the progression slightly. I think most here would recommend getting legal matters handled. See an elder law attorney. The basics would be a will, living will, durable power of attorney (very important) and medical power of attorney. Some people with dementia have anosognosia( the inability to recognize their symptoms and limitations). If you think she may be reluctant to sign papers because of this I would just tell her it is something that needs to be done given her age. Don’t put this off! The other thing I would recommend you do is learn all you can. Dementia is about so much more than bad memory. A solid grasp of what to expect will help you plan and navigate as things progress. While you may be able to consult with her on decisions for now, that will not be effective for long. One of the most important lessons I (and many others here)have learned is that trying to convince or reason with a person with dementia is not going to work. Taking independence from a parent is difficult, but we need to do it to keep them safe. It’s hard to suddenly be the parent for your parent. There will probably never come a time when your mom tells you she is not safe to drive, shes not able to live alone, that she needs help with finances (often one of the first areas to have problems), that she is getting confused with dispensing her medication or even that she is unsteady and needs to use a cane. You will need to keep a very close eye on all these things and step in when it’s time (even if she doesn’t like it). Another suggestion is to have a realistic well thought out planB. This part is a lot of work. If a facility is being considered you should know they can have a waiting list. Dementia care is very expensive. How will she pay for it? Will her house need to be sold? Will she qualify for Medicaid? Keep in mind the Medicaid 5 year look back ( that’s what it is in my state). What will Medicaid cover in your state? Is there anything that should be done to protect her assets? A lawyer can help with these things as well, but I would educate yourself on the basics so you can ask appropriate questions. I have attached a few resources that might be helpful. I hope this helps.

https://www.consumerfinance.gov/consumer-tools/managing-someone-elses-money/

https://www.agingcare.com/topics/295/anosognosia

https://www.medicaidplanningassistance.org/state-specific-medicaid-eligibility/

You really do have to actively advocate for your loved one. My mom passed the simple pcp, draw a clock test just fine. I had to insist on a neurologist referral. The neurologist not only diagnosed dementia but that she should not be living alone and should not be driving.

I would be careful about presenting the results to your Mom. Many people with dementia have Anosognosia which is a neurological condition that causes people to lack awareness or insight into their own mental health condition. The term comes from Greek and means "to not know a disease". A notable symptom is a lack of understanding, acceptance, or awareness of one's condition, even in the face of clear evidence. Discussing dementia with your Mom may cause anxiety or depression. I found the best thing was to just take each day at a time and never discussed the disease with my DH. Even the doctors were careful how they spoke to him. I started making all the decisions on my own immediately after the diagnosis. It’s good that you’re moving quickly with testing. There is no way to know how your Mom will progress. There is a wide range of progression. Some as short as 3 years and some as long as 20 years. It depends on what parts of the brain are affected by the disease as well as the overall health of the PWD. Please keep us posted and come here often for info and support. Read the book “The 36 Hour Day” and search online for dementia caregiving videos by Tam Cummings and Teepa Snow.

@Kekko

You mention that your mom is not a U.S. citizen and therefore does not qualify for Medicare or Medicaid. You also mention that you don't have funds available for care facility and referencing "her insurance while you have it". In that context and with other information you have shared:

If your mother signs a HIPAA form with the neurologist, s/he can have a private conversation regarding her condition and care. A medical POA/Healthcare Directive would work as well but sometimes the staff/gatekeepers still insist on a signed HIPAA form yearly.

The amyloid targeting therapy is likely one of the newer infusion medications— Leqembi or Kisunla. Both of these are expensive, especially if paying out-of-pocket. Leqembi costs about $25,000/year for the medication alone not including the infusion suite fees. Additionally there is additional testing during the course of the infusions which are done every 2-4 weeks depending on the drug prescribed.

If mom has access to better health coverage elsewhere, it might be prudent to consider her returning there for treatment and eventual placement. Does she have family aside from you? I know the long distance caregiving might not be sustainable. My parents were only 1000 miles away and I couldn't safely manage things.

Many folks here struggle with finding appropriate care for their non-English-speaking family members. A dear friend went through this with her own mom who came to this country as a young woman and lost her ability to speak English in the late middle stages of the disease. She moved her mom in with her in a home she had built specifically for this, but finding a caregiver fluent in German was really hard which limited the time friend felt she could leave her mom.

HB