Questions for the neurologist & Can we keep it a secret for now?

Same here. We have not discussed the specifics of the disease, only “memory problems that many people have when they get older.” This seems to work better.

Living independently would only ever be a stopgap; the disease can progress rapidly. I would be very wary of trying that experiment. More bluntly: that seems dangerous—even if not right now, then very soon. Another member of this forum, @H1235, recently said, “From the time of diagnosis to the time someone is no longer safe to live alone is very very short.” I think that is true.

The language situation is a conundrum. Are there any other alternatives? Could someone from the senior center make a home visit or two? Maybe there is a religious organization that might make home visits in her language? Even just a few individuals who could come around—maybe hired companions who speak her language?

I recall that @lisn2cats dealt with related issues with her mom. Maybe she’ll be able to suggest other possibilities.

Wishing you the best—so sorry about the diagnosis.

I never talked about Alzheimer’s with my husband. The doctor talked about white matter disease. I agree no need to talk about it. It will only cause her anxiety. The Neurologist won’t be much help. They may prescribe Memantine which is supposed to help their focus. I saw no difference but left him on it because he had no side effects. Did the Psychiatrist know about her AD when he suggested not doing things for her? Because very soon you will need to take over many things for her. She will be vulnerable to scams and financial problems. Can you monitor her bank account? Do you have a DPOA and Medical POA? You need HIPPA forms too. As the disease progresses her safety will be a major concern. Cooking is dangerous. She could start a fire. Just be sure to monitor her behavior closely. Things can change quickly. To get her to go to the senior center fib. Tell her they need her help. Go with her a couple of times at lunch. Ease her into it.

Moms neurologist used the dementia word and unfortunately mom remembers. She sees dementia as only being about memory and since memory is the least of her symptoms she feels she is in the very early stages and should be fine to live alone in home. She worries about losing her memory and not knowing who her family is. I would watch and observe her very closely to determine if she is able to live independently. Sometimes a pwd is able to cover their problems. Im kind of ashamed to even tell this story. I took my mom to the dentist every 6 months for a checkup. At each visit she received a new toothbrush, floss and some toothpaste in a little bag. I assumed she would know to replace her old toothbrush with the new one. When I moved her from Al to a nursing home I found 5 bags from the dentist office. She hadn’t changed her toothbrush in over 2 years. When she lived with my brother he said she was fine doing her own laundry. I watched her run the washer twice without putting any clothes in it. I’m sure she eventually did a load that actually had clothes, but does that mean she can still do her own laundry? Being able to do basic things around the house doesn’t mean these things are done with ease. They may be taking a great deal of effort and concentration. This can result in stress and a worsening of symptoms. Another big concern for us was her anosognosia. She does not understand her own limitations. This could put her in a dangerous situation.

Hi Kekko (as in "kekko-desu?",

Sorry for jumping in late, but as @ARIL mentioned, I can totally identify with you! And, hopefully reassure you that you are not alone. I, too, am an only child. When my dad (American) passed in March, my 90-year old mom, who is Japanese, had such a rough go of it. Culturally, anything to do with mental health is a taboo and I had to be very careful how to address her declining memory and - eventually - her dementia and other brain-related issues.

In addition to just the stresses of aging, stress of knowing (in her heart) that she is not as cognitively sharp as she once was, and - most challenging of all - English is not her native language. I speak a little Japanese but if I was suddenly sent to a rest home in Japan where no one spoke English, I know I wouldn't be able to cope well. It's so isolating. And, traditionally, most asian cultures rely on family to take in their elderly … even going so far as to send them back to their homeland (at least that's what my Vietnamese friends tell me). When I went to visit AL facilities, one of the first questions I asked were how culturally diverse their population were and dining options (my mom would rather die if she only had mashed potatoes and beef or sandwiches to choose from).

She insisted for months that she was fully capable of living independently in her home. She was so not. Not emotially, cognitively, or physically. I was fortunate (!) to have two falls and, finally, an unforeseen house incident that forced her out of the house. My mother is empathic and feeds off my energy and mood. So I created a sense of panic and she willingly moved into a hotel then into the AL facility's respite (temporary) housing. Before she could permanently move into AL, she had to see a neurologist. My mom's English was good enough to understand that the doctor was a brain doctor - more specifically, she kept saying I was trying to get her diagnosed as crazy. Luckily (?), her memory loss helped me; I was able to later just say he was a doctor specializing in aging health and her primary care doctor wasn't an expert with older patients. I reassured her that any questions the neurologist were to get her baseline so if anything should decline, he would be able to see any changes. I actually did choose to share her diagnosis with her; I just couldn't lie when it came to her health. BUT I didn't use the actual word "dementia" or "alheimer's".

She's very fortunately to have a small, tight, group of Japanese friends who visit her fairly often (though it's never enough) and I visit her once a week and we go to a Japanese restaurant. Once in a while I bring her homemade Japanese food and fill her small pantry with ready-to-heat foods. Mom is even more fortunate that she's made friends with a bunch of residents (she's introverted so this is HUGE) and even found a few who either lived in Japan or, more recently, someone who is half-Japanese and had basic language skills.

She fell a few more times and the AL staff were so fast and quick to tend to her. As a result, she came to the conclusion, on her own, that she is much safer where she is, people are at her beck-and-call (not really but if that's how she feels, we'll go with it), and she calls it her home. She still complains here and there, and she still misses her independence - I just keep reminding her that she is pretty independent. She can go out with her friends anytime; she can bathe with privacy (she has to be cajoled into taking a shower but a firm, "do it now please" in Japanese from me or her best friend works); she can choose what she is going to eat (thanks to a restaurant dining-like set up the AL has); and there's a bunch of activities she can join if she wants. She doesn't like group activities - never liked games, doesn't have hobbies that she can do in AL, etc. Again, with some gently prodding, I've gotten her to at least go and sit in the room with everyone so she gets some socialization. After talking with staff, they added paper-folding and flower arrangement into the activities schedule; my mom got to show off her skills and help others, which made her feel included. She's also at the point where she is able to acknowledge that she wasn't doing well on her own and that she probably wasn't doing the things she was supposed to (like laundry, taking her meds, etc.) and that she was grateful for the routine, care, and attention she gets in AL.

All this to say, our parents are resilient. It takes a lot out of us kids - and I am trying to be more empathetic and sympathetic by putting myself in her shoes - but I treasure every single day I get with her. Even the days when I have to block her from my phone, scream in my car from frustration, cry because I'm alone and scared, or yell at the gods above for making me an only child. Yesterday she celebrated her 91st birthday! Stay strong….if I can help in any way, don't hesitate to reach out to me. I feel that our situation can add a layer of challenges but it's not unique. Plus this online communtiy is amazing and have seen/been through it all.