Progress…

I'm sorry on the loss of dad.

As for the location… if not already, she will not really remember where she is. You could also tell her that she is very close. If you are open to 'fiblets', you could tell her she is close to her hometown. If not, you could tell her she is close to you and family. Are her 'friends' visiting her now? Then they will continue, anyway. If not, then that is pretty much a non-issue.

We are very glad we have the neurologist on our team. They can prescribe and adjust various meds to find what exactly works best, and can change the prescriptions as needed.

Yes - that is normal with doc appointments. Frustrating! But I found, at least in our case, that already having the neurologist, we can go through the health-portal if we need anything.

Now lawyer appointments are difficult? I am sorry to hear that. My folks and DH folks had paperwork in place before all 'this' came down on us.

Also - yes - I don't think we realized my mom was farther along than we thought - until we lost my dad. He had been scaffolding her more than we knew. And also the fact that her 65-years partner was gone probably pushed things along a little faster than would have been otherwise.

Actually, it may be at least partially alz-related, but agree, maybe only partially. If she was like that before, as my grandmother was, grandmother wasn't really happy wherever.

My mom was much more receptive to things the doctor told her versus me. But just a year after diagnosis she was claiming the doctor didn’t know what they were talking about and she is perfectly fine to live in her own house. So frustrating! Some facilities can have a waiting list to get in. It might be good at least start looking at options rather than waiting til after seeming the lawyer. As a caregiver you have to consider your mental and physical health as well as that of your family. I would move her near you. Period. Even in a facility there is a lot of work involved. She is probably not able to understand how much you will need to do. I don’t know how you get her on board with that. Maybe tell her the facilities near her were not nice, they had no openings, even tell her the move to the facility near you is temporary until there is an opening in her hometown. I have found that mom is mad about a lot of things I do that she doesn’t understand. As much as I try, in some cases, I have accepted that keeping her happy is beyond my control.
As far as the lawyer. You might also want to ask about a living will. Do you have a clear picture of her finances? If you think there is a possibility she may run out of money, you might want to ask questions about Medicaid qualifications. It’s so hard to make decisions when you have no idea what the future holds. Assisted living will only be safe for so long, then memory care will be necessary (even more expensive). Will her house eventually need to be sold to cover costs? It’s a lot to think about. We knew mom would not be able to stay in Al long and would then need to apply for Medicaid. Our lawyer advised her to do a prepaid funeral to protect assets and avoid leaving family to cover this expense.

It took me a long time to get mom into the neurologist. I hope they can get you some answers. Mom saw a neuro physic (2 hour evaluation), had an mri or ct(can’t remember) then saw another neurologist specializing in movement. This eventually got her a diagnosis of vascular dementia. Vascular dementia for mom has presented with fewer memory issues and more problems with judgment and decision making. Life expectancy can be different for the different types of dementia also. Unfortunately vascular dementia has an average life expectancy of 3-5 years vs Alzheimer’s which is 4-8. But mom was diagnosed 3 years ago is 80 yr old with diabetes and has barely progressed, so you never know. They checked mom for lewey body dementia since she was having trouble walking. Your mom’s tremors and sight problems may be an indication of a type of dementia other than Alzheimer’s (but I’m no doctor). I think the basics are the same but each type might have something slightly different. I will attach a few resources just in case you haven’t seen them yet. The dbat is really good at laying out symptoms and stages.

My mom and step-dad wanted an AL in a small town, not the larger one closer to me. So I put them in a facility recommended to me by friends. It was 35 minutes away from me. A doable drive, although it got old when I was there more than once a week. The real problem? Some of their doctors were a 50 minute drive from the facility. Too far for the facility to transport them. So I had to drive 35 minutes to get one of them, then 50 minutes to the doctor / and then reverse that afterwards. I had to take half the day off to take them to the doctor. Even the doctors closer to them were at least 20 minutes from their facility. And my parents made up excuses to go to the doctor for the ability to leave the facility during Covid.

I too am sorry about the loss of your dad and your mom's progression and all that you are going through. My only comment is about having two doctors who know her. I have been my mom's POA for several years now, but my mom was the trustee of her trust, not me. I was only a successor. Recently my mom has been amping up her calls and requests to her financial advisor asking her to send her large sums of money! Her financial advisor is very well versed in this situation, very caring and empathetic and has been working with me and distracting my mom on her requests, but since my mom is the legal trustee, at some point the advisor has to follow my mom's requests. I JUST recently was able to get her 2 doctor's letters stating she no longer has the capacity to manage her financial affairs and I, the successor, am now the trustee of her trust. So, my mom's finances are now protected from herself.

If I had not had both her primary and her neurologist on board, the process would have been trickier. It was very easy with their willingness to provide the letters immediately. So, be sure to look into that, if she has a trust.
Good luck!

I'm jealous of the night out. No way I'll be getting that any time in the foreseeable future. We are rapidly approaching the time when we may need to put my mother in a facility. Another home health aid will help as she rarely sleeps through the night and has been having some disconcerting behaviors. ER is the last resort as they can usually do nothing. A facility is the next step. She has been in rehab in a nursing home nearby and it's pretty good. They do have a dementia floor. We might qualify for Medicaid in two years, so it will be out of pocket. If it comes to that I have no idea how we will manage the transfer. Her touring the facility is out of the question as she will not understand and has mobility issues. I'm looking at a day program for now. Residential is not that far down the road and I'm at a total loss as to how to handle it. When the time comes we'll just have to figure it out.

On an amusing note, her neurologist is 90 something years old. We had the neuro psych evaluation done last year. On a practical level, I didn't see that it made any difference. Call it what you will, it is what it is and an hour long exam didn't prove helpful in dealing with this.

Thanks for listening.

so sorry about your parents. Be sure to tell the Neurologist about all her symptoms. Vision problems can be a rare Alzheimer’s called Posterior Cortical Atrophy which may explain the tremor too. My husbands Neurologist was finally diagnosed with PCA 18 months after original diagnosis. He progressed quickly. 💜

So sorry to here about the passing of your dad and your mother's cognitive problems and your position.

By now you saw a neurologist with your mom and should have an idea after testing what's next.

I can only mention I am 72 years old and was diagnosed with MCI in 2019 by my PCP and my memory was getting much worse after a TIA in March 2024 that was caused by embolisms in two arteries in my right eye that damaged my retina evaluated by a retina specialist in May 2024 and his test showed a plaque and inner retinal thinning of unknown causes. My PCP and Ophthalmologist did not think or mention AD to me.

In December 2025, My father in law was hospitalized after he passed out in a restaurant after he was soaked in urine and a bowel movement. He had Type 2 Diabetes for years and has AD as well that was supposingly Mild. Anyway, he lived alone 5 minutes from our home, but refused to leave his home. However, the hospital would not release him until his daughter and my daughter arranged for assisted living that is 15 minutes from her home and my wife takes care of paying all his bills for both his home, auto, and the assisted living care facility. My spouse took away his keys. I visit him every day and brin him a thermos with coffee, and I take him out twice for lunch to his two favorite restaurants.

In January 2026, I was at my appointment with my PCP who realized I was suffering with depression and said something to him like I would be better off dead. I had Polymyositis, Dermatomyositis, Secondary Sjogren's Syndrome, and Sleep Apnea since 2008 and been on CPAP. I was diagnosed with Type 2 Diabetes in 2016, and now he tells me my MCI has progressed to the point he referred me to a good Neurologist at PARADIGM for more extensive testing and evaluation for probable AD or some other form of dementia after he ran every many other blood tests ruling other stuff out since my diabetes medications was under control with an A1c of 5.8. He immediately prescribed an antidepressant and anxiety medication and sent a report to the Neurologist he referred me to.

In March 2026, The Neurologist ran a lot of cognitive tests on me checking, my memory, thinking, balance, and coordination that 2was not so good. He had Labcorp draw my blood for the new Lumipulse Beta Amyloid 42 and ptau217 blood test and also had PARADIGM perform a brain MRI and EEG within a couple days on me. He called me about 4pm on 26 March informing me that I tested a positive high for Amyloid Plaques and Tau Tangles in my brain as well as my blood. He also mentioned it was highly probable the plaque in my right eye retina and retinal thinning was caused by the AD. I will be seeing the retina specialist in June 2026 with the updates to have both eyes examined more thoroughly if that is the case. Apparently the brain and retinas are associated and in some cases the eyes may be affected even before the memory symptoms show up. Also since I have Diabetes too, I may have a mixed form of both AD and Vascular Dementia or will have. He put me on Donepezal on the followup a few weeks later that I cannot tell if it is working or not. I will have to see him every 3 months and have repeated Annual Brain MRIs to monitor shrinkage, not sure if he will do a PET in the future to see how much of the brain shows the plaques and tangles. Maybe someone else had this done down the road as disease progressed.

How do I know so much in such a short time. In 2020 at Age 66 I retired form working for the US Navy as a civil servant engineer for over 40 years, I decided to retire in early 2020 since my memory and concentration was becoming evident for 2 years where I would be giving presentations to upper management as an engineering project manager and forget what I was about to say and was hiding it with humor, jokes, or old stories, which all led back to my PCP MCI diagnosis in 2020 or 2021 just after I retired.

Having been an expert in problem solving and research for so many years as an engineer, I researched AD after my diagnosis via google searches and I purchased 3 recent hardback books on MCI and Dementias. Two are from the Johns Hopkins Library and one form the Mayo Clinic that I purchased on Amazon and highly recommend to new patients of MCI and Dementias like AD and caregivers.

1. Is It Alzheimer's, 101 Answers to your most pressing questions about memory loss and dementia, second edition or newer by Peter V Rabins, MD, MPH. A Johns Hopkins Press Health Book
2. The 36-Hour Day, Eighth Edition; A family Guide to Caring for People with Alzheimer's Disease. Other Dementias, and Memory Loss, by Peter V Ramins MD, MPH and Nancy L Mace, MA A Johns Hopkins Press Health Book
3. Mayo Clinic on Alzheimer's Disease and Other Dementias, revised and updated, A guide for those with dementia and those who care for them, by Jonathon Graff-Radford MD, and Angela M Lunde MA

I recommend all three books because they fill in gaps that are missing in the other books that make things more clear. IF you have MCI and Mild to Moderate AD like me, you may want to use a yellow highlighter to highlight important stuff to read again since I forget things mentioned to me or things I read hours later that may not be retrieved. it took me a couple hours putting this comment so forgive me if I did not edit good enough

Most of the information I learned about Retina AD was from recent medical research symposium papers I googled written in Sweden, UK, Singapore, Japan, and Taiwan which all seem to be further advanced with AD than the USA. The Limipulse Blood Test is actually patented by a company in Japan. I provided to my PCP and all specialists I see which they were thankful for.