Need Guidance Please!!!

Everything you’ve written is very familiar to my mother who is diagnosed with Alzheimer’s. There is no way I would leave my mother alone for more than a couple hours and even now I am to the point where anytime alone is worrisome. My mother lives with me and is constantly accusing me of stealing, lying and blocking her on her iPad or phone from communicating with others. She recently accused me of putting oil in the water because her hair is greasy. I peeked into her shower and realized she had no shampoo and was using cocoa butter to bathe. She was able to make a cup tea but if left alone she’d drink hot water with honey (she’ll push buttons on microwave to heat up stuff). She is paranoid , apparently I have magnetic contramptions that steal stuff when I’m not around. She is convinced I come into her room while she’s sleeping to steal.

It sounds like your mom also is experiencing Anosognosia as is mine. For my mother I have learned you must get them to eat and drink and get good sleep. My mom is on medications which help but the best help has been melatonin at night because it keeps me from getting too tired(mom would yell at me in middle of night that I stole her butt wipes!).

I hope you find in home care for her but if you cannot and your sister there cannot then your family may have to move her someplace she can be safe and hopefully have some peaceful years ahead.

Prayers for all of you.

Hi, welcome to this place, sorry you’ve found the need though.

I’m going to say your mom is not safe, physically or financially. Someone should have oversight on her finances as the scams on the elderly are plenty along will bill paying mistakes. Some of our parents here have lost or spent large amounts of money before we noticed. IMO it seems the paranoia about stealing comes in mid stage (4-5). A lot of us have had to manage that aspect of the disease too. Expired/little food, poor hygiene, less than normal house cleaning and losing things etc… are fairly clear signs she needs someone with her. Her safety needs to drive the decisions on her care. Driving probably needs to end too.

When my brother and I were caring for my mom long distance, we hired help in. Also as she progressed, we put cameras in every room of her house except the bathrooms. Those were invaluable and allowed us to supervise and see all the goings-on in her home. I was even able to discuss the situation with the EMTs, whom the caregiver called, through the camera. After moving mom to me, needing 24/7 care, I kept cameras running always.

Maybe the sis in denial needs to stay with your mom for a week or so, immersed in your moms reality.

Unfortunately, there doesn’t seem to be anything that can stop the progression of dementia. There are meds and best practices that can help manage the behaviors. There may be tests that might rule out problems that can be treated yet mimic some dementia symptoms.

It seems I don’t have much positive feedback for you, sorry about that. Thank you for sharing, keep coming back.

It’s not surprising that she’s telling only the people who aren’t local that the people who ARE local are stealing from her. She has to have someone to blame for why she can’t find her things- and even she realizes that the people who live far away can’t be accused.

She should not be left alone, nor should she drive. She needs to come to one of your homes for an extended visit, while you search for a suitable facility where her language is spoken. of course, if you prefer, one of you could just keep extending the visit if you choose to care for her in your home. Provided that’s something that can be done within our immigration laws.

There’s really no way to stop the progression, although some medications do slow the symptoms for a while. There are however some illnesses that mimic dementia that can be treated - low B12 levels, thyroid problems etc She’d need to see a doctor to determine that. Several people here have gotten their loved one to the doctor by saying insurance requires a doctor visit every so often.

There is so much fear for a person in the middle stages where she *might* realize that something is wrong, feel confused and frustrated but still be unable to understand that it is her own mind that is not well.

I agree with all who have said that she should not live alone. Also that she should not drive, handle her finances, have unsupervised access to a kitchen, or manage her own medication. All of these situations could be dangerous for her.

Would the sister who lives nearby be willing to spend a week staying with her? It might help to open her eyes a little and start a conversation among all of you to make a plan to help your mom be safe.

I am so sorry for your struggle. Everyone here has had some version of it. Let us know how it goes for you.

I am new to the forum myself. I share your tangled ball of emotions. I also know how frustrating and disconcerting it is to see something is clearly wrong, and not have medical help. My father also shifted significantly post Covid. It took 18 months to even get an appointment with a primary care just to get the basic testing and a referral to neurology, which also is a LONG wait to get an appointment. My uncle died of Alzheimers and my dad has been TERRIFIED of getting it. He was VERY reluctant to get testing. It took telling him he needed a physical to keep his Medicare to get him there.

Here is what I have learned, thus far:

Long Covid is real. It can include brain fog, changes in blood sugar regulation, energy, and other generalized symptoms that often come with a virus like body aches, temperature changes, etc. There is emerging evidence that Covid also triggers or worsens Alzheimer's, specifically changes in the temporal lobe. (here is a link to one of several articles about it: https://www.healthline.com/health-news/covid-19-alzheimers-disease-and-memory-loss-what-we-know

This is even more likely in someone with the APOe4 gene, especially if they have both copies of this gene, which just recently was found to be an actual potential cause of AD. https://www.healthline.com/health-news/covid-19-alzheimers-disease-and-memory-loss-what-we-know

Unstable blood sugar can also cause changes in cognition and personality, as well as damage to the vascular system and kidneys. This tends to get worse with age. Diabetes is overwhelmingly complicated to manage. Changes in weather, any kind of bacterial or viral infection, mediations and physical activity can all affect it. There are other phenomenon (like the Dawn Phenomenon) that can also randomly change blood sugar control. (There are days when I just want to run screaming or fall to my knees and sob, trying to deal with how complicated it can be.) If her kidneys are failing due to unmanaged blood sugar, it can cause even more mental instability.

She may have a bladder infection driving some of this.

I would also guess that other people are aware of her changes, they just are staying politely quiet. I was shocked at how many people said they had been noticing changes with my dad, but didn't feel it was their place to say anything about it; once we started opening up to family and friends.

And yet my brother just kept insisting dad was just getting older and not dealing with stress very well. Once we finally got some testing, I haven't heard from my brother… it's been 7 months. There are days when his denial and utter lack of assistance makes me incredibly angry. Other days, I am sad and find myself grieving the loss of him right along with our dad. Days when I am too tired and overwhelmed with caring for our parents, on top of working a full-time job, to care what his issues are.

A good elder law attorney is mighty helpful.

I am also happy to have found this forum. We are not alone.

Hope this helps.

Yes, the wanting to go home is normal behavior for this disorder. My mother has been with us for almost two years and she still says she wants to go home.

My father in law also has dementia and tells my mother in law that he wants to go home, although he lives at home.

I respond to my mother with “okay “, most of the time, no matter what she says because her memory is non existent.