I'm terrified and don't know what to do

DancingS

I'm so sorry, but this is going to be a long post.  I don't know what to do or even where to go for answers.  My mother doesn't trust doctors so I can't take that route.  If she knew I was writing this post, she'd see it as a major betrayal.

My mother is 81 years old and I know she has been suffering from some form of cognitive decline for years.  I was able to get her to go to her primary care doctor about 5+ years ago and her doctor prescribed medication for her but my mother didn't like the way the medicine made her feel.  After that I wasn't able to get her to take the medicine or go to another doctor concerning her condition.  She doesn't trust doctors and the only doctor I've been able to force her to visit is her heart doctor.  She's always afraid that the doctor (or even a dentist) will put her in the hospital and have her killed.  

In 2019 her mental condition was really bad and she began to show signs of aggression.  I got really sick at the beginning of 2020 and was hospitalized for 3 months.  When I was released, I needed ongoing care and had to visit the hospital 2 times a week for basically 9 months.  I was surprised when I was released from the hospital that her mental condition seemed to have gotten better.  She was even well enough to help take care of me.  She was really focused on helping me get better.

Then earlier this year my niece, who was having her own mental issues, came to stay with us.  During this time, again, my mother seemed to be doing better than she had been in 2019.  Due to some unfortunate circumstances, my niece had to leave our home and moved in with her father.  While my niece was in our home, I did notice that my mother's paranoia seemed to be getting worse.  She had a really bad childhood which contributed to her paranoia and inability to trust.  All my life, I've been aware of this in her personality, but it always seemed manageable.

About a month ago, I realized that she wasn't taking her high blood pressure medicine as prescribed because her feet were so swollen she couldn't even wear slippers.  As a result, I started giving her her medicine.  I'd tried previously to get her to let me give her her medicine, but she wouldn't let me.  I'm not sure why she relented this time, but she did.  Afterwards though, she'd make comments about how she didn't know how she lost control of her life.  Or when I'd tell her it's time for her to take her medicine, she'll tell me that I'm not her mother, she's my mother.  I try my best not to seem like I'm forcing her to take her medicine, but I also can't let her forget to it either.

Over the past few weeks, she has taken a turn for the worse.  It began with her waking up at night and being very anxious.  She'd roam through the house crying and fussing to herself.  When I ask her what's wrong, she'd tell me that she's fussing to herself and it has nothing to do with me.  She's becoming angrier and more depressed by the day.  It's absolutely scary has fast this change occurred.  One day she was fine and the next she was angry and has been angry and depressed ever since. 

She's always had issues remembering recent events, but now she's having even more difficulty recalling past events.  She's had issues recalling past events for several years but it has recently gotten so much worse.   When I try to help her remember them, she feels like I'm calling her a liar.  She's begun to see me as the villain in her world.  If she asks me about a past event I don't know what to do?  If she remembers it wrong, I feel like it's wrong to confirm the lie.  The reason is because she continues to focus on the worst, most hurtful events in her life and she confuses the events and has begun to see everyone, including her children, as out to hurt or kill her.  She believes that everyone is out to hurt her.  If I try to correct her, she says I'm calling her a liar and incorporates what I've told her to further her belief that everyone is against her.

She's also started saying the most hurtful things to me.  If I leave the room during her rant it makes her angrier, so I have to just sit there and take it.  She keeps saying that now that she's dying she's learned that no one loves her.  I love my mother.  When I tell her I love her she says I'm a liar and no one loves her. It also scares me that she's talking about dying.  I keep asking her if something has happened or if she feels ill so I can take her to her heart doctor, but she refuses to answer and says she's not going to the doctor. 

It was hard to get her to eat prior to the onset of her depression, but now I can't get her to eat.  Or at least, I haven't seen her eat.  She began losing her appetite several years ago, and has lost a lot of weight.  When I mentioned it to her heart doctor, she said that it was a byproduct of aging.  She would drink sodas, eat ice cream, candy and cookies, but it's been hard to get her to eat real food.  Now, since this onset of depression, I can't seem to get her to eat anything.  I keep asking her to let me fix her something to eat and she says no, I don't want anyone waiting on me.  I don't know if she just doesn't want to eat, or she doesn't trust me.  Not only that, but it seems like me asking her to eat makes her angry again.

I literally don't know what to do.  Luckily I work from home so I can check on her during the day.  I stay at home after work so she won't have to be at home by herself.  Now that she's gotten so she doesn't trust me, I don't know how I can care for her.  Putting her in a home is completely out of the question because she always said that she didn't want to end up in a home.  I don't want her to end up in a home.  As much as she is beginning to distrust me, she doesn't trust strangers so hiring an in-home caregiver is completely out of the question.  I don't know what to do.  Will the distrust, anger and depression last?  Will it get any better? Any suggestions will be appreciated.

M1

Welcome dancingS. It sounds to me like she is a danger to herself and others, including you, potentially. I would call 911 and ask for transport to the emergency room, where she can be medically stabilized. She probably needs admission to a geriatric psych ward to be stabilized, before any decisions are made. This will be easier if you have power of attorney, but she can be held for 72 hours even without that. Good luck, I’m sure others will chime in too.

M1

By the way there is also an Alzheimer’s hotline you can call, 18002723900. No charge, ask for a care consultant

ButterflyWings

DancingS - so sorry to hear all this stress and fear you are under. It sounds like your mom is too. When we had a sudden change in my DH's behavior it was a silent urinary tract infection (UTI). If you can get her a urine test, even somehow through a test at home, there are some pretty reliable test kits -- it may start  you on a road to get her stabilized at least. Does she have a PCP or just the heart doc?

Like M1 said, getting her medically assessed is best. And lots of people here have had to find ways to give their LOs meds undetected, If a liquid form, or dissolvable it can go in her drink. His appetite and all the sudden wild, and mean behaviors plus hallucinations and accusations from delusional thinking improved SIGNIFICANTLY within 24-48 hours of starting the antibiotics our Dr. prescribed. I was shocked. Because he had no other symptoms of discomfort, urgent urination, or other signs. I learned here that UTIs can be frequent with PWDs and they trigger the kind of sudden changes you describe. It is worth looking into.

Wishing you all the best. Meanwhile, there has to be a way to protect yourself from this much verbal and emotional abuse, even though she doesn't really mean it. The impact to you is real. I hope you get the help for both of you, that many of us have been able to find. Do call the helpline M1 shared. They have helped me think through things more than once, and can email you resources and contacts too. 

FYI, now things are much more stable because my DH also takes a moderate dose of Seroquel and low dose of Sertraline (for depression)  daily - it makes all the difference in the world for us!

Here are 2 links with some tips I found for you: (1 says nutrition can be a trigger). ((Hugs to you))

 

 

How to Respond to Anger and Aggression in People With Dementia

Learn why anger develops in dementia along with several proven techniques for responding in a way that reduces o...

 

 

Aggression and Anger

Get information and resources for Alzheimer's and other dementias from the Alzheimer's Association.

Hatedementia

Sadly, I must agree that she really needs to be medically evaluated.    We had a situation where our loved one took a fit in the car of anger and frustration.   We were in a similar place as you were so we drove to the ER.   It took a lot of coaxing/arguing/anger/etc etc but we stood firm that they were ill and really needed to be seen by the doctor so they could get better.  The ER did some labs, took a history and admitted based on the UTI they found.   The behaviors would have also justified a 2 or 3 day stay for evaluation, they said.  

It wasn't easy.  But, after a few days in the hospital we knew they had the urinary tract infection which caused a lot of the problem.  Dementia, tho, was the primary cause.   The hospital physicians recommended a transfer to a geriatric psych unit for evaluation once the UTI was resolved.  That helped a lot and we were able to get some meds to assist with the paranoia, anger, and aggression.  

Eventually, we ended up in an assisted living because it was necessary for their safety and our sanity.   Caring for a dementia patient is a 24/7 job and exhaustion ensued eventually.   What shocked us was... after that being like the worst thing that could happen all of their life.... it ended up to be a good solution and there were activities, people to talk to, their own space and were happier than we could've ever imagined.   

Good luck.  

LainieR

I don’t know if this book will help you or not, but I’m letting you know about it.  It is:  The Validation Breakthrough by Naomi Feil.  I borrowed this book from the library and then decided to buy one.  It’s considered a textbook so it is pricier, I bought a used one.  It is easy to read and understand.  Even if you are able to get medical intervention, the book might be able to give you some insight or help with understanding and interacting with your mom.

jfkoc

Hi Dancing...

First of all please do not worry about a long post. Secondly think you for breaking it into paragraphs!

Now to the issue. You must rule out a UTI. You can get this done at any Urgent Care. Call ahead to assure that they have a "hat" for the toilet. Tell your mother it is for Medicare or any other reason she will accept.

A silent UTI (no apparent systems but often a change in behavior) can be life threatening but easily treated. You want to get that worry of of your late ASAP.

I would then start the education process or ALZ 101. Get a book by Naomi Feil and read it cover to cover. Her validity approach is going to be invaluable to you now and going forward. 

There are other very helpful books but your basic communication will come from Feil

Let go of the eating. Leave some foo around that she can eat when she wants...a sandwich, cheese and crackers...peanut butter crackers

Meds? Have pill time. You take yours when she takes hers. Yours can be tic tacs.

Confirmation or lying?   Do not bother to correct. Accuracy rarely has a purpose.  Just use her memories as a jumping point for her to visit with  you. It is not unlike going to a teaparty when you were little or one of the pretend games we played as children. It can be delightful.

Do not argue, do not reason, do not correct. Do not get on the field unless it is unavoidable and even then think twice.

All of this is a learning process and part of the education comes from sharing here so stick with it. We will support and share really good information.