I am confused on how to handle the situation...sorta long

icyjazzy

I am pretty new to this site, and so much information, honestly I am a bit overwhelmed.
So here is my deal:

My mother is 81 and was diagnosed with VD in April 2020 and determined she was to have 24/7 in home or in facility care. I am the POA and my brother was there during the emergency portion of the crisis but he no longer participates.

Over the course of this year, she naturally wanted to go home, wanted her good jewelry, and didn't really understand what is going on....yet, anyone who doesn't know her from before would probably think she is fine.

She is able to have extremely lucid conversations, appears to understand the conversations in the moment, and will have no problem reminding people this is her life and it is her choices. She is pretty good at hiding anything she is struggling with or laughs it off to "old age." But if she is starting to get tired, she is unable to comprehend very well, she hears but it doesn't stick and she becomes extremely frail.

The history side to all this, she has a favorite mantra throughout her life "dumb as a fox" because people underestimate her constantly.  Well, of course, being her daughter I know this and I see her manipulating or trying to be sneaky even in her current state.

Her latest push is trying to move into her own place again.  She was moved into the facility with the stipulation about the medical issue but of course she is now baiting the staff asking them if she belongs there.  I see them (if they are answering at all) are living in her moment, which she has taken to heart and is trying to maneuver me with this "insight" from the caregivers.  Her home was basically taken from her during covid, but this is another issue.  
This honestly helped in keeping her calmer at the MC facility but now she thinks she can leave and it is her choice to stay or go.

She is on medication for her VD to stabilize and anti-psychotics for her hallucinations. On them she is "better" and stable, but she definitely has made progressions such as her handwriting is actually nearly normal again.

The problem for me is her aggression levels, which she has not displayed at the MC but has to me about 2 yrs ago, hitting me, this was way before the diagnosis.  She is getting frustrated at the MC when observing other residents who are regressing into child like behaviors and her roommate acting like their mother.  Mom was raised to "act your age," etc.  She finds this behavior from the others aggravating and is becoming more vocal about it.  Very judgmental.

We have not discussed the POA, she thinks my brother and myself are paying for the MC out of our pockets, and she keeps referencing needing to update her will cause it's time.

Anyway, I am starting to ramble. 

I am lost on how to work with her strong personality and ingrained convictions along with her extreme need to control.  She treats me like she did when I was 14, I am 59.

She, unfortunately, has turned into the very thing she has hated in her family which is a narcissist (with VD).  She was always so giving before, now she harbors anger towards those who hurt her in a much greater degree, resulting in all the victimizing, and it is all about her without regard to what others are trying to do for her in her best interest. 

Yes, her brain is broken, I am just lost currently.

I have downloaded the Understanding the Dementia Experience and will be reading it.

Any insights are welcomed...
thank you!!!!

abc123

Yes, her brain is broken and she WILL drive you crazy if you let her. I’m sorry. Tell her whatever she needs/wants to hear that will keep her calm and thinking she’s still in control of her life. Such as, yes you can get your own place when the doctor tell us it’s okay. Blame the doctor. Use fiblets as much as possible. I’m sorry this sucks. I’m riding The Suck Train with my own Mom.

icyjazzy

Thank you.
I guess with her stabilizing the "use the doc" bit went out of my brain with trying to juggle what this last year presented me and not just with her.
She has just recently been diagnosed with breast cancer, so duh...this will be a big help in the doctor reference.
Just sharing and even hearing words I know to use is helpful.

terei

It is not clear to me what you are asking for.  Advice on how to reply to her when she says she wants to go home, or...

The best response to her is always the one that does not disagree with her or does not agitate her.    It sounds like she just knows how to ‘push your buttons’ to get YOU agitated.

There is a technique called ‘grey rock’.  You simply do not engage, possibly nod your head + do whatever you think is best. When she says she wants to move to out on her own, tell her as soon as her doctor approves it, you will look into an appropriate place for her...the end.  Dont get into long fruitless discussions with her that go round + round + only serve to upset you.  Shut down the subject + leave the building if you have to.

As far as her behavior at the facility, let the staff handle that. You trying to manage her behavior is not a going to be successful.   Again, do not engage in discussions that you know will not resolve anything. Practice detaching a bit by treating her acting out the same way you would treat a stranger in the same circumstances, which is probably avoidance.

icyjazzy

Thank you. Yes, she does like to push buttons.  I like the "grey rock"...I didn't know about this term.

King Boo

So, reading between the lines here, there's no need to entertain care at home just because she's occasionally lucid.  Guilt buttons are easily pressed.

There can also be phases of the disease when our presence can be more disruptive than productive.  Visiting from afar from the nurses station or a phone call to the caregivers can suffice or even be advisable during times when family members open the portal to agitation with their presence.

Deflection is the best strategy,   The answer that causes the least conflict can be advisable.

"Yes, Mom, your home is lovely.  You so like to garden.  What vegetables shall we have this summer?  For dinner?"

"Yes, Mom you are correct, people underestimate you a lot!  Let's go show them how good you are at........."

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harshedbuzz

icyjazzy-

Coming to terms with the changes in a loved one is always a process. Once we get to a place where we accept where we are, something changes and we have to re-examine where we are.

Most of the time, the decline is consistently downward, but sometimes there are PWD who do show what appears to be an improvement with MC placement which means appropriate medication, nutrition, socialization and activities. I saw something similar with my own dad- he had mixed dementia- one of them was an alcohol related dementia that is treatable with IV Thiamine and abstinence. He was diagnosed during a hospitalization for a psychotic episode during which thought and said all manner of crazy things. 

Once treated and given an antipsychotic, he improved to a previous baseline where he was early middle stage in that he was capable of his ADLs but not any IADLs. He still had dementia and no working or short term memory. In a lot of ways, the reversal in symptoms and made caregiving a lot more complicated.

Like your mom, his explanation of for the glitches he recognized was that it was a normal part of the aging process. I wanted that inscribed on his gravestone, but mom wouldn't go for it. But mostly he suffered with anosognosia, a condition where upon a person with dementia or mental illness is unable to recognize deficits in their cognition and reasoning skills. In his mind, he was as brilliant as ever.

Another aspect of the disease that struck me, was that certain personality traits (notably the unpleasant and dysfunctional ones for dad, but positive for my dear aunt) remain intact well into the disease. Dad could be more of an overt bully than a manipulator and this remained his MO until about 2 months before he died. 

Like your mom, my dad's speech remained remarkably good. He did sometimes substitute a word or two if he was struggling with recall, but it generally made sense. This sometimes "fooled" even professionals into thinking he was less further along in the disease than he was. The day he died, I brought him lunch during a swallowing evaluation by a SLP. She remarked on how intact dad's speech and social skills were in the context of how poorly he was able to swallow. He died that evening from complications of aspiration pneumonia. She asked me about the conversation we had about my sister visiting- "sis had been really busy with the kids and new promotion at work". Reality? Sister died in 1994 but the SLP admitted that he made it sound real. 

My dad often cast judgement on the other residents calling them crazy and referring to MC as the funny farm. We told him that he was there on doctor's orders to get rehab to become stronger so he could go home and that the other folks were working on different things. It helped that the staff often grouped dad either with other residents who were more verbal and engaged. 

TL;DR. Part of why your mom is doing as well as she is are the supports you've put in place for her. That's a good thing, but it means she's just capable enough to make you feel terrible when she pushes the buttons that she installed years ago when you were a kid. 

My advice would be to create a narrative as to why she needs to be where she is- doctor's orders is generally a good one. Being safer in COVID-times because the public at large isn't vaccinated yet might work. Rehearse in the mirror until it rolls off the tongue.