failing

I'm failing.  Mom is too.  I feel like I am failing as her daughter.

To paraphrase from another...
The real question is: How can I help Mom have the highest quality of life possible in the time that remains?

She is so lost. She is so frustrated. She is so angry.

The wall that dementia has put between us; I can't reach her and she can't reach through it.  

For most of my visit yesterday, she was sitting in a chair zoning out. I knew she was awake. She would not open her eyes to interact with me.  She was closed in upon herself, in her zone, scratching at her eyebrows, her eyes, her chin, her hair. I'm surprised she hasn't torn the skin off her face. She is so intent at scratching.

When she finally opened her eyes and looked my way. The confusion and frustration was all over her face.  The words are jumbled and messy, but the anger comes through. She couldn't put her glasses on her face. She did not want them on... on and off, on and off. They weren't providing any clarity to what she was "seeing".  

I rubbed her shoulder and talked quietly cheek to cheek, she became alert and yelled "Stop it J__!"  Well, she recognized me enough to recall my Dad's name.

Then the mumbled anger gave way to huge Tarzan type yells.  Just yelling: AAAAAAAAAAAAAAAH opened mouth and loud.  Frustration and despair.

Oh Mom, I am so sorry.
I am so sorry.

videos

Kay Bransford recommended these videos, and I do too.

They are made by a group called Short Focus Films. 
The series of videos is called "Is It Dementia?"

There are different segments of the series aimed at different audiences.

What I learned from watching all of these, is that we should all just take a deep breath and be more compassionate with all people we deal with. Even if the other person we encounter is just having a bad day, we can be more compassionate in our response.


These videos also remind me that it's OK to ask for assistance, we don't have to solve all problems by ourselves.

the H word

Mom has an evaluation with Hospice on Saturday.

med mess

A few years ago, when Mom was living alone, she got to a point where her sense of "time of day" was messed up.  She could no longer understand what the clock said or think to look at it.  Even now she can still read her watch, she can tell me "3:30" but her comprehension of "3:30" is gone.

This really got messy because at that time she was also managing her own medications. She would have her breakfast meds with breakfast. After her nap, she would wake up and take her breakfast meds again. Later she would eat diner and take her night meds. Then she'd fall asleep in front of the tv, wake up and take her night meds again. I'm not saying this happened every day. But it happened a lot.
This was when she was living totally alone, when I would check on her every two or three days.

I tried to help her by setting up weekly pill boxes with AM and PM sections.  I would label each section "Mon June 6" hoping she could correlate it to the big digital clock in the middle of her kitchen table, right there beside the pill box.  At my next visit there would still be too many empty pill slots.

Then I took away all her extra pills and left only enough until my next visit. Hoping that the blizzards would let me return in time. Mom would call me the next day and say all her pills were gone.

Then I arranged for visiting home health aides. They would come in the morning, make her breakfast, guide her to the shower, dispense her morning meds, make her lunch for later, and set out her evening pills. I would get angry calls from Mom that she didn't have any pills. She had already taken them, but forgot.

At that time Mom was not taking any heavy-duty medications. But still, overdosing on anything is not a good thing.

sarcasm

There was a post this morning from Carol Bradley Bursack about studies that point to a connection between Frontotemporal dementia and the inability to understand sarcasm and lying.  

Yes, you can add my Mother to that list. A long time ago, she lost the ability to understand jokes, puns, sarcasm, innuendo, teasing...

I'm not sure about lying, because until I had to use fiblets, I did not lie to her.  But, it's interesting, now she does yell at me and accuse me of lying to her. 
"You're my mother."
"Don't lie to me!"