So weird to be celebrating Independence this weekend at the same time I am watching mom give hers up... I spent time on the phone with the Alzheimer's Association REACH program director this morning and she said there is a good chance that mom will be able to get comfortable in this new environment providing she gets into some kind of routine... THERE'S the rub. How to get into a routine when it's a holiday weekend and nobody is keeping any kind of regular hours AND I am trying to get through all the evaluations for all the different kinds of therapy and assistance mom may qualify for...so thankful that mom's PT knows her Aide and OT - they are going to coordinate and just let me know when they are coming! Silver Lining!
Yesterday started out so beautifully - mom was in good spirits, she had PT and seemed to like the therapist (she has had her before - she didn't remember her, but she connected to her in a very positive way!) We had a big cookout at lunch since Patrick had to work last night (go figure?!, the new guy getting stuck with 4th of July closing duties!) and that seemed to make her happy - she even ate more than 4 bites. She got very comfortable on our couch and smiled a good portion of the morning/early afternoon. She did ask me 3 times if I was "her momma"...picture a 4'10", gray-tight-permed lady in a dress, knee-hi's and sensible shoes...nope, not me!...but even when I told her I was her daughter, she smiled. We were hopeful.
She nodded off for a nap (refused to go back to her room...come on AT&T - we need that cable!) on the couch about 3:00 so the kids and I got a puzzle out to encourage her to sit up at the table and not just lounge all day. Bad idea! Seems to have made her mad. I even let her jam 2 or 3 pieces in the wrong spots so she felt like she was part of the fun. I don't know what changed her mood, but she went to that place that I don't understand - but fear like nobody's business! She had anger, she behaves like a victim, she feels sorry for herself, she uses words like stupid and dummy and idiot and it breaks my heart. When she gets in that place she is, as we say here in Texas, UGLY. She is short with the kids (I don't think she knows who they are when she is in her dark spot, but she clearly knows they are family, because she doesn't put on the pleasant airs she saves for guests), she adds this growl to her voice when she speaks to me and she develops the sore back syndrome.
SBS is our cue that mom is unhappy or angry. She can go for hours or days without mentioning her back, but when she is unhappy she uses this as a reason to not do her therapy exercises or to not eat or to not listen to an answer she doesn't like to a question she really doesn't want to know the answer to. It's a tough one - and I still don't know how to respond. I suggest stretching, I have said maybe she slept on it funny, I have offered to rub her back, I have tried to get her to go for a walk and the most effective technique - talk about the weather. I am sure I will figure this out with experience and more help from others who are going through the same thing.
And then the thing that made me saddest yesterday - we took mom to see the fireworks at Trophy Club. She was excited to go, she managed the drive up in pretty good spirits, she was like a child during the first 5-10 minutes of the show and then she just put her head down. When it came back up she was so agitated. What were all these people doing here? How was I ever going to find my way home - she was sure I had gotten us lost! What were the kids saying in the back seat - very accusatory (they were saying "oooohhhh! ahhhhhh! - all the things you are supposed to say at the fireworks!) and it got worse as we drove home. She was lost, we were lost, she didn't know where the hell she was, she didn't know why all these cars had to be on the road, what was that sound (my phone going off), I hope you know where you are, I sure as hell hope you know how to get me home... It was awful. I tried to talk about the fireworks, about the 4th of July celebrations in her hometown, about going to see the fireworks at the Lima Mall when I was little...she couldn't be distracted from her sense of being lost. I think it was mostly tired. another new caregiver question - what's the risk/reward for keeping someone out a little late to see fireworks or something else that she will enjoy! Good Grief! The silver lining...I think she actually remembers going to see fireworks last night and she doesn't seem to have any recollection of the fear or anger. I'll take it!
So, a quick recap for my memory (since I am probably the only who will ever actually read this!) on the past couple of days. Wednesday's QOD was "Is there anything going on around here tonight?" (thus the puzzle and download of big band music) and yesterday was a Peg's Man Crazy Day. It's something that has always kind of made me sad or frustrated about my mom...she will drop anything (including me) for a man. She wanted to talk about her husbands - but not ABOUT her husbands - but about how lucky she was to have husbands. Then she talked about how she probably wouldn't have any luck finding a husband "in this place" - the kids got a kick out of that. And at one point as I was showing her a pair of new sneakers I thought she might like, she said what she really wondered was if she could buy this male model...ick! I know it's mean to say Ick!... but ICK! He was probably 25 years old and he may have even been attractive - I'm sure he was - he was a model, but ICK! I couldn't even look...and now I obviously can't buy her those sneakers!!! I guess I will have to cut out the foot picture the next time! Or just bring home the shoes...will it just create more confusion for her to have different shoes...she really needs new shoes - especially with all this therapy she is doing and the fact that she is out and about more now that she lives with us, but what's worse...less supportive shoes that she knows or more supportive shoes that are strangers?
Who knew that my spare time would be monopolized by questions like that?
Today has been a nappy day - too much, I think, but who knows? Not me. Not yet. Not giving up though!
Independence - today it meant putting the denture cream on her teeth without my help and getting her shoes and socks on by herself. She also found the bathroom by herself and was able to reach the water glass and take a drink (she still asked me to get it for her and got snippy when I asked her to do it herself, but hey! she did it!). Tomorrow it may mean something else - hopefully a bunch of things. Another silver lining - I am a lot less likely to complain about having to do things - I am thankful that I CAN do things. Today I nearly rejoiced as I was putting laundry in the machine!
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