My intent is never to be cruel or to focus only on what is a struggle, but sometimes the stories I feel the need to tell are the stories that are based in a behavior that is really hard for me to deal with. Especially to LIVE with.
Mom's new thing is to start every day, not with a "Good Morning" or an observation on the weather or a question about what day it is...her new thing is to say something negative.
Obviously, I noticed it the first time it happened, but after 3, and then 4, days in a row of negative "openers", I began to count them. Today was Day 18....or should I say DAY EIGHTEEN?!
It's hard. It's especially hard on a Saturday when I know that I had to set an alarm to wake up before my family so mom can stay on her schedule. To have to make 2 breakfasts so mom can stay on her schedule. To eat with mom and not my family so mom can stay on her schedule. It's hard when the first words you hear are ugly.
Today's "opener" was "Why is it so cold in here? Don't they (always cracks me up - the reference to 'they' and 'them') ever turn on the heat?"
Our electric bill has jumped up an average of 36% since mom moved in. She requires a lot of light and noise. She does not have the ability to turn on the tv or the lights by herself, so if I have to run out or if I am going to be upstairs doing something with the kids, I set up all the rooms she likes to go in the way she likes them. I have never been so happy to see the weather turn cooler - no more AC (a nightmare to my electric bill!). I vowed I would not turn the heater on until the first frost if I can help it. I washed and gave mom my favorite red Martha Stewart blanket. Washed and hung out her coziest robes, slippers and nightgowns. Put a fire in the fireplace first thing in the morning so she has a place to be as warm as she wants...because that fireplace cranks out the heat in just 15 minutes!
Truth is - I would turn on the heat if it ever got remotely uncomfortable. I would be a bit grumpy about it, but I wouldn't let the kids or mom be cold so I could save $5.00. But it hasn't. I would have loved to open some windows and really bring the cool air in - I love to sleep that way. I think you get the very best sleep under a pile of blankets in a room filled with cool, fresh air.
My point is - it wasn't cold. I wouldn't even say it was cool. I wore short sleeves and a light shirt - it's in the 70's outside.
Some days she complains about her clothes. Some days she complains about the time. Lots of days she complains that I wasn't downstairs fast enough...usually after she has gotten up and gone back to bed 1 or 2 or 3 times. Some days she complains about something she had a dream about...that's a weird one to respond to. One day she complained that she was sleeping in someone else's room and why on earth would I do that to her?!
I have tried getting the first word in, but for some reason, even if I say the first good morning - she still chooses negative. It used to be when I called Sophie in to be a furry alarm clock, it would cheer mom right up and she would start the day loving on our dog. I mean, really?, how can you not love a wake up from a big fluffy white happy dog?
She still loves Sophie, but she finds a way to get her point across. Her opener. Her morning poison. Her negative comment. Her declaration of how displeased she is. Her assertion of being the boss, I guess. It makes me sad - lots of things make me sad. I wonder of other caregivers are as sad on a daily basis as I am?
Anyway, I have faith that this will pass. I may not be the expert on ALZ, but I can assure you that nothing is constant and no routine is sacred if the ALZ patient decides to change it. The caregiver is not allowed to make a change or leave anything out of place, but the ALZ patient can change with the wind and explain that this is how it has ALWAYS BEEN....and then roll their eyes at how stupid you are!
Tonight is also the night I have to pretend it's Friday night again. I let her know it's Saturday all day - because of all the kid's activities. But I have to change it up by dinner time or she will spend the entire 5pm - 9pm worrying herself sick about what we do on Sundays. So far it's helping - let's hope it works on Day 18!
