Monday: work from 7 to 3:30 (this will be switching to Wednesday after Thanksgiving); go home unless I'm sure Mom is already home, then linger at Borders for as long as I possibly can; feed Grandma dinner between 5 and 6pm, take her sugar around 8pm and give her pills, watch Chuck, try to fall asleep by 11pm.
Tuesday through Friday: work from 4 to 12:30; head home and run any errands I can on the way (must be there by 2:30pm) - If I walk to the mall I can spend some time at Borders. If I take the shuttle I just go straight home; feed Grandma dinner between 5 and 6pm, take her sugar around 8pm and give her pills, try to fall asleep by 11pm. On Fridays I watch the Sci-Fi channel and Numbers, so I tend to stay up until about 1am.
Saturday and Sunday: wake up by 8/8:30 or Grandma will wake me up just to see if I'm "ever going to get up at all" that day; take her sugar and give her pills, feed her breakfast; feed her again around noon or 1pm; feed her between 5 and 6pm; take her sugar around 8pm and give her pills; fall asleep whenever on Saturday, but by 11pm on Sunday.
As you can see, the tasks themselves aren't monumental. Grandma is able to go to the bathroom by herself usually, wipe herself and feed herself (without too much of a mess). We have a woman coming in Tuesdays and Fridays to help her bathe, since she refuses to for us. We have caregivers coming in for the times Mom and I are both at work. There is plenty of time for me to do housework if I get truly motivated - dishes and vacuuming are inventions of the devil. In fact, all I really do is stay at home or go to work - very little else.
The problems arise in getting Grandma to do the things she has to do and the general bad attitude she can have during the day if you somehow annoy her (sooooo easy to do). When you ask her what she wants to eat, her standard reply is "Nothing." So you tell her she really has to eat. "No, I don't." You run through the list of things in the house to eat and she doesn't want any of it. Finally you get "I don't care" for the answer of what she wants to eat so you get to go into the kitchen and look through the list of things you just told her about and that she doesn't want and figure out which one she'll actually eat without you having to make two or three dinners before you get to the right one. Then there are the foods she has inhaled all of her life that she suddenly takes a massive hatred to. Currently, those would be pierogies and anything with bread.
You get adventures in her taking her pills. The water must be fresh (I agree with her) even if she left over half a glass of water from her morning pills. You pour a glass of water, stick some ice in it (or not) and put it in front of her. Then you shake the pills from the container and tell her it's time to take her pills. "I have all day to do that." "Um, no you don't. Take your pills." "I'll take them when I feel like it." At this point you can either argue yourself blue in the face or just walk away. I just walk away anymore and check in half an hour. If they're still there, then I prepare to argue.
Fresh clothing every day...novel concept. Doesn't happen. If we can get her to change her clothing three times a week, that's major. Same with brushing her hair. She changes and brushes her hair when the aide comes to bathe her. Beyond that, if we go somewhere she'll have to make an appearance other than stubbornly sitting in the car, she might change her clothing depending on how much food she's dropped on it. She definitely brushes her hair then, at least.
I know that last paragraph makes it sound like we neglect her or let her stink. Hell, no. We've just learned to pick our battles. As it is, Grandma's main activity in life right now is sleeping on the couch. She gets out of bed about the same time I go to work and shambles into the living room where she proceeds to spend the next eighteen hours or so snoring on the couch. Around 10pm she'll go into her room and sleep on her bed. That's her day. During the summer she might sit on the porch and people-watch a bit. She wakes up periodically to watch some television, eat and go to the bathroom. However, my grandmother's life has gone from active independence to sleeping practically 24/7.
I love the days when Grandma is around, not Mrs. Hyde. Well, maybe not love, but enjoy a heck of a lot more than the days I feel like I'm doing this for nothing. When Grandma is around it's completely different. She still may be limited in what she can do, but she's nice and laughs and talks to me. She doesn't tell me to go to my room if I try to feed her food or her pills. She's the woman who used to beat the pants off us at Rummy. She's the woman whom I chose as my Confirmation sponsor because I respected her so much (even if the Confirmation didn't actually stick). She's the woman who worked in a factory during WWII and made my Grandpa chase her not once but twice to get her to marry him. She's the woman who called my father "Wee Willie" even though he's 6 feet tall. She's the woman I want to be when I grow up. She's the woman who finds enjoyment in the fall foliage and gets a laugh out of the kids playing at the park across the street. That's my Grandma. That's the woman I love and will mourn when she dies.
I just have to try not to remember the woman this stupid disease has left in her place half the time. The woman who yells at me for no reason other than one locked only in her head is not my grandmother. She's someone the disease has created. She is Mrs. Hyde. I know it sounds dramatic to say that, but it's true. In the story Dr. Jekyll went from a brilliant, decent man to a monster; a person who hurt people because it was fun or they just didn't matter. That's what dementia has done to my grandmother. It has a way of taking away my Grandma and replacing her with the monster. I know it's the disease doing the yelling. I know it's the disease accusing Mom and I of moving her things or throwing them away. I know it's the disease that makes me feel like she hates me and couldn't possibly love me. The problem is that the disease is looking out of my Grandma's eyes and the words are being said using the voice of a woman I thought loved me. It's hard to separate the two women and be understanding like I'm told I have to be when all I want to do is curl up in her arms and cry because she's my Grandma and she's supposed to be comforting me, not the other way around.