Friday, October 21, 2016

Part of the process

It's a strange thing to be in this place, caring for one's parent. Mom is steadily declining. We knew it when we moved her. It is more evident than ever. 11 months have lost decades of memory, and she is often like a person I've never met. She can be angry for no reason that I understand. Like a toddler--sometimes emotions just sweep through her, and she is helpless to cope with them. Sometimes she is aware of her loss and weeps. I am not sure which is worse, her baffled anger or her grief.

Many things about caring for mom are hard. I am lonely in it, because it's boring to hear about. It's like stories about your kids--while fascinating to you, they are not really that interesting to others. My siblings talk about mom, but they don't feel comfortable with it. Not because they don't want to hear, but it makes them feel guilty. They feel guilty for not being here. I don't blame them. I feel guilty too, for getting the time they don't. As hard at it is--it is also very special to be the one walking with her: poignant, funny, and sad.

Guilt is a part of the process, it seems. We all feel guilty for upsetting mom when she is upset--even if we don't know what we've done. We all have this childhood ingrained sense of disappointing her. We kids feel guilt toward each other, for not doing enough, or more, or for not knowing what to do.
I feel guilty when I am away from her too. When my sibs come, I run away and embrace my time. I don't even stay to visit with them. I run away, but I feel guilty for having such relief at escaping. And sometimes, it is an escape.

We have a caregiver coming 3 days a week now. Tina is a gift. She "visits" mom. We've enacted this elaborate ruse of Tina being a friend of mine who just fell in love with mom and wants to visit her. Tina brings games and art supplies and she and mom spend 12 hours a week together. It's such a relief to have another set of eyes on mom. Trained eyes, that can identify changes in behavior and help come up with solutions.

Eating is a problem. Mom no longer does well with silverware. She needs foods she can eat with her hands, and even those sometimes thwart her. Her palate has changed, she doesn't like anything remotely spicy and really only tastes bitter and sweet. So, she'd live on coffee and ice cream if she had her way. I let her eat what she likes, there is no up from here, after all, and why should she have to eat things she doesn't like? So, no Ensure protein drinks.

I bring her gifts of fruit and veggies I know she likes, but one or two at a time. One perfect peach. A dish of cut cantaloupe. I keep very little in her fridge because she throws it away "I think this belongs to the person who lived in this house before me" or just gets it out of the fridge and forgets about it. Sometimes she leaves it on the counter to "defrost." Much food is just wasted.

Monday, I bought a pound of the honey ham she likes. I kept half of it at my house in the "mom drawer" of my fridge, and took the rest to her house on Tuesday morning. I put it on the shelf in her fridge next to a tupperware of sliced tomato, a baggie of lettuce, a loaf of bread and container of mayo. I wrote on her white board in the kitchen: "You have the makings of a yummy ham sandwich in the fridge for lunch."

On Tuesday, after school, I went over to see her and she said "have you had lunch?" I said yes, but I'd make her lunch if she was hungry. She opened the fridge and pulled out a paper towel. In it was a ham sandwich with three bites out of it. "Hmnn," she said "I wonder who put this sandwich in there?"
She reached back in the fridge two more times and pulled out two more ham sandwiches, wrapped in paper towels. "What is going on?" she said. She put her hands on her hips and shook her head. "Someone," she said "has been sneaking in here and making ham sandwiches."

 I said, "I don't know mom, who would do that?"
She said, "Well, anybody! Everyone likes ham sandwiches." She put them all back in the fridge in their paper towels. "They'll be back for them later I guess."

Then, She pulled out the ham and the bread. "I am having a ham sandwich, do you want one?"

I used to be worried about the "people" who came to make ham sandwiches, or eat her ice cream, or play cards with her. Delusions? Actual people who she is mistaking for someone else? After 11 months, I know her house is peopled by her memories as they dance about and recombine. My grandma and my Aunt Ina Mae visit all the time, and they've been gone for years. Mom has great grandbabies she brags about that haven't been born yet. I do my best to sort them out and not upset her or get upset.

My gift is how silly I am. She thrives on impromptu waltzes and how-many-nursery-rhymes-can-you-say contests. She loves it when I challenge her to a birthday duel--she can't remember that her sister died, but she knows all 12 of her siblings birth dates and delights in the fact that I have to look them up on the family tree. You tube is my friend. We have learned the boot scoot boogie, the electric slide and the zumba booty circle about a million times. I try to always be the imp in her life. The one that brings unexpected flowers, Angel food cake, or a bird feeder. She loves surprises, and the gift of Alzheimer's is that she is often surprised. Even by the ham sandwiches in the fridge, and so we muddle on.

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