Daylight Savings Time could not have occurred at a more
frightening time in our lives: I fear there are dark days ahead.
When Ebony was being discharged, I was enthusiastic because the attending physician said the she was responding well and had been talking. When we got her home, I expected her to be tired from another hospital ordeal, and she was, but I fear I am not seeing any improvement. If anything, she seems worse.
Maybe I am overreacting because I know her so well, so intimately; but you would have to be blind not to see the changes in her are more pronounced.
It took almost two hours to wake her up this morning, and I started trying at 8 a.m. I finally managed to get her up and into the wheelchair and wheel her to the bathroom. When I tried to get her to lean forward in the chair, so I can wrap my arms around her waist and pull her up, she simply would not budge. Defiantly so, she sat in the chair looking at me with her eyes wide open, as if she was searching for a reason I would put her through all of this. It took time to work through this as she resisted quite a bit.
When I finally got her up, I could see how weak her right arm is. She cannot raise it above her shoulder without help, and then she winces. Her right leg was bad, as well. She doesn’t want to put her weight on it so she keeps her foot extended like a ballerina and is afraid of moving it.
After I cleaned her up, got her dressed and returned her to the chair, I made breakfast. She ate, but needed help. She fell asleep in the chair for most of the afternoon and I was reluctant to wake her. She’s going through so much and barely communicating and it breaks my heart to watch her struggle.
When I ask her the basic cognitive questions the doctors do,
she is unresponsive and just looks at me. She doesn’t seem to know the month,
date or year, but knows she is home. She did not know or say my name. I ask her
these questions daily, and I live in foolish hope that one morning I will ask
her to say my name and she will smirk and say, “You’re Heisenberg.” So far, it
has not happened.
Tonight I made dinner: sautéed chicken breasts with artichoke hearts and asparagus tips in lemon and butter. I cut up her chicken into thin slices so it would be easy for her to eat. I heated up some mashed potatoes and made corn with lots of butter, the way she likes and her mother brought her to the table. She could not lift the fork and kept leaning forward in the chair. I had to feed her but she would only eat a few small bites and then sat back and closed her eyes.
I try to engage her and talk to her, joke with her, tell her I love her and usually she responds. A glance, a smirk, a squeeze of my hand. Tonight, nothing. She was somewhere else.
At five o’clock I tried to get her to take her pills and this is only getting worse. She could never take pills well, but now it is more challenging than ever. I feed her the small pills and put the larger ones in apple sauce. In either case, she holds them in her mouth for a long time and ten, fifteen minutes later she’s leaning back and nodding off and I don’t know if she’s swallowed the pill or not. Then I have to wake her up as gently as possible and we go through this again and again. Each time I wake her she becomes more resentful, scowling at me the way cat does if you pull its tail. She might as well have hissed at me. I have to keep fighting for her but what do you do when the person you’re fighting for becomes your opponent?
Tonight I made dinner: sautéed chicken breasts with artichoke hearts and asparagus tips in lemon and butter. I cut up her chicken into thin slices so it would be easy for her to eat. I heated up some mashed potatoes and made corn with lots of butter, the way she likes and her mother brought her to the table. She could not lift the fork and kept leaning forward in the chair. I had to feed her but she would only eat a few small bites and then sat back and closed her eyes.
I try to engage her and talk to her, joke with her, tell her I love her and usually she responds. A glance, a smirk, a squeeze of my hand. Tonight, nothing. She was somewhere else.
At five o’clock I tried to get her to take her pills and this is only getting worse. She could never take pills well, but now it is more challenging than ever. I feed her the small pills and put the larger ones in apple sauce. In either case, she holds them in her mouth for a long time and ten, fifteen minutes later she’s leaning back and nodding off and I don’t know if she’s swallowed the pill or not. Then I have to wake her up as gently as possible and we go through this again and again. Each time I wake her she becomes more resentful, scowling at me the way cat does if you pull its tail. She might as well have hissed at me. I have to keep fighting for her but what do you do when the person you’re fighting for becomes your opponent?
At 6:30, she was out and her mother helped me get her out of
the chair and into bed. I kissed her goodbye but she was already out. I
hate leaving her like that: when she has bad days like this, it rips me apart
because I worry that I will come home and when I wake up, she’ll be gone.
I don’t know what to do to make her life better and not just an existence. Times like this I think she’s slipping away and I want to protect her, hold her hand, soothe her and make it better.
I told her mother, “Well, we’ll try again tomorrow.” Trying to be encouraging but feeling all the worse for wear and part of me dreads what tomorrow will bring.
I don’t know what to do to make her life better and not just an existence. Times like this I think she’s slipping away and I want to protect her, hold her hand, soothe her and make it better.
I told her mother, “Well, we’ll try again tomorrow.” Trying to be encouraging but feeling all the worse for wear and part of me dreads what tomorrow will bring.
