I find it extraordinarily difficult to write on bad days. By bad days, I don't mean days that go badly, necessarily, but just mom's bad days. She has a lot of them. For the past several days her mental status has been dropping severely in the evenings. Tonight we came home around 4:30 from eating out - a rare treat and something we did today to celebrate my father's probate finally being closed. She immediately locked on to the idea of looking for some books that have been on her mind lately. They are children's books that she has remembered owning for some reason, and they are nowhere to be found in the upper part of the house. Although she knows (or knew before) that she cannot reach the basement on her oxygen, she asked about going down cellar to look for the books. I told her that wouldn't work since her oxygen won't reach and the work would prove too strenuous for her. "Well shit," she said. (A completely uncharacteristic response). She was mad at me. I asked her calmly not to be angry and reminded her that I don't set her rules, but that I only try my best to remind her what's best for her. She shrugged it off. I watched her for a while, exhibiting more confused behavior (messing nervously with her journal, worrying over what day it was) and finally she said (or meant to say - it got a little mixed up coming out) that she couldn't think as well as a three year-old. I told her things aren't quite that bad and reminded her that they could always get worse. I suggested that she consider going to bed early, and she agreed it was a good idea. I gave her her meds, helped her get dressed, ushered her to the bathroom to take care of her teeth and toilet, then tucked her in bed. About an hour later she got up, telling me she'd had a bad dream and needed to check to make sure the stove was off. I assured her and reassured her that it was off and everything was fine. Half an hour later, I came by her room on the way to mine and she asked me if I had just said "Daddy." I had been talking to the dog, so I told her she must have heard me say "Paddy." She said "Oh, that's better." You bet your ass mom, I thought but didn't say.
The truth is that I dream of taking some time off. I have been told that I shouldn't feel bad about this, that time off is a normal desire for a primary caretaker and even necessary for one's sanity. The trouble I have with this is that it links clearly in my mind to resentment of having to take care of her. I don't care how normal it is to resent being in my position, I don't WANT to resent my mom. But I do at times, and it always breaks my heart. I'm working on taking it easier on myself but it's damned hard. Anyway . . . the hospice (with Medicare's blessing) allows for five days per year of off time, 24 hour days. If I elect to take this time off, Mom would be moved into one of their homes for the few days when I use them. I have recognized the need in me to take a break ever since she came home from the hospital in January and got admitted to hospice, but I can't seem to make myself do it. Yet. It isn't really like, but it feels like I would be condemning her to a jail of boredom for the time I would be gone. It's rough on her mental status, and things happen to her when she's in residential care that scare her. I'm only just now beginning to get the full story on some of the hallucinations she had while she was in rehab. Sigh.
I used to take mental breaks on a regular basis, where I would find somewhere to disappear to and no one in the world would know where I was. I would call mom and let her know I'd arrived okay, and then leave her a number for emergencies only. Then I would take 2 - 3 days to myself. It was grand and mysterious and relaxing. And quiet. I am learning to revere the quiet. I get a few minutes or so of quiet to myself throughout the day and it's where I find the scraps of my sanity and begin to mend them back together. Until I can screw up my courage for a real break, it will have to do.
You're very courageous to care for your mother but you need to take care of yourself too. Revere the quiet, I love that phrase and you *must* do it, and do it without guilt. You're very blessed to have supportive friends and you will need them later. My thoughts are with you; I too waited for my mother and father to die although I wasn't with them it was excruciatingly painful. My father's blood pressure was elevated until my mother died; he went to see her every day for what seemed like at least a year or longer. When his time came my sister was the one to care for him, she had the resources to go to see and care for him, unfortunately I was once again left behind in the shadows and don't think I've ever dealt with all the issues that resulted in my mind. Sorry to go on and on. Be well and stay strong...you'll be glad you did.
ReplyDeleteThank you for being the person you are, and for sharing these events.
ReplyDeleteI hope, perhaps in the fullness of time, I have something profound to say about your blog. At this time I do not know of anything helpful I can say. So please forgive me for saying too much. Best wishes always.