Mom is dying, post 7

 Note: these writings are NOT polished, when re-reading them find multiple mistakes, but too tired to edit.

Hospice nurse was here today, and acknowledged the obvious, that Mom has declined significantly since Thursday (it’s Monday, for those reading another time). I advocated for more morphine & Ativan, she agreed, noting that it’s harder for someone to die if they’re not comfortable. So, increased doses, frequency and ‘as needed’ doses written. Her urine is getting cloudier. When I told Mom this she asked ‘die faster?’, I said yes, she said ‘good’.  She’s having a much harder time speaking today, a couple times had to do ‘squeeze my hand for yes’ because she couldn’t get words out. She’s intermittently coughing, which has to be uncomfortable; medicine for secretions comes tomorrow. She is still cogent when she’s awake. The hospice nurse’s guess (which is only a guess) was that she will die by the end of the week. When I told her this she responded very clearly ‘good’.  I am very aware of how blessed I am that she is wanting to die and getting her wish, rather than the pain of watching someone fighting their death. She's better in mornings to about 3:00 pm, then starts getting worse. Same pattern for three weeks.

 She still sips a little water with pills, everything has been discontinued in pill form except for the Parkinson’s meds, so she doesn’t get tremors. This is especially important because her tremors were primarily around her jaw, and that may be why her faces is moving in such bizarre patterns. The Tylenol was no longer controlling the pain, and that’s a big pill. She’s not needed her mouth wet as much, I brought over some OTC eye gel to help her eyes stay moist, and that seems to be helping. Right now I’m sitting a few feet away, her breathing loud and regular, Mozart playing softly.

 It's hard to describe how surreal it feels to be sitting here typing (or reading, or eating, or texting) while my mother dies. There’s nothing to be done, but it just feels as if I should be doing something. I’ve got a greater appreciation for cultures who start mourning earlier, or who have elaborate rituals around death which require planning and getting supplies. I think they were created to give people something to do, and that sounds pretty good about now. I’ve coped with multiple medical & practical issues, cleared out a ton of papers, started clearing out clothes, still have to cancel newspaper & magazines, will do tomorrow. Outside that there isn’t anything to be done, you just………wait.

 As was my pattern when I was critically ill my way of coping is being super organized and thinking clinically. And it’s fascinating from a clinical standpoint. I’ve been around a lot of death, although in all fairness the goal was not letting it happen. I’ve been with friends as they died, and in the hospital when there was someone dying alone, I’d sit in their rooms and do paperwork, talking softly in case that was a comfort.

 She just sat forward, coughed a few times. Leaning forward doesn't look comfortable, picture holding yourself up half way through a sit-up. Her hand started moving under the covers, slowly, towards her upper body, I moved the sheets so there was no impairment, her hand continued towards the button around her neck that summons the nurses, which had gotten trapped under her nightgown. But even after moving it she was still agitated, and it’s less than an hour since the meds. She was trying to talk, was grimacing quite a bit, kept moving her hand, looked to her left but didn’t appear to be seeing anything, still in that painful looking position. I asked if she had ‘visitors’, hoping that maybe she’d see a familiar spirit (yes, I TOTALLY believe that), but she continued to be restless, so I went for the tried & true swabbing of the mouth, then the gel, which she weakly swished around in her mouth, then put Vaseline on her lips. She remained sitting up, still occasionally grimacing. The facial movements may be her trying to express something, or it may be the Parkinson’s. I reassured her, suggested she lay back, and finally she did. It’s so hard to watch, not knowing exactly what they want, and seeing their frustration in not being able to communicate. 

I’m thinking it will be ‘easier’ when she becomes unconscious, as hopefully she won’t be aware. The trick then is to guess when she needs to be medicated, other than that it will be long stretches of nothing but listening to her breathing. But hopefully she won't be in pain or discomfort; or is it me that won't be if it's not obvious?

Later in the evening, from home:

I've been getting at least 8 hrs every night since this started, but it's taking it's toll after 3 weeks. (First week was getting ready for announcement to doctor, lots of stuff to get done.) This morning I woke up and within minutes felt as tired as I had going to bed. My sleep seems fine, using CPAP, think it's just worry and the pending major change in my life. Beth looked at me this morning, and said 'It's time you admit you need help, this is what I'm here for, to help you.' In the last several years I have started repeating a mantra to myself: 'You're on disability for a reason. The reason is you are sick, not weak, but sick.' This is what I'd say to someone else, and so often we don't give ourselves the same grace. 

Driving over the fatigue hit me, and I know the standard care givers speech: 'put your oxygen mask on first', etc, Texted Beth 'You're right, I need some down time.' Mark brought her over a little after 5:00, and I came home. I did nothing except lie on the couch and watch a stupid movie. (I'm talking really stupid, Hallmark channel stupid!)  While not feeling perkier am hoping this translates into a better night's sleep.

How much worse will she be tomorrow?