Closer to the edge, part 1:
MERE’s 12th birthday was today (December 1st), and the present situation was really overshadowing it. Didn’t help that a new local Creole/Cajun Restaurant (selected by Mere) that we had eaten at during Windycon earlier in November was providing the birthday dinner via carry-out, and that the food was truly horrible. Mere and I were shocked, and I think she was beyond disappointed.
THE REST OF EVERYTHING is crappy, to say the least.
CONNIE: I mentioned last time that she was getting weaker and more confused / anxious; it got a lot worse. I’m going to excerpt from Susan’s journal on CaringBridge for Connie:
Mom is pretty much the same as my last post, except for her nightime confusion and inability to sleep for more than a couple of hours at a time. It’s essentially called sundowning where there is increased agitation and confusion in the evening hours and at night. Mom sleeps (deeply) for much of the day, but gets really confused and anxious at night. Since she is much more wobbly, we don’t trust her to walk to/from the bathroom by herself, but she will still try to do that at night because she doesn’t want to wake anyone up (and it’s something she’s always been able to do). Besides, by the time she’s awake enough to realize that she needs to go to the bathroom, she’s already gone. We have lots of laundry, now.
That we did. We gave up on nightgowns because of her regular bouts of incontinence, and put washable and disposable pads everywhere plus pullups. (As I write this, I’m in my office and more of the laundry is going through the machines.)
The hospice nurse told us that she couldn’t predict what would happen when, but we knew about various signs of ‘progress’ towards the end; Susan and I kept an eye on her for these, and they started to pile up. From Susan’s journal:
- Profound weakness - usually the patient cannot get out of bed and has trouble moving around in bed. (JIM: We were doing more and more to physically move her around in bed and to and from the commode.)
- Needs help with nearly everything he or she does. May be unable to change positions in bed without help (Yes)
- Less and less interest in food, often with very little food and fluid intake for days
- More drowsiness - the patient may doze or sleep much of the time if pain is relieved. May be restless and pick or pull at bed linens. May be hard to rouse or wake. Anxiety, fear, restlessness, and loneliness may worsen at night (Definitely)
- Cannot concentrate, has short attention span (Definitely)
- Confused about time, place, or people (at times. She has confused me with Dorothy (her mother) and often asks “Who’s here?” She has also talked of giving butch a ride (somewhere). Though she almost always notes 3pm because that is when Meredith gets out of school and it was her job for years to pick Mere up)
- Involuntary movement of any muscle, jerking of hands, arms, legs, or face (Definitely)
- Breathing may speed up and slow down due to less blood circulation and build up of waste products in the body (Definitely. Her heart rate and blood pressure are increasing because her heart is having to work harder. She has almost no air movement in her left lung. She has swelling in her feet and legs which mean that her kidneys are shutting down)
- Mucus in the back of the throat may cause rattling or gurgling with each breath (Definitely)
- The patient may not breathe for periods of up 10 to 30 seconds (Definitely)
All these were showing up in different ways; she’d come out of her bedroom and want to go into the living room and watch television all day. At first, she was awake and kind of mindlessly watching a lot of daytime ‘reality’ TV; she stopped watching anything that was too demanding or too uncomfortable for her. Then she started falling asleep for greater and greater periods of time, woken up now and again due to breathing problems (she had an oxygen machine since early September, and her lungs started to get clogged) or trips to the portable commode next to her recliner.
And always, she was massively uncomfortable due to the pain from the tumor(s). Most she interpreted as either hunger or cramping lower back muscles that had her moving here and there and getting more meds and pillows and whatnot to try to avoid the worst of it. Her meds doubled to cover the pain, but it served to increase the hazy mental issues and her deeper sleep and maybe stay ahead of the pain levels.