Update: 03/24/06

Medications:

120 mg. Oral Morphine in 4 doses.

120 mg. Extended Release Morphine.

3 mg. Lorazepam in 3 doses (for sleeping/anxiety).

20 mg. Compazine in 2 doses (nausea)

Morning SAT: Oxygen Saturation = 97/Heart rate = 94 (sitting, awake 3 hrs.).

Evening SAT: Oxygen Saturation = 96/Heart rate = 90 (lying down).

How Joann’s Day Went:

Joann had a fuzzy, yet pacific day. She ate well at dinner of Bill’s extremely delicious baked chicken and fresh asparagus. The three of us played cards afterwards and all was well until about halfway through the game. At that point, Joann started having extreme pain and wolfed down three 30-mg. doses of breakthrough morphine in an hour. She didn’t seem tox’ed-out, or so I thought. That seemed to mean she needed the medication, for whatever reason. I won’t know about the new pain centers until tomorrow. AdvantaCare® delivered Joann’s wheelchair this afternoon. At the moment, she refuses to consider using it, but I know that in the future I’ll need it to get her from bed to bathroom.

Update: 03/23/06

Medications:

80 mg. Oral Morphine in 3 doses (20-30-30).

120 mg. Extended Release Morphine.

1 mg. Lorazepam in 1 dose (for sleeping/anxiety).

10 mg. Compazine in 1 dose (nausea)

Morning SAT: Oxygen Saturation = 91/Heart rate = 125 (standing, awake 2 hrs.).

Evening SAT: Oxygen Saturation = 100/Heart rate = 94 (lying down).

How Joann’s Day Went:

Joann seemed to be doing better this morning; she seems to have kept her oxygen on all night. I think she stayed more elevated than before, thanks to the extra stability of the new sleeping pad the VNA brought in. There was saliva, but no blood mixed in. "Doing better," is a relative term though. She wasn’t very functional, though she was up-and-about, albeit briefly and slowly. We went to bed at 9:30PM, early for us, and didn’t play evening cards with Bill as we usually do.

Wellness Supervisor Carol came over this morning and we discussed several things, such as action on Joann’s "Dream Foundation" application, providing Joann with a wheelchair, getting her set up on "Rides" so she can have doctor’s appointments if necessary, and bringing in someone to do Joann’s hair.

The Dream Foundation application stalled because Joann’s condition changed enough so that our first choice, making a trip to San Diego to see my father (whom Joann has never met), was infeasible. The second choice was to have him come to see us, but family matters place him close to us in the next couple of weeks. Joann will have to make a new wish now, something she is thinking about. The issue of getting Joann to any doctor’s appointments is moot, hospice patients usually don’t need to see doctors. However, getting Joann set up for Rides as a backup plan is still on the table. Carol also set up a woman to come in and shampoo and cut Joann’s hair. We await her call next week.

Joann’s pain became worse in the afternoon, so I am now giving her 30-mg. doses of breakthrough morphine as opposed to the 20-mg. doses she was taking. The frequency remains about the same, three to four times a day. I think its safe to say that Joann is homebound now. Without a wheelchair, she isn’t able to go anywhere that takes more than a few steps. VNA will bring her a wheelchair and I’ll park it somewhere in the apartment, should she choose to use it.

Carol also brought over a letter that describes Joann’s hospice status and my role in taking care of her at home. She also initiated In-Home Supplemental Services, the agency that will pay me to take care of Joann, and be able to continue paying rent. These are the things I needed to keep our home safe for the time Joann has left. I believe that Joann is under less stress knowing that her home is stable.

Update: 03/22/06

Medications:

60 mg. Oral Morphine in 3 doses.

120 mg. Extended Release Morphine.

2 mg. Lorazepam in 2 doses (for sleeping/anxiety).

20 mg. Compazine in 2 doses

Morning SAT: Oxygen Saturation = 97/Heart rate = 110 (standing).

Evening SAT: Oxygen Saturation = 100/Heart rate = 110 (lying down).

How Joann’s Day Went:

Awoke to find a significant amount of blood (4-inch-diameter) blotch mixed with saliva on her bed sheet. This caused me to call the VNA to report. She is also having "light-headedness," and "wobbliness." Generally, Joann had a tough day. The VNA brought her a foam mat to help support her body while she sleeps, maybe this will help with her bleeding, if she is more upright. No cards tonight like we have been used to, she couldn’t focus well. We went to bed at 11:00 PM.

Update: 03/21/06

Medications:

80 mg. Oral Morphine in 4 doses.

120 mg. Extended Release Morphine.

2 mg. Lorazepam in 2 doses (for sleeping/anxiety).

30 mg. Compazine in 3 doses

Morning SAT: Oxygen Saturation = 91/Heart rate = 101 (standing).

Evening SAT: Oxygen Saturation = 100/Heart rate = 91 (lying down).

How Joann’s Day Went:

Late at night, lying next to her, before sleep claims me, I hear her breathing. She breathes like a bird, rapid and shallow, like the fluttering of small wings trying to take flight. I think now I know why. Nurse Kathy stopped by today. Joann’s hypoxia was a precursor to what the nurse thought appeared to be pulmonary edema. Joann says she is having bouts of stomach pain, and pain in the lower left side of her back. She is also experiencing a foaming backwash when she drinks or eats. There was also an inch-diameter spot of blood mixed with saliva on her bed-sheet this morning as well. This may be temporary, so I’ll know better tonight. Now, Joann thinks she is in the last stage before the final stage. On the other hand, this could be one of those "dips" in her overall condition. I hope so.

Otherwise, Joann perked up somewhat later in the evening and had a good dinner and played cards with Bill and I. She didn’t come all the way back though, as is to be expected in her condition.

Update: 03/20/06

Medications:

60 mg. Oral Morphine in 3 doses.

120 mg. Extended Release Morphine.

1 mg. Lorazepam (for sleeping/anxiety).

10 mg. Compazine

1 tab. NitroQuick

Morning SAT: Oxygen Saturation = 96/Heart rate = 111.

Evening SAT: Oxygen Saturation = 99/Heart rate = 90.

How Joann’s Day Went:

Joann is still having trouble catching her breath, in the morning especially. As her SAT shows, she gets better as the day goes on. This morning she had a new pain in a new place and took a NitroQuick at 7:30 this morning to ease her pain. This new pain is lower than her diaphragm but as sharp as the "belt" she gets around her under her lungs. She’s also saying that she has a dull lower back pain that has gone from infrequent to constant. She’s still taking Compazine, this time only once and an extra Lorazepam at bedtime. In the late night, she was experiencing stomach pains not associated with acid reflux.

Update: Joann’s Medication List—As of 3/20/06

This is the list of medications Joann takes in three tablet groups set up for her daily. The concentration is on the morphine and anything else that might keep her comfortable. Remember that the hospice focus is on keeping her comfortable. This is an update showing her current meds as they are adjusted by the VNA nurse. All adjustments are in red and noted at the bottom of the blog. Deleted medications are only listed at the bottom of this blog.

Morning Tablet Set:

100 mg.—Zoloft.

8.6 mg.—Senokot (stool softener).

60 mg.—Extended Release Morphine Sulfate (pain).

20 mg.—Prilosec (stomach acid reducer).

2.5 mg.—Provera (hormone).

0.625 mg.—Premarin (hormone).

325 mg.—Aspirin (enteric coated for her stomach).

Evening Tablet Set:

8.6 mg.—Senokot (stool softener).

60 mg.— Extended Release Morphine Sulfate (pain).

Bedtime Tablet Set:

1 mg.—Lorazepam (sleeping pill)

100 mg.—Elavil (anti-anxiety)

200 mg.—Colase (stool softener).

20 mg.—Prilosec (stomach acid reducer).

As Needed Medications:

20 mg.—Oral Morphine Sulfate (breakthrough pain).

20 mg.—Prilosec (stomach acid reducer).

10 mg—Compazine (nausea).

1 mg.—Lorazepam (sleeping pill).

3 drops—Atropine (breathing aid for panic breathing).

Atrovent Inhaler.

Adjustments:

10 mg.—Prednisone (aids breathing, anti-inflammatory). Deleted, because Joann was having problems with facial skin conditions and sore mouth.

Senokot (stool softener). Down from 17.2 mg (1 tablet).

Update: 03/12/06—03/19/06

A Note about This Update:

First of all, THANK YOU for the kind words posted to the mirror blog at aboutdying.blogspot.com. I really appreciate your support.

Now, a bit about why I have been so late with posting the blogs.

A few days ago, Joann went into a state of hypoxia, where she doesn’t get enough oxygen in her bloodstream, even with her oxygen on. At least that’s what I thought it was. Her state lasted for a couple days, but on the first day of seeing her disoriented and hallucinating, I went to my boss and tried to get a couple of extra days off which were denied. Long story short, there was a blow-up and the suspension of my services. Maybe I was wrong in asking for the additional time off, or not, however I could have handled the situation a little more diplomatically. Especially at this time in Joann’s life. At present, I am hoping to resolve our differences and get back to work.

More on all of this in the next blog. The missing updates follow.

Sunday, March 12, 2006

Medications:

60 mg. Oral Morphine in 3 doses.

120 mg. Extended Release Morphine.

1 mg. Lorazepam (for sleeping/anxiety).

How Joann’s Day Went:

Joann seemed to be out-of-it this morning. She’s having a hard time breathing again and seemed quite confused. Her mouth continues to hurt and her gums are sore. She seems to be a little better by this evening.

Monday, March 13, 2006

Medications:

40 mg. Oral Morphine in 2 doses.

120 mg. Extended Release Morphine.

1 mg. Lorazepam (for sleeping/anxiety).

How Joann’s Day Went:

Today was my day off and hypoxia seemed to be the theme of the day. Joann was breathing so badly this evening that she was getting delusional. Luckily, it was my day off and I could spend all my time with her. Although she only took 40 mg. of breakthrough morphine, she was fighting for breath almost constantly. However, by bedtime she seemed to be in better control once I got her to use her inhalers. This whole thing is a new feature.

Tuesday, March 14, 2006

Medications:

40 mg. Oral Morphine in 2 doses.

120 mg. Extended Release Morphine.

1 mg. Lorazepam (for sleeping/anxiety).

How Joann’s Day Went:

VNA nurse Ruth stopped by today for Joann’s checkup. Most signs of Joann’s low oxygen state seemed to be gone, although they did return in force by the evening. Ruth took Joann of the prednisone, feeling that it may be the cause of her facial and mouth problems. She also ordered salve for Joann’s face to contain her rashes. By evening though, Joann couldn’t remember events along a timeline, couldn’t focus on which day it was or what she had done or hadn’t done. This is a new feature, or an enhanced older one. This is was the evening I had words with my boss about taking time off to take care for Joann because of her heightened disoriented state.

Wednesday, March 15, 2006

Medications:

40 mg. Oral Morphine in 2 doses.

120 mg. Extended Release Morphine.

1 mg. Lorazepam (for sleeping/anxiety).

10 mg. Compazine

How Joann’s Day Went:

Joann appeared to be a little more on her planet today, although she is experiencing some of yesterday evening’s disorientation. It might be because she is under more stress after my conflict with my boss. Joann’s voice seems to be breathier than usual and she is tired all the time. On a brighter note, she seems to take less of the breakthrough morphine than when I’m not here. Right now, she’s averaging about 40 mg. versus her 80-100 mg. she was taking when I worked all the time. Looks like I’ll be able to spend much more time with her now that I’m in job hiatus.

Thursday, March 16, 2006

Medications:

40 mg. Oral Morphine in 2 doses.

120 mg. Extended Release Morphine.

1 mg. Lorazepam (for sleeping/anxiety).

How Joann’s Day Went:

Joann had a better day today not so disoriented. The job thing still weighs on her, but that’s to be expected. She keeps telling me "everything will be alright." That’s sweet of her, meanwhile; I’m a bag of roiling nerves trying to figure out what to do next. I know there are programs out there that will pay me to stay at home with her as her caregiver. Having never been here before though, I don’t know where to start. Otherwise, her hypoxia seems to be under control now.

Friday, March 17, 2006

Medications:

60 mg. Oral Morphine in 3 doses.

120 mg. Extended Release Morphine.

How Joann’s Day Went:

Happy St. Patrick’s Day. Well, at least I still have a sense of humor. Nurse Ruth came by today and we discussed out housing situation and how to make things right with my boss. The heat of battle having faded a bit, I agreed to grovel. After all, it’s not about me it’s about Joann. In the afternoon, Joann called my boss and opened the door for negotiations. We both feel better now believing that this situation may be repairable. I’m game, so long as the owners (bosses) are. Joann took more breakthrough morphine than she has in the past few days but no Lorazepam. She’s still slightly disoriented, very tired, and sleeps a lot.

Saturday, March 18, 2006

Medications:

20 mg. Oral Morphine in 1 dose.

120 mg. Extended Release Morphine.

1 mg. Lorazepam (for sleeping/anxiety).

How Joann’s Day Went:

Joann slept a lot today but looks a lot better for it. She’s getting some of her color back and isn’t quite so sallow. She’s not displaying any hypoxia features, ate dinner with gusto (for her), played cards with Bill and I, and went to bed by 12:000 AM. She used only one dose of breakthrough morphine today, though that might be accounted for by sleeping almost 16 hours today.

Sunday, March 19, 2006

Medications:

40 mg. Oral Morphine in 3 doses.

120 mg. Extended Release Morphine.

1 mg. Lorazepam (for sleeping/anxiety).

20 mg. Compazine

SAT: Oxygen Saturation = 91/Heart rate = 125.

How Joann’s Day Went:

Joann slept until 7:30 AM, took a shower, came back to bed and slept until 1:00 PM. When she awoke, she said she wasn’t having trouble breathing, but she was very tired. I noticed that she was more disoriented than usual as well. She also took a three-hour nap in the evening and appeared to be in better control. I’m learning that there are "good" days and "bad" days for her. I guess I always knew that, but it’s a different thing dealing with a loved one actually going through it.