Six Hours Later

It took six hours to get the oxygen concentrator. The medications came shortly after that. On one hand, the gurgling is gone. On the other, there is now a tube on Marcie's nose. It isn't breathing for her, but it's there.

No food for Marcie tonight, but she did have some orange juice with the new antibiotic, which was prescribed to fight off her new fever. It was prescribed as a 10-day course, but arrived with only 7 pills. I will try a late meal.

Heavy Breathing

Marcie is gurgling again, so I have requested oxygen. The nurse got me some antibiotics to crush into her ice cream (or apple sauce). She needed pain medication, but she sounds clearer now. We'll see.

I managed to get out today (thanks to our hospice aide, Shawn Marie). I had a four-hour break and got some exercise, then came home and helped the nurse check Marcie out and diagnose her. Marcie took in some orange juice and some water, but that was about it. I'm just giving her love and waiting for the oxygen tanks and prescriptions to come in.

A Little Dinner

Actually, a tiny one. But it was a dinner! When Jane left, she advised me she had brought a couple of meat (veggie) loaf (frozen) dinners (organic). Marcie was hungry, so the mashed potatoes and peas and corn all lumped together in the brown veggie gravy was the ticket.

She couldn't eat much, but she ate what she did with alacrity. We shared. It was delicious. I took advantage of the whole situation and gave Marcie chicken noodle soup broth instead of water to wash things down with. We'll see if she gets another bounce out of all that effort.

Barbara reports that she got Marcie to take some chicken noodle soup broth earlier as well. I am just glad she can chatter with me a little and enjoy some food.

A New Morning

So, Marcie is fully lucid again this morning. She refused medication and did not grouse overmuch as I moved her onto her left side. She is tired, though. She took two syringes of water before I had to leave for work, we'll see how much more she gets.

I am planning something special to lift her spirits and will post it after I have the details worked out. I'll post it later. F.

Expecting Low Expectations

Hi, folks. A more "me-personal" post for all of you.

I am not at my prime. I am tired. I am awake or on a hair-trigger most of the night so that I can move Marcie, give her pain medication, and soothe her. I will return to work tomorrow, so I will be juggling jobs, so to speak, again. I will only get more tired.

This means my correspondence will be short, I will be shooing people off the phone, and I will probably be pretty cranky if prodded the wrong way. I apologize in advance. It isn't you. I will also be "off" if I am in the 20th hour awake or so...

In short, I am not running at full capacity and wanted to let everyone know that for every miscue, misstep or misunderstanding, I probably spent an hour taking care of our Marcie. Thanks for understanding, folks. F.

Little Drops of Hope

So a change in approach is paying off, but there have been issues. Marcie will take some water from an oral syringe. It's not much, but I think it helps wet her parched throat and she has taken several. We tried chicken soup broth. No dice. I will try again, even if it is late.

On another note, Marcie is also requesting more medication for pain. When I give it to her, she goes out like a light, though it takes a little time because I keep her dose, optimally, at enough to recover lucidity from if the pain fades . Overall, I just want to make sure her breathing stays relaxed and, not pained and rapid and I hope I can keep ahead.

If any of you ever need to care for a loved one who is suffering, remember that staying ahead of pain is better than catching up. The more pain your loved one is in, the more opiates or other painkillers you have to use to get them comfortable. This is how pain drugs work best.

If you have moral or recovery-based objections to or issues with the use of pain medications, many of which are potentially habit-forming, don't be a caretaker. Also remember that a patient need not be on their backs in bed to need pain control.

On the Outside

I spent the night turning Marcie from side to side to keep her from gurgling when she breathes. She has not been swallowing, so some of her food and soup may have gone down the wrong pipe. Later, I am going to make Marcie a little cocktail of honey and a drug we were prescribed to help cut down on the secretion of mucus into her throat.

Marcie is occasionally lucid, but so far has not taken in any water, or has tried but cannot swallow it. According to the hospice nurse, Marcie has two weeks, and that is "at the outside." I am doing what I can to make that not the case, but without some intake of water, death could come at the hands of an infection and a fever.

Thank you for all your thoughts and prayer of support. I share them when she is lucid, though all she can really do is nod in response.

The Vigil Begins

Marcie is not taking liquids of any kind now. She's awake, but she is refusing. I can't blame her. She has a lot of trouble breathing and has liquid in her chest, from what I hear. I do not believe Kaiser personnel who told me it was in her throat yesterday. She takes shallow, rapid, rattling, ragged breaths.

Keep her in your thoughts, if you are not dodging fires and sorting out evacuations or cancellations of them. Her mom, Barbara, is here and watching her with me.

I am able to administer some medication by crushing the drugs, suspending it in honey, then putting it under her tongue with a syringe. It was my own idea, and it works fairly well. Just a tip for anyone visiting from outside our circle of friends.

I Don't Know If It's Really Goodbye

Marcie's parents just left. The late-night visit was inspired Marcie's weak, but suddenly clear announcement, "I am dying, honey."
After I gulped that down, I decided to make sure I knew what she was telling me. They were strange words for her first clear ones in a day. She had had a good breakfast, and slept a lot, but she had had a generally good day otherwise.
"I know, Marcie," I said. "You're in hospice and I know what that..."
"Nnnnnmmm," and her pained frown, a weak turn of the head. Something else. Something I suddenly knew.
"You mean you are dying right this moment?" I asked.
I let her nod, her eyes closed tight, her lips closed, another frown. She wanted me to stop playing dumb. But tonight, for the first time, I wanted to hide in the dull shelter of ignorance.
"I'm dying right now," Marcie repeated, straining for clear diction against thirteen brain tumors, a throat full of ash and mucus, and her general weakness.
"Okay, honey," I said. "But not just yet, okay?"
She nodded and was quiet. Her breathing was ragged, as it has been for a day or two. Her face, pinched in a way I have refused to notice but now cannot deny.
All my illusions and delusions of progress from her decent morning? Thoroughly dispelled.
I called her parents when my throat was clear enough to. They came over immediately. Bob and Barbara each sat with her for a bit, then left in tears. I only hope they get home safely.

Maybe a little Bounce

So, the fires have me home with Marcie and her mom, since the school asked that only essential employees, ordered to come, in go to work. I wasn't on that list. It's a good thing. Marcie had a rough night, coughing and wheezing. She is having trouble breathing and it appears she is clogged up. The nurse visits later today, so I will let everyone know what is going on afterward.

On the other hand, Marcie's speech is clearer today and her mind is, too. She ate A LOT of the homemade soup Jane left us (as seen in the picture) and her medications went down with nary a hitch.

On another note, thanks for all the kind words of support. Keep your prayers and thoughts on Marcie, though. I'll relay your greetings.

Jane leaves, Marcie slips

So, Jane is on her way back to San Francisco. Marcie is not doing so well, despite wonderful care from Jane and a delicious homemade soup she brought from her mom (which Marcie ate and kept down quite well). So she ate something very good for her today, but not much of it.

Her turn has been noticeable as it came on. Marcie could not talk very well, and it was hard to understand her. Now she is mostly indecipherable. She is also having hallucinations, has some tics in her face and is waving her hands.

I'll keep everyone posted.

Grapes Among the Flames

So, while San Diego burned this morning, I woke Marcie up and she was more coherent than yesterday. She took about 10 grapes and all her medicines went down well. Jane came back over to help us out for the day, but her mom may need her to go help with evacuations. We'll see.

Here's hoping Marcie does well for the rest of the day and the smoke doesn't knock her down too much. The news says, "slow down, take it easy and drink a lot of water." We'll give it a shot.

A Good, if Busy, Day*

Visitors

Marcie had a good day, including two visits from her friends. Our former neighbor and close friend Tanya stopped by in the morning and did a wonderful job moving some of our neglected plants into bigger pots. She also helped make Marcie's view through the less staid by helping me arrange the plants. Marcie's childhood pal Jane also popped in to help out, watching over Marcie while I was out hunting down some cat food.

The *

No dinner for Marcie yet. I should have known when she was enthused about the offering (vegetables) that it was a trap. She was about ready to eat when she became nauseous. I'll keep trying. She's resting now and seems ok. Medicine for nausea is on the way.

An interesting read

Frances Shani's blog has a nice post on caregiver stress, including a video on the subject. But aside from that, she has a wonderful site about nursing homes and hospitals, something my generation will need to know a lot about in the coming years.

I have added Frances's blog to the links on the left. She is an author some of you might want to pick up a book from. Check her out!

Slow Start Today, And Visitor Stuff

Marcie is looking forward to her day, but she couldn't quite wake up this morning, so she's snoring away for the moment. She took some grapes, which helped me feed her the decadron, and I'll be making her a more elaborate breakfast later on.

I have had inquiries about visits. They're fine, but be patient. I can't accommodate everyone who wants to come by for now. However, I can lay out a few ground rules and some links to read first. First off, read this page on visiting cancer patients. Secondly, this page is public, so not everyone will get a visit who might ask for one.

Some common-sense:

• Visits are for family and friends only.
  
• Marcie gets final approval of visitors.
• No drop-ins.

Some less intuitive rules:

• No children on visits, please.
  
• Don't visit if you are ill.
  
• Contact me before you send or bring flowers or gifts.
  

Okay, I hope those are not too onerous. If you would like a visit, flash me an email and we will see what can be done. Have a good day, folks.