Scalloped Couch Potatoes

We woke up about 8:00AM this morning. Round of meds at 9:00 AM and a small round of spew. Mom moved to the couch and I started her fluids, changed her sheets. Bud and Sherry came to visit for a while. Mom had a little broth and 1/2 a Popsicle. Wendy came bearing gifts. [A coffee maker - I could be a test kitchen for Consumer Reports. It is a hard life at my house for appliances.]

Gail and Kathy came up to see Mom and came bearing dinner. [Thanks guys. My family thought they were in the wrong house tonight. The scalloped potatoes were a big hit.]

Bill and Ara from church dropped by some bread and Helen and Mack from next door sent over some chocolate cake.

Wendy left about 3:00 after mopping my kitchen floor. While Gail/Kathy/Wendy were here, I ran to the library and the tanning bed. I haven't been to the library since about February and this is normally one of my weekly haunts.

Mom has slept most of the afternoon on the couch. I am hoping this is just her getting used to the new meds. Julie said this might happen this weekend. She will be back Monday and we will play this by ear. We just may end up sleeping here tonight.

Donnie and Wanda are up in the morning.

Inked

Back from another midnight trip to the WalMart. Mom is restless tonight and wants to wander. I think she is adjusting to the new pain medicine. It is the same thing that we have been using orally, but in an extended release version. Hopefully, we won't be getting up all hours of the night to take pain meds. Keep your fingers crossed. We got up to go potty and she was very dizzy. I think I will sleep in her room tonight. I worry about her trying to get up. We had our 9:00 meds and 1/2 a cherry Popsicle tonight. (with the blessings of Julie). Mom only took 2 or 3 bites.

If you know me, you know I have some ink. In January, I got a lavender ribbon on my right shoulder. (Lavender is the color for cancers that don't have a color.) I really didn't think much about the placement when I had this done, but it fits. Mom holds on to my shoulders to get up out of bed. I rub her shoulders at night to get her to relax. I try and tuck my head on her shoulder when we lay together.

If you have a special story about Mom, do me a favor and drop me an email using the link on the page and I will post it for everyone to see. Or if you would like to add something to the blog, just email me.
We have several people coming tomorrow so another busy day.

Friday Night

We are settled and calm. One more round of meds at 9:00 PM at we are done for the night. We are switching Mom's pain med to something similar to before. We hopefully can switch to using the liquid morphine for just breakthru pain.

Rod came and saw Mom today. Julie was here and it was very busy. I am tired and I didn't get poked.

Busy day again tomorrow. Wendy is back this way, along with Bud and Sherry, and Gail and Kathy.

Frantic Friday

Mom is up early this morning. We woke up about 6:30 and had some nausea meds. We did our round of morning meds around 7:00. I did a couple of things around the house. Mom had some pain med. Stan was still home so I jumped in the shower. I think Mom's stomach is sensitive to me taking a shower. [I told Stan when I was getting in the shower, I was going to look like a regular person today.] Stan got me out of the shower, we had a round of spewing. Mom felt a little better. Back in the shower to wash off the soap. She is back in bed for a while. Guess I am just going to be irregular today.

Plus, we got 8 million tanks of oxygen yesterday. Holy Crap. You would not believe all the stuff that comes with this. I thought the IV stuff was a bunch of stuff. With this being said, I will be spending a little more time on the front porch. I walk around the house with a baby monitor on one hip and the telephone on the other. It is a good look for me.

We have a busy day today so if we don't answer the phone, we will call you back when we get a minute. Manicure/Pedicure, Julie, Patty, Rod and maybe Bud and Sherry today. (Plus our normal fluids, meds, general boss Robin around stuff.) I think also on our list today is a poopie. Julie is the Bowel Police. I guess this is one thing that I have always taken for granted. I haven't talked about or seen as much poopie since Zach was born. [And I have a 2nd grade sense of humor so I try to talk about this whenever possible.]

Emily Post

My new full time job is coordinating Mom's social calendar. What a day... Nancy, the hospice chaplain was here at 9:00, Joyce, our way wonderful helper was here at 10:30, and Mr. Hunter just left. Plus I have been fielding calls from Julie, our most wonderful nurse, and Patty, our most wonderful social worker and the home heath care guys. Mom had her hair washed in bed.

Mom is still nauseous and is having some pain. We are going to try a different route for her pain meds. (And I mean route literally). Everybody sing "I see your Hinney".

Mom has been pretty sleepy today but she is awake enough to boss me around.

Trouble me on the days when you feel spent

I just got back home from Zach's baseball game. Mom is sleeping. I need to wake her up around 10:00 PM for her night meds and then we are both going to bed hopefully for the night.

The volunteer that sat with Mom just left. To have someone sit with Mom, to sacrifice her time the same way that someone did for her when she wore my shoes is incredibly precious. And to willingly offer her time to me when I am spent. And I am spent. How hard this is, physically, emotionally, and spiritually. And I am thankful. Thankful of the time I could spend with my family.

It's in the way that you use it..

Mom is finally settled. Julie, our wonderful nurse came shortly after I called. More morphine and a phenegran suppository and this seems to have gotten better. Couple more changes in how I can give the meds. The goal is to figure out a dose that doesn't have me giving Mom meds for pain every hour. This is a ongoing battle as Mom's pain increases. Mom has a little bit of a swelly belly right now. If she would just let a couple of air biscuits fly (I had never heard it described like this.. Mom and I were watching 2 and 1/2 Men. I think Jake actually said "Air Biscuits. Get them while they're hot." ), she would feel better.

Mom is sleeping now but we are on just ice chips/sips of water until this settles. I am still giving Mom fluids. The little bit of food that Mom is eating is still creating nausea and pain. Like I told Wendy, we all can live off our butts for a couple weeks no problem.

Robert came by to see Mom today. Mom has been worried about me working at home and the vacation time that I have taken over the past few months. Robert came by to tell her that it was okay, and I needed to be here taking care of her. [This has been on her mind over the past couple of weeks. ]

We received our Comfort Kit this afternoon FedEx. It honestly looks like a prepared lunch from some sandwich place. The bottle drawer and shelves of my fridge are now dedicated to IV fluids and medicine. I have a sofa table also with Mom's meds. I break them down between stuff we are taking today, stuff we may need to take, stuff we haven't taken in a while. Between the sofa table and the fridge, we probably have 5-6K in drugs right now. [One of Mom's nausea meds is $1700. Go figure. ]

I have a hospice volunteer coming tonight to sit with Mom so I can go see Zach's game. It was rained out last night. I am so excited. Not excited enough to take a shower, but excited.

Our calendar is starting to get filled for the rest of the week:

Thursday:
Nancy - Chaplain w/Hospice at 9:00 AM
Joyce - Our wonderful Mommy bather/hair washer/general good guy
Mr Hunter is in the area Thursday and might stop by in the afternoon.

Friday:
Manicure/Pedicure for Mom at the house 9:00 AM
At some point during the day, Julie will stop by and change Mom's access and check on us.

Saturday:
Gail and Kathy roll this way

Enough

We are not having a good day. Mom is nauseous. We are back on the hourly morphine. I have a call into hospice. Mom slept the night and I thought we were going to have a good day. About 9:30, it just went downhill. Enough okay?

Tuesday is Bath Day!

We did more morphine/phenegran throughout the night. Mom seemed to sleep okay. We woke up about 5:30 and had a small spew and then she felt better. Usually Mom is up in pain until the spew, but this time, she woke up, threw up and then rolled back over, we had another round of meds and she slept for a while. We made it to the couch about 10:00. Joyce came over and gave Mom a bath and washed her hair. She had a little chicken noodle soup. I changed her sheets/straightened up her room. She is still having fluids and is asleep on the couch.

I have someone coming to give Mom a pedicure/manicure on Friday. [We are excited. PS- Thanks Gerald for this.] Mom gets another bath Thursday. [Joyce has way cool ways of doing this. I think I feel more comfortable doing this now.] Julie, our nurse, is back out Friday to change Mom's port access.

I have a volunteer coming tonight if it stops raining so I can go see Zach's game. (Cross your fingers). We have had tons of meds arrive today via FedEx and UPS. I feel like a satellite pharmacy right now. Who knew you could get strawberry flavored morphine? [There is a mysterious case of ensure on our front doorstep from UPS - Thanks to whoever sent this.]

Spewin' Sunday

Uncle Richard came yesterday morning and Mom actually ate a small breakfast. They had a nice visit. About 4:00 PM, the dreaded nausea came back with another round of pain. (Joanne was here during some of this). Call to hospice. Up the morphine and go to hourly doses until we get a handle on the pain. More nausea drugs. While Mom is spewin', I am also spewin' with a stomach bug. We were up hourly Sunday night trying to calm this down. Mom had a impressive round of spewin' about midnight Sunday, and the pain slacked off some after that.

I called this morning to see if Julie could stop by. We actually got Julie and Patty, the social worker today which was very wonderful. Patty spent some time with Mom, Julie and I went over the meds that I had give Mom over the weekend and make sure I had what I needed at the house. There is a team meeting in the AM to talk about Mom's meds. The pain meds are going to change most likely after this. The morphine doses/times this weekend gave them a better understanding of what is going on pain wise with Mom.

Right now, Mom is on a very small, bland diet. She had a little bit of apple sauce this morning and we both had some chicken broth tonight. Morphine creates major poop problems. Julie did some things with Mom to help this along. We have a slight change to our bowel protocol for a while to make sure the train makes it all the way out of the station.

It has been a tiring past 24 hours. After Julie left around lunch, I started Mom's fluids and we both went to bed for 3 hours and slept. Right now, I am washing my hands with soap and water instead of the alcohol gel I usually use. Stomach bugs can live through the alcohol gel, but not through soap and hot water.

Hope Mom has an easy night tonight. We are due after the past few nights.

Still, Still, Still

I just woke up to give Mom her next round of meds. To keep the meds in Mom's system at a constant level, we are on a 24 hour schedule until we add back some of the longer acting pain meds. Mom has slept most of the night without problems in her new bed in her new room. When my house is still like this, everyone snuggled in their bed, for a short time my house feels like a regular house. In the dark, all of the things that make my house so different now: the meds, the potty chair, the IV pole, the baby monitor, the sharps container, and the horrible brown folder blend into the shadows.

The horrible brown folder contains our HealthCare POA, Mom's DNR paper, a contact list, and a list of medicines, and her hospice information. This folder travels with Mom wherever we go. Now that Thursday is over, one of the hardest things about this day was this paper. My head knows that this is what Mom wants, but my heart can't imagine not doing everything possible if Mom is in this situation. I hope you have never seen this paper or have had the crushing responsibilty of handing this paper to another person. I handed this paper to the drivers that brought Mom home Thursday. Think of what I asked of these people I did not know. I asked them for kindness and comfort for my Mom.

This paper is a goldenrod color with a big red stop sign. But right now, the stop sign seems to fit into what is happening right now in our lives. Stop and evaluate what is important. The things that seemed important before Mom was sick have slowly slid down the list. Stop. There will be time for the mirad of things that fill our life later. Think of the times in your life God put a stop sign there. It wasn't to keep you from moving forward, but to remind you to be still and to look around at where you were going so you could cross safely.

Mom had a good visit with Gerald last night and we have another busy day today with Uncle Richard and Joanne coming this way. It will be a good day.