Put On Those Traveling Shoes

Good evening to all. Boy are we tired. Two days of traveling to Raleigh are draining. But very much worth it. I was able to take grandma to see mom today and that felt very good. They both were able to visit for about 1 1/2. This was a win win for everyone. Robin and I were able to finish mom's room at Robin's and boy is it pretty.

Robin and I both are aware of how hard it is for people to get to see mom. Please understand that we moved mom to were she could get the best care and right now that is Robin's in Raleigh.
Mom is happy there and Robin is able to do thing for her that a nursing home or hospital could do for her. Robin is able to give 24/7 to her if needed. I am here taking care of things in Greensboro. We are not discouraging people to go and see Mom, we are only asking that you call ahead so that Robin can have mom up and ready for company. We are also excited to see other people. We miss our mom more so than we can even say. We know that everyone misses mom. we miss her too.

We both want to thank everyone for their prayers and support as Robin and I go into area that we have never been in. We are doing everything we can do to honor our mothers wishes with everything we do. What ever my mom asks for magically appears before her post hast if possible.

Thanks again for everything everyone has done from sheets and ensure to food for Robin and Mom. That is one less thing Robin has to do and that means alot. After spending the last two days in Raleigh have given me a new appreciation for my sister. (don't tell her because her head will swell). When I see her handle mom's meds and mom in general, my heart stops. I know that I could not do that for mom but I thank the Lord each night that Robin can..I can pay bills, balance check books and take care of the condo day in and day out... that is not a problem for me.
got a problem with a bill or I need to make a phone call on moms behalf- I can do it with my eyes closed. For those who don't know- I am much meaner than Robin and I keep my accounts pretty short. I will call and get things straight in a heart beat. This has proven very helpful for me for mom's accounts.

thanks again, Robin I love you and I am thankful for you.
you big stupid head.

love,

wendy

Without enough sleep, we all become tall two-year-olds.

JoJo Jensen, Dirt Farmer Wisdom, 2002

Mom is having a hard time with the nausea. I put her to bed last night with the same meds that worked so wonderfully Thursday night that gave us a wonderful Friday. I ran to the grocery store about 11:30 PM. I got back a little after midnight. Mom woke up about 1:30 w/nausea and pain. Morphine, another BHR supp at 3:00 AM, more morphine. A call to hospice early this morning to see what else I can give Mom. We switch up her meds about 8:00 AM to try a different approach. She starts throwing up at 9:00 AM. Call back to hospice. Hospice calls Dr. Dr calls in some emergency meds,fast trip to the drug store, and we start a new round of different drugs to see if we can calm this down. Patch behind the ear and we begin alternating 2 different nausea drugs to see what works. Mom finally starts to get some better around 1:00 PM but these are very sedating. Wendy and Grandma are here during the middle of this. Check back in w/hospice at 1:00 PM and mom is feeling some better. Hospice nurse calls again about 4:30 to check on Mom. We weren't sure if they would need to come our way. Mom seems to be settled at this point but we are aggressively treating the nausea and pain right now, which is making Mom sleepy. We need to break the cycle and this may be the only way out is to let her sleep until everything calms down. When you throw up so much, your body forgets it isn't supposed to do this all the time. The time sleeping helps her body (and tummy) settle down and remember to act right. We didn't sleep last night, so sleep is very valuable today for both of us.

We actually have 5 different nausea drugs at the house in several forms. The problem is that what worked today may not work for the nausea the next day. Each has a different mechanism for treating nausea, so sometimes this may be trial/error until we figure out the right drug for what is happening right now.

Wendy brought up some more stuff and they both had a chance to visit briefly. Depending on how Mom feels, she may be back in my bed with me tonight instead of in her bed by herself. This way she can touch me when she needs me and not need to move.

Gerald is coming this way tonight to see Mom for a while. I am letting her sleep. [We are watered up.] until he gets here just so she has some energy for the visit.

Beth called today to ask if she could sit with Mom so I could go to the baseball game. I can't tell you how much I appreciate this. [She is an ICU nurse.] I just couldn't leave Mom today but I will take her up on this at some point. Leaving Mom creates a new level of stress right now.

Unfortunately, this day has become more common over the past week. As I sit and try to update you on Mom, I look back at the past week and this has been more draining that Mom's diagnosis. We have had really wonderful caring people in our house this week and at the hospital, and this has allowed us to make it to Saturday, with Mom laying on the couch. Wendy and I had a good day with Mom Friday and we are very thankful.

Your joy is your sorrow unmasked.

Mom had a good day. Wendy and I spent most of the day working on Mom's room. We are finished painting. We have another good day before this is finished.

Mom's meds continue to get more complex. I have lists and more lists but I am still worried that I am missing something. Maybe as I get used to this, it will be easier. Right now, what Mom takes is pretty fluid and is changing day to day as we try to fine tune what works best. The goal is comfort and that Mom is awake. This is harder than it sounds. I have a new spiral notebook that I write down everything (and I mean everything).

We had a round of hospice nurses here this morning to watch Mom's port access change. This wasn't as bad as it sounded. Our nurse is named Julie and she is absolutely wonderful. The volunteer coordinator was able to find someone to hang out with Mom for a couple of Zach's ball games. I haven't made any games this year. I can't tell you how wonderful this is. [Finding people to sit with Mom is harder now. Between the meds and making sure Mom is comfortable and making sure the person is okay with sitting with Mom. - There are new rules right now, but that is a different post. I can say the rules with out crying, but it is a little harder to put them in writing. ]

Wendy came bearing tons of gifts. Thanks to everyone for the Ensure and the sheets. As soon as Mom is back on her feed (I need to remember to tell her that I wrote this. ), she will be chugging this stuff down. Today, Mom didn't eat much because of how her tummy was feeling, but no throw ups. (Yeah!)

Thanks to Gayla for dinner. Food has been the last thing on my mind this week. Church is the only way my guys have gotten fed.

Wendy is coming back up Saturday with Grandma, and Uncle Richard is coming Sunday. I think Joanne is stopping by Sunday afternoon, but not sure.

Compounded

Mom is feeling some better, but she is pretty groggy. The goal for tonight is to keep her comfortable and nausea free. We just need to give her poor tummy a break. Just sips of juice tonight. We have had a couple of changes to Mom's medicine this afternoon as a result of the nausea/vomiting.

Mom will wait until her pain level is high before asking, and this puts us playing catch up. We are trying not to be up and down, but to have constant pain relief. I am getting better at reading Mom's eyebrows. Mom is having a hard time distinguishing between the pain and nausea right now so this is making this a little harder.

Since she isn't able to keep anything down, we are using a combination of suppositories and liquid morphine. Mom let me do the suppositories. [These are a specially compounded suppository made specifically for Mom by a pharmacy in Garner. They come in a bullet like plastic mold. ] I agreed only if I could I sing "I see your hinney" as we do this. We are doing the morphine every 2 hours tonight and the suppositories every 6 hours unless we need to move them closer together. Looks like I sing again between 1-3A in the morning. Join in if you get the urge. The morphine is doing a good job of controlling this new pain.

We have a group of hospice nurses coming in the morning at 8:30 to access mom's port. Before Mom left the hospital today, I made sure she was well watered and then they pulled the access. My hope was that we would be able to jump in the shower, and also to give the skin under the Tegraderm a rest. No bath today with what else was going on. When I spoke with the Patty, our social worker today, she said she would be able to get someone to help with this. I can wipe butts and clean up throw up without a problem, but bathing Mom just makes me cry.

Wendy is coming in the AM to meet the Hospice nurses and help get Mom's room situated(and my house.) Yeah! Church brought dinner tonight and some of the wonderful potato soup for Mom. I hope she feels well enough to eat some Friday.

Home Again

Mom and I are home now. The past 2 days have been absolutely mind numbing and humbling. Mom came home by ambulance today around 11:15 and we met Judy (our wonderful intake nurse) and Patty, our social worker at the house maybe 15 minutes after we arrived. I don't think that moving the President takes as much planning and coordination as moving Mom home today. I need to say thank you to Mary Lou, our social worker at the hospital - whenever I had a problem, she would say - Give it to me and she would deal with it. Her attention to Mom's comfort coordinating the details made this easier. From faxing prescriptions to making sure everyone had signed off everywhere made this crazy day easier. (PS. Thanks Priscilla for tracking me down today. You were a welcome surprize.)

Mom is still throwing up. We are messing with her nausea meds and pain meds to keep her comfortable and hopefully will get this under control. This pain/nausea that is happening now is a new thing, and some of our old tricks are not working this time around. I have to go to Garner at 6:00 to pick up some meds that are being compounded for Mom as I write. The blockage is sending everything that goes down back up right now. After the last round of throwing up around 2:30, we are trying a different tactic w/the compounded meds being another option. It takes about 3 hours to make these so that is why I don't have them in the house right now.

We met a new oncologist that has admitting privileges at Cary Wake. He will be Mom's attending now. Mom and I both like him a bunch. Believe it or not, he actually knows George. Small world.

We may need a couple of days to settle down before we are back open to company. The hospital stay was very tiring and we need to figure out the best way to keep Mom comfortable before we open back up for visitors.

Mom is running a slight fever right now. We are watching this to see if it increases or just a one time deal. She had some Tylenol this afternoon, and I am hoping this was absorbed before the last round of throw ups.

THE OTHER ONE

Hello, Some of you may not know me but I am Wendy Neese, Pat's other daughter. I just want to take the time to say "Thanks" to everyone. You all have been great. I am not surprised that mom has this many friends. She is truly blessed. Mom has been a great friend to a lot of people over the years. I know that through everything that Robin and I have been through would have been much much harder without the help of all of you. Your kind acts of friendship have been a blessing to us. I am an avid reader of the "where is patty sue" blog. i read it everyday, sometimes several times a day. Some times it makes me laugh and sometimes I makes me Cry.
I think back to years ago to when mom was well and it makes me "sappy". That's sad but happy because i know those memories are priceless. My mom and I have grown much closer over the past couple of years and i would not trade that for the world. I never knew that my Saturday cleaning list would train me for that is happening now. i got my organizational skills and the complete and total ability to work from a list from mom. As we try and do her business in a way that she would be proud of us, I find my self making lists.
A list of things to take to Raleigh, A list of bills I need to pay for her, A list of things to take care of at her house. A list to make sure i have not missed anything from the lists.
Who would have thought it.

Robin and i am having to make decisions that no child should have to make. This is just not right. there is not on thing about the that is right. but right or wrong it is our reality.
we eat (sometimes), dream (nightly) and breath this.
There is not a minute that goes by that we do not want mommy back.
mom with her hair just so but slightly crazy. always always always done just so . always complaining that heather whacked her hair. pots and pots of make up and the knowledge to know how to use each and everything. dressed to the tee everyday (without fail).
now, we are happy for her to get a bath and get watered.
oh how priorities change.

well, i am done rambling but i do want to do a shout out to a couple of people here in Greensboro that have been a great help to me on this end.
donnie- thats for getting the mail- i live in a small community that mom thinks is soooooo far out.
you get the mail for me and anything else i need with just one phone call.
kathy & gail- your help and advise on the legal stuff has been a blessing. i am truly a novice at this.
Bill Benjamin- thanks for all of your legal advise.
Barbara & Al- thanks for caring for my mom, she is blessed to count you as friends
donnie & wanda for cleaning at moms. it helped out bunches.
thanks to all that have sent sheets and ensure to mom. every little bit helps

again, i say thanks from robin and I to everyone. we have been blessed to know each of you. you have also been able to fill in the blanks about mom that she never would have.

thanks again

wendy neese
The other one

Morphine Mommy

We are back in the hospital today. Mom started the pain/throw up thing again around 4:30 yesterday afternoon. We went back through the ER and Mom has a small bowel blockage. They didn't see the when we were there Tuesday Night on the initial read of the X-Rays, but the radiologist reviewed them later in the day. Mom had another set of X-Rays last night and they confirm the blockage. We ended up in the Observation Unit last night. I just ran home to take a shower. We are going to try and see if we can have Hospice do the intake today while we are here so we have some options when Mom comes home. Mom will come home if she is able to keep down fluids/tolerate some type of diet and we can keep her pain and nausea under control. I don't have a feel for what this day will bring.

I don't understand how we got here this quick. We were just released by George last Wednesday. Will everything just slow down please.

Thanks Cindy for your trip to the ER last night. Mom and I were so glad to see you. [Cindy my other minister.]

Will post again when I get a chance.

2 + 2 + 2 + 2 = Good Stuff

We are just back from a trip to the ER last night. Mom was having problems controlling her pain and was also throwing up. About 2:00 AM, we headed to Wake Med Cary. We went through the ER pretty quickly. The last time we did an ER visit, Mom ended up sleeping for about 3 days from the morphine. We tried this in 2 mg increments until she felt better plus some Zofram to start off for the nausea. [Mom actually ended up getting 8 mg of morphine over about 3 hours and was still alert on the drive home. The last visit, Mom had a 10 mg bolus that knocked her completely out. Now we know a new way to ask for this.] Mom finally got comfortable about 5:30 AM. They did a couple of X-Rays to check for blockages. (Unfortunately, this is a real issue with where and what Mom's cancer is doing.) All clear there, they ran a bag of fluid in during the wait and we left about 7:15 AM. [Dr gave a us choice to stay or go. We have an appointment with Jason this morning. We decided to come home and then go to our Dr Appt on schedule. I may call when they get in the office to see if we can come earlier.]

We are going to try and get the hospice assessment started this afternoon or as soon as possible. The goal of hospice is to keep us out of the ER during a pain crisis if it can be managed by the nurse/attending. Just knowing we have someone to call during this makes a big difference. I am always in a major panic when this is going on even though you think I should have the routine down by now.

Will let you know how the Dr's Appt goes today.

Yellow

I got up early this morning to work on a server at the office. I made it back home about 7:15AM and Mom started moving around. She had a toaster strudel for breakfast and hung out on the couch for a while. I ran out quickly to get a ceiling fan and to pick up the forms for tomorrow. Will drop them off in the morning so we are okay getting there just a couple of minutes before our appointment.

Got Mom settled and the fluids going and started to install the ceiling fan. [We have an older house.] I got afraid of the wiring and called a friend of ours to do it.. 2 hours later + a trip to the Home Depot, Mom has a wonderful ceiling fan. Thanks bunches James. We are one step closer to making Mom's room here look like her room in Greensboro.

I called to see if they could deliver the bed today and they said sure, but would be after 5:00 PM. Mom had some lunch and then Ron got here. He brought wonderful soft yellow sheets for Mom's new bed. [Ron - Mom is using them tonight. She curled up and went right off to sleep.] He also brought some really nice smelling bath stuff and a towel set. Mom and I are trying to figure out how to use this. [Realize now, that every time Mom takes a bath, it takes about a day of telling her that she stinks before I can get her wet. It is a serious production with saran wrap over Mom's port access, warm blankets on standby in the dryer, and some bossing around.]

It was really good to see him and they both had time to visit. I am always amazed at who knows Mom. They spent a good 45 minutes trying to figure out who knew who. He also gave me a great suggestion on how to paint Mom's room.

Richard came over for PT about 2 and Ron left after he met him. About 4:00 PM, Mom and I took a nap. [This is starting to be a regular occurrence. While we were napping, Judy dropped off some Zucchini Bread. How good is that. We woke up and there was more food.] I woke up about 5:00 PM, called about the bed and we started moving stuff. Mom woke up about 6:30, we had the Taco Bake from Mary Ellen and Ed (Thanks again guys.) She hung out in the big bed for a while and we set up the new bed (I borrowed Zach's big muscles) and got it ready. After we got it situated, Mom jumped in and went to sleep.

All in all, it was a good day. Mom didn't have a great deal of pain, Ron came to visit, we are closer to having Mom's room where she feels comfortable and we have Zucchini bread for breakfast.

Last thing - Thanks Barbara for checking on Mom.

Monday, Monday

We are up and moving around this morning. Mom is going to take it easy this morning because RON is coming up from Charlotte to visit today. We are very excited. I added a couple of notes to last night's post to clarify the dates.

If you come and see Mom, give us a heads up so we can plan the day. Not that we will take a bath or anything, but it just helps us to not do a ton of stuff before you get here so Mom will be able to enjoy the visit. Take it from me, a Sleepy Mommy is a Cranky Mommy, a Hungry Mommy is a Cranky Mommy and a Dry (Before she gets fluids) Mommy is a Cranky Mommy.. (I guess you get the picture.. You can just fill in the blank... A ______ Mommy is a Cranky Mommy.)

Survivor Sunday

Today was Survivor Sunday at church. Mom and I planned to go last night. I got up and went to work for a little while and when I got home around 7A, Mom was up and having some pain. She ended up taking a couple of her breakthru meds this morning and moving to my bed before she could get this controlled. I know that I made eggs and french toast this morning and Mom ate, but I can't remember if this was before or after the pain crisis this morning.

Mom moved to the couch. She is having a hard time getting comfortable right now. We did some things at the house this morning and Stan and I ran out for breakfast to spend a couple of minutes together. (Zach stayed w/Mom. At this point, she was sleeping and comfortable).

Around 2:00 PM, the house was crazy. Wendy was coming up today, but when I opened the door, Joanna, one of her friends had stopped by on her way back to Wilmington. It was a really nice surprise for Mom. Wendy got here and then Ed stopped by to drop off something for dinner. Thanks to Mary Ellen and Ed for the wonderful Taco Bake. This has been mainly an ensure and cookies day but we are excited about eating this on Monday. Mom had another pain pill this afternoon. Also during this time, she had some fluids.

Mom visited w/Wendy and we talked about some stuff. We are doing some more moving at my house. The plan is to move Mom in Marissa's room, move Marissa into Zach's room and keep Zach in the play room for now. The plan is to make it look as much like Mom's room at home as possible. Wendy is going to her house to pick up some stuff Tuesday(Mom gave us a list) and we went out and bought a full bed today to give Mom more room (her king bed will not fit in the room. Also, I need to be able to change the sheets here at least every day or so. A full size bed is a compromise which should give Mom enough room but let me do the things we need to do). We have been moving mattresses around trying to find something comfortable for Mom and this ended up being the solution. We have 3 twin beds in our house and they just aren't large enough for Mom to curl up comfortably.

I am going to paint this room the same yellow as Mom's as soon as Wendy brings the curtains (Mom matched the paint to a particular shade on the curtains.) We are going to put the same bedspread and stuff and a picture to start out with. I will put a ceiling fan up Monday.

We haven't made a decision on which hospice we will use yet. Will do in the next couple of days. We have a Dr's appt on Tuesday (This Dr is located around the corner from my house in Fuquay. We need to have a GP/Attending for hospice. This way, if Mom gets a cold, she will have a Dr here that has already seen her and is familiar with her.) and will see if he has any input on which hospice.

Tentatively, our plan is for Wendy to come back to Fuquay on Saturday (4/19) and Mom and I to come back to Greensboro the following weekend (4/25-4/26). We will firm this up more during the week. There is some larger stuff that we need to pick up and some stuff that Mom wants at the house. Please try and come by and see Mom if you are healthy. (No colds or yuckies please.)

I do want to add a couple of things to a wish list for Mom. Just call Wendy and she will get this stuff to Mom if you happen to have it around the house.

1. Ensure Plus Homemade Vanilla in the cans.
2. Full size sheets. [These don't need to match and just need to be soft. I change Mom's bed every other day and having a couple of spare sets of sheets would be really helpful. Don't go buy any but if you have a set that you aren't using, that would be wonderful].

After the post last night, James brought soup and a card for Zach that was really wonderful. Mom tried some of this today for lunch, but cookies won out today. When Mom feels bad, I feed her whatever she wants.

We also cut Mom's fingernails. This was not as hard as I thought it would be. I bite mine, so I had to go get "Nail Stuff". The worse part of this was cutting them short. If you know my Mom, you know that she has always had the most beautiful nails. Cutting them down made me want to cry for a couple of reasons: 1. She let me do it and kept telling me what a good job I was doing 2. I have never seen my Mom's nails this short as long as I can remember.

We have a busy couple of days Monday/Tuesday. I am going to take a couple more days of vacation and I hope when we get Mom in her room, things will settle and I can work some more from home.