Hanging in There

I know I haven't posted in a week, sorry.  Things really haven't changed that much.

We've spent much of the past week just hanging out.  Pete has been helping out with Mom during the days, especially went Kathy went back to Santa Fe for a couple of days, and I've been over in the afternoons and evenings.  Work has been slow, what with it being the first week of school and all, so I've actually gotten off at lunchtime two different days this week!

Mom has a health care aide who comes over 2-3 times a week to help her bathe, plus when Cissy is here, Kathy and Peter/I/Granny/Dad change the bedding.  The nurse comes out 2 times a week too, to check on the ostomy bags and IV's and stuff.  We are checking on more antibiotics for the infection which seems to be becoming chronic.

Like I sais last time, we are just adjusting to this new normal. 

Mom is sleeping a little more each day.  Hospice told us that is what should be happening.  They did lower some of her meds just a little, because she is developing twitches from being on such high doses for a prolonged period of time.  They also added a medication to help her sleep a little better, and it definitely does.  It also makes her just a little loopy. 

We really shouldn't be laughing at her, but she has said stuff about giving the dog a cell phone, having conversations with the air, asking if we need to text people when someone comes out of the bathroom, stuff like that.  I felt a bit bad about laughing, but then I noticed my dad was laughing so hard that his shoulders were shaking.  So, I guess we are just going to laugh.  Not to be mean or anything, but seriously, some of this is hilarious.

I'm still noticing her go downhill just a little bit each day.  She is mumbling in her sleep, like she is having conversations with someone.  I remember Auntie doing that shortly before she passed away, so it always is slightly unnerving.  Mom is only the 2nd person that I have really sat and watched this happen with, so in my very limited experience, I'm just comparing the two situations in my head.

Mom told Kathy last night that she wants to get her friends together to let them divide her stamping and craft stuff among them.  I don't think I'm really ready for that.  I mean, it will never be easy, but I just am not ready to watch her stuff disappear out of the house yet.  She's already talked to us kids about what she wants each of us to have, but we all 3 firmly refuse to take anything for now.  For Pete's sake, she's still here!  To me, and to all 3 of us kids, it feels very disrespectful to start that stuff now.  There will be plenty of time to divide stuff up later.

Being caught up in all this, we kinda get tunnel vision.  I will occasionally almost forget that there is an end in sight here, or that there is even a world going on outside.  Pete and I went to dinner a few nights ago, and it is just so odd to be in public with people laughing, and talking, and going on about their daily lives.  I think I wrote about this before, but one night we went to one of my favorite restaurants, and happened to be seated next to the only group in the whole place celebrating a birthday - their Mom's.  We were nearly finished by the time they were singing happy birthday, but I still had my tostada in my hand, and when they started singing "happy birthday MOM" I think I just dropped my food and walked out.  Hopefully it won't be like this forever.

I got to have the most LOVELY conversation (insert sarcasm here) with my grandmother the other day.  She told me that I have been selfish to not have kids yet, that I was denying my Mom her dream of being a grandmother, and now she is dying.  I understand that she is grieving, we all are.  I kindly explained to her that EVERYONE, grandparents included, encouraged us to NOT have kids till we were completely finished with school, which JUST HAPPENED.  Plus, if God wanted us to have kids right now, we would, birth control or no.  I then went on to explain that if I were to get pregnant right now, it would be very unhealthy, as I'm forgetting to eat and drink, and having to be reminded to do so.  I couldn't even fathom it.  I feel like if I got pregnant now, I would be doing my child a HUGE disservice, becuase I couldn't be totally focused.  Honestly, with all this going on, I wouldn't be surprised if I ended up miscarrying just because of all the stress.  Yeah, that's one conversation I NEVER want to have again.  Next time, my response will be something like "We've already discussed this."

Pray that we don't all start losing our tempers with each other.  Everyone is starting to get short fuses.  We've had LOTS of family time, LOTS.  ALL of the grandparents are forgetting to put in, or turn on, or turn up, their hearing aids.  We're getting lots of "Huh?" "What?" "What'd you say?" shouted at us, even when Mom is trying to sleep.  Usually we can kinda laugh it off, but it's getting REALLY old, REALLY fast.

Please continue to pray for us.  Thankfully we are having some definite moments we can laugh at, but we are all starting to hit the breaking point.

A New Normal, For Now

Mom seems to be doing well.

I got in trouble for stealing her blow dryer...but to be fair, I had to! I left mine at the hospital when I took it up there for her last week. I now have mine back, but kinda forgot to return hers...whoops!

When I am getting fussed at for stealing her blow dryer, I know she is feeling better. :-)

The oncologist told Mom that he wants to see her in his office in a couple of weeks. So I'm guessing this maybe changes our prognosis back to the 3-6 months we were given about 2 weeks ago? I'm certainly not arguing the extra time we are getting!

Zoe was SOOO happy to have Mom home. Pete helped to move her back home. He said the dog was excited, but as soon as they got Mom in the house, she just curled up and went to sleep. I think we all expected to see Miss Pup just go ballistic. Dogs are pretty smart, though, and I think she can tell that something isn't right. After all, Mom is laying/reclining in a hospital bed in the middle of the living room. Not the normal status quo for their house.

I decided to go back to work. There isn't really much for me to do at their house. Pete and I (but mostly Pete) have been working on cleaning our house today. Since he doesn't have a job right now, it's kinda important that I work enough to keep some money coming in. Bills don't stop just because your mom is sick. My office has been really good to me. They let me come back Tuesday, and just do a half-day. My plan was to do half-days this week, but one of the other doctors' daughter got sick, and since Mom is doing well, I volunteered to go on and just work my normal days. It's really been nice. They've kept me busy, but not swamped. I only felt just a little overwhelmed the first day. So I've really only missed one and a half days more than we originally planned, since I was already scheduled to be off the whole week of Disney.

I guess for now, we are just adjusting to our new version of normal.

Oh, I am also supposed to tell everyone that Mom wants visitors. Now that she is settled in at home, she wants people to continue to come by. For those who don't know where they live, send me an email (nbranca@charter.net) and I will let you know.

Continue to pray for us, as we begin to adjust our lives to this pattern.

Moving Again

Apparently, you CAN do too well.

The hospice in the hospital is kicking us out! Mom is doing really well right now. They basically told her that since she is not critical, she has to go home.

We have set up all the hospice stuff for the house. Well, we didn't, VITAS did. Dad moved a loveseat out of the living room so we can put the hospital bed in its place. We have an IV pole, a wheelchair, a hospital bed with air mattress, oxygen tanks, all the stuff you normally find in a hospital...in the house...which is odd.

The doctor did end up putting Mom on an antibiotic for the infection. I spoke with him on Sunday and was pretty insistent on it. He didn't seem to have an issue with it, other than the fact that she had already been on one for several days. My basic response was, "well, that one obviously wasn't working, so lets try one that will work." The nurse today said the culture came back saying it was yeast, not bacteria. I've never seen a yeast infection act like that, but I've also never seen one anywhere other than the usual places, and this is most definitely an UNusual place for one! She was going to double-check that though.

Mom is actually pretty happy to be moving home. She can still have visitors (though we are discouraging them for moving day) without disturbing the rest of the floor. Let me tell you, our bunch can get pretty noisy! She also gets her puppy back! Zoe will be SOOOO happy to have Mom home. We are a little concerned about how she will be since she basically has only seen Mom for about 2 hours in the past 2 weeks. But Dad seems to think that she will be hyper for a few minutes, then just curl up with her mommy.

They did increase Mom's dosage of pain meds. She was pushing the button a little more frequently than they necessarily would have liked, but no where NEAR the max she is allowed to. So we will be monitoring that closely.

We can move back to the hospice unit once she begins to get critical. When we can no longer manage her at home, we will just call VITAS and they will transport her back.

We know that this is a temporary thing. We are well aware that, without a major miracle, this is going to end with Mom dying. However, I believe in a God who works MAJOR MIRACLES. I believe that, if He chooses, Mom will get better or be healed. I also believe that sometimes the best healing is to be removed from this earth, and be reunited later. God knows best. I might not always agree with His methods, but I can't argue with the end result.

Continue to pray for us. I am seeing a change in my brother that I never thought I would see. He is becoming more interested in the things of God, something he hasn't been terribly interested in for nearly 10 years. He is a Christian, but has made a few slip ups. As have all of us. Pray that he continues to journey more along the road God has chosen for him, rather than his own road. Pray that we will continue to be able to enjoy this time with Mom, and that she will be able to have her pain adequately controlled. Pray that, if it be His will, she will be healed, and if that is not His will, that she will be comfortable. Pray for healing for us, because there is not much of a faster way to a broken heart than by watching your mom slowly die.

As always, we appreciate your prayers.

This is the Scary Part

Mom got moved today.

We moved from the palliative care unit to hospice. We knew this was coming.

I wish we could have stayed at palliative care, but there is a time limit on how long you may stay. At palliative care, she could still get IV antibiotics, pain meds, etc. Currently, at hospice, she is only getting IV pain meds, and they are actually bending the rules so she can have them. We explained to them that as she is unable to absorb almost anything taken orally, including food, that the oral pain meds would be insufficient and therefore negate what hospice is there for.

We are nervous about this.

Mom dehydrates so quickly once her IV's are gone. She did fine with removing her "milkshake" IV (the nutrition) and actually ate about 1/4 of her soup for lunch. She asked for grilled cheese for dinner, so Dad and I picked it up from Panera's, along with some baked potato soup. I guess I'll find out in the morning how it went.

She has an infection at the moment, in the area where the surgeon repaired her perforation last Saturday (oh my Lord, has it really only been a week?). When he removed her drain in that area yesterday, there was all sorts of lovely stuff coming out. I know most people reading this aren't medically oriented, so I'll just say it was really gross. I have helped the nurses to clean it several times over the past 2 days, and more gunk keeps leaking out. That's the medical term for it. :-)

I'm concerned about this infection. I know that people who die from this cancer die from the complications, such as not being able to absorb the nutrients from food, or their small intestine closing off, etc. I can accept that, in theory. However, I absolutely REFUSE to accept my mother dying from a perfectly treatable infection. I am aware that hospice has to play by certain rules. But I feel that treating infections should be part of their job. It is certainly part of mine.

We really only have to wait till tomorrow for the hospice Dr to look at it and make a decision, it just feels like so long. I am also slightly irritated that the oncologist we have been using who is in charge of this hospice unit will not be here for the next week or so. He was why we picked this unit. I know he needs a vacation too, believe me I get it. It would just be really nice to have continuity of care rather than ANOTHER new doctor.

I guess the longer this goes on, the more stress I am feeling and the shorter my fuse gets. I suppose it's normal, whatever normal is at this point.

Pray that our fears will be alleviated. Pray that Mom won't be in pain. Pray that this infection clears up. Pray that we can make it.

My dad says the most appropriate things. This one he has said before, but he repeated it tonight, and it is exceptionally appropriate. God knows how much we can handle, which proves He knows me better than I do.

Moving

It looks like we are moving tomorrow.



Not Pete and I, but Mom. Tomorrow we will be moving to hospice.



The palliative care unit has been very kind to us. Mom has had TONS of visitors, and they have been very patient with us. Besides just our family (of 10) we have had over 100 visitors in the past 3 days.



So many people love my mom. It is so obvious how much she has influenced people throughout her life. We have had friends from Mom's childhood, friends from church, friends from the neighborhood, friends from the past 30 years. It has truly been a blessing.



This has been the best, but most difficult thing to go through. Mom is getting a chance to say goodbye to everyone. We are getting a chance to tell her how much we love her.


If you have ever heard the song "Thank You for Giving to the Lord," you know that the end of the song talks about people lining up for miles to tell how much the person means to them. I know that once she gets to heaven, she will have that line. We are being blessed by getting to witness a little bit of that here.

The next step is that they will remove Mom's feeding tube. She has been getting liquid nutrition through a port for the last few days. She is getting to move to a full liquid diet, which means she can eat strawberry sherbet, and she is excited about that! We know, and she knows, that she still won't be absorbing the nutrition, and her body is continuing to shut down. But at least she is comfortable.

The hospice place is at least close to where we currently are. It is at the hospital we normally have been at up to this point. Different area, but the same hospital. It is also run by the oncologist who has been Mom's doctor through all of the illness. So we are pleased with the continuity of care.

I know that this seems random and jumpy. Please bear with me. My head is all over the place. I can't really keep a thought in my head for more than a couple of minutes, or even follow a train of thought. Continue to keep us in your prayers. We will make it, it's just REALLY stressful.