Category: Mom’s health chronicles

Aug. 26: Here’s an update straight from Dennis Drive.  Mom’s sleeping on the couch, and Andrew is not sleeping from his crib up in Joe’s room.  Hmm.  We’ll have to see if we can’t fix that.  The little guy needs a nap!
I titled this post “down days” because Mom has been sleeping a tremendous amount the last few days.  I think she might be taking a lesson from Liberty, the family cat, about good sleep habits.  Sleep 22 hours, wake for two.  Mom has had some perkier moments, but in general, even when she’s awake, she’s been pretty weary and hasn’t been “clicking” mentally as well as normal.  That’s pretty frustrating for her.
She’s doing alright.  Taking lots of pain meds and sleeping lots. Not much to report beyond that.  We’re all concerned about her, but she’s pretty comfortable, and I think we’re doing everything that can be done to help her right now.
I continue to be paged from the young one upstairs.  Signing off for now…

Aug. 24: We’re now one week past last Friday-which-was-so-hard.  Mom had a really quiet and sleep-filled day today.  She was feeling better…the pain she was experiencing yesterday stopped in the evening, and she slept long and pretty well through the night.
I took Andrew into Karen’s today and worked until around 11 am at Gathering Waters.  Then I went over to Mom’s in time for her 11:30 appointment with her Hospice nurse, Jenny.  Hospice has already proven themselves a really valuable partner.  Twice now, they have been able to do lab tests in our home that Mom would otherwise have had to go into the clinic for.  Jenny will come by once or twice a week to check on Mom, to review her symptoms and make sure that we’re using the best treatments, and to bring us things to make life easier.  Her next visit is on Tuesday.

After her nurse left, Mom slept for a couple hours while I made a bunch of calls about health insurance.  Mom was in good spirits, and she ate a pretty big lunch.  She was also just really worn out, and I think that a quiet day with very little activity was just what the doctor ordered.  I left to pick up Andrew at 3:45, and Mom had just headed up to bed for a longer rest.  She wasn’t taking any medications today, so it seems like she’s feeling somewhat better.

Maretta’s friend Laurie was in town today, so she had the chance to get out and spend the afternoon with her.  Maretta has been doing just a wonderful job helping Mom, but I think she really needed a day away too.  She will be in town for about another week before she plans to return to St. Kate’s.  We heard from Joe that he and his friends made it to New York to pick up Joe’s roommate.  They should be having a nice time together.

I may end up not seeing Mom tomorrow, depending on how things go.  Could just take the day and spend it with my boys here at home.  I hear that our rainy, rainy days are supposed to end in sunshine tomorrow.  It would be fun to spend some time outdoors again.

If there is anything notable, I’ll be sure to post it, but I may back off from daily posts in the upcoming days.  Perhaps it’s the little one growing in me, or maybe it’s just that our days are so full, but I’m pretty tired in the evenings!

Feel free to email me if you have questions.
~Althea

Aug. 23: Today was a really big day.  Mom’s friend Christy came down from Wausau for a visit this afternoon.  Then around 4 pm, Joe and his friends Lindsey and Leah left for their trip back to Bowdoin.  It was kind of hard to say goodbye, but they’re off for a nice adventure.
Mom was alright today.  She barely napped at all though the afternoon.  Toward the end of the afternoon, she developed a “stitch” in her side that seemed to cause her quite a bit of discomfort.  I’m hoping that the pain meds that she took just before I left will help her sleep well.
Pictures of the day are in the gallery.
To help me keep track of Mom’s schedule while I’m at work and home, I put together an online calendar for her.  You’re welcome to bookmark it too.

Aug 22: Seems like Mom had a pretty good day today.  Seems like she’s been pretty steady for the last four or five days.  I stayed at work until around 1 pm today and came over to Mom’s after that.  This morning she had a visit from the priest at St. Peter’s Church.  Joe’s friends arrived in Madison from their cross-country road trip and had a nice visit with Mom around lunch time.  When I arrived, Mom was napping.  But all afternoon, she was doing her old-fashioned napping where she interjects comments into the conversations going on around her during her naps.  [It’s been weird to see her sleep so soundly these past weeks that she isn’t aware of what is going on in the room around her.  Usually while she’s napping you can ask her a question and get a quick response.]

Mom’s dear childhood friend Mary Read drove up from Chicago for a visit with Mom today.  Mary’s daughter is getting married next Saturday, so they had a nice time talking through wedding details and admiring the flower girl’s lovely dress.  Mom took a nice, long nap mid-visit, and Mary joined her from the chair nearby.  Meanwhile, I did a coarse sort of all the papers on the kitchen counter.  Shuffling and organizing papers is one of the things I do best:)
Mom requested a pizza from Roman Candle tonight.  She got the saltiest pizza she could find, with feta cheese, carmelized onions, and Kalamata olives.  Mom’s been really into salty foods these days, and I think that she and I have eaten nearly a full, big jar of olives in the last several days.
Joe is leaving for college tomorrow afternoon, but I think that’s the extent of the activity she has going on.  Her Hospice nurse is coming by on Friday for a weekly check-in.  I’m hoping for a few more days as nice as the last ones have been.
That’s the update from me!
~Althea

Aug. 21: When I left Mom this afternoon, she was sitting on the couch, visiting with her friend Nancy, and pouring over knitting projects.  Nancy and her daughter Katie came down from the Twin Cities to visit with Mom today.  I think they had a really nice time being together, and Mom seemed as perky and able to connect and carry on conversations as I’ve seen her in the last several days.  Katie is getting married in January, and they had fun talking about those wedding plans.  Mom and Nancy met when I was about one.  Katie and I are the same age, and so Mom and Nancy have been friends for nearly 30 years.  Time flies when you’re having fun:)
Photos of their visit and other pictures of Andrew and our family are in the gallery.
Earlier in the morning, Mom’s Hospice nurse and social worker came over for an introductory visit.  They seemed like very nice people, and the visit was good.  They brought up a lot of pretty difficult topics, so the conversations weren’t always easy ones.  However, I feel lucky that we can get some guidance and support from them as we move forward.

I talked more with Joe and Maretta today about the big decisions they are making.  Maretta is planning on returning to St. Paul next week for the fall semester.  She’s thinking a lot about her wedding.  Mom has been really sad that her health is affecting Maretta’s ability to have a completely happy, fairytale wedding.  And it makes Maretta sad that Mom is sad about her wedding.  Kind of a crazy circle…  Maretta and I were discussing the idea of having a small ceremony in the next couple months followed by a reception/party at a later date. These are some hard choices to make…
Joe is really on the fence about returning to school for the semester.  He’s talked to his dean, and in looking at his major, he doesn’t need to take classes this semester in order to graduate on time.  But Bowdoin is a wonderful place, and a big part of him would like to be there.  Joe’s friends are coming into town tomorrow to pick him up to drive him to Maine.  So he has some continued intense decision making to do in the next day.
I mention all this because as much as my mom needs everyone’s support, I feel like the kids do too.  So please keep them in your thoughts.
No major appointments are scheduled for tomorrow.  I’ll keep an update:)
~Althea

Aug. 20: Another end-of day update…  I went into work at Gathering Waters for an hour this morning and then headed over to Mom’s house for the day.  She had a doctor’s appointment at 11:30 with Dr. Allen, the doctor who did some of her past scopes when she had internal bleeding.  We were hoping to get some advice from him on how to proceed with a couple treatment options.  Mom slept pretty well last night.  She took a shower this morning, but it wiped her out so completely, it was pretty hard for her to get ready for her appointment.  We ended up calling her doctor instead and talking to him through speaker phone.  He reiterated the sentiment that trying to lessen the block in Mom’s portal vein with blood thinner is not a good idea.  We talked more about the idea of trying a “Denver Shunt” to keep the fluid (the ascites) that builds up in her abdomen in her body instead of draining through the catheter she has in her belly.  Dr. Allen felt that the main advantage of applying a Denver Shunt is that you don’t lose so much albumin (protein) from the body.  Mom’s blood pressure was really low today…it’s often very low…and a lack of albumin probably adds to her feeling dizzy and tipsy and less sharp.  Dr. Allen put in an order for some blood tests that the hospice nurses can draw at home tomorrow.  From there, they’ll see if she is low on albumin, and if she is, she can get transfusions for that.  Perhaps it will be a small help to her.

After that excitement, Mom was totally exhausted and crashed in her bed for a few hours.  Joe, Maretta, and I talked for a while, and then Maretta and I went our and ran some errands.  The kids are both in the midst of making really hard decisions about going back to school for the semester.  Maretta is also struggling a lot about whether and how to change her wedding plans (currently scheduled for May 24).  These are such tough choices, and it is so very hard to know what the best decisions are.  They are both excellent students, and taking off a semester wouldn’t stop either from graduating.  There are some really serious pros and cons to either decision, and I wish I could make things easier for them.
Tomorrow morning we are meeting with some of Mom’s new team of hospice nurses.  Already I am so glad we can use their services.  Instead of exhausting Mom beyond belief to go in to the lab to get her blood drawn, someone can come to our house and do it here.  I also got a call tonight from Mom’s dear friend Nancy from the Twin Cities.  She called from the road…saying that she was on her way down to visit because she really needed to see Mom.  While in general, Mom is really much too weak and tired for visitors, it feels good to see the strong the bonds she has with people as they pulled tightly during this difficult time.
If you’ve emailed me in the last few days in response to all that is going on with Mom’s health, thank you!  I check my email regularly, and I’ve been reporting to Mom who I’m hearing from.  However, I haven’t gotten my act together to reply to any of the notes yet.  All the notes feel like little hugs, and I’ve
been getting a steady dose.  Thank you.

Aug. 19:  I’m going to make this a quick post since I’m really exhausted and Bryan has made it clear that I should get off the computer in the next five minutes and go to bed:)
I stopped by for a visit with Mom for a few hours this afternoon.  Maretta was back home after being in Spring Green at American Players Theater for the past day or so.  Mom seemed to be in a similar place as she was yesterday, which is alright, but certainly not good.  She came to the table to eat a yummy lunch provided by Heather and Michael as they visited her from Michigan.
I feel like today was sort of a downer for me.  Friday was terrible, Saturday was better, and today things are sinking in more.  I’m feeling a little like waking up and exhausted to find ourselves in this same, very sad and discouraging place.
Maretta and Joe are both trying to decide what to do about returning to school this semester.  Joe has intended to leave on Wednesday, but it’s a terribly difficult decision to make.  I have so much worry and concern and love for Joe and Maretta and Michael and my dad, and it’s clear that as time goes on things may get harder rather than easier.  Hard to know, but I just wish I could spare them all some of the hurt they are feeling.
Mom has a doctor’s appointment scheduled tomorrow along with our first visit from the Hospice nurse.  I am going to take off work to spend the day with Mom.
Oops…Bryan’s coming to get me!  Good night.

Aug. 18: No major news to report today…  Bryan and Andrew and I came over to Mom’s this morning.  Mom has been feeling about the same as yesterday, but maybe a little better.  She didn’t have to take drugs until later this afternoon, so she’s been more mentally present than the last couple days.

Mom’s brother Peter and his wife Marci came over for a visit this afternoon along with Mom’s mother (Mum).  Peter and Marci live in Iowa and are up visiting Mum for the weekend.  I don’t think that Mum has seen Mom for well over a month, so it was nice that they could see each other.

Since their visit, Mom has been doing a lot of napping.  Andrew took a shorter-than-normal nap, so this afternoon we decided to have him watch his first ever full-length animated movie…the Lion King.  Surprisingly, he watched the entire movie.  At the end, he surprised us even more by really wanting to watch it again.  My mom said, “Why not, it’s kind of a Templeton Day.”  Templeton was the rat in Charlotte’s Web.  He liked to go to the county fair and pig out all day.  So our Templeton day has included watching both the Lion King and Aladdin.  Andrew is turning into a pile of mush.  Mom, Joe, Becky, Bryan, Andrew, and I are all hanging out.  Becky’s mom made us a big plate of lasagna, so that’s about to come out of the oven.  Mmmm.  I love lasagna.

Aug. 17: I asked Mom today how she was feeling and if she was scared or if she had things she wanted to talk about.  But conversing has been hard for her these last few days.  So it was with a sense of awe and tremendous love in my heart that I listened as she said, “You know, there’s a poem by Robert Lewis Stevenson…”  And then she went on to recite the following poem with such simplicity and longing that it just broke my heart.  But it also gave me a feeling of peace.  So it’s with a hope that you might experience the same that I share it with you.

Bed in Summer

 

In winter I get up at night
And dress by yellow candle-light.
In summer quite the other way,
I have to go to bed by day.

I have to go to bed and see
The birds still hopping on the tree,
Or hear the grown-up people’s feet
Still going past me in the street.

And does it not seem hard to you,
When all the sky is clear and blue,
And I should like so much to play,
To have to go to bed by day?

Aug. 17: I have a difficult post to write tonight, and part of the reason is that I’m really just not sure how to frame the situation with Mom’s health right now.  Another reason is that I know that I’m seeing the situation through my own particular perspective.  But since the only way I can tell the story is as I see it, that’s what I’m going to do.

Since we visited Mayo clinic three weeks ago, Mom’s health hasn’t improved at all. She’s been very week and extremely fatigued.  While she went out a few times (including a little outing with Dad last Sunday for their 35th wedding anniversary), she has rarely left the house.  A few days ago, Mom was in quite a bit of pain, was unable to sleep, and couldn’t keep food down.  Since then not only is she sleeping much more and is very groggy, but she has also become increasingly disconnected from the people or conversations going on around her.  She answers questions, but she loses her train of thought pretty quickly.  It’s been a weird shift over the last week, and it’s really disconcerting and hard for us kids to start to feel like Mom is somewhat just not there.  I almost feel like she is becoming unzippered from her active mind and self.

I had talked to Mom on the phone but hadn’t seen her since last Saturday, and it was pretty hard to see the condition Mom was in today.  Dad and Joe took Mom to see her oncologist yesterday afternoon.  Dr. Frontiera encouraged Mom to not hold off on taking anti-nausea and pain meds.  While the one mass (the Sister Joseph’s Nodule) was determined not to be cancer, they still strongly believe that the mass that is blocking the vein that drains the liver is metastatic pancreatic cancer.  Further, they believe that the symptoms that Mom is experiencing are consistent with pancreatic cancer.  And beyond treating the symptoms, there is really nothing they can do to help her.  It really sucks.

Along with making sure Mom had the best medications for her current situation, Dr. Frontiera also gave Mom a referral for hospice.

I know that this probably seems like a pretty big jump from the situation we’ve been addressing the last couple months.  I’ve been thinking of it as a changing of gears.  We’ve looking into all possible treatment options.  We’ve researched and asked and pushed, and the answer we are getting is just a sad, relatively unacceptable answer.

But even so, we have this reality in which we’re living, and I think all of us want to address the situation with as much honesty and grace as possible.  At least, that’s what I tell myself.

So this afternoon, two nurses from hospice came over to our house and explained the many services they can offer.  They talked about ways they can help keep Mom as comfortable as possible and support us all through this difficult time.  We all sat in the living room, and Mom was awake and able to respond to all their questions.

After burying Duncan this afternoon (our dog died this morning too…see this post for more info), Dad and Joe and I went out for dinner, leaving Mom home alone.  When we came home, Mom was in the kitchen making pasta.  I was really happy to see her up and making herself food and wanting to eat food.  I would say that it is completely possible that Mom will improve in the upcoming days and have a much better set of days in the future.  I just don’t know that for sure, and at this point, I wanted to be really honest about the fact that we’re talking about hoping she gets to be feeling better for a while rather than getting better altogether.

I hate to have to share this, and I’m sorry to be the bearer of such unwanted news.  I’m sure that many people are going to be interested in getting in touch with Mom or knowing what they can do.  Unfortunately, Mom’s been so fatigued these past days, that visitors and phone calls are really pretty hard for her.  She sat up and read the mail this afternoon, so letters are good, and we are planning to log into her email (margotbabler@gmail.com) and print or read her messages to her.

You can also contact me if you have questions or just would like to talk.
And so ends the day.
~Althea