Month: August 2007

Aug. 28:  1:30 pm.  I had a very nice, quiet morning with Mom.  I came in to the Hospice Center at about 8:15 this morning.  Dad had left just a few minutes before with Michael.  From the notes Dad left, it looks like Mom had a relatively restful night, punctuated by a few episodes of anxiety or restlessness.  When I arrived, she was sleeping peacefully.  I opened the windows and the doors and let the sunlight and morning breeze spill into the room.  I sat on the bed with Mom and told her about the beautiful morning.  I curled up with her and talked to her and sang her songs she likes.  She hasn’t eaten or drank anything as far as I can tell for the last 24 hours, and she didn’t respond at all to me, but it felt really nice to be able to hold her and stroke her hair and to tell her how I feel and that she can go when she’s ready.

A bit later in the morning, Mom’s brother Peter, and his wife Marci came by to visit.  They were followed by Michael and Terry.  I got on Mom’s gmail account to get emails that I can read to her.  Then Terry and Michael and I sat out on the beautiful private patio outside Mom’s room.

A doctor came in to check out Mom, but she wasn’t interested in being touched, so he just made sure she wasn’t wanting medication or anything and then we talked for a while.  He said that one thing that is probably happening to Mom is that her liver is breaking down from the cancer.  That means that her body isn’t able to filter the toxins from her blood system, and she’s getting a buildup of ammonia and other non-healthy chemicals in her body.  The physical effects of this match what Mom is experiencing…exhaustion/fatigue, irritability to communicate, anxiety, etc.

Apart from a couple startling moments when she got up to go to the bathroom, Mom’s been resting pretty quietly today.  She hasn’t wanted, but we have been encouraging occasional use of an anti-anxiety medication, but her alertness and responsiveness doesn’t change at all even when she is off all medications.

I posted some photos of Mom and of her room on the website.

Aug. 28:  7 am.  It’s been almost 18 hours since I was last personally tending to Mom.  After going home at 1 pm yesterday to nap, I ended up staying home for the rest of the evening.  I was on speaker phone while nurses were there a couple times.  Throughout the afternoon, Mom  was apparently sometimes very agitated and was trying to “get out.”  She also continued to be very resistant to any help or suggestions that she take food or water or medicine.  It sounds like the late afternoon and evening were a really tough time for the care givers.  Michael and Dad, Terry and Tom were there.

One thing we’ve talked about is how hard it is to have the dual role of care giver and relative.  Dad hasn’t had the space or time to allow himself to take in what is going on from the role of husband because he has been so consumed with caring for Mom’s moment-to-moment needs.  After declining (really everything but notably) the suggestion that we move Mom to the Hospice Center so Dad and Michael and I could have a needed break, Mom whispered to the nurse,”yes.”

So around 8 or 9 last night, they brought an ambulance to our house, and they took Mom to the Hospice Center in Fitchburg. Michael said it went pretty smoothly.  Poor Mom hasn’t been too cooperative for the last day or so, so I was worried about the move, but it sounds like it went alright.

It seems to me like Mom is in a similar mental place as I was when I was in labor with Andrew.  I retreated to what felt like a small, dark cave or tunnel where I felt like I was taking refuge from the pain of labor.  It was a major effort to pull myself out of that place to try to interact with a doctor or anyone.  Mom has been so mentally inverted the last day or two.  As I am getting ready this morning to drop Andrew off at daycare and head over the Hospice Center for the day, I find myself hoping that Mom will look at me when I come in her room.  That her eyes will register that I’m there.  That we could hold hands or cuddle or even talk.  But unless things have improved quite a bit since her move, I don’t think any of those things will happen.  My dear, sweet mommy has retreated to some place where she can’t reach out to us anymore.  Or maybe not.  I’ll see today.

Dad stayed with Mom at the Hospice Center overnight.  Michael was on his way to pick him up this morning.  Last night, Mom’s brother Peter and his wife Marci drove up from Iowa to be with us.

I’ll bring my laptop to Hospice today in case the center has wireless internet.  I’ve received some really nice emails from people in the last days and weeks.  Thank you so much.  It feels really good to know that so many people care about Mom and about Dad and about me.

That’s the update for now.
~Althea

Aug. 27:  7 pm.  I’m feeling pretty ragged tonight.  I think the effects of being up last night and a really full, hard day.
I left Mom’s house at about 1:30 to go home to nap.  Mom had been sleeping and crying, but was generally very quiet from 5 am to 1 pm.  In the afternoon, Dad napped in one of the kids’ beds while Michael sat and kept watch over Mom.  It was a good thing he was right there, because at one point she decided to stand up and was apparently unsteady enough that she probably would have fallen if he hadn’t been there to steady her.

I called home at about 5:45 tonight, and the nurse was meeting with Dad and Michael.  They went up and tended to Mom, and gave her some liquid oral medication to help deal with anxiety and confusion.  We asked if we could have some too because we are anxious and confused.  The nurse didn’t seem to think that was a good idea.

I was on speaker phone for much of that visit.  It sounds like Mom will be staying at home tonight, and we may look at moving her to the Hospice center tomorrow.  In a little bit, I expect to hear back from Dad and Michael to work out a schedule for watching over Mom through the night.  That’s the pretty low update for now…
~Althea

Aug. 27: 12:20 pm.  Our Hospice nurses and social worker have recently left, and I finished making some initial phone calls, so now it’s time for a web update.  And the update is that we are going to hold tight.

The nurses and our social worker talked to us quite a bit about what has been going on over the last couple days.  They also did an examination of my mom up in her room.  At this time, they don’t feel like she has any care needs that aren’t being attended to here at home.

After last night’s events, my dad is feeling really overwhelmed and like she needs greater, more 24 hour care than what we are able to provide here at home.  Right now, though, Mom isn’t interested in moving from the bed at all and declined several suggestions that we move her to the Hospice center.

At the moment, Dad and Terry and Michael have gone out to get some lunch, Maretta is holding down the fort at my house, her fiance, Kyle, is on the way down to see her from St. Paul, and Joe just arrived with his friends from their multi-thousand-mile-trip to Bowdoin.  Mom has been sleeping for the last seven hours or so.

So we’re in a bit of a holding pattern. We have someone from Hospice coming by early this afternoon to help Mom do some self-care.  Then we have another nurse coming by this evening.  Michael and Dad and I are going to figure out a way of doing shifts so that someone is able to respond to any of Mom’s needs throughout the night while the rest of us get some rest.

The nurses seemed to think that in the next 24 hours or so we would be able to tell if Mom has hit a plateau of sorts or if she is going to experience more of a decline. In terms of care, the entire emphasis at this point is on keeping her comfortable and safe.  Feels like it’s been a big day already!

I’ll continue to update as the situation moves forward.
~Althea

Aug. 27: 7 am.  This sure isn’t easy.  I feel like with things with Mom’s health that we’ve been kind of feeling our way along and getting through half-days, making Mom comfortable and tending to her needs.  It makes it hard to see where we’ve been and where we’re going.  The last day or two, though, have been mostly unremarkable but overall pretty troubling and hard.

Mom’s become slowly but increasingly confused and unresponsive and so very, very tired.  Last night we called Hospice and spoke to a nurse because we were concerned about her confused mental state and about how little food she’s eaten in the last day.  The nurse was very kind but said that all the symptoms and signs that Mom is exhibiting are normal for someone in a declining state.  She has medications for pain and for nausea and for anxiety, so that’s mostly what they have for treatments for her right now.

I took Maretta home with me last night.  The last week or so has really worn her ragged, and I worry that she has reach the limits of her ability to deal with Mom and the situation at home for at least a while.

At about 3 am, my dad called me at home because Mom had thrown up in bed.  I came over to help him clean up, and a Hospice nurse came over around 4 am to check on Mom and to talk with us.
Mom is in tough shape, and for the moment, her approach to questioning reminds me a bit of Andrew…”No” to most questions…and that includes mostly queries about medicine or drink or blankets.  She says she just wants to sleep.

At this point, Mom is sleeping in bed.  Actually, in the baby monitor I have sitting next to me, I can hear both Mom and Dad breathing sleepily together.

Our social worker, Mary, and our RN, Jenny, are going to come over this morning…we should find out what time about 8:30 am.  I’ll post an update after our conversation with them.
~Althea

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.